Jibber Jabber

Sometimes I forget how far Ella has come in her speech. The progress seems slow and grueling and the day-to-day differences are hardly noticeable. She is nowhere near a typical 5 year old's speech and I long for the day that she comes home from school and tells me all about her day, who she played with at recess, what she ate for lunch, what made her happy, what made her sad.. instead of me having to read it from a communication notebook with her teacher. HOWEVER, the progress definitely is there. There are days her little jibber jabber mouth just won't shut off and she has no quiet voice, especially in church. :)

Last fall I posted a video to a friend's Facebook page of Ella wishing her CdLS BFF Payson 'Happy Birthday'. I was surprised to hear from friends who watched it and were so encouraged by listening to her improved speech that I promised I would soon share more videos of her talking..... That was 6 months ago. Oops. In my defense I honestly have been trying to take videos of her but it's been so hard for a variety of reasons. 1) Her talking is so normal now.. I don't really think much of it. Just like the dirty dishes in my sink, it's just always there and not something I even think about recording.. 2) Whenever I start to record her she almost always instantly stops talking and wants to watch herself on the video and 3) I swear some little boy is ALWAYS running around naked in the background!

I did manage to get a few videos though and put them together here. Enjoy!

P.S. Ella had surgery this morning for her 2nd set of tubes and an adenoidectomy. Thank you for all the thoughts and prayers! Everything went great-the doctor discovered her 1st set of tubes from 2 1/2 years ago were actually still in place (he couldn't see them previously), there was a lot of granulation tissue around them, and fluid build up behind. We're hoping this helps immensely with fluid drainage and improved hearing in the future!!

Gymnastics 2016!

Ella had her Gymnastics Recital last night and of course I'm a little biased but she did SO GOOD!

Ella has grown so much over the past year and I am so proud of her! Last year I went in to every lesson with her and stood by her side, helping her with all the moves. I knew the routine she was going to do because I was right there next to her every time they practiced. This year she was such a big girl and went in to all her gymnastics practices all by herself so I had no idea what they were going to do. I was BLOWN AWAY during the very first part of the routine when they stand in line and she actually popped up and down when she was supposed to! It's one thing to stand behind your peers and wait your turn doing what everyone else is doing, but it is totally another thing to remember part of a routine and do your own thing right when you're supposed to do it!!

This girl just continues to amaze me!

Normal yet Not

I had all but written this post in my head about feeling 'normal' lately. I had planned to apologize for being such a terrible blogger (again-I know) but the truth was I just hadn't been feeling like there was much to write about. The first few years of Ella's diagnosis of CdLS were so hard. Every day brought new questions and fears. I had so many emotions, so many questions, so many tears, so many what-if's, so many things to process. I had a lot to say and sort out. And say it I did. This blog and everyone who reads it has been an amazing outlet for me. It has helped me get through some really dark and difficult times and celebrate some incredibly exciting times. But over the past few years, something has begun to shift. Those fears about us never being a 'normal' family have all but diminished. Well.. kindof.

I haven't had much to say lately because things just feel normal. There isn't much to write home about.. or in my case to wring from home about. Ella is talking so much more, but it has been such a gradual process, it just feels normal. She is doing amazing in school, but has been since the beginning of the year so now I just expect it. She still loves gymnastics, but it's her 2nd year so I'm not so shocked by it. She is bright, funny, stubborn, silly, and lights up our life. Just like our other four kids. I don't look at her and see anything or anyone different than anybody else around here. Our days revolve around school and homework and family meals and playing and disciplining and teachable moments and bedtime routines and movie nights and sleepless nights and memories in the making and all that stuff that is just daily. For the first time since finding out about CdLS, I was finally able to say.. Life is really normal.

And then I woke up this morning and saw that Ella's sweet CdLS sister Annabelle passed away last night after a routine sedated procedure. That's the 2nd CdLS angel in our family to gain their wings this week. Winter is always so hard on our babies and this year has been no exception. My heart breaks on a weekly basis for families that I've never met in person but are connected to by heart. I've had a particularly special place in my heart for Annabelle ever since her mom reached out to me after reading the blog shortly after her diagnosis. I've loved watching her grow from a chubby little baby into beautiful little 2 year old girl whose smile was absolutely radiating.

Today has shook me as I am reminded again that although our life does feel so normal, it's still not. It's like we're stuck in the middle--hanging in limbo of living our daily routines yet still straddling the proverbial fence when it comes to our children's fragility. We have one foot in the 'typical' waters of life- going to work, parent/teacher conferences, kids basketball games.. and one foot in the murkier waters of the constant stream of friends with babies in ICU, life-threatening surgeries, and the constant unknown. I know no life is guaranteed, even a typical one. I do positively know this. However with CdLS or many other genetic syndromes, the chances are just so much higher. That's our reality. And we have to live with it and witness it every day. Ella's life has exposed me to so many rich things-so many wonderful people and experiences. But it's also exposed me to suffering and loss so much more than most typical parents would see.

So here I am. Feeling normal, yet not. Feeling thankful, yet heartbroken. Wishing CdLS didn't exist so these families wouldn't have to say goodbye to their babies so soon, yet feeling blessed by the amazing things it has brought into our lives. I feel stuck in the middle of this crazy beautiful life and a little unsure of which direction to turn.

My friend Christie said it perfectly. Our "normal" is really so far from normal. It's not normal to see a friend lose a child nearly every week & wonder if/when it's going to be your turn. While most days I love our "normal" because it's unique & it's ours & it's something we wondered if we would ever have, sometimes I wish we could have a different "normal".

Please keep all these families in your prayers.

Today you are Five

Today you are five. 

Five years old! 

We've come a long ways baby girl.

You were so tiny. So delicate. 

Such a mystery. Such a fighter. 

We had no idea what to expect from you. No idea how our lives would be changed. 

We were scared, unsure, uncertain of what the future held. 

You haven't disappointed.

