What to worry about
Here’s a list of things you should spend your time and energy worrying about when you book a session with me..
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Oh wait - spoiler alert… it’s NOTHING!
Literally nothing.
Just in case you don’t believe me though, here are some things you miiiiight be stressed about but I’m going to try to convince you otherwise.
#1 for almost everyone is... what should we wear??
I got you covered.
My client closet is full of unique, one of kind dresses for women, tons of children’s clothes, options for men and loads of accessories. You likely don’t need to purchase anything additional for your session at all! I just had a mama come to the studio yesterday who spent over an hour with me, trying on dresses and finding the perfect one that made her feel beautiful and left feeling so much better about having clothes picked out for her kiddos she didn’t have to buy (or wash!) If you do want to purchase your own clothes I have an online styling site that will help coordinate outfits and help you create beautiful and shoppable style boards. Easy!
uncooperative kids
Giiirrllll… I’ve been training for this my whole life. I have 5 of my own (4 of which are boys - enough said). No one’s kids cooperate perfectly during a photoshoot. As long as we keep it positive and fun I promise you we’ll capture amazing photos and you’ll walk away having good memories to cherish along with the photos. I have yet to see a kid who gave me genuinely happy smiles after being threatened or yelled at. Just show up ready to love and snuggle and go with the flow and it will all work out. Let me worry about them - not you.
Bruises, scratches and scrapes, OH MY!
I tell this story often - in fact I just told it yesterday to a mama on the phone who was worried about her upcoming photo session and the (of course) scrapes and cuts her kids had just gotten (of course).
The first year we had our family photos professionally done I planned for everything to go perfectly. Instead my oldest kid broke his arm and had a bright orange cast on, the 2nd kid got a black eye the night before in the parking lot after his championship football game. The 3rd kid has special needs so was just her own entire book I could have written. The 4th cut a chunk out of the top of his beautiful blonde curly hair only a few days before the session (the first and only time he’s ever done that) and the 5th was SO shy that I swear to you if anyone he didn’t know made eye contact with him he would freak. It happened every time we went to the store and a nice old lady would look at his sweet cherub face sitting in the shopping cart, smile and say hi, only to immediately regret her decision and apologize profusely while he screamed and screamed. I told our photographer to completely ignore him and pretend like we had 4 kids. Not kidding.
Oh, and then we missed our turn, showed up late and locked our keys in our car.
I tell you this, because most things are fixable, I still LOVE those photos and we can laugh now about all the things that went wrong. And since we kept it positive I still have sweet memories to look back on.
an entire gallery of halfway decent photos
Every photographer runs their business a little differently and that’s ok! I choose to give out a limited number of digitals in my collections because I put a lot of time and care into each and every one. I would never slap a preset on and deliver the entire gallery. I LOVE photos. Obviously. My walls are filled with them. But I would personally rather have 1 amazing photo of every single person looking great than 10 of the same variation of pose but none that I love. I would rather print and display 20 photos I adore all over my house and fall in love with all over again every day than 200 of us looking mediocre that live on a zip drive because I don’t even want to print them.
Inconsistency
When I first started out there was a lot of inconsistency in my photos. I would have one session I loved where everything seemed to work, and then the next where it felt like it all went wrong. It took years to figure out the right combination of location, lighting, styling, camera settings, lens choice, editing, posing, prompting, session prep and allllllll the things. You should feel confident showing up to your session that your photos will look similar and have the same vibe to the ones I post online.
Never seeing your photos
I’ve heard so many horror stories of photographers not delivering photos and I’ve had my own experiences of memory cards failing, external hard drives not working, computers crashing and cameras breaking mid session. Just like everything else I’ve learned and grown and built over the years. You’ve probably never given a second thought on what memory card or how many your photographer is using or how they’re backing up their photos. And you honestly shouldn’t have to if your photographer is doing their job! But sometimes things go wrong. You can always rest assured that I shoot with dual cards so I have a backup of every photo immediately in case a card fails (they do) and I have enough cards that I never delete a session until it’s delivered (extra insurance). Everything on my external is backed up online so if that fails (they do and they have) I can easily retrieve them (extra extra insurance). I always carry an extra camera body with me in case the one I’m using breaks (it just happened last year). I make sure to have extra charged batteries in case of emergencies (literally just happened last night that my battery failed while I was 2 hours away from home at a photo shoot - never had that happen in 8 years! - thankfully I was prepared.)
I promise you - the best photo sessions happen when you relax, let me do the stressing, and just show up with the intention to capture exactly where you are in life. Everything else will fall into place.
Childhood Dreams
What did you dream about when you were a little girl (or boy)? What did you spend hours doing in your free time when the world was smaller and life was slower?
What was your answer to that omnipresent question every adult seemed to ask
“What do you want to be when you grow up?”
For me - - it was always an artist. It was the only thing I wanted to be, the only thing I could think of, the only thing that spoke to me. There was no other option. Well, besides a dog. There was a tinnnnny sliver of time that I wanted to be a dog and would crawl around the floor barking, insisting everyone call me “Colorful” and absolutely refusing to answer to any other name but that’s another story..
I used to spend my days coloring and glueing and taping. There’s a picture of me on my 3rd birthday holding my favorite present - my very own roll of Scotch tape. Way to be awesome and also kindof a cheapskate mom..
(and also thanks for finding this photo!!)
I would set up art galleries, making my mom purchase my masterpieces for $.10 a piece. (Can we say.. deal?!?) To this day I’ve never felt the same level of envy and jealous rage as I did the day that 2nd grade boy had the audacity to saunter into our 2nd grade classroom, open his backpack and reveal the brand new box of 96 (NINETY SIX!) Crayola crayons WITH crayon sharpener in the back.
I can still smell them.
But somewhere along the years that dream of being an artist died out. It wasn’t a practical career like a teacher or a doctor. You didn’t actually make money being an artist - I’d heard the term ‘starving artist’ right? That’s because they literally starved. On the streets. By themselves. I never took a single art class in high school and only in college when I was forced into being an Art Minor because of my major in Visual Communications did I attempt one. Talk about intimidation.. Did I mention I’d never taken an art class before besides that one quarter in 7th grade? And now I was thrown into a college art department with people who lived and breathed oil paints and charcoal fumes and who are artsy artsy. It’s a whole vibe there. It’s who they are to their core. And I was an imposter. As a result (and possibly to my ultimate benefit) I took as many photography classes as they would let me get by with to count as art credits. It seemed like the least intimidating “artist” thing compared to portrait sculpting or mutlimedia collages. I did end up with an art minor. But I would never have considered myself an artist.
The other day a friend of mine texted me a very sweet thank you for taking her family’s pictures and expressed her gratitude. She wrote..
“Your photos are the most magical of photos. You. Are. An. Artist.”
It stopped me in my tracks.
Am I?
It’s what I’ve wanted since I was a little girl. It was my dream since I can remember. But am I? Just like it took me a very long time to say I was “a photographer” instead of “ohhh.. I just kind of take pictures every once in awhile” I don’t know how long or if I could ever admit '“I am an artist.” I’m positive there are a bajillion people more creative and artsy than me. Would I even begin fit in with them? How would it change my life if I actually believed I was an artist?
So back to it... what did YOU want to be? And can those dreams still be a part of your life? I believe that we are our truest authentic selves as children - with the purest desires God placed in our hearts - before the pressures and opinions of the world change our thoughts and minds. Maybe the NFL career didn’t quite work out like that 8 year old boy dreamed of, but you can still volunteer to coach youth programs. Maybe you didn’t actually become a vet, but I bet your local animal shelter would love to see you. Perhaps the smell of yeast and flour makes your heart skip a beat and that bakery on the corner calls your name - - girlfriend.. there’s still time!! Our childhood dreams can still come true in some version of our adult lives. It’s never too late.
I don’t even know what my 6 year old self thought being an artist would look like. Was it coloring pictures all day? Because actually.. that’s pretty darn close to what I spend my days doing - just on the computer now. If that’s what I thought my future was as an artist. Then maybe I am. Maybe I did fulfill those little 6 year old girl’s dreams.
Now if someone would just start calling me “Colorful….”
To the Mom at Therapy for the First Time
I saw you walk in this morning. Carrying your sweet newborn baby swaddled in his infant carrier. I saw the brave look on your face as you approached the front desk. You were early for your appointment. Your paperwork all filled out. Insurance cards in check. You were ready for this. The older woman with you who I can only assume was your own mother was there with you for support. I saw you scan the room, tentatively gauging your place in this therapy center. I watched as you glanced our way and gave Ella a timid grin.
And honestly? I didn't think much of it. Sitting in waiting rooms with kids of various disabilities has become the norm to me. I don't bat an eye at seeing kids in wheelchairs, walkers, varying degrees of mental and physical disabilities. I'm used to it.
But you weren't.
After I loaded my kids up in the car and we started to drive away I glanced over at the doors to the therapy center and saw you rushing out. I saw you wiping tears from your face, struggling to breathe, desperately willing your emotions to keep in check. All the while failing while the tears ultimately won out and came streaming down your face, the walls of bravery crushing in around you.
I sat frozen. It felt like all the oxygen was sucked from my vehicle. And I was instantly transported back in time to 8 years ago when I was in the same place.
I don't know your story. I don't know your child's disability. Maybe you don't yet either. I don't know anything about you. Except in that moment I was you. And I knew everything about you.
I know how you're feeling. I know how dark it is right now. How the light seems so far out of reach. I know you're wondering why. What happened? What did you do to deserve this? I know this seems so unfair. It IS unfair. I know how much strength it took just to get to that building today.
You dreamed of spending hours snuggling him in his perfectly decorated nursery, not hours in hospital waiting rooms. You wanted to show him off to all your friends not get him prepped for another surgery. You planned to nurse him, but now you're feeding him through a pump. You dreamed of picking out t-ball uniforms, not medically handicapped strollers. You dreamed so many dreams about his future. And now they're gone.
I know how much you anticipated yet dreaded this day. How you agonized and planned and the effort it took. I know you would do absolutely anything to help your child, yet at the same time wishing with all your heart that it didn't have to be here. Anything but this.
I had to keep driving, yet I couldn't get you out of my mind. At the next intersection I turned my car around, promising that if you were still outside I would go talk to you, give you a hug, reassure you that it will be ok. That it's not that bad. That yes, it's scary, and it's not what you dreamed of when that sweet baby was kicking you from the inside, but there is light. So much light.
But you weren't there. You had already gone back inside to face the fears that threatened to destroy you. Because you are brave. And your child, this sweet baby that you're here for, will make you stronger than you ever knew you could be. This time will pass. And one day you'll wake up and hear the birds singing and feel the sunshine and realize you made it. You made it past that dark place. It's not all clear and it doesn't all make sense, but you will be a changed person, a stronger woman, and you will finally know it's going to be ok.
And honestly? I didn't think much of it. Sitting in waiting rooms with kids of various disabilities has become the norm to me. I don't bat an eye at seeing kids in wheelchairs, walkers, varying degrees of mental and physical disabilities. I'm used to it.
But you weren't.
After I loaded my kids up in the car and we started to drive away I glanced over at the doors to the therapy center and saw you rushing out. I saw you wiping tears from your face, struggling to breathe, desperately willing your emotions to keep in check. All the while failing while the tears ultimately won out and came streaming down your face, the walls of bravery crushing in around you.
I sat frozen. It felt like all the oxygen was sucked from my vehicle. And I was instantly transported back in time to 8 years ago when I was in the same place.
I don't know your story. I don't know your child's disability. Maybe you don't yet either. I don't know anything about you. Except in that moment I was you. And I knew everything about you.
I know how you're feeling. I know how dark it is right now. How the light seems so far out of reach. I know you're wondering why. What happened? What did you do to deserve this? I know this seems so unfair. It IS unfair. I know how much strength it took just to get to that building today.
You dreamed of spending hours snuggling him in his perfectly decorated nursery, not hours in hospital waiting rooms. You wanted to show him off to all your friends not get him prepped for another surgery. You planned to nurse him, but now you're feeding him through a pump. You dreamed of picking out t-ball uniforms, not medically handicapped strollers. You dreamed so many dreams about his future. And now they're gone.
I know how much you anticipated yet dreaded this day. How you agonized and planned and the effort it took. I know you would do absolutely anything to help your child, yet at the same time wishing with all your heart that it didn't have to be here. Anything but this.
I had to keep driving, yet I couldn't get you out of my mind. At the next intersection I turned my car around, promising that if you were still outside I would go talk to you, give you a hug, reassure you that it will be ok. That it's not that bad. That yes, it's scary, and it's not what you dreamed of when that sweet baby was kicking you from the inside, but there is light. So much light.
But you weren't there. You had already gone back inside to face the fears that threatened to destroy you. Because you are brave. And your child, this sweet baby that you're here for, will make you stronger than you ever knew you could be. This time will pass. And one day you'll wake up and hear the birds singing and feel the sunshine and realize you made it. You made it past that dark place. It's not all clear and it doesn't all make sense, but you will be a changed person, a stronger woman, and you will finally know it's going to be ok.
If you take your family on vacation..
It was the best of times.. it was the worst of times...
It was the not-so-annual-actually-we've-never-taken-our-family-on-vacation-without-it-being-a-CdLS-Conference-with-grandparents-there-to-help
Watkins Family Vacation.
It ranged from the highest of highs (and not just because we were in Colorado.. ba dum chhh!)
to the lowest of lows.. and quite possibly everything in between.
It was a bit like the book "If You Give A Mouse A Cookie."
"If You Take Your Family On Vacation"
by: The Watkins
If you take your family on vacation, you'll decide at the last minute to pull the kids out of bed in the middle of the night to get an early start on the drive, in anticipation that they will sleep most the way there.. they probably won't.
They'll just decide to start their day at 1 am, so excited that they think they can see your campsite in the mountains from 500 miles away.
Thinking of camping in the mountains will remind you to order all the groceries you need for the entire week while on your drive there so they're ready for you to just pick up after being in the car for 11 hours,
making you feel like the smartest human on Earth.
Until you realize you bought 3 bags of mini marshmallows instead of regular for roasting smores.
Thinking of smores on the fire will remind you of how hot it is. So of course on the most sweltering 95 degree day, despite having already fixed your air conditioner in your car (twice) before leaving,
it will break again.
While trying to schedule an appointment to get the A/C looked at, chances are it will be a holiday so nothing will be open.
Happy Birthday 'Merica
While you're remembering that nothing is open, you'll be in a hurry so obviously you'll manage to stop at the one gas station in town that only has a single outdoor stall and it will take a full 30 minutes to get your crew through the line.
You'll also spend a too-large majority of your trip sweating in 100 degree port-a-potties
while your children's colons decide to work overtime.
Or not at all.
While spending so much time at the bathroom you'll be reminded of the important lesson your oldest learned about why 6 dried apricots is the serving size and not an entire bag..
And while you're still thinking about the bathroom because with 5 kids SO much of your day revolves around that, you'll remember that even though your youngest has been night potty trained for a year and never has accidents
he'll wet through his sleeping bag on the very first night you're camping.
Having a pee-soaked sleeping bag will remind you that you geniusly picked the campsite with a laundromat on purpose, so you'll try to go wash his sleeping bag.
And find out that the laundromat is closed for repair.
Having dirty clothes and nowhere to wash them will remind you of when that same child randomly threw up all over the car after just turning onto the expressway and almost to Pike's Peak
with no wipes, extra clothes, or place to turn around.
Cleaning up his puke with a few random Kleenex's you found on the floor will remind you that even though you're coming off the healthiest year on record for your family with absolutely zero trips to urgent care or stomach bugs of any kind, somehow Ella's eye is mattering and stuck shut every morning, looking like some kind of the pink-eye type infection, your eye is starting to itch, and the child who hasn't had strep throat since he had his tonsils removed nearly 3 years ago is complaining of a sore throat and stomach ache.
Driving on the expressway and up Pike's Peak will remind you that you are terrified of traffic that is more than 2 lanes and/or 10 total cars on the road, and also of hanging off the side of a 14,000 foot mountain as your spouse is easily distracted by pretty mountain views while teetering mere inches from a 1000 foot plummet so chances are you'll get in a fight. Or two. While small voices from the backseat echo "I KNOW how to DRIVE." *giggle giggle*
All those giggles will remind you of the pack of kids that run wild at the park at your campsite with very little to no adult supervision every night. And if you to start to feel sorry for yourself that all the other adults get to relax at their campsite but you have to sit at the park and play ice cream store for the 1,000,000 time because you can't leave your developmentally delayed child alone, chances are you'll meet another little girl named Ella who sees nothing different about yours and plays endlessly without a care in the world, blissfully relieving you of your make-believe ice cream duties.
While playing with the other Ella and her sister, your Ella will suddenly have a potty emergency so as you scoop her up to run to the bathroom because you don't want her to pee her pants in front of her new friends, your phone that you've had back for a mere 3 days, that they MADE you spend $130 to fix a tiny crack in the corner of the screen in order for them to fix their own internal error, will fall out of your pocket onto a sharp rock and crack into oblivion.
Seeing that pointy rock will remind you of the comment your husband made about
"those rocks being so sharp they could pop your tire."
And chances are the next morning you will wake up with a flat tire.
Seeing the flat tire will remind you to get your car's AC in to get looked at. So you'll make an appointment and time it perfectly to be 40 minutes before your hair appt to get photos done, with assurance you can catch a shuttle and be there in time. You will wait in the lounge for 40 minutes only to be told the shuttle is still 30 minutes away and you will miss your appointment.
But you’ll probably be able to reschedule with another gal. And when she’s finished making you beautiful you will call for your shuttle and proceed to wait 1 1/2 hours for them to show up and while you’re waiting your phone battery will die.
So you’ll ask the lady at the counter if anyone has a charger you can borrow and she informs you that every single stylist in the building uses Android and not Apple. So you’ll have to go next door to buy a new charger pack. Which won’t work. Of course. So you’ll walk back to return it and buy a new one. Only to find out the outlet you’re using doesn’t work. And then to be told by the gal who styled your hair that she did, indeed, have an iPhone AND a charger.
