Thursday, January 18, 2018

new year, new specialists

What is it about the first of the year that always seems so harsh? The holidays bring out your fat pants. The winter brings the bitter cold. And for the love, those insurance deductibles start over again! Goodness January, be kind to us.

Eliza has herself quite the line up this month, and surprisingly, we’ve had to add some new specialties to her list. J.B. says we need a Vanderbilt Bingo board to see if we can black out every specialty they offer. Do you think there are prizes?

This week, we headed to Vanderbilt to see the ophthalmologist. Eliza has had some issues with her eyes and there was concern that her optic nerve might be under pressure. Eye issues are pretty common in kids with spina bifida. Because of the hydrocephalus, shunts, and general craziness going on in the center of the brain, sometimes the eyes have their work cut out for them.
As it turns out, Eliza’s optic nerve looks great right now! But one of her eyes specifically is still turning in. Based on how her eyes react to this, she’s not a good candidate for glasses so the team is going to wait and see a few months longer before they start patching or consider a surgical intervention. The hope is that the time period might show it improving on its own! Fingers crossed!

This trip we swung by the murals in Nashville's The Gulch. The kids loved them!

We’re working hard with a Birmingham company to have her fitted for some new orthotics (leg braces). This is a pretty big deal because these braces are significantly lower that her previous set. Whether or not she can actually manage in them is completely up for debate, but our therapist wanted to give it a try. We’re crossing all our fingers that she’s strong enough for the change, and making a billion trips to Birmingham to have them refitted over and over again.

Next week, we're back at Vanderbilt for Eliza's urology surgery. This is a repeat of the one she had done last summer, and we're hoping for another great success! After the surgery, we'll have a follow up in four weeks with retesting done to determine if it took! Fingers crossed!

The following week, we're back at Vanderbilt again (yup, that's three for three!). This time we're being set up to meet with the Nephrology team. Nephrology isn't a specialty that we've ever seen before, but after Eliza's last round of urological testing, there were some big concerns about how well her kidneys were functioning. Urology and Nephrology do work together, but they have pretty distinct purposes. Apparently these results are dramatic enough that our current team wants us to consult with this other group and work on some more things to preserve her organ function. Admittedly, this makes us pretty nervous. We aren't totally sure how bad things are or what Nephrology will want to do. We're definitely anxious to meet with the new folks and see where we stand. 

But Eliza doesn't even notice all the craziness, thankfully. She is just a playful, fun loving toddler, enjoying everything in life. Recently her vocabulary has really taken off, and I think it surprises some people! Looks like a one year old and talks like a three or four year old, ha! 
We are eyeballs deep in Disney princesses and taken over by Frozen fever. Life with girls!

So the plan is to coast on through all these procedures and appointments this month without too much drama! If you need us, we'll be singing Let It Go and cheering on the arrival of February!

Sunday, December 31, 2017

2017 in review

Its hard to believe that 2017 is already coming to a close! In reflecting back over the past year, we have had so many great successes to celebrate! 

Eliza got her first chair! This bad boy has been such a game changer for her. I know for a lot of folks, a wheelchair might seem like a sad thing. But I promise you, it’s freedom!! It’s a budding personality and independence!

She had successful urological surgery. This is still a huge win for us because the odds for both procedures to be a success were so low! It’s been over six months since that surgery, so we’ve actually just been back to Vanderbilt to see how things are holding up. It looks like she’s going to tackle another round of this surgery in January, so we’re praying for another success!

We quickly sold our home (yay!) and moved to an accessible house (double yay!!!). This has been another major change that has had such a dramatic effect on every day life for Eliza! If we thought her personality blossomed with that chair, we were in for a shock to see how outgoing she became once she had free reign over her own digs! I am loving giving this girl accessibility and letting her grow! 

Eliza modeled for Matilda Jane Clothing! Highlight of a lifetime, guys. That trip was amazing and that company is so special. We are forever thankful for what MJC does in our world. 

We conquered Disney World! Big trips and the unknown are a bit tricky when you have things like a wheelie kid to consider. But Disney was amazing! I love how easy they make it for families to all just enjoy the trip. My babies are already planning their next trip. 

We made our first wheelie costume(s) for Halloween. The best!!

Of course, there have been plenty of low moments for the year. Doctors appointments have gone badly. Family members have quit on my kiddo because she’s different. Insurance companies have given us more than a few fights. But we’ve found that concentrating on the positive is a lot more fruitful. 2017 has been a pretty lovely year with a lot of great successes. God is doing some amazing things with this little gal and we are so thankful to be a part of it!

Cheers to next year!

Monday, November 13, 2017

accessible costumes!

Many of you may know that we are big time Halloween folks! Even before the kids were born, we were dressing up and throwing spooky parties. 