If someone would have told me on this day 5 years ago that I would have a five year old who was still mostly non verbal, I would have been heart broken. If they would have told me you were still the size of most 2 year olds, I would have been crushed. If I would have known you would still be wearing diapers at this time, I would have felt despair. If I would have known of all the hospital stays, handfuls of specialists and endless therapies I would have been discouraged.

I'm glad I didn't know. 

Because that's not the whole story. That's not YOUR whole story.

I didn't know so much about the future. I didn't know how you can communicate more with your beautiful eyes than most people can with a thousand words. I didn't know how hard we would fight for you to eat orally and grow and get to where you are. I didn't know how very capable you would be. 

I didn't know how you would excel at school and learn your letters so readily. I didn't know how you would light up our lives and the lives of so many around you.

I didn't know how inspiring you would be.

I don't think about it a lot, but the truth is just like 5 years ago, sometimes the future still scares me. Just like 5 years ago I don't know exactly what to expect or what our lives will look like down the road. But I have learned one thing. That I only have to live for today.

So today we will play doll house. And trains. And paint our nails. Today we will chase your brothers and tackle them and giggle. Today we will play kitchen. And today we will lay your dolls down for a rest and rock them so delicately like you do. Today we will eat cake. And ice cream. And be thankful for every moment we've been given.

Because today.. You are five.

The Snow Day

I don't have much time to blog today (story of my life..) but I posted this on my personal Facebook page a week or two ago and wanted to document it here as well. 

Ella has never been a fan of snow. (I tried to find the picture I know I have somewhere of us trying to take her sledding but couldn't find it. Use your imagination.. then add a little more screaming and some big fat alligator tears. There you go..) She has refused to put her feet down in it, walk in it and generally doesn't want to be outside when the sun isn't shining and the temperature is below 65. I've come to accept that it's just the way it's going to be and I won't be planning any big family skiing trips in the near future. But that didn't stop me from trying to encourage her to put her snow pants and boots on when we had a snow day the other week. For two days straight while her brothers went out and played in the snow every chance they got she would watch them go, sometimes bringing me her snow pants and acting like she wanted them on, then running away saying "No no no!" when they actually came close to her body. Finally Sunday came and I was talking about how I probably wouldn't even pack snow pants for school the next day since I KNEW she wouldn't put them on. Then at lunch that day I was telling the boys how glad I actually was that Ella doesn't like the snow, because forever and always now I will have an excuse to stay in the warm cozy house and drink coffee and hot chocolate and bake cookies and watch Christmas movies with my girl. I suppose I could make that sacrifice.

Right after lunch the kids went out again to play in the snow and Ella and I watched them out the window scooping off the patio. 

Or something...

Eventually she ran off and I thought she went to play. Instead she came back to me, bringing her snow pants and boots (neither of which she had ever actually worn). I wasn't super surprised.. she had done this before. But never followed through. I held them out to her, imagining she would run away crying again, but much to my surprise she actually slid her legs in the pants and let me pull them on! Then she actually put on her boots (HUGE for the girl who only wears very specific shoes).

 I was completely shocked at this point, but thought.. she'll never let me put her coat and hat and gloves on over all this. I had to document even this accomplishment with a picture in case it all went sour soon after. 

And then she put the rest on.. 

I thought--Well.. maybe she put in all on, but she'll never actually go out and walk in that white stuff.

Okaaaaayyy... but she probably won't want to get on the sled. 

Humph.. 

Well how about that..

I think it was at this point that Nolan yelled out "What's your excuse now, MOM??" 

Needless to say this girl, who never stops surprising me and absolutely never ceases to amaze me, was rewarded with a warm cup of hot chocolate and all the cookies she could eat.

The kids are all home again for another snow day today.
It's gonna be a good winter.. :)

Happy Halloween!

Happy Halloween!!

From: The Wizard, Glinda, Tin Man, Scarecrow, Cowardly Lion, Dorothy and Toto.

In case you were wondering

if Levi looks like his brothers at all...

Yup.

School: Not What I Expected

Ella has been going to school for a month now and I can honestly say things really aren't going at all like I expected..

For example, I expected her to have a hard time leaving me in the mornings. I thought she would be upset and scared and unsure and take a long long time to transition to riding with a 'stranger.' 

Instead? I can't shut the door fast enough after I put her in the car in the mornings to go to school. If I even try to chit chat with her aide for a minute, Ella is pointing at the door saying 'shut.. door. shut.. door.' This girl has no issues whatsoever leaving me and cannot WAIT to get to school.

I expected her teachers and aides to have a hard time communicating with her and knowing what she wanted or needed. I was worried that I was the only one who knew her so well and no one else would be able to understand. 

I didn't expect that everyone would pick up on her signs so quickly and be able to know exactly what she is trying to tell them.

I expected to have to be diligent about pushing for what she needed and ready to advocate on her behalf at every turn.

I didn't expect every single person who works with her to go above and beyond their role to get her things I never even thought of her needing (pencil grippers for her silverware at school, a 'teething' necklace so she doesn't put the toys at school in her mouth..) and bringing things from their own homes, or buying her special things to help her.

I expected the kids in her class to have reservations about playing with her and including her when they couldn't communicate with her very well. 

I wasn't expecting the school to text me this picture of eleven little girls waiting their turn to be able to push her in her new swing at school.

I expected to be content with sending her only 2 mornings for a long time.

I certainly didn't expect to be the one setting up the meeting only a few weeks into school to discuss sending her more days because she is doing so well and wants so much to be there on days she's at home.

I expected her to be crabby and exhausted when she gets home.

I didn't expect one of my very favorite parts of the day to be when she comes home from school and seeing her eyes light up as we go through her folder and read the notes her teacher, aide and therapists have written and talk about the things she did that day. She is SO proud of herself and it just shines through her.

I expected her be the same little Ella she always has been.

