Name! That! Baby!

read in overdramatic Game Show Announcer Voice..

Aaaaaand now it's time for a round of... 'Name! That! BABY!'

In no particular order, these are pictures of all 3 boys taken at about a week old.. 

#1

#2

#3

I know they're not the total best pictures, but I think there may be a few resemblances, don't you think??

And then there's this one.. 

kindof a giveaway though, huh??

Anyone think they can correctly name each baby? 

Honestly.. I don't even think I could if I hadn't been the one to find the pictures.. :)

Introducing.. Hudson James

We officially present to you Hudson James!

First of all let me start by saying THANK YOU to everyone who has helped us out this past week.. 

For the visits, phone calls, messages, prayers, meals, helping with our other kids, just being there for us.. 

We appreciate it so much!

A week ago Tuesday morning (a week already??? whoa!) began bright and early at 3:00 am by an anesthesiologist carefully inserting a long needle into my spine.. then snapping in it half inside me with a very painful and sickening crunch. Thankfully that was just a dream, but needless to say I was unable to sleep after that.. We had to leave at 4:30 anyways to head to the doctor, so naturally I lay awake and relived that awfuing crunchy sound over and over until it was time to go. I'm sure it really helped my nerves.. Our car ride started out with JJ looking at me blankly and asking, "Sooo... got any ideas on names?" HA! We didn't wait until the total last minute as we technically still had 45 minutes to talk about it. At the hospital, I waited until after the needle had been (successfully) inserted and taken out to tell my doctor about my dream. To which he explained to me that he had seen a needle bend before, but never break. And that if that actually happened they would be able to get it out pretty easily. But if I were getting an epidural instead of a spinal and the plastic broke off, they wouldn't be able to get it out and the plastic would just have to stay in your spine, but it usually doesn't cause problems. Wait.. WHAT??? I thought that was just a crazy dream, not something that actually happens!

Anyways, Baby Boy was born at 7:50 am, weighing 9 pounds 1 oz (his brothers were 9 lbs 3 oz and 9 lbs 2 oz when they were born). As the doctors started to pull him out, JJ saw just his head and exclaimed "It's a boy!" They all looked at him crazy, since.. you know.. the part you would need to see to determine if it was a boy wasn't even visible yet, but JJ knew right when he saw his face that he looked just like his brothers when they were born and just like himself. He was right! Baby Boy went with no name for a little while since my lovely husband proceeded to stand right in the way while they put me back together and cleaned the baby up and I wanted to get a good look at him before fully deciding the name he would have for the rest of his life. Thanks Hon.. :) But when I finally got to see him, even though I appreciated the boys' helpful name suggestions of 'Fartly' and 'Pudding Face', I thought he looked like the cutest little Hudson I've ever seen (not that I really know any other Hudson's, but you know..)

Everyone after that went really well. This is actually the easier recovery I've had so far and I'm back on my feet and feeling much better than I expected! In fact, I actually found a foolproof way to take away all abdominal pain from a c-section on the first day: develop an intense, ridiculously excruciating cramp in your neck, possibly caused by an air bubble during surgery. I promise after you're up all night crying in pain and unable to move your neck even the slightest bit while trying to nurse a 12 hour old baby, you won't even notice your stomach was just sliced open. Although it worked, I'm not so sure I would take my own advice..

Thankfully I had this beautiful 'baby' gift from my thoughtful husband to help me feel better..

Or maybe he found it behind the seat in our car as he was cleaning it out the night before. 

Thank you previous owners! 

(And also for the feminine products and Midol... HA!)

After a few days I was deemed well enough to go home and our happy family smoothly breezed out of the hospital. The older boys happily chatted about who got to sit by Hudson and where in the middle of the trip home they could switch seats so they both had an equal turn, the sunshine sprinkled down on their golden heads, Ella walked all the way to the car by herself like a big girl and we all easily settled into our roles as a family of 6. 

And so we began our idyllic voyage home. 

Life was good. 

Until the second turn out of the parking lot, our *ahem driver took the corner too sharp, rammed straight into the curb, juice spilled all over Charlie's face and lap, tears and screams instantly flowing for said juice, staples went flying from my stomach, and a near strangulation occurred one block from the hospital.

As for how things have been going at home? Surprisingly amazing. I know we're probably in the honeymoon phase of having a new baby, but I was not expecting this. The boys love kissing and loving on their new brother. Even though Ella wanted absolutely nothing to do with Hudson while we were in the hospital, threw a fit when JJ tried to hold him, and two-handedly pushed him away when we tried to hold him near her, she has been ridiculously grown up and a wonderful big sister since we've been home. 

Upon arriving home, Hudson even got formally initiated with a rubber duck party in his bassinet.

I realized the other day though, that as both older boys were playing nicely in the kitchen, Ella was happily running around the house with her rubber ducks, Hudson was sleeping, JJ was sitting on the couch reading the paper (that was kindly delivered to our house last week.. even though we don't subscribe to the paper!) and drinking coffee and I was rummaging around in the attic looking for burp cloths.. since I had kindof forgotten babies spit up sometimes. (SHOUT OUT to whoever makes those nice burp rags to send home with new babies from the hospital. You totally saved us the first day!) that maybe it seems things are a little too easy this week. Isn't this supposed to be harder? Don't worry.. I'm sure that will change dramatically when JJ goes back to work next week.. 

And for those of you who have been on the edge of your seat, anxiously waiting to hear the state of my uterus? Apparently I have very strong uterus muscles. VERY strong. Maybe a bit too strong.. Like, as in, the surgeon had to cut a bit harder than he expected through my muscle and sliced my baby's forehead with the scalpel strong. :( 

Poor boy.. But yay for the open possibility to have another baby someday! :)

We love you so much already Hudson James and we can't imagine our lives without you.

You are the sweetest, most snuggliest baby and we feel very blessed!

Pretty Pink Toenails

When Ella was born I dreamed the typical sort of dreams every mother dreams when she finds out she finally has a daughter. From ribbons and ruffles to pink and polka dots, tutus and tiaras to makeup and manicures, I envisioned hair braiding and tea parties, princess dress up parties and late night giggles. I dreamed of sharing my passions of sewing and building and painting and creating with my daughter, something my boys have never showed any interest in whatsoever. I'm really not a very much girly-girl type, but there's just something about having a daughter after so many years of being outnumbered by boys that ignites these feelings inside you and causes you to dream those typical dreams.

Except nothing about Ella and our mother/daughter journey turned out to be typical. When she was diagnosed with CdLS my whole entire world shattered. Every dream I had for her, every ideal of our lives, every aspect of our future was suddenly put in jeopardy. The typical things every mother dreams of doing with her daughter and often takes for granted were suddenly and harshly ripped away from me. From the "small" dreams like talking about boys and shopping, to the bigger ones like walking her down the aisle someday or having her call me for her favorite recipe to make for her own family, I mourned the loss of those dreams sharply and painfully. Instead of wondering if she would talk to me about her crushes, I wondered if she would talk at all? Instead of being excited about sharing family recipes, I wondered if she would even be able to eat them or if she would need her NG tube the rest of her life? Instead of dreaming of helping her curl her hair before prom, I wondered if she would ever actually go to prom? The onslaught of realization of shattered dreams came daily at practically every turn in the road. Would she talk? Walk? Have friends? Live independently? Have a job? The uncertainties of Ella's life sprawled before me like a never ending desert. The things we would never do together slowly withered under the scorching sun. I felt parched-hopeless and lonely.