Nowadays, family costumes are the ultimate tradition.

Each year, we sponsor a car trunk at our church's Light The Night festival a few days before Halloween. It's a trunk or treat that usually boasts around 40-50 cars to trick or treat thru, inflatables, food trucks, games, face painting, and more! The crowds are huge, so a few years ago we decided it would be awesome to host a trunk and not worry about fighting our way through the mass of people. Winning, y'all.

So this year, our family theme was cavemen! I bought tons of fleece and fur to make the layered costumes and we snagged some accessories from the Halloween store. The kids loved their costumes, which turned out to be a perfect match with the chilly night. We created a cave out of the back hatch of our SUV thanks to a wooden frame, some butcher paper, and our leftover fabric. We even put together a campfire!

But that hot pink wheelchair sure should out. So we decided to incorporate it into our theme! I covered the metal with strips of torn brown fabric, added some plastic bones to  a few sections, and then created stone wheels to go on the outside of her wheels! It was perfect!!

I love that Eliza's chair can be a part of the Halloween fun and not a hindrance to it! 
As a bonus, we also won third place in the trunk decorating contest!

For Halloween night, we planned to take the kids trick or treating in our new neighborhood. But Halloween with a wheelie kid can be a more trick than treat. You see, Eliza can't get up the front steps of a house to ring the doorbell. And you'd be surprised how many folks will merely open their door and not come down the 4-5 steps to her. In the hopes to make folks on the nearby streets aware, we tossed these in the mailboxes:

For Halloween, the kids get to dress up as whatever they want (since Mom takes over the festival night with family costumes). And both Jake and Eliza decided to be pirates! I not so secretly loved that that a. Didn't choose characters and b. Picked to dress up together. #momwin

And again, I tried to pull out the stops with a costumes that blended in Eliza's chair to her pirate get up. Allow me to reveal The Wilder of the Seas!:

Seriously guys, how cute are they?!

Eliza's ship cost me two cans of brown spray paint and a couple of PVC joints. Everything else can straight out of the garage! (I'm not sure what that says about the state of our garage...)

It's made from a cardboard box, and PVC pieces. Some scrap fabric made for the sale and everything else is just painted on! She LOVED it!

We were a big hit on the streets with her costume, and quite a few folks loved checking out how it was made. I will say that because Eliza is so small, I think a lot of folks really thought she was a baby in a stroller. In the dark, you really couldn't tell what was behind the pirate ship! A lot of our neighbors were absolutely lovely, though we did have 10-12 houses that totally didn't get our "wheelie kid" memo. Several ignored Eliza all together, and other handed candy to her brother to give her. Whomp whomp. But hey, there's next year! We plan to be in this neighborhood for quite some time, so hopefully we can bring some fun awareness to our neighbors.

Surely, they'll remember us next year... 

Wednesday, October 18, 2017

spina bifida awareness - pt. 2

Back at it again with some basic spina bifida facts to tuck away in your brain. The cool thing? These are applicable to all! 

Yes! Any woman! The thing about spina bifida is that it is considered a multi-factorial condition. That's a fancy way of saying that they don't usually know what has caused it. There is a genetic link (though if you have SB in your family you'll know) but most causes are completely out of the blue. Like Eliza! 

It's super important that women who could potentially become pregnant take an appropriate amount of folic acid. This is something that should also be included in any prenatal vitamins! By taking that small amount, you will reduce the chances of having a child with a neural tube defect (such as spina bifida or anencephaly) by 70%!! Think of how impactful that could be if all ladies knew this! 

Spina bifida defects take place within the first couple of weeks of pregnancy. That's why it's so important to be on top of this ahead of time. Typically when you find out you're pregnant, it's much too late. 

This is always the hardest fact for me to share. To be aware that the majority of babies with spina bifida are never allowed a chance at life is absolutely crushing to me. 

A large reason this statistic is so high is because realistic information about spina bifida really isn't out there. Most mothers see a high risk fetal specialist to receive a SB diagnosis for their child, and unfortunately, many of those professionals paint a very bleak, uneducated picture of what life with a spina bifida kiddo is like. Words like "poor quality of life", "vegetable", and "forever depending" are tossed around. And termination is often placed on the table as the best option. 

I think you all have been around my girl long enough to have a taste for what spina bifida life is really like. Is it some extra appointments? Maybe some surgeries? Yup. Is it a few alternate ways of doing life? Yup.  But more so than anything else, Eliza is a normal, happy, well adjusted little girl. She can do anything she wants and be anything she wants. She is smart and sassy and fun! 

I'm praying hard for a day that simple posts like this and every day interactions can change the hearts and minds of the ignorant folks that make a 65% abortion rate a reality. 

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.