Tuesday, October 10, 2017

October and Spina Bifida Awareness



Hi friends! October is Spina Bifida Awareness Month!

It's an awesome time to remind folks what spina bifida really looks like. i.e. not something horrible and ugly but rather an awesomely cute little girl on the left side of your screen there!


So today... some basics!




Spina bifida is considered a birth defect. It takes place in utero typically before a woman even realizes that she is pregnant (week 3 or 4). And spina bifida is permanent. There are surgeries to repair the defect, but science has no created a way to regenerate the nerve damage lost. So, if your cousin's brother's wife's friend's hair dresser had spina bifida once but is fine now, then she was maybe healed by a guy that walks on water...





Having said all that, there definitely are varying forms of spina bifida. Some are extremely mild and people lead completely ordinary lives! Did you know that 1 in 4 people actually have spina bifida occulta and don't even know it?! Seriously!

However, the most common form is myelomeningocele (my-lo-my-nin-ja-seal) and it is also the most severe form. Bummer. 






Myelo spina bifida means that the nerves of the back are wiiiiide open and receiving full damage until repaired. They are protected by nothing. Unfortunately, this is the type of spina bifida that Eliza has. And her lesion begins at the T12 vertebrae (the last vertebrae in your thoracic area, about belly button level), which is relatively high. From that point down, things are questionable at best, but typically fully paralyzed. 


That's enough facts for now, but let me leave you (today and each day) with the most important thing...





They don't suffer from spina bifida. They aren't defined by spina bifida. 
Having spina bifida definitely means you might do a few things in a different way, and that's okay!
Inclusion is the new cool, friends!




Wednesday, September 27, 2017

The Same Cloth Project


I think the phrase "when it rains, it pours" is supposed to refer to sad and tragic things.
But I'm more of a glass half full kinda gal, so we're going to give that bummed out phrase a revamp.

When opportunities to highlight the awesome little life of our spina bifida gal came raining in thru Matilda Jane, they also started pouring in elsewhere. My favorite? Same Cloth Project.

Same Cloth is a local company to us, and boy are they special. I remember the first design of theirs that I saw, how dang cute it was (I bought one for each kiddo!) and then how excited I was to see what their brand was really all about. Same Cloth has this fabulous design shop (apparel, jewelry, notebooks, etc) of meaningful items. Each item is designed with a specific cause in mind and a portion of the proceeds from that design actually benefit that cause! So you get an awesome item AND you're helping fund some sort of incredible work at the same time! 

Just do yourself a favor and go check out their shop. Go now... I'll wait for you to come back...


>>>  shop link, y'all  <<< 


So good, right? And if you wander over to their blog, you can read about each design as well! 

Almost a year ago, one of the owners at Same Cloth contacted me about Eliza. She had just started using her Bumbo Chair and was basically taking over FB with her adorable videos. They loved her (who doesn't??) and wanted to see about designing a shirt around special needs kids. 

Over the coming months, they tossed around ideas. And in the end, they landed on a blog post. A blog post from this blog

Last October, I wrote about the "Welcome to Holland" poem and how beautifully it describes the special needs journey. In turn, they created a design that anyone can related to. Holland being the unexpected place that life can divert us all to. Using a passport stamp theme, and even adding a hand stamped date (!!) they've captured the entrance to Holland for each of us. 

 



They asked me to write a guest post over at Same Cloth to explain the Holland poem and our own story. I love it so! And it was shared and shared and shared!  Jump over and read it!

These Holland tees sold out in just a few days, but I've been assured that there will be a second order so follow Same Cloth for more details on how to snag one. A portion of proceeds for this design honors Eliza by being donated to the Spina Bifida Association of Alabama.

These shirts are fabulous. The cause is fantastic. 

But here's the thing...
What I love the most about this is how it creates an environment to share. An environment to encourage. To talk about the hard stuff. To hold each other up. We're together in this and we each have our Hollands. I followed hundreds of comments and "shares" as the Same Cloth blog post went viral. And every single one echoed the same thing - the value of life and the importance of love.

My goal here, as Eliza's mama, is to share this life. Because it is a hard, beautiful, amazing, insane gift. She's a gift! This journey is a gift! Spina bifida is so stupid, but what this challenge helps us to become is like no other thing. It's more love and more Jesus. What else could you need? 


 






Tuesday, August 15, 2017

Matilda Jane and Changing the Face of Beauty



It was when we were playing at a local accessible playground and splash pad a few weeks ago that I realized it. 