So the other day when JJ did something with Ella for the very first time that he probably thought nothing of, it had an entirely different effect on me. It ignited some deep emotions that I thought I had buried long ago. He did something that I, in 2 1/2 years of having a daughter have never done. 

He painted her toes. 

And I do say toes instead of toenails on purpose. See, Ella's toes are tiny. With the teensiest tiniest little nails you've ever seen. In fact, the only time her nails have ever been painted was by our sweetheart of a nurse when Ella was sick-sedated and intubated. So totally not fair.. :) I've never attempted this particular task because.. well.. her toes (and nails) are just so tiny. And I didn't think she would sit still. Or care. I guess it was one of those dreams that I hadn't even realized I had absentmindedly let die. Until now. One of those dreams that I let fade away, thinking it was perhaps one more thing we would never share together. Until I realized I was wrong. That Ella's life so far has been nothing like I feared it would be. That she is far more typical than not, that there are so many things we share as mother and daughter that I didn't realize we would be able to do.

So much of Ella's future is still uncertain to me. In fact.. sometimes I wonder if it actually makes it easier for me to deal with? Sometimes I wonder if I have really actually truly coped with Ella's diagnosis or if I just blanket myself under the uncertainty with a powerful concoction of hope and denial? Ella seems like such a sweet, typical little girl to me that it's hard for me to imagine what her life will be like down the road. The truth is? I really don't have a clue what Ella's future looks like. I have absolutely no idea if she'll be verbal or not. If she'll live independently or with us the rest of her life. I have no way of telling if she'll be able to hold down a job. Or shop for her own groceries. Or cook her own meals. I don't know if she'll be one of the ones who is able go to college and read and write.. or not. I don't know if she'll share my passion for photography or design or crafts or building things. I don't know if she'll be able to. I just don't know. So does not knowing these things make it easier for me to live day by day? Perhaps. Because I can still hope that she will do many of them? Maybe.

What I do know is this. Ella's life has surprised me almost daily. It has been full of ups and downs. Uncertainties. Heartaches, heartbreaks. From the things she has taught me, the people she has brought into my life, to the accomplishments she has made, the good in people that has been shown to me.. And I've learned that I don't have to have all the answers right now. I don't have to know exactly what she'll be like as an adult. Or exactly what she will or won't do. Because right now she is a funny, curious, silly, delightful two year old. And I only have to live this journey today. One day at a time. Not dwelling on the big things that I fear we may never do, but enjoying the small things that we can share together today. I don't have to be sure of what the future holds to be able to enjoy the beauty of today.

Like pretty pink toenails.

The Last Week

I'm finally here. Week 39. The last week of my pregnancy. In exactly one week (and hopefully not any sooner!) we will be meeting our newest little bundle of joy, finding out if it is a he or a she, welcoming him/her into our new family of 6, completely and abruptly turning Ella's charmed little world on its axis, and trying to somewhat contain the absolute chaos that is to become more of our life. As terrified excited as I am for all this, this is also a week of lasts in other areas too. And that is making me a little sad.

It is my last week of summer break with my boys before they head back to school (2nd grade and Kindergarten.. how did that happen??). I will be in the hospital most of next week, probably coming home Friday, then they start school ridiculously early the next Monday. This summer flew by at warp speed and I just can't believe it's over. I am sure I have some pregnancy hormones to help blame for this tidal wave of emotions but WAAHHHHHH! I don't WANT school to start! I don't wanna go back!! Of course not every day is perfect and some days they drive me absolutely up-the-wall-nuts, but I LOVE having them around. I love seeing them all day every day. I love spending time with them. I am SO not ready for the dreaded 'S' word to start. (Don't worry teachers.. I don't let my kids in on the secret that I absolutely hate school starting. For all they know they think I'm actually excited about buying new folders and pencils instead of fighting back the tears as I toss them into the cart..) :) We are trying to have the most fun week around here complete with swimming, fair time, demolition derby, and fishing, but it is still a weight hanging around my shoulders.

I'm also conflicted on how to feel this final week because while this is my last week of having this baby in my tummy, is it the last week of having any baby in my tummy.. ever? I'm not sure if this is my last pregnancy or not. I'm not sure if every kick I feel is the last one I'll ever feel or if they'll be another one down the road? I know in a lot of people's minds having 4 kids is crazy so having 5 is certifiably insane, but I just haven't felt that emotion yet of "we're DONE" like so many people say they do. To complicate things I have to have c-sections so being able to have a 5th child kindof all depends on what things look like on the inside, which we obviously won't know until next week. The not knowing drives me a little crazy. Should I be thankful for every last bit of uncomfortableness I feel this last week because it's my last? Or should I woefully endure it, waiting in anticipation for it to just be over, knowing I'll be doing it again in a few years?

I have no idea what life is going to be like for us next week. I am excited and scared and totally unprepared. While I did go a little freezer-meal crazy-lady last week (I may have over 50 meals in my deep-freeze. I'm obviously a little nervous about not being able to do anything for months after the baby comes..) I have virtually nothing else ready (except for a few onesies I finally washed and have been out on my clothes line for 3 days because they keep getting rained on..) I could be in denial that summer is actually ending. I could be postponing the inevitable of cramming our living room with a pac-n-play, swing, bouncer, boppy, more diapers, blankets, and baby toys. I could be avoiding the fear that comes with the recovery of c-section (and an Ella to go with it..) Or I could just be a natural procrastinator who is too exhausted to do much of anything at this point. Whatever it is, this week will come and go just like all the others so quickly do, so I will try my hardest to make the absolute best of all these lasts, and all the unknowns, in anticipation that there are surely many exciting firsts to come as well.

This is Ella.. on Oreos

Remember those old anti-drug commercials with the egg in the frying pan? 

This is your brain.. 

This is your brain on drugs.

Here is our version.

This is Ella.

This is Ella on Oreos.

Soon Enough

The past few weeks I've been tired. Exhausted. Unmotivated. Frustrated. Impatient. Overwhelmed.

So when my sister texted asking if the boys could come stay at her house for a few (four!) days I guess I should have jumped at the opportunity for some much needed R&R. A chance to sleep in, relax, get caught up. It should have sounded like a dream come true. Instead? I panicked.. Like--hold a brown bag over my mouth, hyperventilating panicked. FOUR days?? What would I do? What would they do? What if they missed me? What if they needed me? What if they got hurt? What if she didn't tuck them in at night the same way I did? The house would be so quiet! What in the world would Ella and I do? For four days?? The thought of those seemingly never-ending lonely, quiet days stretched out before me like the waves of the ocean-as far as I could possible see. My first instinct was, "Absolutely not! Are you crazy????"

But after my heart rate returned to a halfway normal rate, I semi-reluctantly stammered out a reply that must have sounded like an agreement to the plan. I knew they would have fun. I knew they would want to go. I knew I couldn't/shouldn't hold them back from something just because of my own fears. So I quickly packed up a bag and all too soon they were on their way, their faces full of smiles and hearts full of anticipation. Apparently I seemed to be the only one with reservations as Charlie told me right before he left "I'm kindof sad.. because I'm going to miss.. (insert mommy's heart swelling) the bunny." Oh.

The first day, I will admit, was hauntingly quiet. I paced around, trying to remember what all those things I always feel like I should be doing but never have the time to do, were? I know I spend hours looking around me, feeling a few steps behind in life, but what was I actually supposed to do to get caught up now that I had the chance? What were those tasks that I felt were so important to finish yesterday??