I didn't expect two separate people to tell me last week, the minute she walked in the room that they could tell something was different. The librarian at story time said she immediately could see the difference school is making as Ella was just so much more confident and independent. And one of the gymnastics teachers asked what we did this summer because she was so different (after we'd been there about 2 minutes)

I expected her to maybe learn a few colors this year while she was at school, but my ultimate goal was mostly just get used to the idea of being in a classroom and listening to a teacher. 

I most definitely did not expect her to point at the correct letters on my t-shirt on the 2nd week of school and say, "EEEEE!" I did not expect her, after only a handful of half days of school, to know the letters E, O, C & L and be able to find them on her own, in books, on signs.. everywhere! I did not expect to hear that academically she's right on track with her peers. 

Ella pointing out the 'E' appropriately enough in "DREAM BIG"

Well, at least I was right about one thing.
I absolutely expected everyone to adore her.

Spot on. 

Ella Goes to School

Last week was the start of another official 'first day of school.' Now is the time of year I would typically write a post sobbing about how hard it is to let these kids go and grow up, how much I miss them and summer, and how quiet the days are now.

WAAAAHHHHH!!!! Okay.. got that over with.

But this year was a little different. This year I wasn't just letting my older boys go.

This year was Ella's first day of school too. 

For Ella's first day there was so much more to plan for. So much more to prepare for. I had a hard time letting the boys go to preschool when they were 4. (Let's face it.. I still have a hard time letting them go at 9 & 7) but this was much more than buying them a new backpack and pulling out my hair trying to locate the extra large 12 count triangle tip box of Crayolas on their back to school list while navigating the crammed-with-people-because-its-tax-free-weekend-way-too-narrow-Target aisle with 5 kids in tow. This was much more than a stereotypical emotional 'how did my babies grow up so fast' morning. This required months of planning. Therapy sessions, IEP meetings, conversations with other special needs parents, transportation negotiations, piles of paperwork, and sleepless nights worrying. How would she do at school? Would she be scared? Would she cry and wonder where I was? Would the other kids accept her? Would she make friends? Would her teacher be able to help her? Would it be too overwhelming? Would it be worth it?

My very top concern was who her aide would be. 

Fortunately we had a plan.

And this is where the story goes completely wrong.

We planned to have an aide hired last spring. She could attend her IEP meeting and learn all about CdLS. I made a sign language book to give her with all of the signs Ella knows so she would have time to learn her language. We scheduled dates for summer visits so Ella would be comfortable with her at school. We exchanged phone numbers and email addresses and I almost hugged her at our first meeting because I was just so relieved to know the person the school had hired was kind and calm and loving. That all started out smoothly enough. Until the aide backed out halfway through the summer. Mere weeks before school another aide was hired. We were able to meet with her a few times, but oh wait--she wouldn't be there the first day of school. That's okay--the preschool room aide who Ella was semi-comfortable with would fill in. Oh wait.. nope. Two days before school started I found out she resigned as well. So the very first day of school left us showing up having absolutely no clue who I was turning my child over to. My precious girl, who only last year started allowing other people to look in her general direction without screaming bloody murder, was now to be left in the hands of a complete stranger. 

Ella knew something was up from the very start of the day. Why is mom fussing with my hair? Why are we rushing through breakfast? Why is that crazy lady taking all these pictures? We've visited the school many times to get Ella comfortable there and every time she LOVES it. She knows her brothers and grandma are there, so I really wasn't all that worried that she would be scared. I mean.. we planned for this. Except when we got to the school Ella refused to get out of the car. And when I finally did pry her out she refused to walk, which motivated Hudson to also decide his legs wouldn't work either. *sigh... Once in the room it took awhile for Ella to warm up to her surroundings and her temporary aide who is now going to be the preschool aide who was filling in for Ella's real aide who was unable to be an aide that day. Understand why Ella might have been confused?

Anyways.. I ended up staying in the room with her for about an hour while Hudson played and Levi slept in his carseat in the corner. (Thank you God for a baby who is still content to sleep a lot!!) When their class went down to an assembly and I peeked in to see Ella sitting alongside her classmates with her aide by her side I snuck out. I worried about her all morning, but when I showed up to pick her up at noon she was walking down the hall, hand in hand with her aide. When she saw me her eyes lit up and she reached for my face and said "Mom!" in the sweetest little voice. She then proceeded to walk down the hall blowing kisses to everyone we passed. She was SO proud of herself and had the biggest smile. She was ready for this.

However, I couldn't breathe too big of a sigh of relief yet. I knew we still had a big hurdle ahead of us. Transportation. The first day of school I drove the kids the almost 15 miles to school and picked them up again. The rest of the days the older boys would get on the bus at 7:00 and Ella's aide would pick her up separately around 7:45. We had it all planned out. Until this morning rolled around bringing with it a giant thunderstorm. Because of course.. Rain was pounding down, lightning was flashing all around us.. I ended up driving the boys to the end of the lane right before 7:00 so they didn't have to dodge the lightning bolts on their walk down and we waited. And waited. And waited. And no bus showed up. Eventually we drove back to the house and sprinted back in the door, soaking wet, only to call the bus barn and find out they changed the bus route and the boys would now be getting picked up about a half hour later. Oh. Would have been nice to know.. By the time we got that all figured out it was almost 7:30 and I had only just started getting Ella ready. So we hurriedly got dressed and ate breakfast. You guys.. it's day 3 of school and already my plans of providing the kids with a healthy breakfast to fuel their day have been ruined. White bread with butter and cinnamon/sugar. Because you know.. breakfast of champions right there. Due to our little construction project going on here, we had to walk up the hill behind our house to meet her aide because every time it rains there is no place to drive remotely close to our house. Pretty much every direction 50 yards out from our house looks like this.

  and this

and this..

As we walked to the car Ella's aide stepped out to greet her. And I see she's wearing a dark rain jacket with her hood pulled up over her head. Uh oh.  Ella is terrified of that look. For all the planning we did, for all the scenarios we tried to envision, for all the possible situations we tried to foresee happening, we neglected to include this obviously important piece of information in her IEP: 

'Please don't come to our house Grimm Reaper style asking for our daughter.' 