Eliza was bopping around in her chair, having the best time, when she rolled up to a mural drawing. The character in front of her was a little girl in a wheelchair. And it happened! Her face lit up in a way that I've never seen and she started yelling "Look!!! It's Eliza! It's Eliza!!" 





She found herself, you guys. In that mural, Eliza identified with the girl in the wheelchair. They were the same. Kindred spirits. In a way that every other kid doesn't even consider when they watch tv or play with friends, Eliza doesn't see herself in others. Before even turning two, she knew she was different. 

This isn't meant to be a sad story, I promise. Because it was a challenge to my mama heart. I wanted her to see herself in this world every day. Not once in a while. Not when we went to a special needs event. Every day. She is a normal little girl living a normal little life. And she happens to also use a wheelchair. I wanted her to feel a part of things. I wanted her to see herself as a part of everything life has to offer. I wanted her to not feel invisible.

This was the moment I started thinking about it. 


___________________________________________________



Almost three weeks later I received a completely unexpected email that immediately had me looking for a place to sit down. They wanted to know: Are we free the following weekend? Do we travel? 

..."well, yes and yes"... 

"In that case, Matilda Jane Clothing would be honored if Eliza would join them to model for their next advertising photo shoot."

 In Chicago. 

Feel free to read that again. I definitely did a good bit of pinching and rereading. 

I mean, WHAT??? Matilda Jane?? THE Matilda Jane? The sweetest clothing company ever?? The one that I swoon and gush over? The nationally known line?? They want my girl??

Oh, and can I tell you the very very best part?

Matilda Jane wants Eliza to come... as herself. As a normal little girl, living a normal life, and who happens to also use a wheelchair. Bring her chair. Bring her braces. Bring her walker. Bring whatever makes Eliza, Eliza. Make her comfortable. 


Y'all. My heart was a puddle. An instant puddle.


I'll let you catch your breath for a minute while I fill you in on an amazing thing about Matilda Jane. They (and many other big name companies like Target and Gap) are partners with the non-profit campaign Changing the Face of Beauty. CTFOB is an amazing organization, who's goal is to make the disabled community visible in the world today. Advertisements, entertainment, actors and so on shouldn't be solely represented by able bodied people. Just like it shouldn't be all skinny people. Or all white people. The disabled and special needs community is one that has been cast out, even while people of various races, genders, religions, sexual orientations, and so on, are finding their ground in the spotlight. Companies even cast able bodied people to pretend to be disabled! That's how crazy this is! It's why Eliza has only ever identified with a single drawing. It's why she stops to roll up to talk to anyone she ever meets in a wheelchair. They are an endangered species. They understand one another. Changing the Face of Beauty wants to change that. They seeks to include those with disabilities into the spotlight, right alongside everyone else.
Because this world belongs to all of us. 

So for any company to partner with Changing the Face of Beauty or to even use anyone with a noticeable physical difference in their advertising, it's a big deal. These companies are to be commended for their inclusiveness and their recognition for the value of every life. 

For Matilda Jane, the call was simple: 
Eliza, you are beautiful. 
Come as you are. 
You're welcome here. 
You're one of the girls. 

I contemplated the opportunity for only a moment. 
I thought of my daughter lighting up when she saw that drawing of "her"!

I knew immediately that there would be other girls that use leg braces, walkers or a wheelchair. They'd see Eliza in those beautiful dresses, and they too would light up. They are beautiful. They are a part of this world. They are visible. 

So we said yes!! This weekend, the Wilders are taking on Chicago. We are beyond thrilled to have been invited by Matilda Jane. We can't wait for our little lady to show the world what beauty really looks like. 








our girl is TWO!



Oh Eliza!! I can't believe you are already two, sweet girl!!



It seems like just yesterday I was being wheeled into that OR, ready to have my world rocked by your appearance. And sister, you have most definitely rocked it, but in the best kind of way. 

You challenge us! You change us! You test us! 

You are full of spunk and personality. You're determined and sassy and oh so opinionated. In short, you're your mama's daughter. 




I love that about you. I love that you're scrappy and that you're a tough cookie. I love that no one limits you. I love that this personality will serve you so well in life. 

Even though you're two, you are a teeny tiny little thing. Tiny but mighty. Who needs the growth chart anyway? They can't measure this level of cuteness anyway. 





And holy smokes at how much you have to say. I was almost thinking that with Jake as your big brother, there was no way you'd get a word in edgewise. Color me wrong, lady. Your vocabulary is out of this world (too may words to even count for the pediatrician) and I'm officially in an entire family of extroverts. Bless my tired ears, ha!