So I started to make a list. A list of things that are incredibly hard to get done around the house with all the kids needing/spilling/tattling something at the same time. I realized that as much as I missed them and felt like I didn't know what to do without them, I needed to take advantage of this time. Throughout the next four days I worked tirelessly to accomplish this and complete my list. And it went well. I feel guilty admitting how much I actually ended up enjoying this time. I thought I would be heartbroken and miserable the entire time they were gone. Instead it was nice. It was relaxing. We could come and go as we pleased more easily. Meal times didn't have to be so structured. My mind wasn't constantly revolving around bedtime starting at 4 in the afternoon, immediately after they got up from naps. The dirt wasn't getting tracked in all day. Cat food wasn't spilled all over the porch every single morning. Laundry didn't seem to pile up faster than snowflakes in a Nebraska blizzard like it normally does. And the dishes! I ran the dishwasher only once the entire time they were gone instead of once (at least!) a day. I could nap if I wanted to, but I found I was much less exhausted at the end of the day without the boys here.

As the days wore on I was excited to get them (I suppose), but I also felt myself growing a little nervous. I had had a taste of freedom. Of clean living. Of half the contents of our sandpile not being tracked into the house 30 times a day. Of chores that I did, not immediately being undone. Of projects being completed, quiet times that were actually quiet, impromptu outings with just JJ and Ella without 20 minutes of putting clothes on, going potty, finding shoes, bickering over seating arrangements. Of time to myself! I was a little hesitant.. My clean house that I worked so hard on was destinated to be ruined. The mess would be back. Would I be more frustrated now that I had a taste of the quiet life?

But as I expectantly walked into my sister's house (after the boys saw me from the backyard, looked at each other and obviously missing me very much immediately said, "Mom!!.... Can we finish our football game please??) I suddenly realized something. I realized that I had been missing something all week. Her home was bursting, literally bursting at the seams. Yes, with blankets, unfolded laundry, and dirty dishes. But also with so much more. With life, love, laughter, energy. With dirty faces and messy hair and colored on table tops. With happy children running in and out, climbing up and down, shouting and yelling and giggling. No, it wasn't as nice and neat and quiet as the home I had left. But it felt more like home than my freshly scrubbed floors and carefully disinfected counter tops did.

Her sink was full of dirty dishes-because she had been feeding my children. Her bathroom was full of wet towels--because she had been bathing them. Her floor was covered in crumbs-because my children were nourished there. Her living room was full of toys-because my children had been making memories there.

Yes, my floors at home were all freshly scrubbed, our winter clothes were finally all put away (don't judge..), I had 6 pints of fresh strawberry-rhubarb jam sitting on my counter and my dishes were all remarkably washed and put away. Our laundry was clean, folded and back in the closet, and I had had enough time to myself to get an entire book read. (Totally not trying to brag about all I got done. Okay.. maybe just a little.) Yet I realized in that brief moment of comparing our weeks and the resulting looks of our houses, that along with this precious time in life comes mess. Dirty shoes, spilled milk, scattered toys. And in the mere minutes the boys were home I already had clumps of dirt on the floor, supper crumbs all over the floor, laundry flung everywhere, dirt from a plant knocked over in the bathroom and of course cat foot spilled on the porch floor. But as hard as I had worked to get rid of those things the past week, I realized those messes didn't bother me near as much as I thought they might. Our house was full again. It was a home. There was loudness and laughing. There was excited voices and doors opening and shutting. There was energy and curiosity and love.

Soon enough the day will come when all this is gone. Soon enough they will grow up and head out on their own into the world. Soon enough their beds will be made-because they won't be here to sleep in them. Soon enough the floors will stay clean-because nobody will be around to walk on them. Soon enough I will have time to relax on the couch and read a book or watch a tv show-because no one will be here needing my attention. Soon enough this will all come. And I will miss it. So I will embrace the mess, the noise, the chaos, the dirt, because that is what brings life to our home. And I wouldn't want it any other way.

A month of walking by Ella

So for some reason my mommy has been really really tired lately, thinking she needs to nap every day AND go to bed early every night. I've noticed she has been completely neglecting this blog (again) so I will take it upon myself (again) to keep you all updated on what's going on around here. 

Most importantly, I have been walking now for a month. A whole month! In some ways my mommy says it seems like I just started yesterday since she loves to just sit and watch me run around (mostly she likes to just sit I think..), but in other ways it seems like I've been doing this forever since I'm so awesome at it. I actually don't even walk much anymore.. I pretty much run everywhere!

I'm realizing it's okay if mom walks out of the room without me (unless she's trying to make supper or do something productive like wash dishes or something.. then it's a complete meltdown-worthy disaster). And I'm also getting a little friendlier with strangers and realizing I can run away from them now (just do NOT try to pick me up. Unless it's my idea of course...). 

But since I don't have much time before mom wakes up and realizes she's the only one napping while us kids get high on Cheetos and juice boxes and she finds up doing crazy stuff like this..

I'll just stick to some highlights of my last month of walking.

Not trying to toot my own horn here, but clearing my own dishes on the 2nd day of walking? 

Pretty impressive if I do say so myself.. 

Don't let my mom try to tell you that I put my dirty dishes back in the clean cupboard though.. details.

Anyways.. when I'm not busy doing chores,

I enjoy eating rubber ducks

and helping mom get ready to go to town

for lunch dates with my cuz at Chick-Fil-A!

We've been fishing quite a bit

but I'm more interested in checking out the worms.

More fishing..

And more chores??

Shocking..

I like to play

PEEK-A-BOO in the curtains

 and wear pretty headbands.

And... what the heck?

PHOTO BOMBED!! 

(next year's Christmas card anyone??)

Sometimes I try on my mommy's swimming suit

and make my brothers take me for rides on their bikes.

Rrrrrrummmm Rrrrrummmmm...

They love every second of it.

But basically I still spend a lot of time doing what I've always done best.

 Just being cute.

The Annual Anniversary

Today is the day.

The day that, 8 years ago, two kids set out on a journey with hearts full of love and heads filled with dreams.

The day they promised to love and cherish each other all the days of their lives.

They had no idea where their road would lead, but they vowed to travel it together.

Till death do them part.

Today is our 8 year anniversary and I could write a lovey dovey mushy post about how much the past years have meant to me and how far we've come and how my husband is everything I ever dreamed and life is just perfect... 

Buuuuut why? When last year's post was so much more fun?

Happy Anniversary JJ!

Reasons I love my husband Part 2.

After all this time, he still pursues me with the same passion as when we first met.

He just never gives up.

He shares his love of early mornings with our children

and doesn't mind staying up with them at night.

He's attentive,

patient,

and truly enjoys 9 hour road trips that turn into 13 hours.

I love the way he looks at me

and still gazes lovingly into my eyes.

He really helps out..

keeping our place neat and clean.

No one else does bedtime routines quite like he does,

and I can always count on him to help me get that perfect photo op.

He's literally a lifesaver.

He's strong

yet only picks on people his own size.

He's a very involved dad. (leaving the kids at the top of the hill while he sleds by himself..)

And he never complains about what's for supper

He works hard

but really knows how to kick back and relax.

To JJ:

I wish I could tell you I have a nice dinner planned for tonight, but the truth is I haven't given anything past the next hour 5 minutes much thought..

I wish I could promise you some quiet time without the kids tonight, but they're all taking naps (and I'm not) so chances are they'll be up later than me tonight.

I wish I could tell you I cleaned the entire house for you today, but... well.. HA!