You’ll finally get your phone to charge and call the shuttle driver for the 4th time and when he actually does show up you’ll be pretty positive he has been taking full advantage of filling his tanks at Colorado's finest Gas & Grass.
Which will remind you of some of the serious crazy directions Siri has given you on this trip and wonder if she's been doing the same..
Which will also remind you that even though you hardly ever go over your phone data for the month, this month you did before even leaving home so your internet usage will sloooooooow to snail's pace, adding an extra element of difficultly to depend on Siri for directions in the first place.
Siri's directions will manage to guide you to the beautiful location you chose to take your family photos though. So if you've been talking about swapping photo sessions with your talented cousin photographer for 3 years and finally drive 570 miles to make it happen, chances are your youngest will scream literally the entire time because of the horrors of wearing overalls, and after only a little time the heavens will open up pouring rain and hailing on an area that is in a drought every year. Except this year.
But you'll make the best of the situation and spend the evening with your cousins you haven't seen in 5 years playing Whirleyball (a mix of bumper cars/lacrosse/basketball)
and manage to even win a bowling game in your sleep (waking up every time it's your turn) because it's waaaaaay past your bedtime.
And the next few days that you spend with your family, watching your kids play with their second cousins that they've met only once, twice or not at all, depending on their ages, will be some of your favorite memories of the whole trip, reminding you that the simple things in life really are the best.
When you tell the kids it's time to leave they'll cry and complain and deny that they're tired at all.
But they'll do SO good on the 10 hour drive home and you'll barely hear a peep from them the entire trip. Which could also be attributed to the fact that you had to drive 85 mph down the interstate with the windows down because it's 90 degrees out and they couldn't get your AC fixed after the entire fiasco and the wind muffled basically everything, actually making it a curse and blessing in disguise.
But if you have absolutely zero expectations with relatively zero preconceived plans, chances are in a few months.. or possibly years.... and with a little luck from a mild case of amnesia, you’ll end up having the best memories ever.
Ella's Updates
I realized I haven't given much of an update since Ella's surgery and wanted to fill everyone in on what's going on around here!
Ella's 2nd surgery to repair her VPI went great. A big winter storm was coming in the night before she was scheduled which threw a big wrench in our plans (especially since my husband started a new job recently which includes him driving the snowplow, making it a tad more difficult to get away during big snow storms), and we ended up spending the night in the Ronald McDonald house before surgery. This was my first experience with the RMD house. Of course I've heard of them, donated some pop tabs here and there, but I was completely blown away by the hospitality and care they provided. I will admit I had been feeling a little sorry for myself prior to this. It didn't seem fair that Ella had to go through ANOTHER surgery. It didn't seem fair that WE had to go through another recovery. I was still traumatized by the first and honestly didn't know how we were going to get through the 2nd. I was in a bit of a "poor me" funk. After getting a tour of the house our first interaction was with a family whose child had a rare cancer and was there for his every-other-month chemo injection into his spinal cord. On top of that there was a newspaper article about that same family taped to the bulletin board about his Make-A-Wish where he could have chosen to do practically anything, meet anyone, travel anywhere, and the only thing we wanted was to have a pizza party for his entire school. He had missed so much school due to his treatments all he wanted was to be a "normal" kid eating pizza with his friends. Humble. Pie.
We also had a brief conversation with a man who was there with his son receiving therapy. We didn't talk to him long and I don't remember the whole story now, but there was something about him being up in Minneapolis for therapy for the past few months and now was moved down here and would need to be here for years. My attitude straightened up pretty quickly after that. The RMD house had everything you could think of needing. There were play rooms for the kids, movies, pool tables, meals and snacks they provided.. I was impressed. Between that and having mom and dad all to herself, Ella was living her best life. Until the next morning.. We woke up to a freshly fallen blanket of snow and even though I wasn't feeling quite so sorry for myself anymore, it's still beyond nerve wracking to send your child into surgery. I had so many emotions swirling and photography is often my way of dealing with all those big feelings so I had JJ snap a few photos before we left.
The surgery itself went great. We spent one night in the hospital and while she had a more difficult time coming out of the anesthesia (probably because she was under for longer - over an hour) the recovery was SOOOO much easier than the tonsillectomy. Even with getting Influenza one week post opp.. it was still much better.
We noticed a difference in her voice immediately. It is much louder, clearer and even has an entirely different tone to it. We had parent teacher conferences shortly after surgery and the big news around school was that one day at recess one of her friends dropped her glasses and Ella yelled out "MYLEE!!! You dropped your glasses!!!" And EVERYONE heard AND understood her. Apparently the entire class ran into the school telling their teacher about it, and teachers who were all the way across the playground heard her as well. So that was exciting!! I've also had many other people tell me they think her voice is much clearer and they can understand her better.
That being said, I can't say I've noticed a HUGE difference in her ability to say certain consonants or syllables. YET. My entire hope for this surgery was not that it would be an immediately "fix" but would give her the tools to be able to one day help with her speech, with the help of additional therapy.
She had some check ups the other week including cardiology (her heart looked good still) and a hearing test. Again. I was so excited for this test since she had her old ear tube removed in the first surgery, and ears cleaned and new tubes inserted in the 2nd surgery. I hoped we would get a good test result and FINALLY be able to decide if she needs hearing aids once and for all. Unfortunately when we got there her ears were full of wax again and she couldn't get a good reading. So our ENT squeezed us in on his lunch break and we had to clean out her ears. (NOT a fun process if you've never been through it with a child who is already a little traumatized by the ENT office from prior procedures.) After we finished her echocardiogram, we squeezed in another hearing test (it was a looooong day) and from there we could see that she still had fluid, but it was behind her ear tube. So the tubes are supposed to keep fluid out of her ears but I guess fluid can still pool behind the tube. (?) Our ENT thought it could have been remaining from her influenza 2 months ago so suggested we do ear drops and next time we come back we'll try again. I HOPE that we'll be able to get a clear answer either way. It's been over a year that we've been trying to get a good hearing test and even though I don't necessarily want her to have to get hearing aids, I know if it helps her it will be the best and I'm anxious to find out either way and finally move ahead.
In addition to all these appointments, Ella has also been busy at school lately with projects for her class. One day she was the "teacher" and read clues to her friends for them to guess the correct answer.
This week she taught them how to make bunny cars.
I love how accepted she is and how her curriculum can be adapted to include her AND her class which I truly believe helps everyone.
AND we're getting ready for our 6th Annual Ella's Run!! I know I've posted about this before and I will admit again that hosting this fundraiser is not my favorite thing to do. Not because it's that much work, and especially not because I've been so humbled and amazed and blessed by everyone's support. I just hate having to ask for help. To put myself in a position where I can't do it all by myself. I have a certain child who is my mini me in this regard and it's interesting to watch him.. he NEVER needs help with anything. He can do it himself thank you very much and sulks if there's something he's not good at and does require help. I'm learning a lot about myself by watching him..
I was having a conversation with a friend recently completely unrelated to this but we were talking about a family who could have applied for government benefits but was too prideful to accept any assistance. My friend stated "If I knew we would qualify I would absolutely swallow my pride if I knew it would help my kid." And that got me thinking. That is exactly why I do Ella's Run every year. It takes a lot for me to swallow my pride and I cringe on the inside the entire time, but I KNOW it is benefitting my daughter, so I will move mountains to make that happen. I am 100% certain that if we had not gone to the CdLS Conference last year we would have never even heard of VPI, not to mention getting it diagnosed. Our speech therapist didn't think she had it and even our ENT was hesitant to test her since he didn't hear it clearly as well. If it wasn't for us being there, meeting with that particular Behavior Therapist, me having that knowledge and pushing to get it tested we would NOT have found out. I've thought many times that maybe we're in a good place and we don't need to go to these Conferences anymore, but this year has proved to me again that it IS worth it and there are ALWAYS things we will need to learn.
So here we are! The 6th Annual Ella's Run will be May 11 at 9am so contact me if anyone wants to get signed up or order a tshirt! Our friends, along with sponsors from Thrivent Financial, have also donated a 50" TV to raffle off so contact me if you want to buy tickets for that as well. We appreciate everyone's support SO much!!
Ella's 2nd surgery to repair her VPI went great. A big winter storm was coming in the night before she was scheduled which threw a big wrench in our plans (especially since my husband started a new job recently which includes him driving the snowplow, making it a tad more difficult to get away during big snow storms), and we ended up spending the night in the Ronald McDonald house before surgery. This was my first experience with the RMD house. Of course I've heard of them, donated some pop tabs here and there, but I was completely blown away by the hospitality and care they provided. I will admit I had been feeling a little sorry for myself prior to this. It didn't seem fair that Ella had to go through ANOTHER surgery. It didn't seem fair that WE had to go through another recovery. I was still traumatized by the first and honestly didn't know how we were going to get through the 2nd. I was in a bit of a "poor me" funk. After getting a tour of the house our first interaction was with a family whose child had a rare cancer and was there for his every-other-month chemo injection into his spinal cord. On top of that there was a newspaper article about that same family taped to the bulletin board about his Make-A-Wish where he could have chosen to do practically anything, meet anyone, travel anywhere, and the only thing we wanted was to have a pizza party for his entire school. He had missed so much school due to his treatments all he wanted was to be a "normal" kid eating pizza with his friends. Humble. Pie.
We also had a brief conversation with a man who was there with his son receiving therapy. We didn't talk to him long and I don't remember the whole story now, but there was something about him being up in Minneapolis for therapy for the past few months and now was moved down here and would need to be here for years. My attitude straightened up pretty quickly after that. The RMD house had everything you could think of needing. There were play rooms for the kids, movies, pool tables, meals and snacks they provided.. I was impressed. Between that and having mom and dad all to herself, Ella was living her best life. Until the next morning.. We woke up to a freshly fallen blanket of snow and even though I wasn't feeling quite so sorry for myself anymore, it's still beyond nerve wracking to send your child into surgery. I had so many emotions swirling and photography is often my way of dealing with all those big feelings so I had JJ snap a few photos before we left.
The surgery itself went great. We spent one night in the hospital and while she had a more difficult time coming out of the anesthesia (probably because she was under for longer - over an hour) the recovery was SOOOO much easier than the tonsillectomy. Even with getting Influenza one week post opp.. it was still much better.
We noticed a difference in her voice immediately. It is much louder, clearer and even has an entirely different tone to it. We had parent teacher conferences shortly after surgery and the big news around school was that one day at recess one of her friends dropped her glasses and Ella yelled out "MYLEE!!! You dropped your glasses!!!" And EVERYONE heard AND understood her. Apparently the entire class ran into the school telling their teacher about it, and teachers who were all the way across the playground heard her as well. So that was exciting!! I've also had many other people tell me they think her voice is much clearer and they can understand her better.
That being said, I can't say I've noticed a HUGE difference in her ability to say certain consonants or syllables. YET. My entire hope for this surgery was not that it would be an immediately "fix" but would give her the tools to be able to one day help with her speech, with the help of additional therapy.
She had some check ups the other week including cardiology (her heart looked good still) and a hearing test. Again. I was so excited for this test since she had her old ear tube removed in the first surgery, and ears cleaned and new tubes inserted in the 2nd surgery. I hoped we would get a good test result and FINALLY be able to decide if she needs hearing aids once and for all. Unfortunately when we got there her ears were full of wax again and she couldn't get a good reading. So our ENT squeezed us in on his lunch break and we had to clean out her ears. (NOT a fun process if you've never been through it with a child who is already a little traumatized by the ENT office from prior procedures.) After we finished her echocardiogram, we squeezed in another hearing test (it was a looooong day) and from there we could see that she still had fluid, but it was behind her ear tube. So the tubes are supposed to keep fluid out of her ears but I guess fluid can still pool behind the tube. (?) Our ENT thought it could have been remaining from her influenza 2 months ago so suggested we do ear drops and next time we come back we'll try again. I HOPE that we'll be able to get a clear answer either way. It's been over a year that we've been trying to get a good hearing test and even though I don't necessarily want her to have to get hearing aids, I know if it helps her it will be the best and I'm anxious to find out either way and finally move ahead.
In addition to all these appointments, Ella has also been busy at school lately with projects for her class. One day she was the "teacher" and read clues to her friends for them to guess the correct answer.
This week she taught them how to make bunny cars.
I love how accepted she is and how her curriculum can be adapted to include her AND her class which I truly believe helps everyone.
AND we're getting ready for our 6th Annual Ella's Run!! I know I've posted about this before and I will admit again that hosting this fundraiser is not my favorite thing to do. Not because it's that much work, and especially not because I've been so humbled and amazed and blessed by everyone's support. I just hate having to ask for help. To put myself in a position where I can't do it all by myself. I have a certain child who is my mini me in this regard and it's interesting to watch him.. he NEVER needs help with anything. He can do it himself thank you very much and sulks if there's something he's not good at and does require help. I'm learning a lot about myself by watching him..
I was having a conversation with a friend recently completely unrelated to this but we were talking about a family who could have applied for government benefits but was too prideful to accept any assistance. My friend stated "If I knew we would qualify I would absolutely swallow my pride if I knew it would help my kid." And that got me thinking. That is exactly why I do Ella's Run every year. It takes a lot for me to swallow my pride and I cringe on the inside the entire time, but I KNOW it is benefitting my daughter, so I will move mountains to make that happen. I am 100% certain that if we had not gone to the CdLS Conference last year we would have never even heard of VPI, not to mention getting it diagnosed. Our speech therapist didn't think she had it and even our ENT was hesitant to test her since he didn't hear it clearly as well. If it wasn't for us being there, meeting with that particular Behavior Therapist, me having that knowledge and pushing to get it tested we would NOT have found out. I've thought many times that maybe we're in a good place and we don't need to go to these Conferences anymore, but this year has proved to me again that it IS worth it and there are ALWAYS things we will need to learn.
So here we are! The 6th Annual Ella's Run will be May 11 at 9am so contact me if anyone wants to get signed up or order a tshirt! Our friends, along with sponsors from Thrivent Financial, have also donated a 50" TV to raffle off so contact me if you want to buy tickets for that as well. We appreciate everyone's support SO much!!
The Doll
This past weekend we celebrated Christmas with a family water park adventure and sprinkled in some late birthday parties as well. For one of her presents Ella received a doll. A pink ballerina doll with a lacy tulle skirt, long dangley dancer legs, and a perfect bun atop her head. She loved it. She loves dolls and babies in general and this seemed like a bit more of a "big girl" doll, not a baby. I loved watching her hold it and twirl around, beaming with delight at her new treasure. I loved seeing her cradle it gently, compare their matching buns. I loved seeing the joy radiate on her face.
For 5 minutes.
See, after the party we were heading out of town when we decided to stop at the grocery store to pick up a few things. While I ran in, husband was to stay in the parking lot with the kids and rearrange the car seat order because no matter how many combinations we try NO ONE is EVER happy with their assigned seating chart and it is inevitable that someone will take offense by the horror of having to sit by a certain person, in a certain row, or next to a certain window and SWAT team level negotiations have to be made in order to get from point A to point B before we switch it around again. I rushed back to the car with my snap peas and shredded cheese, sure of the ensuing drama that was about to unfold, only to find them all snuggled in, some already half asleep, their bellies recently filled with pizza after a full day of swimming. Crisis averted. I climbed into my seat, clicked my seatbelt, turned my head, and that's when I saw it. The doll. The beautiful pink ballerina doll with sparkles in her skirt and perfection in her eyes. She was laying next to my seat. Splattered head to toe with mud.. no, not even mud. Nasty black road grime from the grocery store parking lot.
"What happened??" I half asked, half screeched, trying to stay calm as the words gurgled from my mouth.
"Happened to what?" Husband replied as he casually glanced my way. "Oh the doll? I don't know," as his eyes lazily turned back to the road. I continued to stare at the doll, horrified. My eyes bulged, heart rate increased. My breathing grew shallow. The beautiful, perfect pink doll was no more. It was ruined. Scarred. Maimed beyond recognition.
"What HAPPENED to the doll??" I screeched again, louder this time, with more emphasis so he would know this was not merely a casual question. "Did you drop it?" I asked accusingly. "How did it get muddy? Why was it even outside in the first place? How could you be so CARELESS??"
Husband looked at me like I was crazy. Understandably so. It was, afterall, just a doll. At least that's what he told me. But I couldn't hear him. In that moment the "just a doll" meant so much more. I don't know why or how but in those 5 blissful non tainted, stain-free minutes of owning her, that doll came to mean something to me. She took on a life of her own and somehow encapsulated everything it meant to be a mother and have a daughter. Beautiful and pink and sparkly and without blemish. It was a normal doll for a normal girl who adored it.
I love my daughter. SO much. But sometimes I still feel like I got cheated out of a deal. An under the table deal I wasn't even informed I was making yet somehow slipped through my fingers while everyone else around me raked in their spoils without hesitation. I don't get to enjoy all the things I dreamed of doing with a daughter. I don't, and won't, get to enjoy all the moments I thought we would share. I might not ever know what it's like to get her ready for her first date. Or try on wedding dresses. Or have slumber parties with a gaggle of giggling girls. I likely won't watch her play basketball with her friends or stand up in front of the school for the spelling bee. I'm not sure if she'll play in the band or perform in any school plays. There's so much of her childhood that doesn't seem fair or right or normal.
And then I remembered. The doll. The brand new beautiful doll with blond pig tails and long dangley legs I got when I was a young girl. The doll I clutched tightly in the Bomgaars parking lot when my mom told me I should leave her in the pick up because it was raining. The doll I refused to let go of. The doll I promised I would keep clean. The doll I swore I wouldn't drop. The doll I promptly plopped in a mud puddle the second I jumped out of the old Dodge truck. The doll I weeped for so many years ago because she was ruined, scarred, maimed beyond recognition. (some dramatics don't change with age..)
And that's when I realized. I was mourning this doll for our loss of a "normal" childhood, while the entire time, dolls getting muddy in parking lots IS a part of a "normal" childhood. Childhood, even having daughters, is not about pristine toys tucked away on a shelf to look pretty. They're about making messes and making mistakes and getting back up, cleaning ourselves off, and trying again. And again and again. (maybe this applies to marriage too??)