Happy birthday, sweet Eliza!!
Our lives are so much better because you are here! You are beautiful, silly, smart, and so wonderfully loved!




 

Tuesday, July 18, 2017

our beloved first house

It was our first home! 




 

Seven years ago doesn't sound like that long of a time (is this a sign that I'm getting old??) but wowza, it was a whole different life. Newly married, no kids. We didn't even know how to buy a house. 

We happened upon this home that was bigger than we needed and an amazingly renovated blank slate for all my crazy decorating ideas. I couldn't believe it was ours! So much space! I've painted and decorated, crafted and hosted. I took advantage of every corner. 
For those of you that don't know, I love all things DIY and decorating. Pop over to Live A Little Wilder to see what I'm up to on the regular... 

Over time craft rooms became nurseries and sunning on the back deck became mom patrol to make sure no one fell out of the tree house. 

But when Eliza was diagnosed with spina bifida over two years ago, we realized our time here was limited. This house was about as far from accessible as one could get. Narrow hallways, carpet, and for the love, STAIRS EVERYWHERE. 2017 was the plan. We were past the craziness of Eliza's first year, and we were quickly approaching the point where she'd want more independence than this house would allow. Girlfriend couldn't even go to her own room.

She needed a different home. 

But can I be transparent for a moment? 

The idea was also depressing

While we knew that moving was the right choice and 100% what was best for Eliza, it wasn't our original plan. I didn't really want to go anywhere. I loved our house and felt like I had finally gotten everything just how I wanted it. Our finances said to wait a few more years. The local market said this was a not so hot time to sell. And when we looked at our must-have house list and what was currently for sale out there, we were pretty sure we might just end up homeless by the end of the ordeal.

But we pressed on. We depressed on. 

In May, we took the plunge and listed our home for sale. For sale by owner, even! We cray. We had approximately 8 billion showings the first week and started house hunting ourselves. The stress was tangible. After dissecting hundreds of local properties, every single one had a major deal breaker. Imagine that dream list we all make up when we describe the house we want. It's specific, right? Now add a bunch of lame things to make it completely accessible for a kid in a wheelchair. Ultimately, we were super needy house hunters and we knew it. But we couldn't do anything about it! I was completely sure that a horrible house or a van down by the river were in our future.

Week two of showings and house hunting came around, and suddenly, we had an offer. This life I live is insane. That's not the norm for our area. Guys, we sold our house in two weeks! By ourselves!! It felt like the biggest, boldest nod of confirmation that we were doing exactly what God wanted us to do.

Our excitement to sign that sales contract was still mixed with dread.
Where were we going?? What would we do?? Where would we land??

Everything for sale was terrible. It was all wrong. Our list was too specific and our budget was too low. #always  My heart hurt. I was leaving my lovely house that I'd labored over, that was filled with so many memories, that I'd brought both of my babies home to for the first time. How would I leave this place for something smaller, uglier, and more expensive? Gross. No.

I didn't sleep that night. I was mad at life.
I hated spina bifida. 

But remember how, despite the muddled mess of the details, God is always in charge and doing His amazing thing? Less than 24 hours after signing the sales contract on our home, the perfect new house landed right in our laps. It was the place. My sadness evaporated in a heartbeat and was replaced with schoolgirl excitement. Hello roller coaster of feels!


Goodbye, 110! 
 

So. It's been a few months since the craziness all began. Between this and many of Eliza's recent medical needs, we've had a crazy summer. But last month, we finished packing our final boxes and prepared for a new adventure! 

Number 110 is no longer mine. I'm sad. Closing day was much harder than I imagined. And I still get a lump in my throat when I think about my place belonging to someone else.

My big fat silver lining? Number 144 is absolutely lovely and almost everything a girl could want. Guys, its so so good. I'm typing this surrounded in boxes and dust, as our floor crew installs the last of our new floors, and I couldn't be happier about the mess. I have so much to do here! So many memories to make! So much fun to have!

And Eliza. Boy has she ever blossomed in a home that's made for her. She's whirling and twirling. She's rushing to her room to play, sneaking up on you in the kitchen, and barging into her brother's space to steal his toys. It's little sister life to the fullest!! 

This summer has started a new chapter for us and we're so excited about it. 
Cheers to both Number 110 and Number 144.
Cheers to those beloved memories made, and those to come!

Sunday, June 18, 2017

Heck yes!!


So y'all know we've been on the struggle bus with urology for the last few months. Basically, our relationship with the department has been entirely too close since March. 
"I like you guys... I just hope to never see you..."