Side note: Ella's aide was wonderful and went and sat back in the car and took her rain coat off after realizing it was scaring her. She also rode home with her when Ella was scared of her afternoon driver so she would feel safe. THANK YOU!

So for all our planning.. pretty much nothing went as planned. Did I mention we all started to come down with colds this weekend? Nothing says back to school like a bunch of crabby snot nosed germ kids. However, Ella had a great day at school again today and I think this is going to be a really really good thing for her. I already love reading the notes from the teacher about how well she does following her classmates and participating in all the activities. I love seeing her face light up when I ask her questions about her day or mention things they say she did at school. I can tell she is proud of herself and after our start to today, things can only get better, right??

Levi Anthony

"You should probably go pack a bag," he said.

"Yeah.. yeah.. I will."

"Go pack a bag."

"In a little bit."

"Maria.. you really need to pack a bag."

"I KNOW! I will."

Guess who never got around to packing a hospital bag? 

I didn't really think that entire day of not feeling well, a very sleepless night, and those pesky little pains in my lower abdomen meant I was going into labor. In my defense it didn't really feel like the other times I started having contractions. Yes, I've had 5 c-sections, but have gone into labor THREE of those times. (By default, Charlie and Hudson are the only two children still eligible for 'Mom's Favorite Child.' The others were out of the competition before they were even born.)

Anyways, 2 2 1/2 3 weeks ago (its taken me awhile to finish this blog for some reason..) on Monday morning July 6, 2015 I made an appointment with my doctor 'just to be sure', gave a hasty good-bye to my children, told them I'd be back in a few hours, and headed off sans hospital bag. (and consequently sans camera as well). :( I had so much to do planned for that week. We had scheduled our c-section for July 14 so I was expecting to have 8 entire more days to make freezer meals, dig some baby clothes out of the attic, maybe a bassinet, possibly a few blankets or burp cloths, heck.. I might have even gotten crazy and bought a box of diapers or 2.. but that was not to be so. As I sat alongside the road and waited in road construction (in labor.. unbeknownst to me) I pulled out my '10,000 Baby Names' book to pass the time. (Oh yeah.. come up with a name for our child was also on the list of things to do that week).

Once I was at the hospital I was hooked up to monitors, which showed I was having contractions every 3-5 minutes. WHAT?? I could barely feel them. I was like one of those women you really love to hate who go into labor saying "Well.. I kindof felt a pinch and then the baby was just out!" :S I laid in the hospital bed for a few hours being monitored before my doctor officially made the decision to take the baby that day. She went to talk to the surgeon about what time would work best, while JJ stayed at work for awhile. I hadn't heard back about a specific time, wandered off to use the restroom, came back, chatted with the nurse awhile.. Around 2:00 the nurse casually asked if my husband was on the way. I said no because we weren't sure what time the surgery was scheduled for. She looked surprised and said, 'Oh! When you were in the restroom the doctor came in and said we would do it at 3:00." Aghhh! Since he was about 45 minutes away this caused some minor panic. 

TEXT: "Hey.. uhh.. you might want to get on your way. Baby is being born in an hour."

(That's about the highest level of panic possible for me.)

Nevertheless, JJ made it in far less than the 45 minutes it should have taken him to get to the hospital, and was there in time to see his fourth son come into the world. Levi Anthony was born at 3:39 pm and weighed 8 lb 5 oz and was 21 inches long. Considering he was 2 weeks early, he might have been a family record breaker had he been full term. (The other boys were all over 9 lbs.) 

Oh, and no camera? No problem. That is.. if you have an awesome anesthesiologist who happens to have his iPhone on him.

I was pretty much in shock the rest of the day considering we had NOTHING ready for baby but at the same time so SO relieved he was finally here. This one, in true typical youngest child fashion, has been vying for our attention ever since conception. It seemed like every week he was giving us something else to worry about or monitor closer, having us drive 2 hours to see a perinatologist on multiple occasions and at one point requiring twice weekly ultrasounds for about a month or more. When he was born, his cord was wrapped around his neck two times, so he was more than ready to come out and we were more than ready to have him here! Besides.. you know... not at all being ready to have him here. ;)

I'm happy to report that Levi's youngest child shenanigans haven't continued outside the womb (yet). He has been THE sweetest baby and his older siblings absolutely adore him. And let's just say, I now completely understand how the youngest child would get to be a little spoiled at times.. I can already feel myself holding him just a little tighter.

Everything has been going surprisingly really smooth. That is.. if you don't factor in the massive construction that is our home right now. And the fact that the first full day we were home from the hospital our water heater got knocked over, leaving us without running water (and still today without hot water), then 2 days later we got the word that our furnace had to be removed, only you know.. on the hottest 110 degree day of the year. And then there was that chimney that had to be removed that covered our entire house in a layer of dust that will. not. go. away. I've seriously mopped the floor more times in the past week than I have the entire past year and it still seems to always be dirty. SO thankful to have grandma's house nearby to be able to wash our dirty dishes, bathe our dirty children, escape the heat, and have somewhere to nap while tractor fumes invade our house from digging out a basement underneath. 

So yeah.. just your basic ideal living conditions to bring a new baby home to! 

Despite that, we are all doing well and have even survived an entire week with daddy back to work.

That's a success!

We love you Levi Anthony and we are so glad you're here!

Five Minutes Underwater

10 Years. A Decade. 3652 Days. One Third of my Life. 

It alternately feels like so so long ago, 

yet at the same time only yesterday 

that we walked down the aisle toward our happily ever after.

The years have gone by so fast.

Being married to you has felt like only 5 minutes. 

Underwater..

Happy 5th 10th Anniversary to the man who still surprises me every day.

To my middle-of-the-night baby bat killer.

whose sophisticated sense of style 

always leaves me impressed.

To the mature, grown man who cares for us

and protects his family (note: the foot that is barley missing whacking Ella's head..)