I wish I could tell you we are going on a nice date, but remember that one time a few weeks ago that we went out (to Menards)? Yeah.. that totally counts as our anniversary date.

I wish I could remember what you really wanted as a gift, but I already forgot a therapy session scheduled for this morning, so don't expect too much..

I wish I could say you can come home and relax tonight but actually the lawn needs mowed, the goat fence needs finished, and the boys really want to work on the tree house with you..

I guess I can't guarantee much, but I will promise you this. 

Some night after the kids go to bed and the house is quiet 

we can turn the lights down low and do something really special. 

I will let you pick whatever grimy fish catching show you want on Netflix and I will watch it with you.. 

While you're rubbing my feet...

Thanks dear!

Our life is not perfect..

but that's what gives the character that makes it beautiful.

And I wouldn't want to share it with anyone else. Love you!

Predictions??

We had our final ultrasound last week.. And are currently accepting any and all boy/girl predictions. 

Winners will receive the exciting grand prize of... 

exclusive bragging rights!!

Baby Watkins #4

And just because I'm nice here are the ultrasound pics of the other kids at this stage for comparison..

Any resemblances?

Nolan

Charlie

Ella

Okay, I realize these pictures aren't even comparable, with Ella's being the only other 3-D one and all three being in completely different positions, but hey--don't say I didn't try.

P.S. How is it possible that after reading through OVER 100,000 (Yes, I said one.hundred.thousand.) baby names I found less than ten (boys and girls combined) that I kinda sorta halfway like?? 

That's like.. .00001% or something, isn't it?

Suggestions anyone?

The Absent Minded Blogger

So remember that one time I wrote that one blog post that seemingly had no point or purpose or meaning beyond my senseless ramblings? What?? You need more clarification? Okay it was this one about when I first realized something was different about Ella while I was trying to take newborn pictures of her. I couldn't seem to capture her expression, her essence, her beauty and it bothered me that something just seemed different. At the time I wrote that I thought I did have a point to that post, but by the time I got to writing the end I had completely forgotten what that purpose was and tricked myself into believing there really never was a purpose and that I should just post it as it was. Well.. turns out there was a purpose and as luck would have it I actually remembered what it was. A mere five months later, but better late than never, right? I'm claiming pregnancy brain..

See, there's something I've never told you about Ella before. Something I've been holding back.. Her and Cindy Crawford have much more in common than those famous brunette waves and absolutely stunning eyelashes. (Ella's are real though.. just sayin) They have both been photographed by the same famous world renowned photographer Rick Guidotti. Yup.

Okay.. this one was actually taken by my friend Staci but I know Rick took one very similar to it.. I just couldn't find it right now. Thanks Staci!

When we went to Chicago last summer to the CdLS National Conference there was a photographer there taking pictures of all the kids and their families. Here is his story (taken from his website).

Positive Exposure was founded in 1998 by award winning fashion photographer, Rick Guidotti.  Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.

So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure. It has always been about beauty for Rick.  “In fashion I was always frustrated because I was told who I had to photograph.  I was always told who was beautiful.”   It became clear to him that it was essential for people to understand and see the beauty in our shared humanity. But how? How do you lead people down a different path?  How do you get people to see those with differences not as victims, but kids and people first and foremost?  The pity has to disappear. The fear has to disappear. Behavior has to change. These kids need to be seen as their parents see them, as their friends see them, as valuable and positive parts of society, as beautiful.

The photos give people the permission to see beauty and interpret beauty in their own right.  Not to see beauty that is dictated by industry’s ideas of what is acceptable.  What started with photographs, has grown into a wide variety of programs created to empower people living with difference – and to educate the world around them.

Wow. After hearing his story I was completely humbled that someone who had no apparent personal connection with someone who was "different" could see something just by standing on a street corner that I myself, who DID have a very personal connection, could not. After meeting Rick at Conference I have the utmost respect for him and the work that he does. I am amazed by how he effortlessly captures beauty in all forms, not just the forms society dictates. He has a special way of using his unique personality to bring a spark to our kids' eyes and make them feel like too many others don't--just like a regular kid. And I love his mission to bring a human face to these genetic conditions. I know I'm not alone among my SN friends in recounting our D-Day (Diagnosis Day), when our geneticist pulled out her giant book of genetic defects and showed me pictures of the syndrome she thought Ella had (not CdLS at that time). The pictures were TERRIBLE! As if a mother couldn't be more scared for her child and their possible future at that time, the pictures doctors show most of us look as if they were taken at least 50 years ago of children in undesirable positions and situations and give absolutely no hope for the life ahead of them. Another source wrote, "

Positive Exposure's challenge to the way the medical community sees genetic differences, and their goal of replacing the dehumanizing images from medical textbooks with photographs that speak to/represent the person, not just the condition. Joanna Rudnick states: "It's a remove the "black bar" movement and Rick won't be satisfied until a new parent can Google a child's condition and see one of his photographs - of humanity of motion of childhood - rather than a disassociated body with a black bar masking and shaming their identity."

Exactly. And the reason I was reminded of what the purpose of that long ago blog post was, you wonder? Because I saw someone post on Facebook yesterday that tonight (Friday) Rick and his work will be featured on NBC's Rock Center. A few years ago this would have been just another heartwarming story to smile over before turning in for the night. But now? I cannot wait to watch it. I am honored to have met this man and am forever grateful for the ways Rick and his photographs are changing the world and how society views our children.

One in a Million

When I was pregnant with Ella I got asked a lot "Do you hope you're having a boy or a girl?" Of course I knew it didn't matter, yet I always jokingly (kindof) explained that because we already had 2 boys I didn't care if this baby was a girl since we planned on having at least 4 kids, but if it wasn't, then that last one better be a girl. I love my boys dearly, don't get me wrong. I love watching their adventurous spirit, seeing the 'traps' they make in the sand pile to catch wild animals, listening to them make elaborate little boy plans while working on their tree house, seeing them chase toads and catch worms, and even watching everything possible turn into a weapon of some sort in their hands.. But yes, I did hope for a little girl someday. Yet that desire for a little girl went beyond a yearning for pink frilly tutus, adorable oversized flower hair bows, and sparkly glitter shoes. I wanted a girl for a much deeper reason. I was always open with people who asked that I would love an opportunity to raise a girl because I feel there is a serious need for "good girls" in today's society. I'm not talking about goody-two-shoes girls who always do the right thing, please others, and follow every rule.. No, I wanted to raise a "good" girl who was strong. Capable. Confident. Who stood up to the lies society tells young women about how they should dress and behave and chose to defy those rules. Who knew how to have fun without the influence of alcohol. The kind of girl who was fun and carefree, yet has a deep heart of understanding pain. Who chose to be an example to her friends. The girl who has a rock solid relationship with God and lives her days honoring him with her body, mind, and spirit. The kind of girl with a pure heart who is beautiful inside and out. I longed for the kind of daughter who would confide in me about her dreams, giggle with me about boys, stretch out on my bed and watch movies, and ask for my advice when it came to troubles with friends. The kind of girl who had strong roots, yet when the time came, was ready to spread her wings and fly into this sinful world and make her mark.

I wanted to raise that one in a million girl.

