This Week

5 years ago this week I woke up to hear that my 9 month old baby had salmonella poisoning.
This week I woke up to get her ready for Kindergarten.

5 years ago this week I was riding in a life flight helicopter while my daughter barely clung to life beside me.
This week I was braiding her hair.

5 years ago this week I was being told there was a possibility the salmonella had spread to her brain.
This week she read me a book.

5 years ago this week I was told she needed surgery, yet she might not be strong enough to survive it.
This week I watched her leap off our couches and tackle her brothers.

5 years ago this week I kissed her for what I thought could possibly be the last time this side of Heaven.
This week her teacher told me she loved her bouncy pig tails because they matched her personality so well. 

5 years ago this week I sat in the surgery waiting room clutching her pink checkered blanket the hospital gave us tight to my stomach, fearing the worst.
This week I kissed her forehead and tucked her into her big girl bed with that same tattered pink blanket.

5 years ago this week she was on a ventilator and I couldn't hold her for weeks.
This week she sneaked into my bed in the middle of the night and I snuggled her close.

5 years ago this week I was imagining what songs we would play at her funeral.
This week I was listening to her sing Ring-Around-The-Rosie and dance around with her dolls.

5 years ago this week a priest was performing the Last Rites on my little girl.
This week she couldn't wait to go to the front of church to sit with her Papa and cousin.

5 years ago this week I wondered if it would be better if Ella didn't make it.
This week... I am so thankful.

Thankful I was wrong. That I was given the opportunity to swallow my pride and share CdLS with others.
Thankful for our doctors. Who made life saving decisions our entire stay.
Thankful for our nurses. They took such good care of us.
Thankful for our special nurse Maggie. I don't want to think about what would have been the outcome if she wasn't on duty that day to be able to get the IO in to save Ella's life.
Thankful for the support of our family and friends. We couldn't have gotten through without you all.
Thankful for life. We know it can change in the blink of an eye.
Thankful that this is this week and not 5 years ago.

As I write this I can't help but think of all of Ella's CdLS sisters and brothers who are no longer with us. They are always in my heart and never far from my thoughts. I don't know why we were so lucky 5 years ago, and I'm trying not to feel guilty about it. Yet I know that we are not immune and nothing in this life is guaranteed for long. So this week we're celebrating life. The life we have today. My 3 year old asked me the other day whose birthday it was, convinced it had to be someone in our family's. It's not even closes to anyone's, but it kindof does feel like a birthday this week. As my Facebook Timehop takes me down memory lane of everything we went through this week 5 years ago, and how close we came to losing our little girl, I am reminded to never take life for granted. So even though it's technically not anyone's birthday this week, we will celebrate the gift of life. I happen to know a certain spunky little pig-tailed girl who would probably love some ice cream for supper tonight.

Just a Girl

So we've been having some.. 'issues' with Ella lately. I don't even know exactly how to describe her behavior. Other than frustrating, exhausting, annoying, tiresome, irritating, ridiculous.. 

Okay I guess it turns out I do know how to describe it better than I thought.

There's a lot of different little things she does that have been wearing on us. For example, she gets SO upset when someone else falls down or gets hurt (which happens with frequency with 4 rambunctious brothers..) she herself will make herself fall down or get hurt and run to us wanting affection. Except then she won't accept it. When we try to give her a hug she'll just turn the other way and scream "NO!!" then just be unconsolable and work herself into a tizzy. Or maybe a brother wants a toy she's playing with. She feels obligated to share it with them, gives them the toy, then starts screaming that she doesn't have the toy. When she gets it back though, she just screeches more and throws it, again yelling "NO NO NO!". She is terrible at making decisions. If I ask her, "Do you want juice or milk?" she might ask for juice. Then when I show up with the juice she screams "NO! Water!" so I dump out the juice and put water in the cup and again, "NOOOOO! Juice!" Or if we're swinging she'll say "All done." so I'll get her off the swing, then she'll start crying, "NO! More, more!" So I'll buckle her back up, then it's the sobbing and flailing and yelling "NOOOO All done!!!!" This goes on and on. With everything. And with everything she just becomes hysterical, unconsolable, unable to reason with even a little bit. She has this thing where she always wants her feet rubbed. She's always liked them rubbed (who doesn't?!?) and I think it's definitely a comfort thing for her. But there have been times where she would not go to bed at night and would just grab her feet screaming bloody murder while we sat by her bed and held them tight, doing our best to console her. She's also been having a lot of potty accidents lately. I feel like she's getting anxious about going and all my efforts to bribe beg grovel at her feet reward her are only making it worse.

So here are the thoughts running through my brain during these times.. 