So just like my own mother did 30 years ago, I brought the doll home and tenderly scrubbed her face until she was maimed beyond recognition no more. . She wasn't stained. Or scarred. She does still have a slight lingering spray and wash scent but I'm sure that too will fade with time.
Having Ella is not what I thought having a daughter would be like. But then again.. very little about having my typical boys was what I imagined it would be either. Having kids in general, being a mother, it doesn't play out daily like it did in my dreams. Being a wife, raising a family.. not always what I thought.
But that doesn't mean it's not still good.
There's a possibility I might be a little more on edge this week because tomorrow Ella goes in for her second surgery to repair her VPI. Tomorrow morning around 11:30-12 her doctor will be taking a flap of tissue from the back of the throat (pharyngeal wall) and attaching it to the soft palate (velum). This flap forms a “bridge” to close the gap between the back of the throat and the soft palate. Two openings (called lateral ports) are left on each side of the flap. The openings allow her to breathe normally through the nose. (www.cincinnatichildrens.org/vpi)
The recovery should be similar to the tonsillectomy and since this isn't our first go around I know better what to expect and lets just say.. sometimes ignorance is bliss. Some people like to know all the details, but for me, NOT knowing is so much better than knowing. Her recovery from the tonsillectomy took so much longer than I thought it would. I expected the worst and in some regards it wasn't as bad as I thought it would be, and in some aspects it was so. much. harder. I am dreading this surgery. And the ensuing recovery. I'm successfully avoiding thinking about it by not packing a single thing so far for a (at least) 2 night stay in Sioux Falls even though we have to leave in a few hours to beat the winter storm, as well as having a play date this morning and getting groceries.. If you have some prayers to spare we would appreciate them! For safe travels in the storm, for a safe surgery, a successful repair, a non-traumatic stay in the PICU, a short(er) recovery, and mostly strength and patience for mom and dad!! And also that these surgeries will help improve her quality of life and speech dramatically! I am ready to be past these next few weeks and onto a better future!
For 5 minutes.
See, after the party we were heading out of town when we decided to stop at the grocery store to pick up a few things. While I ran in, husband was to stay in the parking lot with the kids and rearrange the car seat order because no matter how many combinations we try NO ONE is EVER happy with their assigned seating chart and it is inevitable that someone will take offense by the horror of having to sit by a certain person, in a certain row, or next to a certain window and SWAT team level negotiations have to be made in order to get from point A to point B before we switch it around again. I rushed back to the car with my snap peas and shredded cheese, sure of the ensuing drama that was about to unfold, only to find them all snuggled in, some already half asleep, their bellies recently filled with pizza after a full day of swimming. Crisis averted. I climbed into my seat, clicked my seatbelt, turned my head, and that's when I saw it. The doll. The beautiful pink ballerina doll with sparkles in her skirt and perfection in her eyes. She was laying next to my seat. Splattered head to toe with mud.. no, not even mud. Nasty black road grime from the grocery store parking lot.
"What happened??" I half asked, half screeched, trying to stay calm as the words gurgled from my mouth.
"Happened to what?" Husband replied as he casually glanced my way. "Oh the doll? I don't know," as his eyes lazily turned back to the road. I continued to stare at the doll, horrified. My eyes bulged, heart rate increased. My breathing grew shallow. The beautiful, perfect pink doll was no more. It was ruined. Scarred. Maimed beyond recognition.
"What HAPPENED to the doll??" I screeched again, louder this time, with more emphasis so he would know this was not merely a casual question. "Did you drop it?" I asked accusingly. "How did it get muddy? Why was it even outside in the first place? How could you be so CARELESS??"
Husband looked at me like I was crazy. Understandably so. It was, afterall, just a doll. At least that's what he told me. But I couldn't hear him. In that moment the "just a doll" meant so much more. I don't know why or how but in those 5 blissful non tainted, stain-free minutes of owning her, that doll came to mean something to me. She took on a life of her own and somehow encapsulated everything it meant to be a mother and have a daughter. Beautiful and pink and sparkly and without blemish. It was a normal doll for a normal girl who adored it.
I love my daughter. SO much. But sometimes I still feel like I got cheated out of a deal. An under the table deal I wasn't even informed I was making yet somehow slipped through my fingers while everyone else around me raked in their spoils without hesitation. I don't get to enjoy all the things I dreamed of doing with a daughter. I don't, and won't, get to enjoy all the moments I thought we would share. I might not ever know what it's like to get her ready for her first date. Or try on wedding dresses. Or have slumber parties with a gaggle of giggling girls. I likely won't watch her play basketball with her friends or stand up in front of the school for the spelling bee. I'm not sure if she'll play in the band or perform in any school plays. There's so much of her childhood that doesn't seem fair or right or normal.
And then I remembered. The doll. The brand new beautiful doll with blond pig tails and long dangley legs I got when I was a young girl. The doll I clutched tightly in the Bomgaars parking lot when my mom told me I should leave her in the pick up because it was raining. The doll I refused to let go of. The doll I promised I would keep clean. The doll I swore I wouldn't drop. The doll I promptly plopped in a mud puddle the second I jumped out of the old Dodge truck. The doll I weeped for so many years ago because she was ruined, scarred, maimed beyond recognition. (some dramatics don't change with age..)
And that's when I realized. I was mourning this doll for our loss of a "normal" childhood, while the entire time, dolls getting muddy in parking lots IS a part of a "normal" childhood. Childhood, even having daughters, is not about pristine toys tucked away on a shelf to look pretty. They're about making messes and making mistakes and getting back up, cleaning ourselves off, and trying again. And again and again. (maybe this applies to marriage too??)
So just like my own mother did 30 years ago, I brought the doll home and tenderly scrubbed her face until she was maimed beyond recognition no more. . She wasn't stained. Or scarred. She does still have a slight lingering spray and wash scent but I'm sure that too will fade with time.
Having Ella is not what I thought having a daughter would be like. But then again.. very little about having my typical boys was what I imagined it would be either. Having kids in general, being a mother, it doesn't play out daily like it did in my dreams. Being a wife, raising a family.. not always what I thought.
But that doesn't mean it's not still good.
There's a possibility I might be a little more on edge this week because tomorrow Ella goes in for her second surgery to repair her VPI. Tomorrow morning around 11:30-12 her doctor will be taking a flap of tissue from the back of the throat (pharyngeal wall) and attaching it to the soft palate (velum). This flap forms a “bridge” to close the gap between the back of the throat and the soft palate. Two openings (called lateral ports) are left on each side of the flap. The openings allow her to breathe normally through the nose. (www.cincinnatichildrens.org/vpi)
The recovery should be similar to the tonsillectomy and since this isn't our first go around I know better what to expect and lets just say.. sometimes ignorance is bliss. Some people like to know all the details, but for me, NOT knowing is so much better than knowing. Her recovery from the tonsillectomy took so much longer than I thought it would. I expected the worst and in some regards it wasn't as bad as I thought it would be, and in some aspects it was so. much. harder. I am dreading this surgery. And the ensuing recovery. I'm successfully avoiding thinking about it by not packing a single thing so far for a (at least) 2 night stay in Sioux Falls even though we have to leave in a few hours to beat the winter storm, as well as having a play date this morning and getting groceries.. If you have some prayers to spare we would appreciate them! For safe travels in the storm, for a safe surgery, a successful repair, a non-traumatic stay in the PICU, a short(er) recovery, and mostly strength and patience for mom and dad!! And also that these surgeries will help improve her quality of life and speech dramatically! I am ready to be past these next few weeks and onto a better future!
VPI Clinic
Today was Ella's VPI (Velopharyngeal Insufficiency) clinic with the ENT in Sioux Falls.
Velopharyngeal Insufficiency, as best as I can understand it, is a condition where the child has trouble moving or closing the soft palate during speech, causing air to leak into the nasal passage during speech production. Basically, as you speak, your palate moves to the back of your throat and needs to close all the way in order to create the suction needed to make certain sounds. Someone with an insufficiency wouldn't be able to close that gap, causing air leakage into the nasal cavity and consequently hypernasality and speech difficulties.
To test for this we first had an evaluation with a speech pathologist who met with Ella and listened to her speech, rating each letter she pronounced and determining if what she heard gave her reason to move further with the testing. It did. The next step was a video nasopharyngeal endoscopy where the ENT inserted a scope into Ella's nose that had a camera on the end. We were able to watch her palate on a tv screen and see if it was closing the way it should during speech. It wasn't.
And so it was determined that Ella does indeed have Velopharyngeal Insufficiency.
There are 2 different treatments of VPI. If the gap is small they can do an injection which would swell the pharyngeal flap in the back of the throat, helping to be able to block off the flow of air during speech. If it's a large gap a more extensive surgery is needed to move tissue into the pharyngeal flap and create a wall of sorts that would assist in decreasing airflow. Ella has the more severe type.
One of the concerns with this surgery is building up the wall too much, thereby increasing the risk of sleep apnea since she would still need to be able to breathe out of her nose while asleep. In order to decrease this risk a tonsillectomy is required before the VPI surgery.
So as of right now our plan is this.. Tonsillectomy surgery is scheduled for December 12. At that time the ENT will remove the tonsils and also the tube in her left ear. He will clean out the impacted wax and assess if there is middle ear fluid in her right ear. If there is, he will insert a new set of tubes at that time. Then in February she will go back for the VPI surgery to build up the wall on the pharyngeal flap. She will need to stay a night at the Children's Hospital to monitor her breathing during sleep and make sure the wall isn't too large. After that we will do another hearing test and hopefully be able to determine if hearing aids are necessary.
I have so many emotions about this diagnosis.
First of all...
SHOCK.
I really wasn't prepared for this. I knew there was a chance she could have VPI, but the only thought I had given it was IF she did have it, it would most definitely be the less severe one, requiring a simple injection which she would need to be sedated for, but would work out well since we need to get that tube out of her left ear anyways.. If there was a teensy thought in my brain that she would need the more extensive surgery, I had NO IDEA she would have to have her tonsils removed in a separate surgery only weeks earlier. That was a bit of a blow..
RELIEF.
Relief that maybe we've found an answer. A reason as to why her speech isn't progressing the way we want it to. As much as we don't want to have to put her through surgeries, it's nice to have something tangible that can be "fixed" instead of the constant "well... we don't really know why" we too often get.
FEAR.
Obviously. Even though these aren't particularly risky surgeries, any surgery comes with a chance of complications and that is only multiplied when you throw in genetic syndromes and kids who like to defy every rule in the book. I've also learned that any sickness with Ella is 10x worse than the other kids and I remember the last tonsillectomy recovery to be pretty darn awful so that's going to be a fun week. Or two. In addition, getting Ella to drink enough water on a regular day is a battle enough, I can't even imagine what she's going to be like after throat surgery. Twice. And our past relationship with dehydration is a bit rocky..
INDECISION
Should I schedule the surgery before Christmas or wait until after the holidays? I don't want to ruin any holiday fun, but I also want to get started and get it over with. Will she miss her Christmas party at school if I do it now? For the surgery in February will she miss her Valentine's Day Party? Does it matter?
EXCITEMENT
Excitement about the potential that this could be a game changer for her. If she was physically incapable of making certain sounds because of her structural anatomy, fixing that could open up a whole new world. Also, the tubes and ear cleaning could open up hearing possibility, potentially reducing the need for hearing aides and improving her speech as well. She has been so talkative lately and even coming up with stories from school to tell me randomly, some of which I can understand and interpret, and some of which I have to smile and nod. I know she wants to communicate more and I am excited to see how this helps her.
GUILT
She has been in speech therapy since nearly the day she was born. We have pushed her and encouraged her and practiced these sounds over and over, trying in vain to get her to pronounce things correctly.. and guess what? She couldn't. Physically couldn't. She was trying her hardest. Doing her best. And she couldn't.
THANKFULNESS
I mentioned one time that I had considered not going to the CdLS Conference last year because I was feeling guilty that I didn't think we needed the medical counseling or intervention that others did. But it was at that conference that the Developmental Pediatrician first mentioned VPI to us. If we hadn't been there.. if we hadn't met with her, how long would it have took us to notice this? Would we have ever? Could she have lived her entire life with speech difficulties that could have been fixed? So thankful we were there.
So lots of emotions to process over here. Praying for wisdom and strength that we're making the right decisions and all the surgeries go as planned. It's going to be a rough couple of months around here but we are clinging to the hope that it will all be worth it in the end!
Velopharyngeal Insufficiency, as best as I can understand it, is a condition where the child has trouble moving or closing the soft palate during speech, causing air to leak into the nasal passage during speech production. Basically, as you speak, your palate moves to the back of your throat and needs to close all the way in order to create the suction needed to make certain sounds. Someone with an insufficiency wouldn't be able to close that gap, causing air leakage into the nasal cavity and consequently hypernasality and speech difficulties.
To test for this we first had an evaluation with a speech pathologist who met with Ella and listened to her speech, rating each letter she pronounced and determining if what she heard gave her reason to move further with the testing. It did. The next step was a video nasopharyngeal endoscopy where the ENT inserted a scope into Ella's nose that had a camera on the end. We were able to watch her palate on a tv screen and see if it was closing the way it should during speech. It wasn't.
And so it was determined that Ella does indeed have Velopharyngeal Insufficiency.
There are 2 different treatments of VPI. If the gap is small they can do an injection which would swell the pharyngeal flap in the back of the throat, helping to be able to block off the flow of air during speech. If it's a large gap a more extensive surgery is needed to move tissue into the pharyngeal flap and create a wall of sorts that would assist in decreasing airflow. Ella has the more severe type.
One of the concerns with this surgery is building up the wall too much, thereby increasing the risk of sleep apnea since she would still need to be able to breathe out of her nose while asleep. In order to decrease this risk a tonsillectomy is required before the VPI surgery.
So as of right now our plan is this.. Tonsillectomy surgery is scheduled for December 12. At that time the ENT will remove the tonsils and also the tube in her left ear. He will clean out the impacted wax and assess if there is middle ear fluid in her right ear. If there is, he will insert a new set of tubes at that time. Then in February she will go back for the VPI surgery to build up the wall on the pharyngeal flap. She will need to stay a night at the Children's Hospital to monitor her breathing during sleep and make sure the wall isn't too large. After that we will do another hearing test and hopefully be able to determine if hearing aids are necessary.
I have so many emotions about this diagnosis.
First of all...
SHOCK.
I really wasn't prepared for this. I knew there was a chance she could have VPI, but the only thought I had given it was IF she did have it, it would most definitely be the less severe one, requiring a simple injection which she would need to be sedated for, but would work out well since we need to get that tube out of her left ear anyways.. If there was a teensy thought in my brain that she would need the more extensive surgery, I had NO IDEA she would have to have her tonsils removed in a separate surgery only weeks earlier. That was a bit of a blow..
RELIEF.
Relief that maybe we've found an answer. A reason as to why her speech isn't progressing the way we want it to. As much as we don't want to have to put her through surgeries, it's nice to have something tangible that can be "fixed" instead of the constant "well... we don't really know why" we too often get.
FEAR.
Obviously. Even though these aren't particularly risky surgeries, any surgery comes with a chance of complications and that is only multiplied when you throw in genetic syndromes and kids who like to defy every rule in the book. I've also learned that any sickness with Ella is 10x worse than the other kids and I remember the last tonsillectomy recovery to be pretty darn awful so that's going to be a fun week. Or two. In addition, getting Ella to drink enough water on a regular day is a battle enough, I can't even imagine what she's going to be like after throat surgery. Twice. And our past relationship with dehydration is a bit rocky..
INDECISION
Should I schedule the surgery before Christmas or wait until after the holidays? I don't want to ruin any holiday fun, but I also want to get started and get it over with. Will she miss her Christmas party at school if I do it now? For the surgery in February will she miss her Valentine's Day Party? Does it matter?
EXCITEMENT
Excitement about the potential that this could be a game changer for her. If she was physically incapable of making certain sounds because of her structural anatomy, fixing that could open up a whole new world. Also, the tubes and ear cleaning could open up hearing possibility, potentially reducing the need for hearing aides and improving her speech as well. She has been so talkative lately and even coming up with stories from school to tell me randomly, some of which I can understand and interpret, and some of which I have to smile and nod. I know she wants to communicate more and I am excited to see how this helps her.
GUILT
She has been in speech therapy since nearly the day she was born. We have pushed her and encouraged her and practiced these sounds over and over, trying in vain to get her to pronounce things correctly.. and guess what? She couldn't. Physically couldn't. She was trying her hardest. Doing her best. And she couldn't.
THANKFULNESS
I mentioned one time that I had considered not going to the CdLS Conference last year because I was feeling guilty that I didn't think we needed the medical counseling or intervention that others did. But it was at that conference that the Developmental Pediatrician first mentioned VPI to us. If we hadn't been there.. if we hadn't met with her, how long would it have took us to notice this? Would we have ever? Could she have lived her entire life with speech difficulties that could have been fixed? So thankful we were there.
So lots of emotions to process over here. Praying for wisdom and strength that we're making the right decisions and all the surgeries go as planned. It's going to be a rough couple of months around here but we are clinging to the hope that it will all be worth it in the end!
5K Motivation
I posted a blog a few months ago about how this was going to be a year of growing and learning and trying new things. I mostly meant in my photography business but somewhere along the way I got tangled up in some personal growth stuff as well. I've honestly never really given much thought to the idea. The extent of my personal growth background consisted of walking through the aisle at Barnes and Noble and giggling at all the "self-help" book titles out there.. "So Your Son is a Centaur", "How To Be Pope", "Knitting With Dog Hair,"or "How To Speak Cat." I don't even know..
Anyways, one day back in May I got a crazy thought in my head. Really crazy. I usually like to hear out the thoughts in my head, entertain them a bit at least, but this one just seemed a little out of control, pretty far fetched. It told me something I'd never heard it say before or ever expected it to say in my lifetime. Something that really sounded like a bad idea.. potentially dangerous.