Which is a big part of the reason I was so devastated when Ella, my girl- my girl who I had elaborately planned the world for- was diagnosed with Cornelia de Lange Syndrome (CdLS) at 6 months old. All the dreams I had for her, everything I had spoken of, it was all washed away in a single second. I was heart broken. There was no way I could raise that one in a million girl now. My dreams, my visions of the future were shattered. Why God? WHY? You knew my heart. I told you I was going to do it your way. I told you I would raise her to honor you. I told you she would be a one in a million girl. So why did you take that away from me? Why did you disable her? Why did you give my girl a debilitating rare genetic defect when she should have had the world? Why not someone else's child? Someone else who wasn't going to raise that one in a million girl? Someone else who didn't care about that. Why me? Why Ella?

I spent many months trying to hide Ella's syndrome, worrying about the way she looked, wondering if anyone noticed there was something "wrong." I made excuses for her droopy eyes (she did just wake up), and only posted pictures where they looked the most open, trying to make myself believe that the doctors were wrong because "See? See that one picture out of the thousand I took that her eyes look almost normal?' That obviously means there's nothing going on.." I thought maybe we could only hold her facing forward in church so no one behind us would see the differences. I made up reasons why she was delayed in achieving milestones (She was 3 weeks early! She spent 2 months of her first year in the hospital! If you took out that time, she would be really very close to being kinda sorta on track..) I tried to dismiss the ways she was different and force her to fit into the box I had long ago created of what my daughter would look like and act like and live like. It was too difficult to believe that my one in a million girl was not to be like I planned.

Yet, as time slowly and oftentimes painfully passed, something began to happen inside me that I wasn't even aware of. My grieving heart slowly started to heal and my eyes were opened beyond anything I'd ever experienced before. Yes, the developmental delays were still present, but I started to not notice them as much. She was late in crawling and walking and talking. Yet her smile and personality were a delight for everyone who came in contact with her to be around. The classic CdLS facial features with her slightly droopy eyelids, button nose, and small statue surely played a part in the way she looked. But when I looked at her those features weren't screaming at me anymore and I suddenly saw those things less and less. Instead, I saw strength and beauty that went beyond those features. I began to see the ways she wasn't just a "defect". I began to love her for who she was and how she was created, the ways she was beautifully herself, even if it wasn't the way the world, and unfortunately myself at times, defined beauty. I began to see her strength, fighting for her life, her tiny body hooked up to a ventilator, a machine doing the work of breathing for her when she was too weak. I saw her with tubes coming out of her body in every which way. I saw her at her weakest moment. And I saw her fighting back. I saw her struggle to overcome the odds. I saw the unique way her eyes opened, the perfect arch of her eyebrows, and her tiny toes. I saw her for the amazing uniqueness that she was instead of the nonexistent image of the daughter I was grieving the loss of, that had really only ever lived in my mind.

As I learned more about Ella's rare genetics I discovered that it is estimated that only one in every 10,000 live births result in CdLS (although some estimate it is even less than that). Still holding onto my dream, I remember thinking, 'Well, that's not quite one in a million, but I guess it's close.' And then the other day I read something new. I learned that the American Journal of Genetics states that only approximately 1 of every 15,000 fetus' with CdLS survive as far as birth. Let that settle in a moment. Only one of every 15,000 fetus' with CdLS survive as far as birth. Now, if one in every 10,000 live births result in CdLS, yet only 1 of every 15,000 fetus' with CdLS even get to birth.. then that means... Well that means that if I were a smarter person there must be some sort of elaborate scientific mathematical equation I could come up with to figure out just how many pregnancies total started out with a child with CdLS, and the statistics on how few actually survive to birth and even beyond... And I'm sure I would find it to be a number.. a number that would now be nothing more than mere formality of confirming what I already know. 

Ella already is and always has been my one in a million girl.

(less than) 10 weeks!!

 Okay.. I feel a little dorky about this 'selfie', but in an effort to keep my readers happy, here goes.. 

Less than 10 weeks to go until we meet our newest little one!!

This poor thing has no idea what's coming...

Oh. My. Goodness..

Oh my goodness Oh my goodness Oh my goodness...

The day is here. The day I've been waiting so very very VERY impatiently for. 

The day 28 months and 23 days in the making.. (But who's keeping track, really??)

Just an ordinary day turned extraordinary.

Ella is walking.

Did you hear me???

I can barely type this I am so excited.

Ella is WALKING!!!

Let me back up a little.. Ella has been doing SO good lately walking between things, walking backwards, stopping on her own, turning around, spinning circles, climbing bunkbed ladders..

basically everything but walking on her own. The past few days I've thought, "Wow! She is SO close.." but I didn't want to say anything because well.. I feel like I'm always saying that. "She's so close guys! She really is! No seriously, this time I mean it.. Any day now!" 

Last night she was walking all around the living room and JJ and I were talking about when we could officially declare her 'walking'. I mean.. it's been such a gradual process. Her first steps over 6 months ago, walking between people, walking to an inanimate object, letting go of an object to walk to a person, walking between objects, stopping and starting on her own, and now walking in circles around a room. I still didn't feel like she was truly "walking" though. I told him I thought I could declare it when she started walking from room to room on her own, something she was still timid about last night.

Well, the time has come. This morning as I fished a nerf gun bullet out of the toilet, 3 magnets out of the trash can, and chased Ella through the house to change her diaper, I realized that it's official.

Ella is WALKING!

For something I've thought about and dreamed about for so long and wondered how I'd feel and what I'd say, I am finding myself totally speechless and taken aback. I'm sure I'll have more to say in the coming days as I figure out what this means and how this changes my life. But for now? For now I am going to sit back and enjoy this day and relish every single moment of watching my girl run around the house-no matter what I have to fish out of the toilet.

I Give Up

That's it.. I give up. 

I just can't do it anymore. 

I spend hours of my time, invest too much of my energy and the result is always the same.

It's just too hard. 

I feel defeated. I'm done. 

I am convinced I will never get a good picture of all 3 (much less FOUR!) of our children together (without the help of Photoshop). 

It's like herding cats.

Here are just a few attempts from last week.

Sadly.. these are some of the better ones.

Sigh.... at least I'm in good company. 

Looks like Mama Kitty is having the same problem..

We can do hard things

 I have a confession to make: I am a hypocrite. A big fat hypocrite. But I'll get to that in a minute..

Sometimes I wonder how parents in the special needs community view my blog. I mean.. do some feel like I'm not very worthy to declare myself "special" mom enough to write a blog on the trials and blessings that come with this life because we don't deal with a lot of 'extras' that others do? I'm well aware of my many friends to whom the term "special needs" has an entirely different meaning than it possibly does to me. I know many who deal with health issues we don't such as g-tubes, trachs, 24 hour oxygen, O2 sat monitors at night, ongoing medications, specialized therapy tools, frequent illnesses and hospital visits, delays and disabilities more obvious than Ella's, and so on.. 

Although we have been down that road of hospital visits, NG tubes, and medications before, that hasn't been a huge part of our life lately. The term "special needs" is incredibly broad and covers a huge spectrum of disabilities and I've learned that although one family may deal with certain issues, there are others who deal with entirely different ones unique to their situation. It's hard to compare and I sincerely hope no one judges me on our lack of certain needs because there are definitely other things we do struggle with.. 

One of the main ones being Ella's anxiety and nervousness in new situations. It may sound petty in the grand scheme of things but it really is something difficult to live with. The only reason Ella isn't walking yet is her fear of falling. She is so anxious around new people (or even many she knows..) that if you're not on her VIP list of 4 total people in this world that can hold her, you better back off. She gets excited to see her bath water running, but screams bloody murder when you set her in it. She refuses to sit in a stroller, cries if she has to ride in a different vehicle than the one she's used to, refuses to be set down, throws a fit if I'm shopping and attempt to try on an outfit (which made finding a dress for an upcoming wedding really fun..), and dramatically clings to me in any kind of new situation. Don't get me wrong, I love my Ella girl to the moon and back and have accepted the way she is. It's just rather inconvenient at times. 

