my child with a disability is not my hero

IMG_0128When we first began our journey with spina bifida, I didn’t know anyone with SB or anyone whose kid had it. One of the best things that has happened over the last two years is I have found other people who are going through the same thing, bloggers whose kids have SB, and message boards full of parents whose kids have SB. This community has been helpful and informative, but most of all, it has let us know that we’re not alone. Still, some things have become apparent as we’ve delved more into the special needs community that make me uncomfortable, and one of them really crystalized for me yesterday when chatting with a friend who also has a toddler with SB. Basically, as my friend and I agreed, it’s this:

The tendency of parents of kids with special needs and disabilities to say their kids are “heroes” makes me deeply uncomfortable. 

On the one hand, it makes perfect sense. We see our kids go through so much more than most typical children deal with– surgeries, therapies, challenges, and pain, and we see our kids thrive and survive in spite of it all. We’re impressed by their resilience, and we want to express that. Also, in a world that marginalizes and devalues many people with physical and cognitive disabilities, we want to affirm the worth and value of our kids. I see no malice there.

But what concerns me is that calling our kids heroes is just another form of dehumanization and marginalization. Our kids are KIDS, first and foremost. They’re people, human beings, whose value lies simply in the fact of their personhood, not in milestones or hurdles overcome. When we put them on pedestals and call them heroes, we make them something other than human beings. And we give them a standard that, at times, may be hard for them to live up to. They might not always feel like being heroic. Sometimes they might just want to be kids, people, frustrated and fed up and overtired and hungry and in a bad mood and all the other less-heroic stuff we feel from time to time.

Having twins, one of whom has SB and one who doesn’t makes this really apparent to me. Both of my kids are just people, existing in the bodies they were given, facing any challenges that come their way. To borrow a phrase that I learned from Sesame Street*: having spina bifida is normal and natural and fine for my daughter. She’s not heroic for existing in her body any more than anyone else is, because she has always been this way. Calling her a hero is just another side of the coin from feeling sorry for her, and I don’t want people to do either. I want her to have the beautiful freedom to be a complex, complicated human being who both overcomes challenges and makes mistakes, who can be joyful and angry and every other emotion there is, with no pressure to be anyone but herself. She’s no hero, she’s something much more magical and mundane: a little girl, full of untold potential, just like her sister.

*We recently watched an old episode of Sesame Street which featured a young man named Rocco who happened to be blind. He is introduced to Elmo, and when Elmo finds out Rocco is blind, he says “I’m sorry.” Rocco tells Elmo he doesn’t have to be sorry, because being blind is normal and fine for him, just like being able to see is normal and fine for Elmo. I really loved it. Plus, Rocco is a great singer.

Claire WALKS!

By now, you have probably seen me shouting this from various social media rooftops, but my Claire Bear took her first independent steps with her PT today:

This is HUGE. She has been so motivated and has worked so hard to get to this point. All day at home, she grabs us by the hands and says, “Wanna WAH!” I think she knew she was super close, and now she’s finally done it. And she couldn’t have picked a better day– this morning I logged into Facebook and saw the Spina Bifida Association going on about birth defect prevention awareness and how it’s folic acid week. Stuff like that always makes me a little ragey, because I wasn’t folic acid deficient. My kid just got spina bifida anyway. It happens. It’s not my fault, and it’s not anybody’s fault. By all means, if you are a woman of childbearing age, take your folic acid, to prevent all sorts of possible problems in the event that you should become pregnant. But please don’t labor under the misapprehension that all neural tube defects are preventable– I’ve even heard of misinformed DOCTORS saying things like, spina bifida is 100% preventable, and blaming mothers for their kids’ disabilities. (Best estimates I’ve read say that folic acid could prevent about 60% of cases of spina bifida. It would still exist even if everyone had plenty of FA.)

But today, today there is no raging about folic acid. Today there is just rejoicing and celebrating that my beautiful girl has finally achieved something she has been working SO HARD to achieve. She’s stubborn and tenacious and hopeful, and I truly believe nothing can hold her back.

well aware

20131010-160825.jpg October is Spina Bifida Awareness Month, not that you’d know it, as apparently October is the most crowded of all awareness months, most famously shared with Breast Cancer Awareness, but also Down Syndrome, Autism, Domestic Violence, and Bullying Prevention. To make matters worse, the Spina Bifida Awareness symbol is apparently a yellow ribbon, which everyone else knows is the symbol for supporting the troops, spotted on many a bumper sticker. Basically, I think we need a new month and a new symbol, but they didn’t ask me.

Though “they didn’t ask me” could be the whole theme of my all-too-keen awareness of Spina Bifida in general. They didn’t ask me, and they didn’t ask Claire, if we wanted SB in our lives. They didn’t ask the other 1 in 800 babies born with myelomeningocele SB (the most severe form, what Claire has) either.