It told me I should go for a run.
This voice made it seem like this "running" would be something enjoyable to do. Positive, if you will. Now let me preface this by saying I am NOT a runner. Oh sure it may look like I'm semi-in shape and I played sports and actually ran track in high school, but I am not kidding when I say that in track practice after therun jog around the block (we weren't fancy enough to have a track at our school) and actually only 3 sides of the block so roughly 300 meters, as a warm up for the rest of the team, would literally end me. I would be heaving in the intersection, partially collapsed near the stop sign, gasping and calling for oxygen, while stumbling around with my hands above my head to stop the ever increasing cramps that were sure to take my life shortly while the rest of the team took their "warm up" and joyfully continued on to their 10 mile run that was their actual practice. What in the world??? I was mainly a sprinter and jumper in high school (not really that great of one either..) and I absolutely hated it when my coach would make me run the 200m dash. Dash? There was no dashing involved. In my world, the 200 meter was akin to an Olympic marathon. One that I had to pace myself and conserve energy so as to be able to complete the long journey. Carb loading the night before was a must. I am not a long distance runner. It's just not something I'm naturally good at. I never have been. My entire life whenever I've heard someone say that they run for "fun" I assumed they were either 1. lying. or 2. certifiably crazy and I should back away verrryyy verrrrrryyyyy slowly. There's a man who runs Ella's Run every year who jogs a "warm-up" 5K before the actual race. What in the actual world... I'll be adding that to my list of wonders to ask God about someday..
This voice kept pestering me though. However, in keeping with my previous life story of primarily only doing things I'm good at, I wanted to ignore that voice. I knew I was not good at running. I knew I didn't enjoy it. I knew I would fail it it. But the voice was insistent. And weird. But eventually I listened. When my husband got home from work one day I informed him that I wanted to go for a run and after he picked his jaw up off the floor and wiped the puzzled look off his face, I laced up my 5 year old tennis shoes (might be an indicator of how often I work out that they're still in pristine condition..), closed the door to the sounds of my children gleefully guffawing about the prospect of their mother actually running, and took off down the road. That first night I made it an entire half mile. I was SOOOO proud of myself. I'm not even exaggerating. I hadn't run that far in years. I couldn't believe I did it! I hoped I had silenced that voice in my head, checked it off the ol' "life goal" list, and walked the rest of the way home, wheezing just a little. But a few days later, once I could walk again, the voice was back. I should run. Why? I don't know. Well.. I reasoned.. I ran a half mile the other day, I could probably do it again. But this time when I got to my half mile marker, I wondered if I could run a little further. One more block. Just to see. And this continued. Every few days I would get the urge to run, and each time I ran I tried to go just a little further than the last time. To the next electric pole, to the crick, past the dead badger on the road that's been there for a month (good motivation to get past the smell..). Until one day I ran an entire mile without stopping or dying. I couldn't believe it. I had not run an entire mile since the Standard Physical Education Test in 6th grade. No joke. At 33 years old I had done something I had not done in over 20 years.
I thought about stopping there but the next time I ran I still had that next electric pole in sight. Another thought started to creep into my head that if I could run a mile, well then maybe I could run a 5K, right? I mean.. people do that. I've seen it with my own eyes. That's only 3 times as far as I had just built up to running after an entire 2 months of training. *eye roll. But the scary thing was, I honestly didn't know if I could do a 5K. Like physically.. didn't know if I could do it. Remember in all my years of track I still couldn't make it around the block? I really didn't know if it was possible for my body to run that far and survive to tell about it. Maybe I had capped out at a mile. Reached my potential. I should accept my award, thank my colleagues and parents and husband and God and everyone who made this dream possible, and finish my running career at the top of my game. I kept it in the back of my mind but I honestly hardly entertained the thought. Because I didn't think I could. I wish I could tell you that I took my own advice about living without fear and regrets and challenging myself and not being afraid to fail, but I didn't. I wish I could tell you that I decided I could do hard things and signed up for the next 5K to keep me motivated, but I really didn't want to fail. So I didn't sign up. I wish I could tell you I was so focused on my goal that I sacrificed and trained hard every day to achieve it. But I didn't. I wish I could tell you I dreamed big dreams and set out to accomplish all that I could. But I didn't. I was too afraid of saying I was going to do something and then not being able to follow through with it, so I didn' say anything at all. But I did keep going a little further every day. Quietly, putting my head down, and taking a few more steps. And guess what? Pole by pole, dead animal by dead animal, eventually I did it. After that first mile, I ran a mile and a half, then 2, and eventually I ran an entire 3 miles. All at once. Without stopping. And I was still breathing. mostly
A few weeks ago I completed my first official 5K Race. I wasn't first. I wasn't last. But I finished. I still don't necessarily consider myself a "runner." I had intentions of buying actual running shoes, or maybe a arm band for my cell phone and better ear buds, but in the end I ended up wearing my half-a-decade old shoes, holding my phone, and swiping my 10-year olds headphones.. I'm not sure if running is something I'm going to continue to pursue or not. I can't say I necessarily enjoy the act of running, but I do enjoyhaving ran having run ranning. I enjoy when it's over.
It might not be a big deal to a lot of people. After all, I have friends who have run half marathons and full marathons, or family members who have done actual hard things like beat cancer.. but I'm still proud of myself for showing up and taking steps (literally) to be a better version of myself. Part of me wishes I would have set my big 5K goal at the beginning of the summer so I could write some motivational post about goal setting and not giving up and not being afraid to fail and if I can do it you can too and look how far I've come! But I'm obviously still quite the work in progress. Maybe it's ok that I didn't set big goals or dream big dreams. Maybe it's ok that I just literally put one foot in front of the other. Maybe it's ok that it took baby steps and not giant leaps. Maybe there's more than one way to get to your goal. Maybe there's more than one path to take. Maybe I'm just BS-ing to make myself look better. Either way..
The point is- No matter what you want to do or how you want to get there, even if you don't know or don't think it's possible, just start. Just show up. Take one step. And then another. It's scary to dream, but it's even scarier to think about a life without dreams. Don't be too afraid or caught up in not knowing how it's going to end or if you're going to be able to complete it. Live your best life. Be your best you. Listen to that crazy voice in your head every once in awhile. With caution of course. I still think 26.2 miles is a little too far.. ;)
Anyways, one day back in May I got a crazy thought in my head. Really crazy. I usually like to hear out the thoughts in my head, entertain them a bit at least, but this one just seemed a little out of control, pretty far fetched. It told me something I'd never heard it say before or ever expected it to say in my lifetime. Something that really sounded like a bad idea.. potentially dangerous.
It told me I should go for a run.
This voice made it seem like this "running" would be something enjoyable to do. Positive, if you will. Now let me preface this by saying I am NOT a runner. Oh sure it may look like I'm semi-in shape and I played sports and actually ran track in high school, but I am not kidding when I say that in track practice after the
This voice kept pestering me though. However, in keeping with my previous life story of primarily only doing things I'm good at, I wanted to ignore that voice. I knew I was not good at running. I knew I didn't enjoy it. I knew I would fail it it. But the voice was insistent. And weird. But eventually I listened. When my husband got home from work one day I informed him that I wanted to go for a run and after he picked his jaw up off the floor and wiped the puzzled look off his face, I laced up my 5 year old tennis shoes (might be an indicator of how often I work out that they're still in pristine condition..), closed the door to the sounds of my children gleefully guffawing about the prospect of their mother actually running, and took off down the road. That first night I made it an entire half mile. I was SOOOO proud of myself. I'm not even exaggerating. I hadn't run that far in years. I couldn't believe I did it! I hoped I had silenced that voice in my head, checked it off the ol' "life goal" list, and walked the rest of the way home, wheezing just a little. But a few days later, once I could walk again, the voice was back. I should run. Why? I don't know. Well.. I reasoned.. I ran a half mile the other day, I could probably do it again. But this time when I got to my half mile marker, I wondered if I could run a little further. One more block. Just to see. And this continued. Every few days I would get the urge to run, and each time I ran I tried to go just a little further than the last time. To the next electric pole, to the crick, past the dead badger on the road that's been there for a month (good motivation to get past the smell..). Until one day I ran an entire mile without stopping or dying. I couldn't believe it. I had not run an entire mile since the Standard Physical Education Test in 6th grade. No joke. At 33 years old I had done something I had not done in over 20 years.
I thought about stopping there but the next time I ran I still had that next electric pole in sight. Another thought started to creep into my head that if I could run a mile, well then maybe I could run a 5K, right? I mean.. people do that. I've seen it with my own eyes. That's only 3 times as far as I had just built up to running after an entire 2 months of training. *eye roll. But the scary thing was, I honestly didn't know if I could do a 5K. Like physically.. didn't know if I could do it. Remember in all my years of track I still couldn't make it around the block? I really didn't know if it was possible for my body to run that far and survive to tell about it. Maybe I had capped out at a mile. Reached my potential. I should accept my award, thank my colleagues and parents and husband and God and everyone who made this dream possible, and finish my running career at the top of my game. I kept it in the back of my mind but I honestly hardly entertained the thought. Because I didn't think I could. I wish I could tell you that I took my own advice about living without fear and regrets and challenging myself and not being afraid to fail, but I didn't. I wish I could tell you that I decided I could do hard things and signed up for the next 5K to keep me motivated, but I really didn't want to fail. So I didn't sign up. I wish I could tell you I was so focused on my goal that I sacrificed and trained hard every day to achieve it. But I didn't. I wish I could tell you I dreamed big dreams and set out to accomplish all that I could. But I didn't. I was too afraid of saying I was going to do something and then not being able to follow through with it, so I didn' say anything at all. But I did keep going a little further every day. Quietly, putting my head down, and taking a few more steps. And guess what? Pole by pole, dead animal by dead animal, eventually I did it. After that first mile, I ran a mile and a half, then 2, and eventually I ran an entire 3 miles. All at once. Without stopping. And I was still breathing. mostly
A few weeks ago I completed my first official 5K Race. I wasn't first. I wasn't last. But I finished. I still don't necessarily consider myself a "runner." I had intentions of buying actual running shoes, or maybe a arm band for my cell phone and better ear buds, but in the end I ended up wearing my half-a-decade old shoes, holding my phone, and swiping my 10-year olds headphones.. I'm not sure if running is something I'm going to continue to pursue or not. I can't say I necessarily enjoy the act of running, but I do enjoy
It might not be a big deal to a lot of people. After all, I have friends who have run half marathons and full marathons, or family members who have done actual hard things like beat cancer.. but I'm still proud of myself for showing up and taking steps (literally) to be a better version of myself. Part of me wishes I would have set my big 5K goal at the beginning of the summer so I could write some motivational post about goal setting and not giving up and not being afraid to fail and if I can do it you can too and look how far I've come! But I'm obviously still quite the work in progress. Maybe it's ok that I didn't set big goals or dream big dreams. Maybe it's ok that I just literally put one foot in front of the other. Maybe it's ok that it took baby steps and not giant leaps. Maybe there's more than one way to get to your goal. Maybe there's more than one path to take. Maybe I'm just BS-ing to make myself look better. Either way..
The point is- No matter what you want to do or how you want to get there, even if you don't know or don't think it's possible, just start. Just show up. Take one step. And then another. It's scary to dream, but it's even scarier to think about a life without dreams. Don't be too afraid or caught up in not knowing how it's going to end or if you're going to be able to complete it. Live your best life. Be your best you. Listen to that crazy voice in your head every once in awhile. With caution of course. I still think 26.2 miles is a little too far.. ;)
CdLS Conference
Whew! The kiddos are finally back in school
and it's time to start doing all those things I said I would do but haven't because there were 1000 kids living here all summer and I literally couldn't hear myself think at any given moment of any given day and refereeing arguments was my #1 job and boy did I own it.. By the way, does anyone happen to know where that mom went who used to write sappy back to school posts about not wanting her kids to leave and missing them? Hmmm... weird. I'm not actually sure either.. Anyways, all those things I said I would do and haven't? Starting with updating this blog about our CdLS Conference trip! Well, actually the first thing I did when they went back to school was scrub this sticky floor because summer + 5 kids = ew. But now that that's checked off the list, to the blog we go. (And also thank-you's from Ella's Run are going out soon too! *hangs head in shame.. I ordered them immediately after Conference and had been waiting and waiting, and forgetting, and waiting for them to come in the mail until I just realized last week I was supposed to pick them up at the store. Oops..)
Way way waaaaaayyyyyy back in June (it feels like a long time ago) we were able to attend the National CdLS Conference in Minneapolis which is just a hop, skip and a jump away from us so YAYYY for saving lots of money on airfare! This was our 4th Conference which is just ridiculous that time has gone by so fast that it's even a possibility that we've been involved with this community for this long but also WOW, what a blessing that we've been able to attend all of them since Ella has been born and we learned about CdLS for the first time! We were able to drive up a few days early and stay at my aunt & uncle's cabin about an hour south of where the Conference was. It was SUCH a nice few days of getting away for our family (besides Hudson spiking a 102 fever on the drive there..). We were able to fish, boat, swim, play games, relax and just hang out together. Perfect vacation!
One of the most heartwarming parts of Conference is the dance party after the banquet on Saturday night. I wish everyone could experience it. Kids and parents and grandparents and doctors and therapists of all ages, sizes, colors, nationalities, developments, verbal, nonverbal, mobile or not, out there on the dance floor celebrating life together! What a joy to see people of all abilities out there sharing that beautiful space together. The teen boys who were volunteering at Conference and out there dancing with all the CdLS-ers?? Hand me a tissue. The whole box.
We had an amazing 5 hour car ride home (seriously!) Sunday morning with only ONE stop (can you even believe it??). Well... actually there was 2 but I'm going to choose to not count the first one that occurred before we were even out of city limits in the pouring rain for the 2 year old that someone was supposed to take potty but apparently didn't.. ahem. Anyways, the kids were so well behaved on the way home and Ella and Levi giggled and laughed the entire last hour which we were just delighted with. Until we actually got home and realized they had broken into the bag of snacks and were throwing Cheetos and Oreos allllllll over the back seat and there were crumbs literally in every crack and crevice. So that's what was so funny, huh?
We really had an amazing trip and are so thankful for all the support and encouragement and love our friends and family community shows Ella! I have to admit I was a little hesitant about this Conference before going. I started to get a little insecure.. like, maybe we shouldn't be going to these Conferences after all. Maybe we aren't going to fit in anywhere. Maybe we've been to enough. Maybe it's selfish to go to our fourth when there are others who have never been able to attend a single one. Maybe we know everything we need to know and aren't going to learn any new information from the professionals. Maybe it's time to bow out. Step back. Take a break.
But I quickly remembered why we continue to make these Conferences a priority, why we continue to go. We go to encourage others who are just starting this journey and in turn be inspired by the ones who are ahead of us. We go to expose our children to people of all abilities and make it the norm for them to see. We go to show them love and make room in our own hearts for love and acceptance to grow. We go to grow as individuals. We go to learn about new ways to care for and provide the best life for Ella. We go to truly remember what's important and relationships and connections are at the top of the list. We go to have community with members of this club that no one ever wanted to belong to. We go because there is space at the table for anyone and everyone there and we want to be a part of it.
You know what's funny? Our kids who are younger than Ella have never asked about why she's different. We talk about CdLS openly, but they've never once asked what it means. Hudson turned 5 this summer and is a very bright and observant child. I wondered if he would ask why we were doing 'Ella's Run' this year. Why does Ella get a run and not him? Nope. I thought for sure he would ask why we went to Conference. Where we were and why we were staying at this random hotel and leaving him in childcare with these random people for the first time in his life? Nope. I thought he would notice the kids in the lobby and dining hall with obvious disabilities, limb differences, wheel chairs.. Nope. He sees no differences. And that's exactly the way we want it to be.
and it's time to start doing all those things I said I would do but haven't because there were 1000 kids living here all summer and I literally couldn't hear myself think at any given moment of any given day and refereeing arguments was my #1 job and boy did I own it.. By the way, does anyone happen to know where that mom went who used to write sappy back to school posts about not wanting her kids to leave and missing them? Hmmm... weird. I'm not actually sure either.. Anyways, all those things I said I would do and haven't? Starting with updating this blog about our CdLS Conference trip! Well, actually the first thing I did when they went back to school was scrub this sticky floor because summer + 5 kids = ew. But now that that's checked off the list, to the blog we go. (And also thank-you's from Ella's Run are going out soon too! *hangs head in shame.. I ordered them immediately after Conference and had been waiting and waiting, and forgetting, and waiting for them to come in the mail until I just realized last week I was supposed to pick them up at the store. Oops..)
Way way waaaaaayyyyyy back in June (it feels like a long time ago) we were able to attend the National CdLS Conference in Minneapolis which is just a hop, skip and a jump away from us so YAYYY for saving lots of money on airfare! This was our 4th Conference which is just ridiculous that time has gone by so fast that it's even a possibility that we've been involved with this community for this long but also WOW, what a blessing that we've been able to attend all of them since Ella has been born and we learned about CdLS for the first time! We were able to drive up a few days early and stay at my aunt & uncle's cabin about an hour south of where the Conference was. It was SUCH a nice few days of getting away for our family (besides Hudson spiking a 102 fever on the drive there..). We were able to fish, boat, swim, play games, relax and just hang out together. Perfect vacation!
After a few days at the cabin we headed up to the hotel to get checked in to Conference. From the very minute we walked in we saw people from our tribe. Families we had connected with at past Conferences, people we had previously only known online and kids we could recognize were "ours" just by seeing them and were eager to get to know! There is just such a feeling of connection and acceptance between families there it's hard to describe!
We spent the next few days going to workshops and trying to take in all the information we could. Probably one of the best workshops was about special needs trust and financial planning. There is just soooooo much to learn and do to prepare for the future but we're taking baby steps to get there. We also met with specialists and learned things from the OT and Developmental Pediatrician that we've been able to implement at home and now working with at school as well. I am overwhelmingly thankful for these resources. Just earlier today I was chatting with the OT we saw at Conference and getting more information from her and that resource is PRICELESS. Having someone else on your team that is knowledgeable and helpful and another advocate can just feel like a huge weight off your shoulders when you're not sure where to turn or how to go about getting what you know your child needs. I may or may not have started my last email to her with 1. I love you. Professional or not? I care little..