Not to mention, watching someone you love so much have this debilitating fear that holds them back from experiencing many simple joys in life is devastating. It's difficult to watch other kids her age participate in activities she would love, and see her holding back. It's heartbreaking to watch her miss out on things I know she would love because she is held captive by her own fear. 

And here's where the hypocrite part comes in. See.. I tell my boys all the time that it's okay to have to do hard things. That hard work will pay off in the end. That the accomplishment and pride you will feel at the end of achieving something difficult is far longer lasting than something that comes easily. That, once again, it's okay to do hard things. Yet lately I've found myself discouraged with Ella's lack of progress in certain areas. I felt like we were taking 2 steps backwards instead of the forward direction I so desperately wanted to go. It seemed like her anxiety was getting worse, not better. I was already working hard at speech and sign language and walking and everything else.. I didn't want to have to work hard at another thing. I didn't think it was fair that something so seemingly simple such as sitting in a stroller, swinging outside, or taking a bath should be so darn difficult for us.

Swinging was a particularly touchy subject for me. As long as I've ever had kids, they have LOVED to swing. I can't even estimate how many countless hours I have spent pushing my children in swings. The boys would seriously swing for hours and hours on end during the summer. Before one of them could pump (which was only last summer) I had killer biceps from pushing them both at the same time for such a large portion of my day. And then along came Ella.. When we had our first nice spring-like day a few months ago I thought nothing of walking outside and plopping her in her swing next to her brothers. It seemed like no big deal. I was excited at the prospect of spending many more hours this summer pushing her swing high in the air and listening to her shrieks of joy. (It also possibly had something to do with the fact that I wouldn't be holding her during that time...) But Ella had other plans. Oh, there were shrieks all right. Just not the kind I had anticipated.. These shrieks sounded more like I was doing something horrendous like ripping her tiny little toenails out one by one than something that should seemingly harmless like swinging. Nothing could calm her until I rescued her from that pendulum of doom. I thought maybe her reaction was due to just getting over one of those sicknesses we had so many of this spring. She just wasn't feeling good and wasn't ready. But she would be next time. So when we had another nice day I tried again. Same result. And it was the same every single time I tried to push her in the swing. She wanted to swing, reached for it, but then screamed in terror when I actually put her in it. It's hard to understand what she was so afraid of, but she was. I watched in desperation while she went into hysterics, knowing I couldn't leave her carrying on like that, but wondering how I was going to teach her that swinging is not scary? And since Charlie can't quite pump well enough to swing by himself yet (and I think he enjoys my company..) I would feel obligated to stay and push him for awhile, leaving me to hold my screaming Ella with one arm and push Charlie with the other, leading to many a night spent cuddled with my heat pad after the kids went to bed. And I'll admit it. It also led to many tears. Not all from Ella.

Why wouldn't she just swing? I'd see pictures of other CdLS kiddos swinging and they liked it, so why couldn't Ella? What were we going to do all summer if we couldn't swing? And if I could barely hold Ella and push Charlie now, what would I do 2 months down the road when my stomach is even bigger and I'm even more uncomfortable? It wouldn't be fair to Charlie to just not push him all summer because of his sister's anxiety, but would it be fair to let her scream in her swing while I pushed her brother? It seemed so unfair to everyone. It seemed so hard. And I didn't want to struggle through it. Throughout the past few weeks, we've kept trying to swing, but with quite the begrudging attitude on my part I must say. I kept setting her in it, she would cry, I would get her out, comfort her, and continue with the backbreaking work of pushing Charlie and holding Ella. Over and over again. With seemingly no progress. I felt desperation setting in as I anticipated the long summer ahead.                                                                                                  

And then last night. We were outside. I walked to the swing set. Ella reached for her swing. I sighed and sort of rolled my eyes. "Here we go.." I thought as I set her in it. And to my surprise she sat. And she didn't cry. She looked nervous, but she didn't let it overtake her. I pushed, expecting that to be the end, but to my utter shock it wasn't. She held on. She smiled. She laughed. The sound of that laughter brings tears to my eyes as I think about it right now. The most beautiful sound I've ever heard-the sound that washed away the entire past few months of frustration in a single second. She LOVED the swing!!!! I cannot contain my excitement right now. Not only did she do something HUGE by overcoming the fear that has consumed her for so long, but now I don't have to hold her all summer! 

I am so so SO proud of her. 

A picture of this girl swinging might be cute to some people, but to me it means so incredibly much more. 

It means her fear is not in control anymore. It signifies an overcoming of obstacles. 

It means we can do hard things. It gives me such hope.

And boys if you're ever reading this.. it means your old mom really does give some pretty good advice.

Now go eat your broccoli. 

Why Raise Awareness?

Today is National Cornelia de Lange Syndrome (CdLS) Awareness Day.

I can't remember when exactly the first time I heard about CdLS Awareness Day was, but it was sometime shortly after Ella was diagnosed. I'm going to be honest.. my thoughts about this day were not positive. I was completely shocked that there even was such a thing as a CdLS Awareness day.. I mean what was there to bring awareness to? It's not like October's Cancer Awareness month where early screenings are promoted to increase health and survival rates. Or the March of Dimes, where prenatal care is emphasized to decrease premature births. I mean, those causes have something that can be done to potentially prevent them. There is nothing to prevent CdLS. Nothing I could have done differently in my pregnancy to change this. There is no cure. No medicines that can make it go away. You don't recover from it. It's something that just happens. Something we learn to live with. So why are we raising awareness?? What for?

The news of this Awareness Day also came at a time where the letters CdLS tasted like vinegar in my mouth. I wanted to spat those sour syllables out and get rid of them as fast as I could, not promote and talk about them more. I didn't even want to talk to my close friends and family about CdLS, why in the world would I want to promote it to people I didn't even know? Why was it their business? CdLS was not something I wanted to brag about. Or show off. It was not high on my life's resume of accomplishments. CdLS was something I wanted to hide from the world, to pretend never happened. CdLS was a menace to my life. Something I never wanted, never asked for, never wished to acknowledge.

Bring more awareness to it? No thanks..

But then I started to learn more. To meet other parents online. And I started to get it. I saw their strength. And I grew from witnessing their acceptance of this thing I wished so badly away. And I was amazed. And humbled. And slowly I began to realize that there just might be more to those 4 little letters than I first thought. That maybe hidden beneath the guise of disappointment and despair were many blessings waiting to abound. And I began to understand why people wanted to raise awareness for CdLS.

Because our children are not a menace. Or a disappointment. Or living a life of despair. Because our kids are just that. Kids. People. Human beings. With the same kinds of wishes, desires and dreams as the rest of us. And the world deserves to know that.

I think one of the main reasons for CdLS Awareness Day (to me at least) is to show the world the many differences that make us all beautiful in our unique way. To bring to light the fact that even though our looks may differ and our ways of communicating may not be the same, we are all part of a much bigger picture. A picture where there are arcs and lines, neat round dots, and splats of messy paint. A picture that combines darkness and light, mounds and divets, and textures of every kind. A picture in which there more colors combining together than you could possibly imagine. A picture that could never be duplicated, for the most breathtaking thing about it is the amazing display of diversity.