I feel like this week has been an effort on our doctors’ part to make sure we’re REALLY REALLY AWARE of this whole spina bifida thing. Last week we made 3 separate trips to the children’s hospital for various tests, and this week we made two trips to talk to the doctors about the results of those tests. And the news, while not surprising, is bumming me out a little bit. In addition to mobility limitations, bladder and bowel issues are very common for people with SB, and though we had been hoping to continue avoiding it, in order to prevent recurrent UTIs and prevent damage to Claire’s kidneys, our urologist says it’s time to start catheterizing to get her bladder fully emptied. This means cathing her every 4 hours. She’ll also now have to take a daily medicine to prevent bladder contractions. A side effect of this medicine will likely be constipation. I know (really, I do) that ultimately this is the best course of action and is what will help her maintain continence as she grows, but for some reason in my head, having to take this step, having to cath, seems like it makes her more disabled, more different, and I just don’t like it.

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WHAT? You’re gonna make me go to the doctor 5 times within 7 days?!

We also got x-rays and saw the orthopedist, and it looks like at some point, Claire is going to need a surgery on her left leg to fix the way her foot turns severely inward. For the short term, she’s getting a special brace to wear at night, but in 6 months to a year, we’re looking at another surgery. Again, I’m all for whatever we need to do to give her the most mobility and independence, but hearing that my baby needs another surgery is hard.

And yet, we have so much good news too. She got an MRI, and we saw our neurosurgeon, and her shunt is working beautifully. I really credit it with the way her mobility is exploding, and our surgeon agrees. We’ve officially been cleared by neurosurgery, and, barring any shunt malfunction or infection, won’t be seeing her for a YEAR! We’re definitely celebrating that milestone.

So, what would I like you to be aware of this month for Spina Bifida Awareness Month? Yes, I want you to know that sometimes it’s hard. Sometimes there’s more surgery and more hassle and more hard work than we’d like. Sometimes I get angry or sad. But mostly I don’t. Mostly, I focus on the fact that both of our girls are beautiful, funny, joyful, smart, silly, typical toddlers. Mostly, I think that’s what I want you to be aware of– Spina Bifida has challenges, but it’s just another way of being a human in the world.

If you’d like more info on Spina Bifida in general, I thought this post from a young woman with SB was excellent.

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Truckin’ along with her push cart. This is *without* her braces on. I know. I’m amazed too.

 

Claire CRAWLS!

20130703-114050.jpgIf you’re following me on Facebook or Twitter or Instagram, you’ve already seen the bragging, but I have to share this with my blog friends too: Claire crawls now.

She’s been trying for a long time, months, and working on her skills in PT, but all she was really doing was lunging forward, ending up on her belly, scooting backward when she meant to go forward, and barrel rolling. She managed to combine those skills to get pretty much everywhere she wanted to be, but she watches Etta, and she knew crawling was the way to go. (Etta’s not walking yet at 15 months, though she cruises like a champ and could let go and walk right this minute if the thought actually seemed to occur to her.)

Then we got the shunt exactly a week ago, which removed a lot of pressure from her head/spine, and her neurosurgeon told us to fully expect faster progress in the mobility department. Which, I’m not saying correlation equals causation, but it sure seems to have worked. Yesterday was the first day her PT noticed her using her hip flexors, and yesterday she finally got her legs into the crawling equation and took off. She’s got forward motion and is also pulling up to her knees using the furniture.

Yesterday with her braces on and her therapist holding her arms, she also took actual steps, demonstrating she has all the components necessary to walk someday. Which just makes me want to say “HA!” to a certain rehab doctor who, about a year ago, after a VERY short exam, and ignoring our statements that Claire moved her legs intentionally, declared she would never walk. (Meanwhile her orthopedists have long said that she would, so we chose to believe them.)

I’m confident that Claire has had these abilities all along. It just took her a while to make the connections and figure it out, and while she may need a little extra help, she gets there. And she’ll keep getting there.

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Got it!

Claire is doing great

Just woke up from as good of a sleep as one can hope for in a hospital, cuddling my Claire Bear all night. She came through surgery like a champ, waking up happy after anesthesia, and generally being the most chilled out kid who just had brain surgery anyone has ever seen. Her surgeons say everything went great, and judging by the pressure her cerebral spinal fluid was under, it really was time for us to do this VP shunt. She probably has been having a headache from the pressure lately and we didn’t even know it. Now, her head should stop growing so quickly and the rest of her should catch up.

We’re super grateful for the excellent care we’ve been getting, as well as all the love and support from folks like you. It looks like we will go home this evening.

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Claire Bear: an update

IMG_4053It’s been a while since I updated all of Claire Bear’s fans on how she’s doing these days. Most readers know that she has spina bifida, that she had surgery just days after birth, and that we’ve been sort of waiting to see how much her spinal defect will affect her.