On one of the evenings we were there, the city of Minneapolis even took part in Conference by lighting up the I-35 bridge purple for CdLS. Super cool!!
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| I was so surprised to meet sweet Aubrey who we had connected with through this very blog. Her and Ella could be sisters!! |
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| Representing Nebraska! |
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| These girls. Some with CdLS. Some not. Didn't matter. |
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| A.J. Ella and Lauren coming all the way from California to New Jersey |
We had an amazing 5 hour car ride home (seriously!) Sunday morning with only ONE stop (can you even believe it??). Well... actually there was 2 but I'm going to choose to not count the first one that occurred before we were even out of city limits in the pouring rain for the 2 year old that someone was supposed to take potty but apparently didn't.. ahem. Anyways, the kids were so well behaved on the way home and Ella and Levi giggled and laughed the entire last hour which we were just delighted with. Until we actually got home and realized they had broken into the bag of snacks and were throwing Cheetos and Oreos allllllll over the back seat and there were crumbs literally in every crack and crevice. So that's what was so funny, huh?
We really had an amazing trip and are so thankful for all the support and encouragement and love our friends and family community shows Ella! I have to admit I was a little hesitant about this Conference before going. I started to get a little insecure.. like, maybe we shouldn't be going to these Conferences after all. Maybe we aren't going to fit in anywhere. Maybe we've been to enough. Maybe it's selfish to go to our fourth when there are others who have never been able to attend a single one. Maybe we know everything we need to know and aren't going to learn any new information from the professionals. Maybe it's time to bow out. Step back. Take a break.
But I quickly remembered why we continue to make these Conferences a priority, why we continue to go. We go to encourage others who are just starting this journey and in turn be inspired by the ones who are ahead of us. We go to expose our children to people of all abilities and make it the norm for them to see. We go to show them love and make room in our own hearts for love and acceptance to grow. We go to grow as individuals. We go to learn about new ways to care for and provide the best life for Ella. We go to truly remember what's important and relationships and connections are at the top of the list. We go to have community with members of this club that no one ever wanted to belong to. We go because there is space at the table for anyone and everyone there and we want to be a part of it.
You know what's funny? Our kids who are younger than Ella have never asked about why she's different. We talk about CdLS openly, but they've never once asked what it means. Hudson turned 5 this summer and is a very bright and observant child. I wondered if he would ask why we were doing 'Ella's Run' this year. Why does Ella get a run and not him? Nope. I thought for sure he would ask why we went to Conference. Where we were and why we were staying at this random hotel and leaving him in childcare with these random people for the first time in his life? Nope. I thought he would notice the kids in the lobby and dining hall with obvious disabilities, limb differences, wheel chairs.. Nope. He sees no differences. And that's exactly the way we want it to be.
13 years
13 years.. Can you believe it's been that long?
Could you have ever imagined we'd be where we are now?
Waking up in each others arms..
at 3 am...
to the sound of the dog barfing outside our bedroom door??
Darn Father's Day Fish Fry grease..
Every year has it's share of ups and..
well...
downs..
But this year in particular has held a lot of changes for us.
I wish I knew how you really felt about it..
I know starting my photography business has been exhausting at times.
It's taken a lot of energy
and determination.
But I admire how you're always willing to help me out..
when I'm testing my settings,
need help scouting locations,
Or even trying new poses...
I want you to know I see you.
And all you do for us.
You sure know how to make us happy.
And when we're strapped for enough seating arrangements,
we know we can always count on you
to be available.
Wherever we are.
Our life is crazy and chaotic at times,
But you always make it fun.
You embrace the chaos,
and saddle right up to the horse duck.
I love to watch you pursue your passions.
(sometimes while I can pursue mine at the same time..)
and share those passions with our kids,
teaching them so much about life along the way.
You are their greatest supporter
and biggest fan.
And also apparently a better nail painter.
You still romance me at Valentines Day in your own unique way
(and ultimately make me feel guilty for not doing anything nice for you..)
And you always make me feel beautiful even when.. wellll...
I love your silliness,
sense of fun,
and adventure.
You build the best snowmen,
and snow tunnels,
and have the most fun snowball fights.
Even the dog prefers you.
And you know what you're really good at?
That dance called "The Toothpick".
Some people might know it as "The Floss" but to you and in this house it shall forever be referred to as "The Toothpick"
So here's to 13 more amazing years of weathering life's storms together.
There's no one else I'd rather share this life with.
Good night.
Peace out.
Ella's Run in Review
It's that time of year again.. time for the FIFTH Annual Ella's Run!!! Can you believe it?? I can't. I can't believe it's been 5 years since we started organizing this event. I can't believe this summer will mark our FOURTH CdLS Conference we've been blessed to attend, which means the first one we attended was SIX YEARS ago and that flew by so incredibly fast and in another 6 years my oldest firstborn sweet baby boy will be a SENIOR IN HIGH SCHOOL and we'll be planning his graduation for the 2nd Saturday in May and I JUST DON'T WANT TO TALK ABOUT IT ANYMORE, OKAY????
Whew.. anyways... now that that's over. I wanted to do a review of Ella's Run. I think (hope.. pray) most everyone can see the benefits of what we're doing with the funds earned from Ella's Run. However, I get SUUUUUPER self conscious every year that maybe people think we're just being greedy or we don't deserve this (we don't actually) or we should stop fundraising or every single one of our sponsors and participants is secretly talking behind our backs and deciding not to support us anymore and every single person I'm going to ask is going to say no and I'm going to want to crawl in a hole for the entire rest of my days.. I know, I get dramatic. Thankfully every single year I am shocked and surprised and moved to tears when people say "Of COURSE! How else can we help? What else do you need donated?" There are some really good people out there..
Anyways, I know exactly what it takes to go to Conference, but it occurred to me that not everyone probably does. As an example, here is a basic estimate breakdown of our trips.
We are so so thankful for the generosity we've received to be able to bring our family to these Conferences - it's so important to us. It's absolutely true that every single donation and tshirt bought makes a difference and my all time favorite donation was from the old lady I didn't even know who mailed us a check for $5 because that's what she could give.. I will never forget her. However, the truth is, one Ella's Run barely raises enough money to cover just the Conference fees for one year. Which is why we hold the event every year even though Conference is every 2 years. We can save in the off year to help with the next one coming up. This year will be much less expensive for us since it's in Minnesota and we won't have the cost of airfare, but our hopes are that we can start saving again for the 2020 Conference, which is rumored on the East Coast (not a cheap place to visit I hear..)
I didn't necessarily want to include this as to not appear showy, but I think it's important to some people to see exactly where their money is going. Obviously like I said, this will be our 4th Conference that we've been able to attend due almost entirely to the generosity of our community. In addition as of this year, we will have donated over $2000 back to the CdLS Foundation. It would be easy for us to keep that money to help with more Conferences, but it's important to us to support the ones that have supported us. We have also been able to privately assist other families struggling to afford Conference, and we are paying it forward with my own photography business by donating over $1000 in sessions last year to local fundraisers in our own community. As my business grows I'm looking forward to giving back in even greater ways.
I mentioned earlier that in another 6 years my oldest will be graduating high school and heading off into the world which is just crazy because he's obviously 12 right now and still has trouble tying his shoes sometimes and there is just SO MUCH to teach him still so there's that.. and I know I said I didn't want to talk about it, but it made me think... It's so easy to say "right now isn't a good time" for doing things-such as going to these Conferences. It would have been so easy to look back 5 years ago and say "Nope. It's absolutely not possible for us to attend any of these conferences right now with our small children and growing family. And I remember doing that in Chicago when I heard the next Conference would be in California. I remember sitting there, staring at the screen when they announced the next location and wistfully thinking that it was too bad we wouldn't be able to go and bring all the kids. It would have been so easy to say "next time." Next time things will be different. Next time life won't be so hectic. Next time we won't have a new baby. Next time we'll have more money. If I would have said that though, we would still be waiting for next time. We would have never attended any of these Conferences, gotten any of the important medical advice we've gotten, never connected with dozens of other families. We wouldn't have the friends or connections we have now. We would be pining our life away, waiting for a better time. And guess what? Four years ago wasn't a good time. Two years ago wasn't a good time. This year isn't a great time. And I'm betting 2 more years down the road will be the same story. And there a strong possibility that that sweet baby boy I talked about would be graduating high school in 6 years while we still sat idly by, waiting for a "next time."
I understand there are times in your life that things just don't work out or it's not best for your family to do something and you obviously have to do what's best for you, but I know for us if I would have stayed in my little bubble none of these amazing trips would have happened. Organizing Ella's Run is a huge step out of my comfort zone. I have to, first of all, be organized, call people on the *gasp* telephone, ask for (gulp) money, speak in front of a group of people (ugghhh), plan ahead (not my strong point).. The list goes on and on why I am not qualified for this position. But I am determined to not waste my life waiting for "next time." One of the hardest yet most important lessons CdLS has taught me is that "next time" isn't guaranteed. I am faced with death and the loss of young children from this earth far more than anyone should be. Ella lost another sister this week, just a year younger than her. But the thing I've learned from the strong mothers who stand after their children have gone is they're so glad for the memories. They're so glad for the vacations, the trips, the ballet class, the boat ride, the time they spent together. Life is short. Life for people with CdLS can often be too short. So take the trip. Go for the experience. Make the memories. Get out of your comfort zone. It may not feel like it's the right time, but you never know when there won't be a next time.
Whew.. anyways... now that that's over. I wanted to do a review of Ella's Run. I think (hope.. pray) most everyone can see the benefits of what we're doing with the funds earned from Ella's Run. However, I get SUUUUUPER self conscious every year that maybe people think we're just being greedy or we don't deserve this (we don't actually) or we should stop fundraising or every single one of our sponsors and participants is secretly talking behind our backs and deciding not to support us anymore and every single person I'm going to ask is going to say no and I'm going to want to crawl in a hole for the entire rest of my days.. I know, I get dramatic. Thankfully every single year I am shocked and surprised and moved to tears when people say "Of COURSE! How else can we help? What else do you need donated?" There are some really good people out there..
Anyways, I know exactly what it takes to go to Conference, but it occurred to me that not everyone probably does. As an example, here is a basic estimate breakdown of our trips.
Conference fees: $2500
Airfare: $4000
Hotel: $1500
Extra food/parking/rental car/taxis: $1000
............................
For a grand total of $9000.
And thats without any extra "fun" stuff.
We are so so thankful for the generosity we've received to be able to bring our family to these Conferences - it's so important to us. It's absolutely true that every single donation and tshirt bought makes a difference and my all time favorite donation was from the old lady I didn't even know who mailed us a check for $5 because that's what she could give.. I will never forget her. However, the truth is, one Ella's Run barely raises enough money to cover just the Conference fees for one year. Which is why we hold the event every year even though Conference is every 2 years. We can save in the off year to help with the next one coming up. This year will be much less expensive for us since it's in Minnesota and we won't have the cost of airfare, but our hopes are that we can start saving again for the 2020 Conference, which is rumored on the East Coast (not a cheap place to visit I hear..)
I didn't necessarily want to include this as to not appear showy, but I think it's important to some people to see exactly where their money is going. Obviously like I said, this will be our 4th Conference that we've been able to attend due almost entirely to the generosity of our community. In addition as of this year, we will have donated over $2000 back to the CdLS Foundation. It would be easy for us to keep that money to help with more Conferences, but it's important to us to support the ones that have supported us. We have also been able to privately assist other families struggling to afford Conference, and we are paying it forward with my own photography business by donating over $1000 in sessions last year to local fundraisers in our own community. As my business grows I'm looking forward to giving back in even greater ways.
I understand there are times in your life that things just don't work out or it's not best for your family to do something and you obviously have to do what's best for you, but I know for us if I would have stayed in my little bubble none of these amazing trips would have happened. Organizing Ella's Run is a huge step out of my comfort zone. I have to, first of all, be organized, call people on the *gasp* telephone, ask for (gulp) money, speak in front of a group of people (ugghhh), plan ahead (not my strong point).. The list goes on and on why I am not qualified for this position. But I am determined to not waste my life waiting for "next time." One of the hardest yet most important lessons CdLS has taught me is that "next time" isn't guaranteed. I am faced with death and the loss of young children from this earth far more than anyone should be. Ella lost another sister this week, just a year younger than her. But the thing I've learned from the strong mothers who stand after their children have gone is they're so glad for the memories. They're so glad for the vacations, the trips, the ballet class, the boat ride, the time they spent together. Life is short. Life for people with CdLS can often be too short. So take the trip. Go for the experience. Make the memories. Get out of your comfort zone. It may not feel like it's the right time, but you never know when there won't be a next time.
Magic in the Moments
Confession time: I've been struggling a little bit lately.
If you follow my instagram page at all you might be aware that I'm doing a 365 project where I post a picture every day of our lives. I'm loving being intentional about photographing my family and editing every day keeps me more on track than.. oh say.. the past 7 years or so where I've barely editing or printed ANY pictures of my children because I'll do it "someday".. *hangs head in shame* You may have also noticed that I tend to post a lot of photos that capture a snippet of our happy days together. Kids splashing in puddles, snowflakes on tongues, puppy snuggles.. basically the essence of the perfect childhood and family life.
Which would be in direct contrast to this blog I seem to remember writing at one point..
I feel like my entire social media existence up until this point has been about being real and raw and honest and not sugar coating or acting like life is perfect or my kids are perfect or my house is perfect and now here I am.. posting only pictures of us frolicking in puddles and and dancing in sunbeams and playing with newborn puppies and tra la la!! It's felt a bit traitor-ish to me because I know our lives do not look like that on a daily basis, yet I'm in this constant struggle of wanting to create beautiful images, while being true to myself and not creating a lie about what our lives look like.
And then I realized something.
Motherhood.. and parenthood... and heck, just lifehood (ok.. I made that up) is full of ups and downs and hard moments and tears and tantrums and messes and sleepless nights and muddy boots and exhaustion and arguments and sometimes it seems like those things will never end. But tucked in there.. (I think it's somewhere between the spilled milk and cracker crumbs) are magical moments. Magical everyday moments. Sometime they get buried under the every day stuff, but they're there. Tucked in to the folds of everyday life.
The moment your baby takes his first steps.
The moment you hear the words 'mama' for the first time.
The moment those sweet chubby arms wrap around your neck and squeeze a big hug.
The moment she leans her head against your chest and falls asleep.
The moment his little hand reaches up to hold yours.
The moment she colors you a picture or writes her name.
The moment he picks you a bouquet of wildflowers.
The everyday moments where laughter fills the walls and the pitter patter of footsteps echoes down the halls.
There is magic in these moments. I don't want to be too busy or overwhelmed or tired to look for them. I want to choose to see them for what they are, and remember these moments.
It's all about perspective and how you choose to look at things.
I could choose to look at this setting and see a messy toy room for what it is. A messy toy room. A room that desperately needs cleaned but will go back to looking like this in 5 minutes or less so what's the point? This is how I could choose to view most of my days. Looking down at my children, seeing the endless to-do lists and bills to pay and forms to sign and things to clean and pick up and put away and organize..
These photos were taken only a few minutes apart. Yet isn't the difference dramatic?
This isn't simply a comparison of the difference between a "nice" camera and a cell phone shot, but instead the real difference is simply perspective. Perspective to look past the mess and see the beauty that was right in front of me all along. To stop for a moment. Get down on the ground. On my children's level. To get up close and see and hear and feel and touch and taste the things that truly matter. (Ok, I didn't taste the flowers, but you know what I mean..)
That's what motherhood feels like to me. Being surrounded by a series of untimely messy moments and all of a sudden, when you're least expecting it, perhaps when you're feeling the most exhausted of all, a moment so beautiful it takes your breath away. A moment that has potential to pass you by if you're not present to see it. You have to be looking for it. You have to be willing to slow down and get down and experience it.
Because the thing is.. the magical moments don't always FEEL magical. I've been a stay at home mom for nearly 12 years so sometimes when we're building with blocks and it's the actual 35,791 time I've built with these same blocks, well.. it's easy to feel bored with it. It's easy to overlook it as just "one more thing." But it's truly not. This is what I love about photography. The moment I pull out my camera and look through the viewfinder my entire perspective is transformed. I get to choose what I see. I get to choose how I want to tell my story. What I want to be in focus and what I want to blend into the background. The view through my lens can be narrowed and focused or wide open and bright. It depends on the type of lens I use or the setting I choose. But I get to choose. I get to choose what I see and how I feel and how I want to live and remember this moment. And all of a sudden the sunlight hitting the blocks truly IS magical and this day really is unique and full of potential.
Photography forces me to slow down and observe the details. The way my daughter's hair falls across her face in the evening light. The curled little toes of my youngest as he snuggles on the couch. The way he hugs his teddy bear tight or the way his blankie trails behind him as he climbs the stairs to bed.
Motherhood is full of beautiful moments. And I don't want to miss them.
So if you follow my photography at all and you're getting annoyed that I seem to be living a dream life with dream children in a dream home then you are obviously DREAMING!! But seriously.. please know that life is not all roses and puddles and sunsets and unicorns and fairy dust, all while holding hands and frolicking in gorgeous golden hour sunlight. Most days are hard and overwhelming and frustrating and I constantly feel like I'm not doing this motherhood thing right at all. But creating these images, capturing this fleeting moment in time that is so precious.. well it's just my way of discovering the magic in those moments.
If you follow my instagram page at all you might be aware that I'm doing a 365 project where I post a picture every day of our lives. I'm loving being intentional about photographing my family and editing every day keeps me more on track than.. oh say.. the past 7 years or so where I've barely editing or printed ANY pictures of my children because I'll do it "someday".. *hangs head in shame* You may have also noticed that I tend to post a lot of photos that capture a snippet of our happy days together. Kids splashing in puddles, snowflakes on tongues, puppy snuggles.. basically the essence of the perfect childhood and family life.