To my husband who takes us on such adventures as whale watching

ziplining,

and horseback riding.

Who never lets his boys down

"Daddy! How high can you climb?"

Me muttering to myself: "More like, how far can you fall.."

And takes his kids fishing wherever they want

whenever they want..

I LOVE YOU! 

This guy is all those things and more. 

He is also the world's strongest dad

who is always there to help our children with their homework, 

(even when I'm not sure who 3rd grade math is more confusing for..) ;)

Who goes on the sweetest picnics with his little girl

and takes the coziest naps with his boys.

Who watches Saturday morning cartoons with the kids so I can sleep in,

reads bedtime stories every night,

and who I spontaneously see taking the kids on a walk to get them out of my hair so I can make supper

You are the best dad I know, the most supportive husband, the first person by my side when I'm struggling with something and don't want to talk about it, yet you somehow get me to. You are still my best friend and even after 10 years and (almost) 5 kids later we actually still like spending time together. 

Happy Anniversary to the guy who still picks me wildflowers from the side of the road, 

who supports all my dreams, and loves me unconditionally.

Thank you for being by my side the past 10 years, for building this crazy beautiful life 

we have together and for always, every single day, making me laugh.

Ella's Run & CdLS Awareness Day

I had a blog reader email me and ask the other day, "So.. how did Ella's Run go?" I was a little confused because I thought, "Why don't you just read the blog about it?" And then I realized..

I never wrote a blog about it. 

Oh, right.. In fact my last blog was way back in April. Oops.. Worst. Blog. Writer. Ever. 

Do you think this has any correlation with May being right in the throes of my 3rd trimester with baby #5 and also the beginning of summer break for my other kids? Quite possibly yes, absolutely YES. After the little blessings finally go to sleep at night basically the only thing I have enough energy for is sitting down on the couch and staring at the wall for awhile. Really. (The only reason I'm writing this right now is because I woke up at 4:45 with the baby pressing against my bladder and haven't been able to go back to sleep again.. Naps for all today!!) I read a blog on pregnancy the other day that said something about when the mere thought of movement causes you exhaustion. Yes, that is 100% where I'm at. 

So anyways.. CdLS Awareness Day.. Ella's Run. Right.

I know I said it last year, but I just can't emphasize enough how much different CdLS Awareness Day is to me now than it was when Ella was first diagnosed. That first year I wanted nothing to do with raising awareness for CdLS. I didn't want to talk about it, think about it, goodness gracious definitely not tell anyone my child had it. Now? I actually really love spreading awareness. I love knowing we could be helping someone find a diagnosis, letting someone know they're not alone, giving someone hope who feels hopeless. It still blows my mind that I would willingly go on live TV to talk about my daughter having a rare genetic syndrome.

I say this again because I know there are mamas (and daddies.. and grandparents) out there just getting this diagnosis, struggling to deal with all the questions and whys and what if's and doctors and therapists and it can all just be SO overwhelming at first and you might be tempted to look at our family and think "It must be so easy for them to raise awareness. They must have accepted this diagnosis so easily. Why am I having such a hard time?" I want to tell you that it hasn't been easy and it's okay to have a hard time or not want anything to do with CdLS right now. There is hope and there is a future and who knows? You might just find yourself on live TV in a few years talking about that thing you never wanted to even think about, assembling 'swag bags' for 5K fundraisers and even writing a blog over a whole month later about it.. ;) It might be easy to assume that I have the type of personality that enjoys taking charge and planning things and talking to strangers.. which, if you know me really couldn't be farther from the truth in my opinion. Just one of the many ways Ella has changed me and brought out desires in my heart I didn't even know were there to start with.

The actual run, which was held on CdLS Awareness Day, went so so good! We are SO THANKFUL to everyone who came out and helped us raise awareness for CdLS and support our Ella. I really can't even begin to describe how much it means to our family to have that kind of support. The weather was a little chilly for our fair weather girl, but she enjoyed snuggling up in Papa's coat the entire morning.

Ummm... yeah.. so totally forgot to take a picture of the starting line so here's a picture of everyone's backsides. You're welcome.

We had a great turnout and raised our goal amount of money to donate to the CdLS Foundation and also put some away toward bringing Ella to future Conferences. We are so thankful to all the businesses that sponsored our tshirts or donated supplies. 

Ella with some of her therapists

One of my LEAST favorite parts of fundraising (okay, actually the part I absolutely despise with a passion) is calling people asking for donations, but at the same time it is probably the area where I feel the most blessed. I love when businesses owners answer the phone and hear what we're doing and without hesitation volunteer to help out. I love spreading awareness to people who might have never heard of CdLS otherwise. I love giving them our CdLS bookmarks and seeing them look at the picture of the kiddos on there and saying "Oh how cute!" I'm still working on getting all the thank you's out--I'm trying to hand deliver as many as possible, which of course requires such sacrificial acts from me such as taking the kids to Jitters (the donut shop who donated to the run) to drop off the thank you and of course stopping to eat some donuts as well. Of course. This all takes time, you know. Sidenote: If anyone in the area has not had a Jitters donut, you need to go ahead and do that like now. DE-LISH. 

So again, I can't say it enough---THANK YOU THANK YOU
everyone who helped make our 2nd Annual Ella's Run a success. 

We are so grateful to each one of you!

Ella's Run

Last year we hosted our very first 'Ella's Run' 5K Fundraiser. We were so overwhelmed with support and had such a good time.. that we've decided to make it an annual event!! 

This year we are planning the 2nd Annual Ella's Run for Saturday May 9th, 

which coincidentally also happens to be CdLS Awareness Day. :)

Our main goal with Ella's Run is to raise awareness (aka: acceptance) of CdLS-hence the correspondence with CdlS Awareness Day- and to teach others about what CdLS is and how it affects people. The more people that know and are talking about CdLS the less awkward and isolating it becomes to families dealing with it personally.