And I know you folks have been anxiously awaiting an update on the latest. 
So let me just get right to it.

Last month, Eliza had two procedures done at Vanderbilt. Effects from her spina bifida were causing bladder and kidney damage, which I'm sure I don't have to tell you is absolutely no bueno. The procedures were both a long shot that we almost didn't get, had it not been for the hopefulness of our amazing team up there. The odds of either of them being successful were around 40%. The odds of both of them being successful? 15-20% at best.
Failure meant another, more evasive surgery. Truthfully, the team prepped us for the worst case scenario because it was most likely. We were prayed up for God to provide the best path for our gal.


Today, one month post op, Eliza and I headed back to Nashville for her to undergo tests to see where we landed. Y'all. EPIC SUCCESS!!! After our beloved urologist picked her jaw and mine up off the floor, she outlined the results, which were one of the best she's ever seen from this procedure!! We're all stunned. STUNNED. 

I'm a realist, y'all. So I usually just sit in the middle of all the possibilities, planning myself to death, and hope for the best. I wasn't ready for this awesome news today!

God is so dang good to us. So much moreso than we could ever deserve!
This procedure will have to be redone every 6-12 months. And we'll hold our breaths for every unveiling afterwards until it stops working. But today? Today we celebrate!! And by celebrate, I mean go pick up Eliza's brand new dynamic stander. YES!! Amazing news AND new equipment all in one day! It's like spina bifida Christmas up in here!! 
  




(stay tuned for more on our shiny new toy - the dynamic stander!)


Sunday, May 14, 2017

gotta update my update...



True story: I've reread my previous post regarding our last spina bifida clinic and how overwhelming the changes all felt. And now I'm thinking, "Gosh, that's cute."

Maybe that's unfair. Honestly, it was overwhelming! But it was only the beginning of a process to figure out what Eliza's urological needs are.   
Its been about six weeks since our clinic day and we have burning up I-65 to Vandy - giving us both good things and hard things to share.




If you recall, our huge setback after Eliza's last clinic visit was that we found out that a. we needed to start a new care program for Eliza and b. we discovered that our insurance policy didn't cover the  supplies in the least. Remember freak out that we would end up living in a box down by the river due to the dang healthcare companies? Ahhh, I do.
Y'all feel free to pick your jaws up off the floor when I share with you that four different SB families from around the country sent us supplies at no cost to us. Not even shipping! Weeks and weeks of supplies were delivered right to our door in the name of solidarity! We were blown away at the thoughtfulness and generosity of other special needs families to make sure Eliza had everything she needed! Then again, why should I be shocked? That's what this amazing community of people does. They take care of one another in the most incredible ways.




Eliza's new regiment wasn't going as well as we'd anticipated. Not only could she not tolerate the medications they needed her on, but within a few days she was sick with an infection, and after completing a round of antibiotics, she was immediately sick again. Vandy was worried. I was worried. This definitely wasn't improvement.  Our follow up dates were bumped up and we were told to prepare for a dramatic surgery that would again change her daily care. Roller coaster of crazy!




Our doctor was patient and had Eliza retested before rushing to anything.  Her follow up results weren't quite as dismal as everyone expected. Yay? Ha. It meant that we have a little bit of time to try some milder  options before rushing to major surgery. Our urologist is going to try two less evasive procedures in hopes that they'll help temporarily. Those are officially on the docket ASAP.




Those two milder surgeries only have about a 40% success rate. Each. Both of them being successful? Maybe 15-20%.
Whomp whomp. Excellent lottery odds, not so hot surgical odds.


So after all this back and forth, we're finally set up to head back up to Vandy this week for the dual procedure. We're hopeful that it'll work but know we're in good hands regardless. I love how these teams keeps thinking and working for the best solutions for my girl, however crazy her mama is.
 
I'll keep you posted!



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But in the meantime, how about some fun news!

One of those many trips to Vanderbilt in the last few weeks was actually to their fantastic physical therapy department. Eliza was being evaluated for a new piece of equipment called a dynamic stander. The gist of it? She's standing up in a wheelchair!

The benefit being that her legs get to bear weight and hopefully strengthen, while she's also able to be-bop around like always. Its basically a fantastic whole body work out for her!

Of course, our wheelie pro took to it like a fish in water, and cried when her evaluation was over. The therapists are putting in orders of medical necessity and we are currently crossing all our fingers and toes that the insurance company will approve it for us. If so, we should have it in a few months.

She's the cutest!!