Which would be in direct contrast to this blog I seem to remember writing at one point..
I feel like my entire social media existence up until this point has been about being real and raw and honest and not sugar coating or acting like life is perfect or my kids are perfect or my house is perfect and now here I am.. posting only pictures of us frolicking in puddles and and dancing in sunbeams and playing with newborn puppies and tra la la!! It's felt a bit traitor-ish to me because I know our lives do not look like that on a daily basis, yet I'm in this constant struggle of wanting to create beautiful images, while being true to myself and not creating a lie about what our lives look like.
And then I realized something.
Motherhood.. and parenthood... and heck, just lifehood (ok.. I made that up) is full of ups and downs and hard moments and tears and tantrums and messes and sleepless nights and muddy boots and exhaustion and arguments and sometimes it seems like those things will never end. But tucked in there.. (I think it's somewhere between the spilled milk and cracker crumbs) are magical moments. Magical everyday moments. Sometime they get buried under the every day stuff, but they're there. Tucked in to the folds of everyday life.
The moment your baby takes his first steps.
The moment you hear the words 'mama' for the first time.
The moment those sweet chubby arms wrap around your neck and squeeze a big hug.
The moment she leans her head against your chest and falls asleep.
The moment his little hand reaches up to hold yours.
The moment she colors you a picture or writes her name.
The moment he picks you a bouquet of wildflowers.
The everyday moments where laughter fills the walls and the pitter patter of footsteps echoes down the halls.
There is magic in these moments. I don't want to be too busy or overwhelmed or tired to look for them. I want to choose to see them for what they are, and remember these moments.
It's all about perspective and how you choose to look at things.
I could choose to look at this setting and see a messy toy room for what it is. A messy toy room. A room that desperately needs cleaned but will go back to looking like this in 5 minutes or less so what's the point? This is how I could choose to view most of my days. Looking down at my children, seeing the endless to-do lists and bills to pay and forms to sign and things to clean and pick up and put away and organize..
Or I could choose to look closer and find the magic.
These photos were taken only a few minutes apart. Yet isn't the difference dramatic?
This isn't simply a comparison of the difference between a "nice" camera and a cell phone shot, but instead the real difference is simply perspective. Perspective to look past the mess and see the beauty that was right in front of me all along. To stop for a moment. Get down on the ground. On my children's level. To get up close and see and hear and feel and touch and taste the things that truly matter. (Ok, I didn't taste the flowers, but you know what I mean..)
That's what motherhood feels like to me. Being surrounded by a series of untimely messy moments and all of a sudden, when you're least expecting it, perhaps when you're feeling the most exhausted of all, a moment so beautiful it takes your breath away. A moment that has potential to pass you by if you're not present to see it. You have to be looking for it. You have to be willing to slow down and get down and experience it.
Because the thing is.. the magical moments don't always FEEL magical. I've been a stay at home mom for nearly 12 years so sometimes when we're building with blocks and it's the actual 35,791 time I've built with these same blocks, well.. it's easy to feel bored with it. It's easy to overlook it as just "one more thing." But it's truly not. This is what I love about photography. The moment I pull out my camera and look through the viewfinder my entire perspective is transformed. I get to choose what I see. I get to choose how I want to tell my story. What I want to be in focus and what I want to blend into the background. The view through my lens can be narrowed and focused or wide open and bright. It depends on the type of lens I use or the setting I choose. But I get to choose. I get to choose what I see and how I feel and how I want to live and remember this moment. And all of a sudden the sunlight hitting the blocks truly IS magical and this day really is unique and full of potential.
Photography forces me to slow down and observe the details. The way my daughter's hair falls across her face in the evening light. The curled little toes of my youngest as he snuggles on the couch. The way he hugs his teddy bear tight or the way his blankie trails behind him as he climbs the stairs to bed.
Motherhood is full of beautiful moments. And I don't want to miss them.
So if you follow my photography at all and you're getting annoyed that I seem to be living a dream life with dream children in a dream home then you are obviously DREAMING!! But seriously.. please know that life is not all roses and puddles and sunsets and unicorns and fairy dust, all while holding hands and frolicking in gorgeous golden hour sunlight. Most days are hard and overwhelming and frustrating and I constantly feel like I'm not doing this motherhood thing right at all. But creating these images, capturing this fleeting moment in time that is so precious.. well it's just my way of discovering the magic in those moments.
Chasing Dreams
Hello!! (Hellloooo Hellllooooo Hellllooooo...)
If I'm not mistaken that's the very understandable sound of distant echoes reverberating back to my woefully abandoned blog in the cyber world. *Hides head in hands..*
In case there's anyone still out there though......
I promise to try to explain this year of silence and you can bet I have big things to talk about and lots of thoughts in my brain to get out, but first - - - Ella.
She had an absolutely amazing year of Kindergarten. We were blessed with the best teacher we could have ever hoped for, another year with her amazing and dedicated aide, an entire school system that works with her to help her be her best, and friends who love and accept her for who she is. We couldn't ask for more!! She has become so much more independent.. She rides the bus in the mornings to school, she eats lunch without assistance, uses the bathroom mostly by herself (wish she would do that at home..). She writes her name (and other words), reads short stories, gives almost every kid in the hallway high fives on her way to breakfast, and talks up a storm.. I love when we have to tell her to be quiet!! She typically answers yes to almost every question you ask her "Did you ride a hippopotamus today?" "Uh huh.." but her last report card came home saying that lately she hasn't been wanting to read so when her teacher asks her to, she started replying "No thank you."Ha! At least she's polite...
That being said.. there are some things we struggle with. Of course. There are still occasional potty accidents, communication failures, discipline issues, etc. We do our best with all those, but one particular issue has had me stumped. Ella seems to have a really hard time with decisions. We've practiced a bit of "Love and Logic" parenting through the years which, if you don't know about it, involves giving your kid lots of choices so she feels in control of what's going on around her. It's always worked pretty well with our other kids, but for some reason it backfires dramatically with Ella. When we try to give her a simple choice such as "Would you like to wear the pink coat or the purple coat?", in theory it should help her feel more in control of her world by choosing something in it. Instead it sends her into a complete tailspin/meltdown. She will choose the pink coat, start to put in on, then say "No, no, no.. purple" to which we will switch to the purple, get it all the way on when she suddenly decides she actually does want pink so starts screaming and ripping her coat off to get to the pink one, only to throw herself on the purple coat, screaming and crying for what could be minutes to hours. I am not even exaggerating. This happens nearly every. time. I try to let her make a choice. It doesn't even matter if I don't let her change her choice and make her stick with the original one. So oftentimes I make the choices for her and move on with our day. It seems like she's afraid to make her own choices, to make a decision, to stand up for what she really wants.
This also happens when we try to encourage her to be independent. For example.. most days she is perfectly capable of dressing herself. But will she? Most days not. We're working on it. She is also technically able to walk to the car on her own. Often times we carry her. It is physically possible for her to put her coat on. But sometimes she refuses. And often it's because she seems scared. She doesn't want to try something new, or even something old, because she's afraid. Afraid to fail. Most kids go through a very determined, independent stage where they want to do everything themselves and try and try and try again. She's starting to do that. But she would often rather have us do it for her than try herself and not succeed.
It can be frustrating and aggravating and makes me feel so so helpless.
Like I said - it's like she's scared.. Maybe of making the wrong decision? Of not being perfect.?Of not making the "right" choice? Of not pleasing everyone? Of going against the grain? Of failing? Of being faced with regret?
Or maybe that's me.. (Upon further inspection my daughter and I might have a lot in common..)
Stay with me..
These situations have led me to give a lot of thought lately to fear. And regrets. What things do I regret doing in my life? Or more importantly.. what sort of things do I regret NOT doing in life? And what was holding me back? Was it fear?
As these years keep passing by it's becoming more and more obvious that our time here, our lives, are so very short. We have one shot at making this one life we have to live the best we can. I'm finding that my biggest regrets aren't things that I've done, but things I haven't done. Sure.. I mean there's that belly button ring that sounded like a really hot idea in high school that doesn't quite have the same look after 5 c-sections, but it's not like I'm planning on wearing a bikini anytime soon anyways.. No, actually the biggest regrets I have are things I've dreamed of doing, but then was too scared to take the plunge. Things I knew I wanted in my heart, but decided the risks were too risky. Things I wasn't strong enough to fight for.
Is that part of what Ella's feeling?
Is she scared of doing something she knows she wants? Too hesitant to make a choice that might be "wrong"?
I've started a new venture this year. Which now helps explain my absence from the blog..
Photography. It's something I've always loved - I practically minored in it in college. Over the years I've been passionate about taking photos of my own children, but I always said I never wanted to turn it into a business. I told people I didn't want to work all those nights and weekends. That I didn't want to run my own business. I told people I'd rather just take pictures of my own kids. But in reality? Was that really the whole reason I didn't want to pursue it? Or was I scared?
Of making the wrong decision.
Of not being perfect.
Of not making the "right" choice.
Of not pleasing everyone.
Of going against the grain.
Of failing.
Of being faced with regret.
One of my very earliest memories is of setting up an "art gallery" of my masterpiece drawings in my childhood living room anddemanding sweetly asking my mom come buy them from me. I only charged 10 cents a piece and to this day I still can't believe she didn't buy the whole studio because that is obviously a steal..
Anyways.. my point is. Maybe I always have had this artistic dream. Simmering. Waiting. Yearning to get out. But constantly being pushed under the surface because of my fears. My fears of not being perfect. Of failure. Of disappointing someone. In fact, I know I have always had this dream. My answer every year as a child of 'What do you want to be when you grow up?' was always always "artist." Except when I thought that wasn't the "right" answer. There were years that I didn't think an 'artist' was an actual profession. So I would tell people I wanted to be a teacher even though there was not a single ounce of me that wanted to be a teacher. I just thought that was the "right" thing to say. I mean.. it was safe at least. My mom was a teacher, two of my sisters are teachers. Both my grandparents were teachers. I assumed that must be what I 'should' be too.
But I'm learning something.
I don't want to live by what other people think I "should" do. Or what I think other people think I should do. Does that make sense? I don't ever want to regret not chasing my dreams. I don't want to get to the end of my life and look back, wondering how things could have been. I don't want to wonder "what if?" I want to KNOW that I lived this life to the fullest. That I didn't hold back because of fear. That I took risks. That I succeeded. That I failed. That I learned. That I tried. That I took the time to find me.
This past year has been hard. I don't like making mistakes. read: perfectionist. I seem to think things that aren't 'right' are bad See: blogs from the past 6 years. I would love to jump into this photography business by taking only award-winning, Pinterest worthy photos on every frame of my camera and having the best equipment money (that I don't have) can buy. Unfortunately for me that's not the way things go. I have spent the last year making mistakes. Trying and failing. Dusting myself off. Getting back up and trying again. Learning and growing and stretching and soaring. I'm planning on looking back on this time as the "Years of Mistakes". Which will obviously be in direct contrast to the previous 30-something years of no mistakes.. (eye roll).
Thankfully though, I have a pretty good mentor. Someone who has to try extra hard at every single thing she does. Someone who gets up and faces the day with determination. Someone who we are encouraging to try and fail and try and try again. Someone who has taught me that sometimes the things you think are the biggest mistakes and are certainly going to ruin your life can actually become the most amazing pieces of art.
I have really big dreams. Lots of plans for my photography business. I can honestly say I've never stuck with a 'project' of mine with this much passion for this long. Example: the 'collect every door and window in the tri-state area so I can build things out of them and then... ehhhhh lets try something else.' Our barn is still full. And if you offer me an old palette to this day.. I'll still take it. The past few years have been filled with me starting projects, diving head in, then fizzling out when I can't do it perfect. Becoming a jack of all trades, yet not having the determination to become a master at any one. When things got tough, instead of digging deep, I just shrugged my shoulders and moved on. I thought maybe there was something wrong with me.. maybe I lacked the overall drive to really be good at anything. But I'm realizing something else.. All those "failed" business attempts weren't really failures at all. But learning experiences to taught me what I truly enjoy and what I truly don't. This photography journey has been drastically different. Every. Single. Day. I make mistakes. And instead of shrugging my shoulders and giving up, I find myself digging deeper. Learning. And growing. I find myself igniting that fire in my soul over and over. It is a daily, hourly, sometimes minute-ly battle in my head to fight the negative thoughts of "you're not good enough" and "you can't do this" or "you should just give up." It is honestly the hardest thing I've ever done. But I find myself not giving up. Not giving in. I walk a fine line of pushing myself to be better without listening to the negative voices that seem to surface in my head in the most inopportune times.
I truly believe that we are placed on this earth to use the gifts God has given us to the best of our abilities to bring glory to him. And that's what I plan to do. I don't want to give this up when things get hard. Because there is a purpose in it. I don't know exactly what that purpose is right now. Or where it will lead. There might be plans in the works I know nothing of at this point. But I never want to let fear win out where light should shine. And photography is all about light. This year is going to be full of a lot of things- -taking risks, going out of my comfort zone, trying new things, stretching limits, chasing dreams.
But it definitely won't include one thing: regret.
If I'm not mistaken that's the very understandable sound of distant echoes reverberating back to my woefully abandoned blog in the cyber world. *Hides head in hands..*
In case there's anyone still out there though......
I promise to try to explain this year of silence and you can bet I have big things to talk about and lots of thoughts in my brain to get out, but first - - - Ella.
She had an absolutely amazing year of Kindergarten. We were blessed with the best teacher we could have ever hoped for, another year with her amazing and dedicated aide, an entire school system that works with her to help her be her best, and friends who love and accept her for who she is. We couldn't ask for more!! She has become so much more independent.. She rides the bus in the mornings to school, she eats lunch without assistance, uses the bathroom mostly by herself (wish she would do that at home..). She writes her name (and other words), reads short stories, gives almost every kid in the hallway high fives on her way to breakfast, and talks up a storm.. I love when we have to tell her to be quiet!! She typically answers yes to almost every question you ask her "Did you ride a hippopotamus today?" "Uh huh.." but her last report card came home saying that lately she hasn't been wanting to read so when her teacher asks her to, she started replying "No thank you."Ha! At least she's polite...
That being said.. there are some things we struggle with. Of course. There are still occasional potty accidents, communication failures, discipline issues, etc. We do our best with all those, but one particular issue has had me stumped. Ella seems to have a really hard time with decisions. We've practiced a bit of "Love and Logic" parenting through the years which, if you don't know about it, involves giving your kid lots of choices so she feels in control of what's going on around her. It's always worked pretty well with our other kids, but for some reason it backfires dramatically with Ella. When we try to give her a simple choice such as "Would you like to wear the pink coat or the purple coat?", in theory it should help her feel more in control of her world by choosing something in it. Instead it sends her into a complete tailspin/meltdown. She will choose the pink coat, start to put in on, then say "No, no, no.. purple" to which we will switch to the purple, get it all the way on when she suddenly decides she actually does want pink so starts screaming and ripping her coat off to get to the pink one, only to throw herself on the purple coat, screaming and crying for what could be minutes to hours. I am not even exaggerating. This happens nearly every. time. I try to let her make a choice. It doesn't even matter if I don't let her change her choice and make her stick with the original one. So oftentimes I make the choices for her and move on with our day. It seems like she's afraid to make her own choices, to make a decision, to stand up for what she really wants.
This also happens when we try to encourage her to be independent. For example.. most days she is perfectly capable of dressing herself. But will she? Most days not. We're working on it. She is also technically able to walk to the car on her own. Often times we carry her. It is physically possible for her to put her coat on. But sometimes she refuses. And often it's because she seems scared. She doesn't want to try something new, or even something old, because she's afraid. Afraid to fail. Most kids go through a very determined, independent stage where they want to do everything themselves and try and try and try again. She's starting to do that. But she would often rather have us do it for her than try herself and not succeed.
It can be frustrating and aggravating and makes me feel so so helpless.
Like I said - it's like she's scared.. Maybe of making the wrong decision? Of not being perfect.?Of not making the "right" choice? Of not pleasing everyone? Of going against the grain? Of failing? Of being faced with regret?
Or maybe that's me.. (Upon further inspection my daughter and I might have a lot in common..)
Stay with me..
These situations have led me to give a lot of thought lately to fear. And regrets. What things do I regret doing in my life? Or more importantly.. what sort of things do I regret NOT doing in life? And what was holding me back? Was it fear?
As these years keep passing by it's becoming more and more obvious that our time here, our lives, are so very short. We have one shot at making this one life we have to live the best we can. I'm finding that my biggest regrets aren't things that I've done, but things I haven't done. Sure.. I mean there's that belly button ring that sounded like a really hot idea in high school that doesn't quite have the same look after 5 c-sections, but it's not like I'm planning on wearing a bikini anytime soon anyways.. No, actually the biggest regrets I have are things I've dreamed of doing, but then was too scared to take the plunge. Things I knew I wanted in my heart, but decided the risks were too risky. Things I wasn't strong enough to fight for.
Is that part of what Ella's feeling?
Is she scared of doing something she knows she wants? Too hesitant to make a choice that might be "wrong"?
I've started a new venture this year. Which now helps explain my absence from the blog..
Photography. It's something I've always loved - I practically minored in it in college. Over the years I've been passionate about taking photos of my own children, but I always said I never wanted to turn it into a business. I told people I didn't want to work all those nights and weekends. That I didn't want to run my own business. I told people I'd rather just take pictures of my own kids. But in reality? Was that really the whole reason I didn't want to pursue it? Or was I scared?
Of making the wrong decision.
Of not being perfect.
Of not making the "right" choice.
Of not pleasing everyone.
Of going against the grain.
Of failing.
Of being faced with regret.