The second goal is to raise money for future CdLS Conferences-the next one being in Orlando, FL in 2016. We have had such amazing experiences at Conferences and we want to try to attend as many as possible, especially while Ella is young. We don't know what the future holds and the possibility that travel will only get more difficult as the years progress (remind me of this as I try to board an airplane with 5 small children in tow next summer..) weighs on our minds. Conferences are the absolute best place (and only really..) to be able to receive head-to-toe consultations with experts from a range of medical and educational fields, attend workshops, and connect with other families facing similar challenges. We miss seeing our CdLS family so much.. We can't wait until next summer!!

And we are very excited about our last goal-to be able to donate a portion of our proceeds back to the CdLS Foundation! The Foundation has been so good to us-from day 1 of Ella's diagnosis when our geneticist pointed out a horrid black and white picture from an outdated medical journal and told us that's what Ella had, then promptly closed it and directed us to the CdLS Foundation's website instead where pictures of kids playing and laughing popped out at us. From sending us information, answering questions, directing us to the right doctors, to always knowing our name when we call and making us feel like we're old friends. And plus.. they have a giant poster of Ella hanging in their office.. so there's that. ;) 

If you want more information on the 5K (and NO you don't have to run it) you can search Ella's Run on Facebook and join the group where you'll find registration forms. If you want to guarantee a t-shirt for the run (or just order a t-shirt!) you need to get your registration in by May 1, which is NEXT WEEK!! You can also email or message me and I can get you added to the list.

We are really excited about Ella's Run and it would mean so much to us to have a great group of people show up to support CdLS Awareness and have a lot of fun!

Story of my Life

I've noticed that sometimes when we're around other children people take extra precautions with Ella. They say things to their kids like "Be careful with her!" or "Don't get too rough around her." Most of the time I really do appreciate this. Ella does have a tendency to fall more easily or not be able to catch and protect herself when she does. Although sometimes I admit I just want her to be treated like 'one of the other kids'. Because.. really-she's not quite as delicate as some people think. I found a video that proves she can handle someone being a little rough with her. 

(Sorry for the terrible quality-the windows were too bright in the background! I think you can get the point though..) :)

P.S. Now that I've figured out this video this, I might just be unstoppable!!

GYMNASTICS RECITAL!!

Well, I did it you guys.. I spent 2 hours on the phone with tech support, downloaded a $40 program and figured out a way to upload and view my videos on my computer. Which left me with 257 random folders of videos that showed up on my computer in no particular order. Funny how most days I can't seem to find a few minutes to fold a basket or two of laundry, but this weekend I dedicated at least 10 hours to manually uploading, converting, and organizing every video from the past 5 1/2 years. That included staying up until 1am this morning, then Hudson conveniently waking up and screaming for another hour leaving me with about 4 hours of sleep. But that's totally ok.. you really don't need that much sleep in your 3rd trimester of pregnancy... (she says sobbing into her one cup of allotted coffee of the day)

But ANYWAYS.. before I go take a nap here is (finally!) the video of Ella's Gymnastics Recital. She did SO GOOD and I was so so so proud of her. Now, keep in mind when I say 'SO GOOD' I'm not talking about performing sequences of perfectly executed roundoffs and backbends with exquisite form. I'm talking about how far she has come this year. I'm talking about being out on the mat by herself without me there (something she barely even did in practice). I'm talking about following directions, waiting in line, not running off and doing her own thing. I'm talking about not completely freaking out at the crowd of people watching her. I'm talking about wearing a different than normal leotard (it's a big deal.. trust me). And mostly I'm talking about taking the absolute best Ella can do and totally rocking it. 

Here are a few pictures first and then the video, which of course my battery went dead during so I only got about half of it, but oh well. Better a little than nothing. And better late than never.. And uhhh.. better to always have low expectation for yourself apparently. ;)

Birthday Bash

I PROMISE I will get around to posting about Ella's gymnastics recital, but apparently my new computer isn't compatible with my video camera, sooooo... I might need someone tech smart to help me figure out what to do! In the meantime, we've had a pretty busy week around here. Two of my very favorite boys in the world had birthdays this week. NINE and SEVEN! How did that happen?

They got to have a friend sleepover, stayed up waaaaaaaay too late, ate a bunch of junk, played outside the entire evening/next day (I hardly even saw them), and got filthy dirty. So pretty much the perfect boys party! I seriously just love having little boys. Hand them a shovel, a sandpile, some boards and nails and they are good for HOURS, maybe even days if you throw a few sandwiches out the window every so often. 

Thank you to everyone who was able to come to their party and celebrate with them (especially the parents of their friends who probably had very tired, grubby children returned home to them)! I think we're finally starting to recover from it all. 

The morning of the birthday party (which was also Charlie's actual birthday as well) we were also excited to find out that one of our goats had her babies! Charlie is thrilled to share his birthday with such little cuties and thinks it's SO cool that one of them didn't know how to nurse so we got to milk the mama and bottle feed her. Uhhhhhh... yeah. Very cool. Until the 1am and 5am feedings!! (Thankfully she's got it figured out now!)

And the next day 2 more babies were born!

We also have been SUPER busy getting our home ready for an appraisal so we can (hopefully) get a construction loan to dig out a basement under our house. We worked way too long into the night way too many nights to get everything just perfect.. for a 10 minute walk through. *sigh. Now we wait and see what they say I guess.

It's been a crazy busy, but fun filled week with hopefully lots of good memories made. Charlie has been practicing his new scooter on the deck every day and I got to watch Nolan completely biff it on the lane this afternoon trying to figure out his new bike with hand brakes only. No broken bones yet, so all in all I consider it a success. :)

That's What She Said..

Sometimes I feel like I was jipped a little bit on the 'toddler stage' with Ella.

Since she crawled, walked, talked, everything so late, development was a little different with her. 

There's been a lot of things I missed and have been looking forward to experiencing with Hudson.

"I can't wait until Hudson is in that 'toddler stage'", she said

"It will be so nice when he can get around on his own."

"Ella was never much of an explorer. I hope Hudson is." 

