Friday, October 18, 2013

A Henry Kind Of Update

Wow, are you tired of reading about my panic disorder yet? Let's switch gears, shall we?

We are coming up on one year of Henry's Spina Bifida diagnosis.


Last year on November 7th, during our gender ultrasound, everything changed. We learned that our precious son had Spina Bifida, and despite being a writer, I cannot convey my devastation. Or my panic. My first reaction went from no no no no not doing it lol sorry to how am I going to deal with this? Paralyzed? Incontinent? Wheelchair? Shunt? Surgeries? The possibilities were infinite and completely overwhelming. Foremost in my mind was the certainty that because my son had a "birth defect," our lives would be miserable and tinged with sadness from here on out.

So, are they? Are our lives sad and burdensome and full of suffering?

Judge for yourself:








As you can see, this poor child is miserable.

One of the things that terrified me before giving birth to Henry was that there was really no "face" of Spina Bifida. If you did a Google images search of Spina Bifida you would see a) aborted or stillborn fetuses, b) gruesome meningocele lesions, and c) pictures of John Cougar Mellencamp because apparently he has a very mild form of SB called occulta. You can see why this was such a confusing time for us. When we'd try to "research" Henry's birth defect on Google, there were few families we could look to as an example, despite Spina Bifida being one of the most common birth defects in the world. I can't find it now, for the life of me, but when I googled "spina bifida stories," the first one I came across was a little girl who had actually died during her myelomeningocele closure as a newborn (something that is very, very rare). Needless to say, I was all:


So nearly a year later, I am happy to say that Spina Bifida has a new "face" for us, and hopefully for everyone we know. It's a seriously cute face that is perpetually smiling, with super chubby cheeks and huge blue eyes. I don't know where I keep getting these blue-eyed children because my family is Italian as hell, but I digress. 

I struggle with telling people what Henry can and can't do at this age, because I fear that they'll think of it as some unbearable hardship. Henry has had two surgeries in his young life -- one to close the opening in his back, and one to put a shunt in his head, in order to control his hydrocephalus. Although he can sit up mostly unassisted and meets pretty much every developmental milestone, for some reason he still has not been able to roll over on his stomach by himself. (His hips are at a weird angle, so it's hard for him to maneuver himself onto his stomach. It's one of our goals for physical therapy.) He'll need surgery and casting to correct his (adorable) clubbed feet. I'm not sure when he'll crawl. His prognosis for walking is good, but it's not a given. We don't know if he'll walk with assisted technology or use a wheelchair. But he can definitely move his legs purposefully and he has feeling in his legs and feet, which is a far cry from what our doctor's initially told us he would be able to do. 

Aside from the doctor's visits and learning how to navigate the healthcare industry, this kid is surprisingly low maintenance. Recently we learned (for a lot of complicated reasons) that we're going to have to start intermittently catheterizing him throughout the day. What I expected to be super inconvenient and devastating and a huge pain in the ass was really more like 

meh. whatever. 

Basically, from here on out, we have to stick a tube in his pee-hole four times a day, and it's surprisingly not a big deal at all. Funny, because when I was pregnant with Henry, the thought of catheterizing a baby scared the shit out of me. I would think about it and get cold and sweaty and immediately overwhelmed. It was firmly in the category of "things I couldn't do." And guess what? I can do it. I'm still practicing, and sometimes I mess up, but it doesn't hurt him. In fact, he actually seems to like it. Sicko. 

I think even now I have what I'd call "able-ist" leanings. When people ask me how Henry is, I immediately say "he's totally like a normal baby!" I try to distance him as much as I can from his perceived defect, because I just can't stand the thought of someone thinking he is lesser-than or deficient in any way. I have to stop saying he's "normal," because he isn't. He's got a shunt and now he has to pee through a pee-tube. But I guess what I'm trying to say is that you wouldn't know that just by looking at him. He has a disability, but he's not miserable. Our family isn't miserable. Managing his disability is sometimes a lot of work, and a lot of doctor's visits, and a lot of phone calls to the doctor's office to get referrals, and that's a headache. But at worst, it's a mild annoyance. 

Believe me when I say we are blessed to have this child. He has made my life better in every conceivable way. And if I had to choose between having this child with Spina Bifida and not having him at all, I would go back and pick Spina Bifida again, and again, and again. 

October is Spina Bifida Awareness month, and this is what I'd like to contribute: If there's anything you need to be "aware" of, it's that Spina Bifida can be hard. It can be grueling and annoying and complex. But it can also be full of joy and blessings.

 It's not easy. But it is so, so worth it. 

7 comments:

  1. Sarah, if you didn’t know it already, most males enjoy having their pee pee manipulated. (What can I say, I just as much a sicko as my grandnephew.) Henwy rocks!

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  2. Thank you so much for sharing this message!

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  3. I don't know any mom (or dad) raising a child with special needs that wouldn't choose the special child over no child; even though we all pray everyday for our various cures/miracles. A hard life doesn't mean a horrible life; it's just joyful and happy in different ways.
    And when I realized I'd have to cath my son, I almost died, and I'm pretty sure my husband thought it was something he could never do but now, my son asks to be cathed when necessary; it's no big deal for any of us. But I'm still the one that has to do it 90% of the time though.

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  4. What an adorable cutie-pie! Thanks for sharing this!

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  5. I'm in love with this post. Thank you for sharing!

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  6. I'm so glad you wrote this post. So many good things to say but i just go with: you rock!

    In no way is my situation similar or as tough as yours but definitely definitely without a doubt I would choose my low functioning autistic daughter over never having had her. She is one of the sweetest, gentlest and beautiful kiddos ever.

    And your illustrations or gifs or whatever make me giggle. Also love the picture of you wearing Henry. You make the Moby look good. Whereas I can never figure the damn thing out. I always end up giving up after the baby has been screaming and I'm a tangled and sweaty mess.

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  7. I loved reading a Henry update and I'm so glad you're back to writing! I check your blog often because I love what you write. I've had a lot of people tell me since my daughter was born with SB, "I don't know how you do it. I never could." My response is always, 100% of the time (well, maybe not 100% because for some people, I have my doubts...) "Yes you could. And you would. And it wouldn't be any big deal for you because all of this, all of what you see right now as totally abnormal and medically complicated, would be your new normal and you wouldn't even bat an eye because it's your baby."

    Also, cathing totally scared me until I did it once. After that, it was NBD.

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