Sadly, there are many people in this world who look down on others who look different or act different than them. Raising awareness for CdLS can potentially help our children adjust to this world. Or maybe more importantly.. can help the world adjust to our children. The more people that know about the syndrome and its characteristics, the less rude comments and silent heartbreaking stares families like ours will get when out in public. Raising awareness of this rare syndrome increases acceptance and understanding and helps people understand not only the differences in our kids, yet their amazing potential and determination.

Another point of CdLS Awareness Day is to do just that. Bring awareness. It is estimated that there are thousands of people living with CdLS who are either undiagnosed or misdiagnosed, therefore possibly not receiving many services they need and deserve. Looking back, I suppose we were lucky that it only took us 6 months for Ella to be diagnosed. Some wait much, much longer. CdLS is such a rare syndrome many doctors are not even aware of it, making diagnosis very difficult in some cases. I know for many of the doctors we see, Ella was the first case of CdLS they have ever seen and many have had to research and learn along with us. The hope is that the more educated the public and doctors become, the more diagnosis will be made possible and the quality of life for many will be increased.

I'm so thankful I finally came around to accepting CdLS and it's Awareness Day.
Because the last reason we raise awareness for this syndrome?
Our kids are just too stinkin cute to not have their very own day for us to brag on them!!

Happy CdLS Day Ella! I hope you had a great day of getting absolutely everything you wanted..
Soooooo pretty much like every other day. :)

To The Mother Just Getting a Diagnosis

It's been on my heart for awhile to write a letter to the mother just getting a diagnosis for her child. It was not very long ago that I was one of you and I think and pray for you mothers all the time. Whether you are receiving a diagnosis in utero or after birth, whether you know what that diagnosis even is or if it's just a "something might be going on.." type of thing (been there), there are so many sweet babies that are being diagnosed with diseases and syndromes all over the world and while the emphasis most certainly should be on their care, what happens to the mother during this time? Where does she turn when she is expected to be the one to hold everything together and meet the exceptional needs of so many others? Somewhere along the way, while these these beautifully strong women are so overwhelmed with the caring of their child, becoming experts on medical terms they'd previously never heard of, navigating their way through g-tubes, learning how to care for trachs, handling the ropes of IEPs, IFSPs, therapy teams, and government assistance programs, and learning an entirely new language they never dreamed they would need to know, the needs, the desires of these mothers are being lost. Daily they are giving up on their own hopes and dreams and all the while through their grief, these struggles and pain are pushed aside and covered up. I wish so badly I could be there for you. I wish I could give you a hug, meet you for coffee, hold your hand while you cry and listen to the fears you've never been able to tell anyone before. And after drying those tears, this is what I would say.

Dear Mother Just Getting A Diagnosis,

I know you are scared. I know you are angry. I know you are hurting. And my heart breaks for you. Not because of your child and the way he or she is. No no.. definitely not because of your beautiful child. Your perfectly created, unique child who the world may define under the label of a 'syndrome' or 'genetic defect' but who you and I know is wonderfully created. No, mother. My heart breaks for you because I know. I know what you are feeling right now. I know because your heart is my heart. We have never met, yet we have shared so much. We have shared the same love for our children. The same joy and anticipation of their arrival. The same hopes and dreams. Yet we have also shared the same heartache. The same fear. The same crumbling of everything you ever thought was to be that is now not. I know.

I know you feel like your heart is shattering into a million microscopic pieces and being spread to the farthest corners of the earth, and for that mine does too. Because while I know it's part of the journey we share, and part of the healing process we must go through, I wish I could save you from it.

I know you are angry. Oh, how I know that. I know you don't think this is fair. That you don't deserve it. That you didn't do anything wrong to have to suffer with this consequence when all over the world women are doing drugs and abusing their bodies and not even wanting or caring for their children, yet having wonderfully healthy babies and you didn't do that so why are you being punished? I know.

I know you don't want to talk about it. I know you don't know what to say to family and friends. I know you don't know how to explain what is going on and how you are feeling. How could you possibly know that? You are on completely unchartered territory. Somewhere you never dreamed you'd find yourself. I know you secretly hate it when people tell you, "I'm sure everything will be okay." and "God only gives special children to special parents" or "People with special needs are such a blessing." I know you want to scream and yell that "NO! Everything is NOT okay. I am NOT any more specially equipped to handle this job and this is NOT a blessing." Yet I know you smile at those well-intentioned people and respond with a quiet "Thank you" and nod your head and try your best to keep it all together and put on a strong front. Until you are alone. And you can finally give in to the isolating feelings of hopelessness and despair. I know.

I know your heartache and I feel you pain, but there are so many things I wish I could tell you right now.

I wish I could tell you all the wonderful places this journey that you never signed up for will take you on. I wish I could tell you the immense joy your child will bring you. I wish I could tell you how he or she will become a bigger blessing then you ever imagined. I wish I could show you all the amazing people they will bring into your life that you wouldn't have known without them. I wish I could show you how inspiring they will be. But I can't. Because I know you wouldn't believe me. How do I know that? Because once upon a time.. I wouldn't have believed me either.

I know this is your individual journey to travel with your own unique twists and turns along the way, your own mountains to climb and valleys to walk through. I know our paths will look different. I know I can't travel it for you, but I can try to ease the burden, to lighten your load, by walking beside you. I know you are just starting on this road and the trees around you look dark and frightening. They seem to stretch on forever and I know you wonder if the sky will ever ever brighten again? I know it feels like it won't. I know you think you'll never get there. I know you think the fog will never lift. That life will never be fun and light hearted again. I know you feel a shadow on your heart that you believe will never go away. I know.

I know this is not the life you planned.

But let me tell you..

This life is better than what you planned. Because of the Someone who did plan it. 

This life with change you, mold you, teach you, strengthen you. This life will humble you and sustain you. This life will open your eyes to see the true goodness in people and you will find beauty where you never thought to look before. 

Is it easy? Not quite. Nothing worthwhile ever was. Will you have hard days? Absolutely. Will you still have days where you feel like the weight of the world is upon you and you just cannot possibly go on? Where the pressures and battles seem like too much to take on? You will. And on those days.. give in. Let yourself cry. Let yourself grieve the "should have been" possibilities. You are not expected to be perfect.

You will have moments of physical exhaustion when caring for a child with special needs is too much for your body to handle. Moments of mental exhaustion when the list of phone calls to insurance companies, hospital billing agencies, supply companies and such seems endless. Moments of emotional exhaustion when you cannot stop yourself from worrying about the future. And whether or not your child will walk. Or talk. Or attend a normal school. Or have friends. Or live a long life. Moments when you worry how this will affect your other children. Your family. Your home. Your dreams. Your everything.

You will have those moments. But then you will come back. Because you are strong. Because you can do this. Because there is a remarkable child waiting, just waiting for you to discover how truly incredible they are. A child who desperately needs you. Who needs you to love them. And hug them. And tell them they're beautiful. Who needs you to hold them while they experience the wind blowing in their face, who needs you to teach them that it's okay to be splashed with water, and that grass tickles beneath their feet. Who wants to blow bubbles with you and hold your hand and experience the simple joys of this world. A child who wants to enjoy life. With you. Their mother. Without being worried about IEP's or IFSP's or special classes. Without stress from phone calls to insurance companies and supply companies. Your child deserves you. And your immesurable love.

Is this how you envisioned your life when you were a little girl dreaming of your fairy tale happily ever after? Probably not. Me either. Wherever this journey leads you, please remember.. You are not alone. Just keep stepping forward, one foot at a time. You can do this. And you will. You are stronger than you think.