"It's so cute when they start getting into things," she said 

"It will be so much fun to chase him around the house."

"I'm sure he'll be content with all the toys he has to play with."

"Won't it be great when he can get his own snacks??" 

"I'm so excited for when he's bigger and he and Ella play together better. They'll be best friends."

"That toddler stage I missed out on is just so much fun." 

 "I can't wait to do it again."

That's what she said...

The day someone called my daughter 'creepy looking'

"You are having SUCH a good day today Ella!" I exclaimed as I pulled her giggling squirmy body out of her carseat.

We had been to a mini-MOPS meeting, which she hadn't been to in a few months because of random illnesses and previously scheduled doctor appointments. It wasn't the same teachers or layout as normal, but she still loved seeing all her friends and being around other kids and did SO great, something that never ceases to amaze me even after all these months of me leaving her there.

We had been to therapy, which she was SO excited about since we missed last week (random illnesses again.. story of our winter). She went with her therapists all by herself (big girl!), imitated all her sounds in speech (I heard.. like I said I wouldn't know first hand because she was all by herself) and did great with her other therapies as well.

We picked up chicken nuggets and french fries (her favorite) and I tossed food at the kids over my shoulder drove to Open Gymnastics while the kids happily munched in the backseat.

We hadn't been to Open Gymnastics (basically an open gymnastics gym for kids to run crazy in for an hour and a half) for quite awhile. Since the little kids had both slept in that day and we were already in town for therapy I seized the opportunity and took them on a spontaneous trip there. Ella was SO excited and ran around on the mats, jumped on the trampoline and even jumped in the foam block pit, something she never would have considered doing a year ago. At one point she was clear across the gym from me, jumping with kids she didn't know, without a care in the world if I was by her side or not. So much progress!!

I had had a nice chat with the lady in charge, who is familiar with Ella's story, about how she is doing, and also another mom I had just met who had a son born very premature and had been taking him here weekly. She watched Ella and told me over and over how adorable she was (of course we were instant friends after that..) We swapped stories about doctors, our children's specialists, therapies, developmental milestones.. Maybe not a normal conversation for everyone, but for us it was.

We were all having a great time when it happened.

Ella was in the foam block pit and 2 little girls, probably 4 or 5 years old, were standing nearby. One of them looked at Ella and said to the other "That girl is creepy looking."

My heart jumped to my throat and my eyes widened.

"Yeah." The other looked at her and replied.

I swallowed hard and stared in shock not knowing what to say or what to do.

A few long seconds dragged by.

My beautiful girl looked at them and smiled. Then she started crawling toward them in an attempt to make new friends. She loves to do that.

The first girl looked at the other and said in an almost disgusted way, "She's coming closer to us."

That's when the mom, who was standing nearer to them than I, looked over at them and whispered to them for a few minutes. I have no way of knowing what she said but the girls didn't say another word.

I sat there, still staring, still in shock, still not entirely knowing what to do.

So, ignoring the very mature part of myself that wanted to inform those little girls that the two shades of pink they were wearing totally did not match and honestly I didn't think their pixie hair cut did anything flattering for their face shape, I did the only thing I could rightfully think of at that moment. When Ella crawled out of that foam pit I held her tight, kissed her head and told her she was the most beautiful little girl in the world. Then we went home, took naps, and made the chocolatiest, most peanut butteriest cookies I could think of and ate them together. Sometimes I guess that's all you can do.

I KNOW my daughter is beautiful. I know she has a beautiful heart. And a beautiful spirit. I don't need anyone else to validate that for me. She has so many people that think that and love and care for her unconditionally that it shouldn't matter in the least what a 4 year old girl I will probably never see again said in one single moment. But I would be lying if I said it didn't hurt. A lot. I've never thanked God so much before that Ella isn't even close to having the mental capacity to understand what they said.

I wish I could have done things a little differently. I wish I could have walked up to those girls after i heard their comment, smiled warmly at them and introduced Ella to them so they knew she had a name. I would have told them something about her, like that she loves to play with babies, so that they knew she was a little girl just like them. I would have answered any questions they had, like maybe why her eyes don't open all the way, in case that's what they thought made her look 'creepy.' The way it worked out I wasn't standing exactly near them. To avoid just yelling across the pit and into the busy gym full of screaming children I would have had to lean my pregnant belly over the edge of the foam pit, drag Hudson out of there, probably kicking and screaming, walk around the pit, past the mom, probably causing a panic attack in Ella if she thought I was walking away from her.. I really didn't want to cause a scene.

I don't think these girls were horrible, terrible, spoiled rotten bratty little no good kids. (Fine.. maybe I thought that just for a second. Or two..) And I don't think the mom was a snotty callous witch (Fine.. again. Maybe just for a second). I think what happened was just two little kids seeing someone who looked different than them and in their mind that was 'creepy' to them and a mom who was just as frozen in shock as I was.

If this ever happens to you, if your child ever says something like this to another-- first, please don't act like you didn't hear what your child just said while praying to Mary, Joseph, Baby Jesus and all the angels and saints that the mother of the child didn't just hear what your sweet little Suzy said. Chances are if you heard it, she heard it. I can't say for certain that this particular mom heard what they said.. but I'm pretty sure. I can understand the level of mortification you would be on at that moment, but do not ignore the comment. Even though you might want to just melt into a puddle right then and there (which is ironic considering, even though that mom may very well have been a wonderfully nice lady, in that instant I started to imagine her black hair growing down to her waist, her skin taking on a green tint and I'm pretty sure if I would have thrown a bucket of water on her she really would have melted.. but anyways) it is SO SO important to say something. We have opportunities for teachable moments every day with our kids--this is one you need to take. And by not saying anything, you are still teaching them something whether you intended to or not. I do appreciate that the mom eventually did say something, however the absolute BEST thing she could have done was help her girls form a relationship with mine, exactly what I could/should have done had I been standing a little closer and done so without causing hysteria in both of my children.