One of my very earliest memories is of setting up an "art gallery" of my masterpiece drawings in my childhood living room and
Anyways.. my point is. Maybe I always have had this artistic dream. Simmering. Waiting. Yearning to get out. But constantly being pushed under the surface because of my fears. My fears of not being perfect. Of failure. Of disappointing someone. In fact, I know I have always had this dream. My answer every year as a child of 'What do you want to be when you grow up?' was always always "artist." Except when I thought that wasn't the "right" answer. There were years that I didn't think an 'artist' was an actual profession. So I would tell people I wanted to be a teacher even though there was not a single ounce of me that wanted to be a teacher. I just thought that was the "right" thing to say. I mean.. it was safe at least. My mom was a teacher, two of my sisters are teachers. Both my grandparents were teachers. I assumed that must be what I 'should' be too.
But I'm learning something.
I don't want to live by what other people think I "should" do. Or what I think other people think I should do. Does that make sense? I don't ever want to regret not chasing my dreams. I don't want to get to the end of my life and look back, wondering how things could have been. I don't want to wonder "what if?" I want to KNOW that I lived this life to the fullest. That I didn't hold back because of fear. That I took risks. That I succeeded. That I failed. That I learned. That I tried. That I took the time to find me.
This past year has been hard. I don't like making mistakes. read: perfectionist. I seem to think things that aren't 'right' are bad See: blogs from the past 6 years. I would love to jump into this photography business by taking only award-winning, Pinterest worthy photos on every frame of my camera and having the best equipment money (that I don't have) can buy. Unfortunately for me that's not the way things go. I have spent the last year making mistakes. Trying and failing. Dusting myself off. Getting back up and trying again. Learning and growing and stretching and soaring. I'm planning on looking back on this time as the "Years of Mistakes". Which will obviously be in direct contrast to the previous 30-something years of no mistakes.. (eye roll).
Thankfully though, I have a pretty good mentor. Someone who has to try extra hard at every single thing she does. Someone who gets up and faces the day with determination. Someone who we are encouraging to try and fail and try and try again. Someone who has taught me that sometimes the things you think are the biggest mistakes and are certainly going to ruin your life can actually become the most amazing pieces of art.
I have really big dreams. Lots of plans for my photography business. I can honestly say I've never stuck with a 'project' of mine with this much passion for this long. Example: the 'collect every door and window in the tri-state area so I can build things out of them and then... ehhhhh lets try something else.' Our barn is still full. And if you offer me an old palette to this day.. I'll still take it. The past few years have been filled with me starting projects, diving head in, then fizzling out when I can't do it perfect. Becoming a jack of all trades, yet not having the determination to become a master at any one. When things got tough, instead of digging deep, I just shrugged my shoulders and moved on. I thought maybe there was something wrong with me.. maybe I lacked the overall drive to really be good at anything. But I'm realizing something else.. All those "failed" business attempts weren't really failures at all. But learning experiences to taught me what I truly enjoy and what I truly don't. This photography journey has been drastically different. Every. Single. Day. I make mistakes. And instead of shrugging my shoulders and giving up, I find myself digging deeper. Learning. And growing. I find myself igniting that fire in my soul over and over. It is a daily, hourly, sometimes minute-ly battle in my head to fight the negative thoughts of "you're not good enough" and "you can't do this" or "you should just give up." It is honestly the hardest thing I've ever done. But I find myself not giving up. Not giving in. I walk a fine line of pushing myself to be better without listening to the negative voices that seem to surface in my head in the most inopportune times.
I truly believe that we are placed on this earth to use the gifts God has given us to the best of our abilities to bring glory to him. And that's what I plan to do. I don't want to give this up when things get hard. Because there is a purpose in it. I don't know exactly what that purpose is right now. Or where it will lead. There might be plans in the works I know nothing of at this point. But I never want to let fear win out where light should shine. And photography is all about light. This year is going to be full of a lot of things- -taking risks, going out of my comfort zone, trying new things, stretching limits, chasing dreams.
But it definitely won't include one thing: regret.
Happy AnniFathersVersaryDay
I know I am SO SO overdue on posting a blog about Ella and her amazing year in Kindergarten, and I have another one started that might help explain why I'm SO SO overdue (NO I'm not pregnant..) and I promise I will get to it, but right now we have more pressing matters.
It's Father's Day. AND our 12 year wedding anniversary.
Otherwise known as the rare AnniFathersVersary Day.
And that calls for a very special blog for a very special guy!
The past 12 years with you have been a wild ride.
Some days it feels like a battle.
But others are like a ride through the park.
Or across the lawn..
We've been in some tight spaces.
But we never let our guard down.
I love that you still go along with my crazy ideas.
and come up with a few of your own as well.
And just when you think you know a guy..
I've had a busy year trying to start my photography business (spoiler alert for the 'started blog')
and you're always ready and willing to help me test out backdrops,
lighting,
and you put up with all of my late nights editing.
There is no one in this world who supports me, encourages me, or believes in me more than you. You've never once complained about working a full-time job, then coming home and staying up late to help me clean and set up for a photoshoot the next day.
Okay.. actually there was that one time I asked if you would rather finish the dishes or mop the floor and I heard you mutter under your breath "This isn't my photoshoot.."
HOWEVER
for the sake of avoiding counseling for another year I am going to choose to ignore that comment and not bring it up again except for here where it will live on for cyber eternity..
I'm thankful for our adventures together.
the passions we share,
the memories we've made,
but mostly I'm thankful..
for Snap Chat.
And screenshots.
You make our lives so much more fun
We love you!
Happy Anniversary AND Father's Day!
This Week
5 years ago this week I woke up to hear that my 9 month old baby had salmonella poisoning.
This week I woke up to get her ready for Kindergarten.
5 years ago this week I was riding in a life flight helicopter while my daughter barely clung to life beside me.
This week I was braiding her hair.
5 years ago this week I was being told there was a possibility the salmonella had spread to her brain.
This week she read me a book.
5 years ago this week I was told she needed surgery, yet she might not be strong enough to survive it.
This week I watched her leap off our couches and tackle her brothers.
5 years ago this week I kissed her for what I thought could possibly be the last time this side of Heaven.
This week her teacher told me she loved her bouncy pig tails because they matched her personality so well.
5 years ago this week I sat in the surgery waiting room clutching her pink checkered blanket the hospital gave us tight to my stomach, fearing the worst.
This week I kissed her forehead and tucked her into her big girl bed with that same tattered pink blanket.
5 years ago this week she was on a ventilator and I couldn't hold her for weeks.
This week she sneaked into my bed in the middle of the night and I snuggled her close.
5 years ago this week I was imagining what songs we would play at her funeral.
This week I was listening to her sing Ring-Around-The-Rosie and dance around with her dolls.
5 years ago this week a priest was performing the Last Rites on my little girl.
This week she couldn't wait to go to the front of church to sit with her Papa and cousin.
5 years ago this week I wondered if it would be better if Ella didn't make it.
This week... I am so thankful.
Thankful I was wrong. That I was given the opportunity to swallow my pride and share CdLS with others.
Thankful for our doctors. Who made life saving decisions our entire stay.
Thankful for our nurses. They took such good care of us.
Thankful for our special nurse Maggie. I don't want to think about what would have been the outcome if she wasn't on duty that day to be able to get the IO in to save Ella's life.
Thankful for the support of our family and friends. We couldn't have gotten through without you all.
Thankful for life. We know it can change in the blink of an eye.
Thankful that this is this week and not 5 years ago.
As I write this I can't help but think of all of Ella's CdLS sisters and brothers who are no longer with us. They are always in my heart and never far from my thoughts. I don't know why we were so lucky 5 years ago, and I'm trying not to feel guilty about it. Yet I know that we are not immune and nothing in this life is guaranteed for long. So this week we're celebrating life. The life we have today. My 3 year old asked me the other day whose birthday it was, convinced it had to be someone in our family's. It's not even closes to anyone's, but it kindof does feel like a birthday this week. As my Facebook Timehop takes me down memory lane of everything we went through this week 5 years ago, and how close we came to losing our little girl, I am reminded to never take life for granted. So even though it's technically not anyone's birthday this week, we will celebrate the gift of life. I happen to know a certain spunky little pig-tailed girl who would probably love some ice cream for supper tonight.
This week I woke up to get her ready for Kindergarten.
5 years ago this week I was riding in a life flight helicopter while my daughter barely clung to life beside me.
This week I was braiding her hair.
5 years ago this week I was being told there was a possibility the salmonella had spread to her brain.
This week she read me a book.
5 years ago this week I was told she needed surgery, yet she might not be strong enough to survive it.
This week I watched her leap off our couches and tackle her brothers.
5 years ago this week I kissed her for what I thought could possibly be the last time this side of Heaven.
This week her teacher told me she loved her bouncy pig tails because they matched her personality so well.
5 years ago this week I sat in the surgery waiting room clutching her pink checkered blanket the hospital gave us tight to my stomach, fearing the worst.
This week I kissed her forehead and tucked her into her big girl bed with that same tattered pink blanket.
5 years ago this week she was on a ventilator and I couldn't hold her for weeks.
This week she sneaked into my bed in the middle of the night and I snuggled her close.
5 years ago this week I was imagining what songs we would play at her funeral.
This week I was listening to her sing Ring-Around-The-Rosie and dance around with her dolls.
5 years ago this week a priest was performing the Last Rites on my little girl.
This week she couldn't wait to go to the front of church to sit with her Papa and cousin.
5 years ago this week I wondered if it would be better if Ella didn't make it.
This week... I am so thankful.
Thankful I was wrong. That I was given the opportunity to swallow my pride and share CdLS with others.
Thankful for our doctors. Who made life saving decisions our entire stay.
Thankful for our nurses. They took such good care of us.
Thankful for our special nurse Maggie. I don't want to think about what would have been the outcome if she wasn't on duty that day to be able to get the IO in to save Ella's life.
Thankful for the support of our family and friends. We couldn't have gotten through without you all.
Thankful for life. We know it can change in the blink of an eye.
Thankful that this is this week and not 5 years ago.
As I write this I can't help but think of all of Ella's CdLS sisters and brothers who are no longer with us. They are always in my heart and never far from my thoughts. I don't know why we were so lucky 5 years ago, and I'm trying not to feel guilty about it. Yet I know that we are not immune and nothing in this life is guaranteed for long. So this week we're celebrating life. The life we have today. My 3 year old asked me the other day whose birthday it was, convinced it had to be someone in our family's. It's not even closes to anyone's, but it kindof does feel like a birthday this week. As my Facebook Timehop takes me down memory lane of everything we went through this week 5 years ago, and how close we came to losing our little girl, I am reminded to never take life for granted. So even though it's technically not anyone's birthday this week, we will celebrate the gift of life. I happen to know a certain spunky little pig-tailed girl who would probably love some ice cream for supper tonight.
Just a Girl
So we've been having some.. 'issues' with Ella lately. I don't even know exactly how to describe her behavior. Other than frustrating, exhausting, annoying, tiresome, irritating, ridiculous..
Okay I guess it turns out I do know how to describe it better than I thought.
There's a lot of different little things she does that have been wearing on us. For example, she gets SO upset when someone else falls down or gets hurt (which happens with frequency with 4 rambunctious brothers..) she herself will make herself fall down or get hurt and run to us wanting affection. Except then she won't accept it. When we try to give her a hug she'll just turn the other way and scream "NO!!" then just be unconsolable and work herself into a tizzy. Or maybe a brother wants a toy she's playing with. She feels obligated to share it with them, gives them the toy, then starts screaming that she doesn't have the toy. When she gets it back though, she just screeches more and throws it, again yelling "NO NO NO!". She is terrible at making decisions. If I ask her, "Do you want juice or milk?" she might ask for juice. Then when I show up with the juice she screams "NO! Water!" so I dump out the juice and put water in the cup and again, "NOOOOO! Juice!" Or if we're swinging she'll say "All done." so I'll get her off the swing, then she'll start crying, "NO! More, more!" So I'll buckle her back up, then it's the sobbing and flailing and yelling "NOOOO All done!!!!" This goes on and on. With everything. And with everything she just becomes hysterical, unconsolable, unable to reason with even a little bit. She has this thing where she always wants her feet rubbed. She's always liked them rubbed (who doesn't?!?) and I think it's definitely a comfort thing for her. But there have been times where she would not go to bed at night and would just grab her feet screaming bloody murder while we sat by her bed and held them tight, doing our best to console her. She's also been having a lot of potty accidents lately. I feel like she's getting anxious about going and all my efforts to bribe beg grovel at her feet reward her are only making it worse.
So here are the thoughts running through my brain during these times..
What is wrong with her feet? Does she have restless leg syndrome? I'll make a homemade sleep cream using essential oils to help soothe her. Or maybe she's magnesium deficient. I've heard that's what causes RLS. Let me order some magnesium lotion online and see if that helps. Or what if it's something else? Maybe it's that Raynaud's disease I've heard of some kids with CdLS having where your blood circulation is limited. That can cause numbness to the hands and feet. *makes mental note to mention this to doctor.* Or maybe that's not it at all either.. Is it some kind of neuropathy thing? What kind of doctor do I need to contact about that? Are her feet tinging? I have no idea. She's just screaming. Sometimes she does it after she's been in her car seat for awhile. Maybe her feet are falling asleep because she doesn't fit in her carseat right? She's not big enough to move to a booster, but what else is out there? Why is she freaking out so bad? Is she in pain? When was the last time she went to the bathroom? Could she have a bowel obstruction? Or what about malrotation? Should we rush to the ER and get an x-ray? Or maybe.. MAYBE it's a GI thing. Could she be silently refluxing? I bet she is. She's probably been refluxing for years and we just didn't know it. I knew I shouldn't have put off our last GI appointment. It's probably gotten so bad that she has esophagitis now, or maybe even Barrett's Esophagus. No wonder she's screaming. Or wait.. no, maybe it's a communication thing. Does she need to tell me something but can't find the words and it's frustrating to her? I really need to do better at practicing with her new communication device and Proloquo2Go app. I know I don't have enough choices on there for her to tell me what she wants. Except for her to be able to tell me what she wants I would have to program it in there, which means I would of course need to know what she wants in the first place...
A few weeks ago we were talking with some friends about this and they were commiserating with me and saying how actually a lot of these things sound exactly like their daughters.
Their very, quite typically developing daughters.
..............................................................................................
Is it possible.. that all these behaviors and tantrums and fit throwing and llama llama red pajama mad at mama so much nonsense too much drama are not at all due to the fact that she has special needs and developmental delays and Cornelia de Lange Sndrome, but purely attributed to the fact that she is... Just a Girl??
I have no idea.
But if it is.. hats off to you mamas of girls.
Seriously.
All my noisy, wrestling, loud, obnoxious, farting, stinky, sweaty, mud throwing, paint splattering, fighting, belching, filthy dirty, wild and crazy boys are by far so much easier to handle than this one.
Is it possible that sometimes I get caught up in the syndrome and making sure I don't miss some important detail of what could possibly happen that I fail to notice that she really is.. just a little girl? When she does things different from her brothers do I just think 'Oh.. it's because of CdLS?' But maybe it's not. I know absolutely zero about raising girls (except of course for that fact that I am one..) and this thought slightly brings me joy and slightly terrifies me.
Is it possible that I am just now realizing that I do, in fact, have a little girl?
A girl who adores looking at herself in the mirror. Who LOVES having her hair put up. Who at least 20 times a day comes to me and points to her hair saying "Up, up!" (Girlfriend should have been born in the 80's.. She would have rocked the big bangs era. I cannot get her pigtails high enough to appease her, even when they are quite literally on the very tip top of her head.) She will smile and giggle and turn her head, adoring her own reflection. (It doesn't have to be a mirror either.. Could be the window, a stainless steel bowl on the counter, the rims of wheels on cars we're walking by..) I have a little girl who loves to dance and spin in circles and giggle. A girl who adores her 'babies' and rocking and feeding them. A girl who loves to crawl up into our bed, pull the covers up to her chin, and snuggle in with us all cozy and warm. A girl who has her mama's chocoholic sweet tooth and shares my love of iced coffee. I can't wait to go on coffee dates with her. A girl who chomps her gum and holds my hand and melts my heart. A girl who for the very first time the other day wore the most adorable strappy sandals and let me put her hair in french braids. I died.
So is it possible that these 'behaviors' are due, at least in part, to her being a girl and all the drama and out of control emotions that sometimes goes along with it?
Maybe?
The jury's still out on this one.
For now what I do know is I have a little girl. A little girl who needs me to be the best mama I can be. Who needs me to be there for her to love and comfort and hug and hold, to be firm and strong, and to be her very best advocate. A little girl who needs my patience and guidance even on days I feel like I have nothing left to give. Because she's not just a girl..
She's my little girl.
Our Week in Orlando--CdLS Conference 2016
It's becoming obvious that I don't handle change well.
Me 2 weeks ago: "I don't want to go to Florida. Why did I even plan this trip? It's too expensive. And stressful. And hot. Is seeing our CdLS family even worth it? Specialists Schmecialists.. There have been so many awful things happening in Orlando lately. I just want to stay home in the Midwest with my corn fields where it's safe and quiet. There's no alligators here. I like my home. And my animals. I like my life. Why would I even want to leave? Maybe we shouldn't go.."
And then me on Sunday: "I NEVER want to leave Florida. I'm going to become a millionaire and buy a house on the ocean. I love the ocean. All our CdLS family can come live with us. Let's stay on vacation for all the days. There are no bills to pay! No chores to do! No house projects waiting for us! We'll lay around by the pool all day and look at the palm trees. I'll deal with the alligators. Where is home? What does my house even look like? Do I have a house? Do I even know how to cook? I have no idea.. Who cares? Tra la la la.."
Is it just me or does everyone feel this way after going away for a few days?
I faintly remember going through the exact same thing 2 years ago during the California Conference..
Anyways, we spent last week in Orlando for the CdLS Conference and had such an amazing trip! The kids did SO well on the plane.
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| I think Ella was sleeping on JJ's lap during this picture. |
We left a few days early and were able to spend some time at the ocean on the Gulf. When we asked the kids what they wanted to do in Florida, spending time on the beach hands down ranked #1 far far above than anything small and insignificant like, say.. Disney World. (And FAR less expensive too! Win-Win)
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| Pure joy. |
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| It did not disappoint. |
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| You can see shell-obsessed Charlie in the background.. That kid wouldn't have left a single shell in Florida if he had his way. Our bags were considerably heavier on the flight home..
