Thursday, September 20, 2018

These Hands

In less than two weeks, this very special handprint will forever change. These hands that at first had us wondering what help would be needed, what adaptations would need to be made, what limitations would be set, have since proven to be so very capable. You may have heard that ten fingers are overrated, and I have to agree.

A few moms of kids with limb differences have asked me in the past week or so how I'm feeling about this upcoming surgery. And my answer is the same to all of them: I feel weird. 

All of the specialists and therapists and professionals we have seen are so excited about the potential they see. There are growth plates in every bone, so once all surgeries are completed, if all goes well the separated fingers should grow proportionately to the hands. The right hand will have at least three full digits, including the thumb, and the left will have all five, albeit short, fingers. The tips will no longer turn blue because of lack of circulation. The scar tissue that's building up on one hand will be eliminated. When everything's said and done, the end result will give optimum use of each digit and both hands.

That's the clinical version. 

But why do I feel so weird? Maybe it's because I know how capable Judah is already. He requires no assistance with getting dressed, putting on shoes, using the bathroom, eating, holding a pen or crayon, setting or clearing a table, making a bed, or any number of things that those of us with ten fingers also do without thinking. He has never, ever let this stop him or hold him back. If you ask him for a high five, prepare to get knocked back a few steps because of the sheer power he puts into it. 

To hear things like "he shows so much potential" honestly makes me cringe, because to me, it almost sounds like his accomplishments are being downplayed, that his difference is a qualifier. I never want to minimize what he's already capable of. I never want my kids to be defined by their differences. 

This will be Judah's first surgery of an unknown number. His actual diagnosis is bilateral amniotic banding, or amniotic banding of both hands. His right hand will be operated on first, with outpatient occupational therapy for the next few months. His left hand will require multiple reconstructive surgeries, which we will schedule at a later date. Ironically, because when you're a medical mom, you think of strange things like Judah will have more surgeries before the age of five than Jordan will (Lord willing). 

The biggest reason I feel weird is I love his little hands. I love holding them, and how he holds mine back. And it hurts to know that he's going to be in pain, confused, and scared. It's common for kids who have surgeries such as these to be afraid of what their new normal looks like, and I don't want that for him. He's come so far from the boy who had to be carried into the house just six months ago, who wouldn't take off his shoes and stood in the corner, who just stared at me for weeks when we'd have one on one time. I don't want to think of the possibility of even an ounce of that regression. 

Because now? Judah is the heart of our family. He keeps us laughing, because have you ever met a three year old who can moonwalk? Exactly. He knows when to hug (and he gives good ones), he gives huge smacking kisses on your cheek and insists on a return, and smiling is his full time job. 

Yet, when we submitted our paperwork, Judah's Letter of Intent, we signed our names under these special promises: 

[Judah Lev's] medical care will remain our highest order for [Judah] to reach his highest potential. We, Derek and Mary, will love [Judah] as our own son. We will never mistreat, abuse, or abandon him. We promise to love him, care for him, and always provide for his needs. We are excited and eager to welcome [Judah] into our family and to provide a happy and loving home for him. 

And we will keep that promise. It is our joy and honor to help him reach his highest potential, and that potential is not defined by his physical differences but by how we raise him. Medically, physically, this is something we need to do because yes, it will benefit him in the long run. But emotionally? Spiritually? That's what counts the most. 

So yes, weird is how I'm feeling. Will you pray with us that Judah's surgery will go well, that his recovery will be easy, quick, and smooth, and that he will keep be-bopping his way through life?

Judah's surgery will be at Shriner's Hospitals for Children, St. Louis on October 2. I will be staying home with Jordan, who is starting school next week and for his own reasons needs to maintain a routine, while Derek travels with Judah. If you would like to follow along for Judah's surgery and recovery, you can do so here. As always, thank you for the prayers, love, care, and support you have shown our family in countless ways over the past two years. We appreciate it more than you'll know. 

I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. Psalm 139:14-16