The short answer is: she’s doing great. She’s a chilled out, happy girl who is a bit of a ham. She can charm any stranger with her bright eyes, big smile, and penchant for waving, giggling, and clapping. She is also a very observant little person, and seems to constantly be watching and figuring the world out. Even though she’s not into eating solid food yet, she loves to swipe pieces of it off her sister’s high chair tray, and before she got moved into the older room at daycare, would sit on the mat and swipe toys from smaller babies as they crawled by. She even figured out, on her own, from observing Etta, how to get from sitting unsupported down to her belly so she can roll around to wherever she wants to go. Where I used to be able to count on finding her wherever I left her, now she’s known to roll out of her room and down the hall. They even call her “the mechanic” at daycare, because she likes to roll under all the cribs and appears to be inspecting and fixing them.

Medically, she is doing really well also. She had a looooong day at the spina bifida clinic yesterday, and we saw rehab, urology, and orthopedics. Ortho continues to be impressed with how much function and sensation she appears to have in her legs considering the location and severity of her spinal defect, and the good news from urology is that we don’t have to start using catheters or anything at this point (bladder issues are very very commonly associated with spina bifida). Rehab, formerly a sore spot for us since one doc declared “she will never walk” after a very poor examination even after we said that she supports her weight on her legs for short periods, went OK too. We actually got to show the doctor how she can stand with support, and we got our first prescription for some AFOs, essentially her first pair of leg braces, which we hope will support her ankles and knees and help her learn to crawl, stand, and walk.

She’s been going to physical therapy for a couple of weeks now, and we are so happy to finally have that started. The therapist turns out to be the older sister of a friend from high school, and I have to say I just love her. Despite a very teary first session in which Claire *wailed* the entire time (her stranger anxiety has really ramped up lately– she also recently wailed at ZaZa’s, a local pizza joint, when the most grandmotherly, sweet-looking woman in the world dared to approach her), Claire has realized her PT is pretty cool and has neat toys, and now only cries when tired or frustrated with an activity.

Because Claire needs 3 PT sessions per week, 3 OT sessions per week, and now we’re talking about adding in speech therapy to help with her oral issues, we are working on getting her into a developmental preschool where she could receive all these therapies on site. With another one year old to wrangle, coordinate care for, and generally deal with, taking her to and attending that many sessions per week myself would really just be a logistical nightmare, and we’re so thankful this is even an option, that I could drop her off and know she was getting care from folks who don’t have a single issue accommodating her needs. Much as we LOVE LOVE LOVE our current daycare, the fact that she’s the only kid in her room who can’t feed herself or take a sippy cup is a bit of an issue. Even better, the preschool takes siblings, too, so if I get a job in the fall, Etta could join her. And the best news of all? Claire’s Medicaid TEFRA, a benefit she qualifies for because of her disability, for which we pay an income based premium, which covers basically all of her care not covered by the insurance we get through my husband’s work, would completely cover the cost of the preschool for Claire. AMAZING!

So, now I’m on the hunt for cute shoes that fit over AFOs (I’m thinking a sweet pair of mint green Vans might be my choice), and just generally excited that our sweet girl is finally getting the help she needs to make some progress in the mobility department. She’s starting to realize that Etta can do things she can’t, and it has her raring to go!

 

surgery for baby claire

Last Thursday we spent most of the day in the ER with Claire, because her already more-than-average spit up had become projectile vomiting in the last couple of weeks, and had escalated to every other feed or so in the last few days. Dr. Dad thought she might have pyloric stenosis, and additionally, since increased vomiting is a warning sign that her hydrocephalus (extra fluid in her head because of the way her spinal defect pulled down her spinal cord and blocked the exits for the cerebral-spinal fluid) is getting more severe, so we wanted her to get worked up.

She got an ultrasound of her pyloris, which ruled out pyloric stenosis, so she got an ultrasound of her head, which revealed more fluid in the ventricles of her head than the last time we looked. She also got a head CT to get an even clearer picture. Her neurosurgeon, whom we love, insisted on coming down from clinic to see “her girl” personally, and we discussed whether or not it’s time to move forward with surgery to place a shunt that would drain the excess fluid from her head into her belly where her body could then absorb and deal with it.

The bottom line is, it looks like it’s time to get the shunt surgery. We had been hoping to avoid it, but we think that since the fluid continues to increase, we’d rather go ahead and do something about it instead of waiting for things to get worse, which would involve symptoms like trouble breathing and swallowing.

We hate that our wee girl has to have surgery again, but we know she’s a trooper and will come through great. We see the neurosurgeon again on Monday morning, and it looks like the surgery will be Tuesday or Wednesday. Not sure how many days inpatient would be involved, yet. Please keep our Claire Bear in your thoughts and prayers, and us too.