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The sunsets weren't too shabby either..
We were at Clearwater Beach so we also went to the Clearwater Marine Center where the movie Dolphin Tale was made and created after. The kids were pretty excited to see Hope and Winter, the dolphin who had lost her tail. And I love the inspiration and correlation between so many kiddos with CdLS who have limb deformities as well.
We were the very first people in the center and the sting rays were so playful right away in the morning! It was amazing to see them so interactive--splashing the sides of the glass and wanting attention.
Since our hotel for the Conference was on SeaWorld property we had the chance to do some fun SeaWorld stuff too. Ella LOVED the dolphin show.
She was so fun to watch--her face was total amazement the entire show.
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| Giraffes had better step up their game or dolphins just might take over Ella's favorite animal spot!! |
And now on to the BEST part of the week.
Yes, even after all the fun 'extra' stuff we got to do, the absolute best part was when the CdLS Conference started. It was nothing short of amazing!
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| Ella & Addison |
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| Ella's BF Payson |
We were able to reconnect with so many friends from past Conferences.
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| Sweet Eva |
And make so many new ones as well!
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| Meeting Micah |
This sweet girl has a brother with CdLS and loved on Ella all weekend.
She whispered in my ear at the Banquet on the last night
She whispered in my ear at the Banquet on the last night
"I wish I could be Ella's sister.."
Levi made a few friends as well!
Oh, and some pretty cool people got some pretty cool awards too.. Just saying.. ;)
The older boys loved reconnecting with friends they had made in California. I love watching them build relationships as well and I know I've said it before but I think it's so so important for them to have other siblings of CdLS-ers that they can talk to as they grow up and face different challenges.
I am so excited to watch them grow and have opportunities at upcoming Conferences to volunteer and interact with other CdLS families even more!
We had some really great consults with doctors as well. The OT remembered seeing Ella in California and couldn't believe how well she was doing. She had her run down the hallway and kept exclaiming over and over "Oh my gosh! Look at her trunk rotation! I can't believe it! Did you see her trunk rotation??" Seriously. Over and over and over. Crazy OT's.. Apparently it is pretty rare for someone with CdLS to have the fluid movement Ella does when she walks or runs. And also not to have any restriction in her arms or wrists. She was able to give us some good tips for strengthening her hand muscles so she is better able to grip her pencil and push harder on her paper to write in school. We also met with a Special Education Coordinator who reviewed Ella's IEP and reaffirmed that we are working with a pretty great school and are getting her the services she needs and also gave us a lot of helpful information I will be reviewing over the next few weeks! It was crazy to look back at our Speech Session from 2 years ago and see that our therapist told us that she believed Ella would not only someday be able to say her name, but read it and write it as well. I remember being so excited to hear that.. I had no idea that day would already be here! I can't wait to see what she does in the next 2 years! There are quite a few different research opportunities at Conference (and some really exciting new breakthroughs we were able to learn about!). One of the booths we stopped at we were already signed up with the registry through our local hospital.. and then we realized that the guy was from our local hospital. Small world!
My heart was so full over the weekend seeing all the CdLS kiddos and their families. It's just an amazing experience being in a place where kids who are sometimes looked at or treated differently by the world are not only accepted, but treasured and cherished and loved beyond belief. There is no 'your kids' or 'my kids' but instead they're all our kids. We celebrate together when someone reaches a milestone, we laugh together, we cry together when we lose a baby too soon, we encourage each other when we're down and hold each other up when we think we just can't do it any longer. Even though CdLS means something different to every family, no matter where you're at in your journey, it's inspiring to know someone has been there before you and can help guide you through it. We are so very blessed to have the welcoming and supportive community at home that we do, but this Conference is truly the one time where families can get together and feel normal, where everyone instinctively 'gets it' and where your everyday conversations about therapies and specialists and medical devices and communication apps are everyone else's normal conversations as well. The doctors and specialists are wonderful and so so important to meet with, but sometimes it's the families who have been through it who can provide the most help.
I've sat down so many times to write this post this week, but it's been hard. We have been struggling a lot adjusting back to real life. Ella has been having some very difficult behaviors (one in particular resulting in a doctor's visit for Hudson..) :( Apparently the Behavior Specialist should have been part of our consults last week.. She has been acting out and regressing in areas and I'm hoping it's in part attributed to sleep deprivation and disruption in schedule. I've felt many times this week I've reached my breaking point. But then I remember. . .
I remember the brave mamas who shared their stories and their everyday struggles with me during our mom's small group session. I remember how every behavior we talked about there was someone who could say "My child used to do that too and here's what helped." I remember the inspiring couple we met who raised their own family, and has now adopted and is fostering 8 other children right now, 2 of who have CdLS and who drove 1500 miles to be there (with those 8 kids..). I remember the selfless couple who already has one child with CdLS and couldn't make it to this Conference because they were saving their money to adopt a little boy with CdLS from Ukraine, who sadly just passed away this week before they even had the chance to hold him. I remember the strong mama who unexpectedly lost her sweet girl only a month ago who was able to come to Florida and love on her CdLS brothers and sisters. I remember the man who passed away this week who was the oldest living person with CdLS in the US (unfortunately only in his 50's) and the adventures his mom would post about. I remember the panel of young adults with CdLS we heard at Conference and the inspiring ways they are living independent lives. I remember the stories and the pain. I remember the joy and the love. I remember that I have a community who has been through it, is going through it and is there for me when I need it.
I feel so thankful that I was able to be filled up with so much love and inspiration last week. It makes all the difference in the world. The only bad part about Conference is that it lasts only 4 days, every 2 years. I loved meeting and connecting with every single person and I only wish there would have been more time to connect with even more. For me this was the best Conference yet. I am finally at a point where I'm not worried about what Ella is going to be like. I'm not comparing her to others to see what she's doing and what others are doing. I'm not racing around to find every answer and stressing out over every test. I've settled into a groove-- it's about who Ella is, not who I want her to be. It's about treasuring the time we have, not worrying that it's not enough. It's about welcoming others into our community and supporting them in this journey. It's about loving on those babies and counting down the next 730 or so days until the next Conference.. :)
Thank you thank you for everyone who helped make this trip possible!
I've sat down so many times to write this post this week, but it's been hard. We have been struggling a lot adjusting back to real life. Ella has been having some very difficult behaviors (one in particular resulting in a doctor's visit for Hudson..) :( Apparently the Behavior Specialist should have been part of our consults last week.. She has been acting out and regressing in areas and I'm hoping it's in part attributed to sleep deprivation and disruption in schedule. I've felt many times this week I've reached my breaking point. But then I remember. . .
I remember the brave mamas who shared their stories and their everyday struggles with me during our mom's small group session. I remember how every behavior we talked about there was someone who could say "My child used to do that too and here's what helped." I remember the inspiring couple we met who raised their own family, and has now adopted and is fostering 8 other children right now, 2 of who have CdLS and who drove 1500 miles to be there (with those 8 kids..). I remember the selfless couple who already has one child with CdLS and couldn't make it to this Conference because they were saving their money to adopt a little boy with CdLS from Ukraine, who sadly just passed away this week before they even had the chance to hold him. I remember the strong mama who unexpectedly lost her sweet girl only a month ago who was able to come to Florida and love on her CdLS brothers and sisters. I remember the man who passed away this week who was the oldest living person with CdLS in the US (unfortunately only in his 50's) and the adventures his mom would post about. I remember the panel of young adults with CdLS we heard at Conference and the inspiring ways they are living independent lives. I remember the stories and the pain. I remember the joy and the love. I remember that I have a community who has been through it, is going through it and is there for me when I need it.
I feel so thankful that I was able to be filled up with so much love and inspiration last week. It makes all the difference in the world. The only bad part about Conference is that it lasts only 4 days, every 2 years. I loved meeting and connecting with every single person and I only wish there would have been more time to connect with even more. For me this was the best Conference yet. I am finally at a point where I'm not worried about what Ella is going to be like. I'm not comparing her to others to see what she's doing and what others are doing. I'm not racing around to find every answer and stressing out over every test. I've settled into a groove-- it's about who Ella is, not who I want her to be. It's about treasuring the time we have, not worrying that it's not enough. It's about welcoming others into our community and supporting them in this journey. It's about loving on those babies and counting down the next 730 or so days until the next Conference.. :)
Thank you thank you for everyone who helped make this trip possible!
Goodbye Florida.. We miss everyone so much already.
We can't wait for Minneapolis 2018!!!!!
*Another HUGE shout out to Grandma and Papa for coming along with us again. Our trip would not have been nearly as fun or relaxing and I'm not convinced all 7 of us would have even made it back together if not for you being there!
Happy Anniversary
Can you believe we've been married 11 years?
11 years since I stared into these green eyes and pledged my forever "I love you's".
You still leave me speechless.
Sometimes I watch you deep in thought and wonder..
I wish there was someway I could tell how you really feel about our lives together..
I guess I'll just have to assume I still make you feel like flying.
or falling..
AmIright?
Seriously though..
I really love our lives together.
As these boys get older I'm so thankful they have a dad like you to look up to.
A dad who takes them hunting.
And fishing.
And fishing.
And fishing.
And fishing..
Sliding.
And water sliding.
Swimming,
batting,
and boating.
I'm so glad I get to wake up to a quiet house and find notes like this.
Our daughter is so lucky to have you. (Even if she looks a little unsure here..)
We all are.
(Lucky to have you. Not unsure. Mostly..)
You coach us.
You teach us the value of hard work.
You love life with us.
Most importantly you love us well.
And we love you back.
More than you know.
Even if you do tip our swing set over flat on its face
(And my garden shed too, but who's keeping track, really?)
 |
| Oops. |
Oh- and thank you for remembering to make me sweet homemade Valentine's so I can cross out your name and regift them back to you since I'm not the greatest gift giver..)
Here's to a lifetime of memories that's only just begun!
Happy Anniversary!!
Potties and Big Girl Beds and Sleeping all night.. OH MY!
In addition to all the big changes and successes at school, Ella has been doing some pretty awesome things here at home too. A few months ago (it actually might have been before Christmas time.. I'm not really sure) Hudson started climbing out of his crib. It wasn't a big deal, but when Daddy got home and I told him what happened he promptly said to him "You need a big boy bed! Let's go get it out of the attic." And proceeded to spend the next hour disassembling his crib, moving it to our room for Levi, and getting out the toddler bed while I simply stared with my mouth gaping open. I was not prepared for that. Well, when Ella saw all the excitement over Hudson's new bed, she decided she wanted one too. Since we had an extra at Grandma & Papa's house, Daddy and Ella drove and got her bed (which made it all the more exciting for her) and put hers up too. (Me, standing with mouth still gaping open) And then of course that same Daddy left for the rest of the evening, leaving me to put 2 toddlers (and 3 other children) to sleep in brand new beds for the very first time. Thanks.
We had tried Ella in a big girl bed a few years ago, but she just wasn't ready. She wouldn't stay in it, wouldn't nap as long and only if I laid next to her until she fell asleep. This time she was ready though. She did pop out a few times, but I put her back in and she eventually stayed put. Now she pretty much always stays in her bed after we lay her down and goes right to sleep (maybe after a few rounds of singing "Twinkle Twinkle" so sweetly to herself).
That being said, Ella has pretty much always come to our bed sometime in the middle of the night. We've tried putting her back to her bed, but she immediately pops out and comes back to ours. This has gone on for hours on end before we finally gave up. We've tried laying by her in her room to get her back to sleep, but usually wakes up again anyways. We've found out she can outwit, outlast, and outplay us any day of the week. It's generally just easier to let her come sleep in our bed, especially if its 3-4am. BUT the past 2-3 weeks she's decided to sleep in her own bed every single night, ALL night long. (I hope I'm not cursing it by writing about it..) Whether it was because we decided to sleep train Levi that week and let him cry for a few minutes a couple nights and she just decided she didn't want to come in and have anything to do with that, or what.. I don't know. And I'm still fully aware that it could change at a moment's notice, but for now all five children have actually slept through the entire night multiple times during the last few weeks for the first time in... ever.
And perhaps one of the very most exciting things to happen is ELLA IS POTTY TRAINED!! Yes, I just said that. For the most part at least.. During the school year Ella would follow the same potty schedule as the rest of her class. She would go in the potty at the same time with her aide. Sometimes they would just go in and just look at the potty and turn back around, sometimes she would sit for a few seconds, and then wash their hands and go back out. We really let her set the pace. But for the last 2-3 weeks of school there started to be a few times she actually went potty, then it built up to a few times a day! About the 2nd week into summer break I decided to see what would happen if I just put her in big girl pants, and she did AMAZING! She didn't have an accident the entire first day. What did the trick you ask? M&M's. That's it. Every time she goes potty she gets 2 M&M's and gets to give 2 to her brothers and they all cheer and give her high fives and thumbs up and tell her good job. We're already almost through a 3 lb bag. I'm hoping to phase it out over the next few weeks, but I'm not sure she'll let me or not..
It's been about 3 weeks now that's Ella's been in big girl pants I think and she does have accidents occasionally, but for the most part she is doing so so good. Needless to say I'm a little nervous about flying across the country with her, but she has been wearing big girl pants everywhere for a few weeks now.. to the store, church, camping, and the girl even peed off the side of the boat for Heaven's sake, so I'm hoping we're good! We are so so proud of her!
We had tried Ella in a big girl bed a few years ago, but she just wasn't ready. She wouldn't stay in it, wouldn't nap as long and only if I laid next to her until she fell asleep. This time she was ready though. She did pop out a few times, but I put her back in and she eventually stayed put. Now she pretty much always stays in her bed after we lay her down and goes right to sleep (maybe after a few rounds of singing "Twinkle Twinkle" so sweetly to herself).
That being said, Ella has pretty much always come to our bed sometime in the middle of the night. We've tried putting her back to her bed, but she immediately pops out and comes back to ours. This has gone on for hours on end before we finally gave up. We've tried laying by her in her room to get her back to sleep, but usually wakes up again anyways. We've found out she can outwit, outlast, and outplay us any day of the week. It's generally just easier to let her come sleep in our bed, especially if its 3-4am. BUT the past 2-3 weeks she's decided to sleep in her own bed every single night, ALL night long. (I hope I'm not cursing it by writing about it..) Whether it was because we decided to sleep train Levi that week and let him cry for a few minutes a couple nights and she just decided she didn't want to come in and have anything to do with that, or what.. I don't know. And I'm still fully aware that it could change at a moment's notice, but for now all five children have actually slept through the entire night multiple times during the last few weeks for the first time in... ever.
And perhaps one of the very most exciting things to happen is ELLA IS POTTY TRAINED!! Yes, I just said that. For the most part at least.. During the school year Ella would follow the same potty schedule as the rest of her class. She would go in the potty at the same time with her aide. Sometimes they would just go in and just look at the potty and turn back around, sometimes she would sit for a few seconds, and then wash their hands and go back out. We really let her set the pace. But for the last 2-3 weeks of school there started to be a few times she actually went potty, then it built up to a few times a day! About the 2nd week into summer break I decided to see what would happen if I just put her in big girl pants, and she did AMAZING! She didn't have an accident the entire first day. What did the trick you ask? M&M's. That's it. Every time she goes potty she gets 2 M&M's and gets to give 2 to her brothers and they all cheer and give her high fives and thumbs up and tell her good job. We're already almost through a 3 lb bag. I'm hoping to phase it out over the next few weeks, but I'm not sure she'll let me or not..
It's been about 3 weeks now that's Ella's been in big girl pants I think and she does have accidents occasionally, but for the most part she is doing so so good. Needless to say I'm a little nervous about flying across the country with her, but she has been wearing big girl pants everywhere for a few weeks now.. to the store, church, camping, and the girl even peed off the side of the boat for Heaven's sake, so I'm hoping we're good! We are so so proud of her!
Preschool Year
Last year at this time I was worried sick about Ella starting preschool. Who would her aide be? Would she be nice? Be able to understand Ella's speech and sign language? How would Ella handle being away from me so long? Would she be exhausted? Would she nap? Would she fit in? Have friends? Learn anything? I was excited for her to start, but terrified of letting her go.
I had no idea how amazing the year would be for all of us. Ella started off attending school just 2 mornings a week and by the end of the year she had built her way up to 4 full days of school a week. She can recognize and say most all her letters (and points them out EVERYWHERE we go). She knows most of her colors, some numbers, and can write her name. (!!!) Her speech has accelerated so much, and she has become SO social. Her aide was amazing and I feel so confident that she is spending her days surrounded by people who truly care for her and want the best for her.
She had such a wonderful preschool experience and we are so excited that next year she will be moving on to... Kindergarten!! There are a lot of factors that went into our decision to move her on instead of spending another year in preschool and a lot of pros and cons both ways, so we're praying this is the best decision for her.
Ella's teacher sent me this video shortly after school got out and I wanted to share it with you all. Sorry for the terrible quality--I couldn't get it to upload directly from the disc, so I had to record it with my video camera from it playing on the tv. But you get the idea! She has grown so much and we are so proud of her.
I had no idea how amazing the year would be for all of us. Ella started off attending school just 2 mornings a week and by the end of the year she had built her way up to 4 full days of school a week. She can recognize and say most all her letters (and points them out EVERYWHERE we go). She knows most of her colors, some numbers, and can write her name. (!!!) Her speech has accelerated so much, and she has become SO social. Her aide was amazing and I feel so confident that she is spending her days surrounded by people who truly care for her and want the best for her.
She had such a wonderful preschool experience and we are so excited that next year she will be moving on to... Kindergarten!! There are a lot of factors that went into our decision to move her on instead of spending another year in preschool and a lot of pros and cons both ways, so we're praying this is the best decision for her.
Ella's teacher sent me this video shortly after school got out and I wanted to share it with you all. Sorry for the terrible quality--I couldn't get it to upload directly from the disc, so I had to record it with my video camera from it playing on the tv. But you get the idea! She has grown so much and we are so proud of her.