It's Official (Part Two)

 I'm normally a pretty positive person. I really am. 

But my whiney post last week about spring never ever ever coming? 

Well... it actually seemed to work. 

We went from this

to this

 in just 4 days. FOUR DAYS! 

(Yes, I'm choosing to ignore the snow in the forecast for tomorrow..)

We went from snow days to sleeping with the windows open, scooping snow to water fights, hot chocolate to root beer floats, snow pants to bare butts running around the yard. 

I'd call that a success. So, with that kind of turnaround rate, I figure it's worth another shot.. right? 

Here goes..

Ella is never going to walk. 

Never, ever ever..

I have been waiting and waiting. And waiting. Last November Ella started to take her first steps, walking between JJ and I. And I knew she wasn't real close to walking independently, but I thought a few months would be all it would take, at the most. We went ahead with plans to start trying for another baby, fully expecting that she would be walking by the time we announced our pregnancy, or at least by the time I started to get a belly (and a backache). Or by the time the baby was actually born for pete's sake!  But no.. here we are. Stuck at square one. With 3 months to go before I have another child who relies solely on my arms for their main mode of transportation. Don't get me wrong, Ella has come a long way in the past few months. She is much steadier, much more controlled, can walk further distances, can fall a little better, can even occasionally walk a ways, then stop herself and stand still without someone catching her.. but she is NOT walking independently. And it's driving me nuts. 

Some days I watch her and I think she is soooo close! It could be any day now. And then others I see her wobble over and stumble her way around and I think we are sooooo far away.. When will she get the courage to just let go? When will she start running around the house by herself? When can I be done walking in circles around and around our chimney? When will she chase her brothers? When will my back stop aching from the weight of holding her? When will I stop seeing this screaming pick-me-up-NOW face All. The. Time??

And while I'm already here, why not shoot for the moon? I am convinced Ella will also never ever ever like her baths, want to swing outside in her swing, or allow me to be more than 5 feet away from her.

Bottom line (again): I am going crazy(est)

Okay.. and now I wait. 

T-4 days to complete independent walking (and a much happier bathing and swinging time).. right?????

PLEASE???????????????

The New Ride

Something strange has been going on around here lately. It started with a slight brush of a few wayward strands of Ella's hair against the top of the car. That led to a minor scrape of her head, then slowly turned into harder thuds and soon outright concussion-inducing smacks, and I soon discovered something significant.

There seemed to be a direct correlation between the size of my quickly expanding belly to the number of times I knocked Ella's head on the roof of the car, trying to squeeze her in the middle of the backseat of the ol' Impala between two squirmy and rapidly growing boys. But as purchasing a new vehicle is a big commitment, I wanted to make sure.. So I took this profound information and went to great lengths to graph these occurrences. And this is what the charts show.
























There's just no arguing with that kind of scientific data. And as I still have a few months of belly-expanding to do, it was quickly becoming obvious.. The time had come to take the plunge into getting a true "family" vehicle.

So we began looking around.. trying to decide what would work best for us. We looked at SUVs, Durangos, Pilots, Suburbans and ultimately *gasp* minivans.. boy did I buck and kick against a minivan. Don't get me wrong.. I dearly love my many friends who drive mini vans.. It just wasn't for me. Ever since I started this journey called motherhood, the thought of owning a minivan has been one thing that just gives me the heebie jeebies.. ranked right up there with projectile vomit in my face and poop in a public pool. I don't know what it is about the van that has me running the other direction.. I mean the features make sense. Stow and go seats! Sliding doors! Endless storage capabilities! Great gas mileage! I get it.. I just couldn't bring myself to go there.. So we looked around. And looked. And looked some more. And nothing we saw seemed like it was going to work for us. And just at the point when I was about ready to throw in the cloth diaper and reluctantly join Club Minivan, we discovered it.

The Chevy Traverse.

(No, this is not a sponsored post, but if Chevy does get wind of it and would like to knock off a certain percentage of my monthly payments, I would be okay with that.)

One Word: LOVE. More Words: Looks. Prettier. When. Clean.

This new (to us) vehicle has SO many custom features our old car didn't! It's crazy how extravagant it is.. I feel a little guilty driving it around town. Like.. it's a little too lavish for us. I mean.. for starters, the exterior does NOT resemble the surface of the moon.. (Our old car had some slight pretty major hail damage.) And the interior does not smell strangely of dirty diapers and sweaty soccer cleats (although that may be subject to change in the near future). There are stereo speakers in the back that aren't broken out (lingering results from that hail damage) so the kids can finally hear and understand the radio and the seat belts actually latch the first time you try to hook them without shoving them repeatedly together while holding down the button, then releasing at just the precise moment, of course only when running late for school causing you to mutter curse words silently under your breath (not that I've ever done that...) And get this-the seat belt latch for the driver's seat even works so you don't have to use the one from the middle and have your car register that you don't have your seat belt on, when in fact, you do, and listen to it ding and flash lights at you.. Also, one of the more ornate aspects of this new vehicle is the middle console that actually latches so if you try to flip it up, the junk very important contents that have been accumulating for the past 5 years actually stay in place instead of spilling out all over the floor. And another notable quality-the windshield is crack-free and doesn't randomly fog up for unknown reasons causing you to use to make an entire two hour drive barefoot in the middle of winter because you're using your socks to wipe the glass off so you can see (not that we've ever done that either..)  And as if all those showy attributes weren't elaborate enough, it also has.. wait for it... 12 cup holders. TWELVE! That's 6 times more than our old car!  

Keeping up with the Jones's??? No way.. They'll be trying to keep up with us now.                                                                                          

Seriously though.. It's a pretty basic package of a vehicle, but I am possibly just dying for someone to call me when I'm driving. I may have moved up the ranks by a little something called Bluetooth.

And I do exaggerate slightly.. Our old car really wasn't that bad and served us well. It was exactly what we needed for that season in our life and I'm thankful we were able to fit it to our lifestyle as long as we did. But the time has come to move on and make room for bigger and better things.
(Did I mention we can fit SIX kids in this new vehicle?? Hmmm...)

By the way.. on a complete and unrelated side note is anyone interested in buying a 2006 Impala? Runs great.
Would make an awesome work commute car or a nice humbling first teenager vehicle. :)

It's Official

Spring is never coming.

Ever ever ever...

Just for fun pure misery I decided to check my photo archives to see what we were doing at this very time last year. 

This is what I found.

This year?

Depressing.. 

This is the third week in a row in April that we've gotten a sleet/snow storm.

I'm pretty sure a little sunshine around here would benefit my children's (and my own I'm sure) dispositions a whole lot.. And also help with the bagillion things we have on our to-do list that we are not so patiently waiting for the ground to warm up/dry out to do. 

We're trying to make the best of it, but seriously??

We are out of hot chocolate and I am refusing to buy more. My house is a mess but I am too cozy under my warm blankets to get up and do anything about it. My body is going back into hibernation mode and demanding that I store extra calories in the form of leftover Cadbury eggs for the long, hard months it thinks are ahead. I have tried to put away the winter snow pants three times now without any kind of success. I am dreaming of simmering soups on the stove for supper instead of grilling and picnics like I feel like I should be. I am beyond antsy to start building our fence for animals, but to do that we need to first pour concrete in our barn, and before that we need to put in a hydrant, which would require trenching a hole, which would be great to do without snow and crazy amounts of mud on the ground..

Bottom line: I am going crazy(er) 

Please Mother Nature? PLEASE?? A little help?