What is wrong with her feet? Does she have restless leg syndrome? I'll make a homemade sleep cream using essential oils to help soothe her. Or maybe she's magnesium deficient. I've heard that's what causes RLS. Let me order some magnesium lotion online and see if that helps. Or what if it's something else? Maybe it's that Raynaud's disease I've heard of some kids with CdLS having where your blood circulation is limited. That can cause numbness to the hands and feet. *makes mental note to mention this to doctor.* Or maybe that's not it at all either.. Is it some kind of neuropathy thing? What kind of doctor do I need to contact about that? Are her feet tinging? I have no idea. She's just screaming. Sometimes she does it after she's been in her car seat for awhile. Maybe her feet are falling asleep because she doesn't fit in her carseat right? She's not big enough to move to a booster, but what else is out there? Why is she freaking out so bad? Is she in pain? When was the last time she went to the bathroom? Could she have a bowel obstruction? Or what about malrotation? Should we rush to the ER and get an x-ray? Or maybe.. MAYBE it's a GI thing. Could she be silently refluxing? I bet she is. She's probably been refluxing for years and we just didn't know it. I knew I shouldn't have put off our last GI appointment. It's probably gotten so bad that she has esophagitis now, or maybe even Barrett's Esophagus. No wonder she's screaming.  Or wait.. no, maybe it's a communication thing. Does she need to tell me something but can't find the words and it's frustrating to her? I really need to do better at practicing with her new communication device and Proloquo2Go app. I know I don't have enough choices on there for her to tell me what she wants. Except for her to be able to tell me what she wants I would have to program it in there, which means I would of course need to know what she wants in the first place...

A few weeks ago we were talking with some friends about this and they were commiserating with me and saying how actually a lot of these things sound exactly like their daughters. 

Their very, quite typically developing daughters. 

..............................................................................................

Is it possible.. that all these behaviors and tantrums and fit throwing and llama llama red pajama mad at mama so much nonsense too much drama are not at all due to the fact that she has special needs and developmental delays and Cornelia de Lange Sndrome, but purely attributed to the fact that she is... Just a Girl??

I have no idea. 

But if it is.. hats off to you mamas of girls.

Seriously.

 All my noisy, wrestling, loud, obnoxious, farting, stinky, sweaty, mud throwing, paint splattering, fighting, belching, filthy dirty, wild and crazy boys are by far so much easier to handle than this one. 

Is it possible that sometimes I get caught up in the syndrome and making sure I don't miss some important detail of what could possibly happen that I fail to notice that she really is.. just a little girl? When she does things different from her brothers do I just think 'Oh.. it's because of CdLS?' But maybe it's not. I know absolutely zero about raising girls (except of course for that fact that I am one..) and this thought slightly brings me joy and slightly terrifies me. 

Is it possible that I am just now realizing that I do, in fact, have a little girl?

A girl who adores looking at herself in the mirror. Who LOVES having her hair put up. Who at least 20 times a day comes to me and points to her hair saying "Up, up!" (Girlfriend should have been born in the 80's.. She would have rocked the big bangs era. I cannot get her pigtails high enough to appease her, even when they are quite literally on the very tip top of her head.) She will smile and giggle and turn her head, adoring her own reflection. (It doesn't have to be a mirror either.. Could be the window, a stainless steel bowl on the counter, the rims of wheels on cars we're walking by..) I have a little girl who loves to dance and spin in circles and giggle. A girl who adores her 'babies' and rocking and feeding them. A girl who loves to crawl up into our bed, pull the covers up to her chin, and snuggle in with us all cozy and warm. A girl who has her mama's chocoholic sweet tooth and shares my love of iced coffee. I can't wait to go on coffee dates with her. A girl who chomps her gum and holds my hand and melts my heart. A girl who for the very first time the other day wore the most adorable strappy sandals and let me put her hair in french braids. I died. 

So is it possible that these 'behaviors' are due, at least in part, to her being a girl and all the drama and out of control emotions that sometimes goes along with it? 

Maybe?

The jury's still out on this one. 

For now what I do know is I have a little girl. A little girl who needs me to be the best mama I can be. Who needs me to be there for her to love and comfort and hug and hold, to be firm and strong, and to be her very best advocate. A little girl who needs my patience and guidance even on days I feel like I have nothing left to give. Because she's not just a girl..

She's my little girl.

Our Week in Orlando--CdLS Conference 2016

It's becoming obvious that I don't handle change well. 

Me 2 weeks ago: "I don't want to go to Florida. Why did I even plan this trip? It's too expensive. And stressful. And hot. Is seeing our CdLS family even worth it? Specialists Schmecialists.. There have been so many awful things happening in Orlando lately. I just want to stay home in the Midwest with my corn fields where it's safe and quiet. There's no alligators here. I like my home. And my animals. I like my life. Why would I even want to leave? Maybe we shouldn't go.."