I'm so used to the overwhelming love and support our family, friends and community have shown us that I just really haven't had many (any? possibly..) situations like this arise before. It might be the first, but unfortunately it probably won't be the last. *insert heart breaking..* Please help me in educating our children, teaching them how to interact with others different from them. Don't take the easy way out--stand up and do what you know is right, even when it might be incredibly difficult and hard and oh so uncomfortable. Please.. do it for Ella.

Twas the Night Before Valentine's Day

Twas the night before V-Day when all through the house

There was a tiny critter stirring--it was the louse.

We envisioned the creatures crawling all over our skin

And we could feel every one like a prickly pin.

The children were nestled all snug in their beds 

while tiny little nits lay dead on their heads.

Their mother had combed and brushed every hair

For hours and hours with precision and care.

With nit comb in hand and foam spray in other

We started on one child and worked to another.

Three were infested while only one left was safe

but even he was treated while he lay there in wait.

They rested on bedding that had been washed twice that day

While their poor mother's hair turned more and more gray.

Their father, he wanted to shave every one,

But no one was willing, son of a gun! 

Plans to visit family that weekend had all been aborted

Cousins and birthday parties-our days were now thwarted.

No Valentine's flowers or candies were given

Not while a single lice was still livin'.

The only Fairy Tale here was the name on the box

Of the ol' lice treatment killer that we smeared on their locks.

No Romeo, no Juliet, no Cupid here either

All we really wanted was to sit and take a breather.

Fortunately we know true love doesn't come from a store

It's about the good and the bad days and much much much more.

So this Eve for our romance, we shall bleach the whole house

And we'll be damned to get rid of every last effing louse.

What would I change?

I posted a blog last week (I know, I know.. try not to act so surprised) but I deleted it before anyone had a chance to read it. It's been a hard month around here. Maybe it was overactive pregnancy hormones, perhaps it was too many sleepless nights, or quite possibly it was from the stress of having sick children for the past 43 days (but who's counting, really??). Hand Foot & Mouth Disease, Colds and Croup, Stomach bugs, Influenza, and Pneumonia, OH MY! but I know my post ended up coming off as pretty negative.

I got a lot of emotions off my chest. I talked about some of the hard things about being a parent of a child with special needs. I wrote about the mind numbing paperwork that I keep busy filling out every year right around Ella's birthday. A time when I'm trying to focus on the blessing of another year and all the accomplishments we've made, is also the time every single program/service/therapy she is eligible for requires updated and reverified with such pertinent information such as "How do I know the person" and "When did I first meet them?" (I hope conception was an appropriate answer..) And in addition the ridiculous busy work of writing down every single doctor Ella visits, their name, address and telephone number, every single appointment she's had in the last year, what the appointment was for, what tests were run, and what type of care was provided/medications prescribed. Every. single. one. Also, every single therapist she sees, how often, how long, and what specific things they are working on. (Oh, and also the names, phone numbers and addresses of those.) But the worst are the ones that require me to verify that she is still 'disabled', you know, that she hasn't been 'cured' of having CdLS or something.. those are really hard for me. I'm a pretty optimistic person and I try to look on the positive side of things more times than not. However, when filling out these forms it becomes painfully obvious that that one time we were all so excited about Ella scooping up one spoonful of peas, is very different than answering 'yes' or 'no' to "Does she independently feed herself?" Well.. no. Not really. And 'working on unzipping her pajamas zipper' is a far different cry from "Can she dress herself?" Not at all. Or that once she sat on the potty? Much much different from "Is she potty trained?" Not even close.. And knowing about 30 signs and having a handful of understandable words is great.. until you compare it to "Does she speak 2-3 word sentences?" Ummm... noooo. These forms just seemed to magnify all the things Ella is NOT doing instead of my usual mantra of "Focus of what she is doing." It just got to be depressing. Instead of celebrating her life and all the amazing things she's accomplished in the past 4 years I was forced to sit down and highlight her disabilities. Not cool..

I also wrote about the feelings of despair when your child is trying desperately to communicate something with you but can't find the words to express herself. And the heartache of watching anxiety creep back into her life in uncertain situations, just when I thought we had come so far to overcome it.  It doesn't really bother me too much when I see kids her age (or younger) doing things she can't. It's okay. She's happy. She's content. She enjoys her life. That's what's important. But to see her so hindered by this invisible force of anxiety that is very real to her, and to see her happiness compromised because of it, to watch her physically not be able to participate in something she loves because of it, to not be able to talk her through it or basically do anything at all.. is heartbreaking.

I don't have a problem writing about some of the hard things about being a parent to a child with special needs. I want this blog to be about real life and real struggles and they are for sure there. Having a child with a rare genetic syndrome can be very very hard and I don't want to sugarcoat it in an effort to advocate for my child. But after I hit the 'publish' button last week I remembered something. Something pretty important.

A few weeks ago I attended a training workshop at our ESU to help our therapists/service coordinators learn a new way of writing IFSPs. Basically you sat down with a team of interviewers and went through your day from the minute you woke up in the morning to the minute your head hit the pillow at night (or in our case 'the minute you passed out from exhaustion on the couch after the kids were all in bed'). It is supposed to help target key areas in your daily routine that can become part of your family's goals to improve your quality of life. After the interrogation process extensive interview was over I was asked one final question.

"If you could change anything about your life, what would it be?"

I thought for a few minutes. I contemplated. A few things popped into my head. But in the end do you know what my answer was?

Nothing. 

Nothing. I wouldn't change a thing about my life right now. It's crazy. It's messy. It's perfect. It's mine. 

Yes, having a child with special needs can be hard. Some days can be incredibly challenging-physically, mentally, emotionally. But when it really comes down to it, I wouldn't change a thing. And that's what was missing from that post I wrote and why I felt so uneasy about it that I deleted it. It's okay to struggle. It's okay to admit that it's hard. It's okay to feel like you're failing. Because at the end of the day I know in my heart that, hard as it can be, I wouldn't change a thing about any of it.