Monday, October 10, 2016

Faces of Spina Bifida: Meet Charlie


Charlie is a smart, funny, energetic, feisty, motivated, athletic, imaginative first grader. He loves drawing, superheroes and sharks, and one of our favorite things to do together lately is read. He is the best pretend ghost, or alligator, or shark or superhero I've ever known. As a baby he had little interest in stuffed animals, and now he loves them and carts his "pets" wherever I will let him. He is learning everything about animals, and loves spooky things like vampires and haunted houses, at least in theory - but he wouldn't go in the Haunted Mansion at Disney if you paid him a million bucks. Charlie has lots of  friends at school and he will talk to anyone, or no one at all, because he has lots to say. His favorite person in the world is his Papa, my dad, and he believes anything Papa says, wants to do whatever Papa does, and basically would trade me in for Papa on any given day. Charlie loves participating in the local Paralympic sports program and it's been so very good for his confidence. He says some surprisingly hilarious or poignant things sometimes, and alternates between immature jokes about bodily functions and maturity beyond his years. He asks lots of questions about God and Jesus, and has forced me to do the work to find him places and books and people for answers, which I should have been doing all along. He still snuggles with me, but hates lipstick kisses on his cheeks and he does not always do what he's told, and sometimes he gets sassy, or downright bossy.

Basically, Charlie is a typical six-year-old boy. Who happens to have Spina Bifida. All those descriptive words and many, many more come before the words "Spina Bifida" when it comes to Charlie.

And that's what I would have wanted to know when I, pregnant with him, found out Charlie would have SB. Life looks different for us, sometimes, than it does for families with only typically developing children...but it also looks different from families with multiple children, or no children, or two parent households, or....really, isn't everyone's family unique? It just so happens you can see what makes ours different in the shape of a little red wheelchair with light up wheels and some leg braces with batman on them.

Charlie is typical of children with SB, from what I can tell. Typical in his abilities and his challenges, and he is miraculous and amazing, made perfectly by God as a gift to me and all of our family, the people he meets and whoever he will impact in the future. Of course there are medical extras, but the ones I thought would be the most difficult are really the most cut and dry. And vice versa, the ones that aren't listed as the big deals are, well, the bigger deals, when it comes to actual practice. And most challenges we face have nothing to do with SB and are things all or many families run across at one point or another. None of those things detract from Charlie's value, the joy he brings or his potential to make an indelible mark on this world. Although there are days when worries or procedures or challenges dominate our thoughts, there are far more days where our lives are routine and SB is just background noise.

If you ask Charlie about his life with SB, as I did recently, he will matter of fact say it's why he can't walk and uses a wheelchair. He will say he feels like the smallest in his class (of typically developing first graders), especially if he is on the floor, and that part makes him feel sad. He will say he feels strong and smart, and that he is happy, and wants to be a police officer when he grows up, or maybe a veterinarian, a Paralympian or President, or a Power Ranger. He wants to be a dad, and to have a wife and a home, where he will be the adult and get to tell his children what to do (Ha!)! Some of those goals are options, and some probably aren't - like, aren't the Power Rangers so 1990's? - but one thing never in doubt is his heart and drive to reach whatever peak he finally settles on and aims for. Never doubt Charlie was meant for this world and that mommying him is my greatest accomplishment and will forever be the most important job in my life, and also the source of my greatest joy. Life without Charlie, just exactly as he is, would be so pale in comparison for lots of people - he is absolute living color and Spina Bifida might as well just get out of the way.

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