And then me on Sunday: "I NEVER want to leave Florida. I'm going to become a millionaire and buy a house on the ocean. I love the ocean. All our CdLS family can come live with us. Let's stay on vacation for all the days. There are no bills to pay! No chores to do! No house projects waiting for us! We'll lay around by the pool all day and look at the palm trees. I'll deal with the alligators. Where is home? What does my house even look like? Do I have a house? Do I even know how to cook? I have no idea.. Who cares? Tra la la la.."

Is it just me or does everyone feel this way after going away for a few days?

I faintly remember going through the exact same thing 2 years ago during the California Conference..

Anyways, we spent last week in Orlando for the CdLS Conference and had such an amazing trip!  The kids did SO well on the plane.

I think Ella was sleeping on JJ's lap during this picture.

We left a few days early and were able to spend some time at the ocean on the Gulf. When we asked the kids what they wanted to do in Florida, spending time on the beach hands down ranked #1 far far above than anything small and insignificant like, say.. Disney World. (And FAR less expensive too! Win-Win)

Pure joy.

It did not disappoint.

You can see shell-obsessed Charlie in the background.. That kid wouldn't have left a single shell in Florida if he had his way.
Our bags were considerably heavier on the flight home..

Sand castle fun

The sunsets weren't too shabby either..

We were at Clearwater Beach so we also went to the Clearwater Marine Center where the movie Dolphin Tale was made and created after. The kids were pretty excited to see Hope and Winter, the dolphin who had lost her tail. And I love the inspiration and correlation between so many kiddos with CdLS who have limb deformities as well.

We were the very first people in the center and the sting rays were so playful right away in the morning! It was amazing to see them so interactive--splashing the sides of the glass and wanting attention.

 

Since our hotel for the Conference was on SeaWorld property we had the chance to do some fun SeaWorld stuff too. Ella LOVED the dolphin show. 

She was so fun to watch--her face was total amazement the entire show.

Giraffes had better step up their game or dolphins just might take over Ella's favorite animal spot!!

 And now on to the BEST part of the week. 

Yes, even after all the fun 'extra' stuff we got to do, the absolute best part was when the CdLS Conference started. It was nothing short of amazing! 

Ella & Addison

 It was so exciting to start seeing CdLS families showing up at the hotel and popping around every corner. 

Ella's BF Payson

We were able to reconnect with so many friends from past Conferences.

Sweet Eva

And make so many new ones as well!

Meeting Micah

This sweet girl has a brother with CdLS and loved on Ella all weekend.
She whispered in my ear at the Banquet on the last night

"I wish I could be Ella's sister.."

Levi made a few friends as well!

Oh, and some pretty cool people got some pretty cool awards too.. Just saying.. ;) 

The older boys loved reconnecting with friends they had made in California. I love watching them build relationships as well and I know I've said it before but I think it's so so important for them to have other siblings of CdLS-ers that they can talk to as they grow up and face different challenges. 

I am so excited to watch them grow and have opportunities at upcoming Conferences to volunteer and interact with other CdLS families even more!

  

We had some really great consults with doctors as well. The OT remembered seeing Ella in California and couldn't believe how well she was doing. She had her run down the hallway and kept exclaiming over and over "Oh my gosh! Look at her trunk rotation! I can't believe it! Did you see her trunk rotation??" Seriously. Over and over and over. Crazy OT's.. Apparently it is pretty rare for someone with CdLS to have the fluid movement Ella does when she walks or runs. And also not to have any restriction in her arms or wrists. She was able to give us some good tips for strengthening her hand muscles so she is better able to grip her pencil and push harder on her paper to write in school. We also met with a Special Education Coordinator who reviewed Ella's IEP and reaffirmed that we are working with a pretty great school and are getting her the services she needs and also gave us a lot of helpful information I will be reviewing over the next few weeks! It was crazy to look back at our Speech Session from 2 years ago and see that our therapist told us that she believed Ella would not only someday be able to say her name, but read it and write it as well. I remember being so excited to hear that.. I had no idea that day would already be here! I can't wait to see what she does in the next 2 years! There are quite a few different research opportunities at Conference (and some really exciting new breakthroughs we were able to learn about!). One of the booths we stopped at we were already signed up with the registry through our local hospital.. and then we realized that the guy was from our local hospital. Small world!

My heart was so full over the weekend seeing all the CdLS kiddos and their families. It's just an amazing experience being in a place where kids who are sometimes looked at or treated differently by the world are not only accepted, but treasured and cherished and loved beyond belief. There is no 'your kids' or 'my kids' but instead they're all our kids. We celebrate together when someone reaches a milestone, we laugh together, we cry together when we lose a baby too soon, we encourage each other when we're down and hold each other up when we think we just can't do it any longer. Even though CdLS means something different to every family, no matter where you're at in your journey, it's inspiring to know someone has been there before you and can help guide you through it. We are so very blessed to have the welcoming and supportive community at home that we do, but this Conference is truly the one time where families can get together and feel normal, where everyone instinctively 'gets it' and where your everyday conversations about therapies and specialists and medical devices and communication apps are everyone else's normal conversations as well. The doctors and specialists are wonderful and so so important to meet with, but sometimes it's the families who have been through it who can provide the most help.

I've sat down so many times to write this post this week, but it's been hard. We have been struggling a lot adjusting back to real life. Ella has been having some very difficult behaviors (one in particular resulting in a doctor's visit for Hudson..) :( Apparently the Behavior Specialist should have been part of our consults last week.. She has been acting out and regressing in areas and I'm hoping it's in part attributed to sleep deprivation and disruption in schedule. I've felt many times this week I've reached my breaking point. But then I remember. . .

I remember the brave mamas who shared their stories and their everyday struggles with me during our mom's small group session. I remember how every behavior we talked about there was someone who could say "My child used to do that too and here's what helped." I remember the inspiring couple we met who raised their own family, and has now adopted and is fostering 8 other children right now, 2 of who have CdLS and who drove 1500 miles to be there (with those 8 kids..). I remember the selfless couple who already has one child with CdLS and couldn't make it to this Conference because they were saving their money to adopt a little boy with CdLS from Ukraine, who sadly just passed away this week before they even had the chance to hold him. I remember the strong mama who unexpectedly lost her sweet girl only a month ago who was able to come to Florida and love on her CdLS brothers and sisters. I remember the man who passed away this week who was the oldest living person with CdLS in the US (unfortunately only in his 50's) and the adventures his mom would post about. I remember the panel of young adults with CdLS we heard at Conference and the inspiring ways they are living independent lives. I remember the stories and the pain. I remember the joy and the love. I remember that I have a community who has been through it, is going through it and is there for me when I need it.

I feel so thankful that I was able to be filled up with so much love and inspiration last week. It makes all the difference in the world. The only bad part about Conference is that it lasts only 4 days, every 2 years. I loved meeting and connecting with every single person and I only wish there would have been more time to connect with even more. For me this was the best Conference yet. I am finally at a point where I'm not worried about what Ella is going to be like. I'm not comparing her to others to see what she's doing and what others are doing. I'm not racing around to find every answer and stressing out over every test. I've settled into a groove-- it's about who Ella is, not who I want her to be. It's about treasuring the time we have, not worrying that it's not enough. It's about welcoming others into our community and supporting them in this journey. It's about loving on those babies and counting down the next 730 or so days until the next Conference.. :)

Thank you thank you for everyone who helped make this trip possible!

Goodbye Florida.. We miss everyone so much already.

We can't wait for Minneapolis 2018!!!!!

*Another HUGE shout out to Grandma and Papa for coming along with us again. Our trip would not have been nearly as fun or relaxing and I'm not convinced all 7 of us would have even made it back together if not for you being there! 

Happy Anniversary

Can you believe we've been married 11 years?

11 years since I stared into these green eyes and pledged my forever "I love you's". 

You still leave me speechless.

Sometimes I watch you deep in thought and wonder..

I wish there was someway I could tell how you really feel about our lives together..

I guess I'll just have to assume I still make you feel like flying.

or falling..

AmIright?

Seriously though.. 

I really love our lives together. 

 As these boys get older I'm so thankful they have a dad like you to look up to.

A dad who takes them hunting.

And fishing.

And fishing.

And fishing.

And fishing..

Sliding.

 And water sliding.

Swimming,

batting,

and boating.

I'm so glad I get to wake up to a quiet house and find notes like this. 

Our daughter is so lucky to have you. (Even if she looks a little unsure here..)

We all are. 

(Lucky to have you. Not unsure. Mostly..)

You coach us.

You teach us the value of hard work.

You love life with us.

Most importantly you love us well.

And we love you back.

More than you know.

 Even if you do tip our swing set over flat on its face 

(And my garden shed too, but who's keeping track, really?)

Oops.

Oh- and thank you for remembering to make me sweet homemade Valentine's so I can cross out your name and regift them back to you since I'm not the greatest gift giver..)

Here's to a lifetime of memories that's only just begun!

 Happy Anniversary!!