4 Things You Need to Know about Spina Bifida
Seriously people, look at this face!
It took me much longer to write this blog post than I’d thought it would. I started out with a longer fact-driven list including things like: spina bifida is the most common permanently disabling birth defect in the U.S., the words “spina bifida” mean split spine, and there are 4 types of spina bifida …
I immediately felt drained.
I don’t spend much time hovering on these sorts of statistics nowadays. My son is just short of 4 years old, so I’m passed all the dread and bad reports, and more likely to be fixated on purchasing my tiny man yet another pair of pumas in varied colors, making sure his wheelchair stays functional and fly, and signing up for classes called “Bubbles, Bubbles, and More Bubbles!”. #truestory
I am a mom,
and seeing that I had zero experience with kids until I had my son, I have the grace to be slightly ignorant of just how hard this whole journey really is (and honestly for that I’m thankful).
Then I remembered, I already covered all these sorts of bits and bobbles in my Spina Bifida video series a few years ago.
You can check it out here:
Answers To Your Questions About Spina Bifida
I touch on what exactly spina bifida is & the different types + what type my son has, development & surgery questions, cause & prevention, advice to parents & our routine.
Now back to the post.
I thought long and hard about what I really want you to know about SB … what you NEED to know … and it’s really not all the data, stats and numbers. It’s that my son is an awesome kid, he is not his diagnosis, and I’m so happy I did not “terminate my pregnancy” like they encouraged me to do pretty much every doctor’s visit from week 20-23.
Be still my beating heart HIS FACE!
So I present to you:
4 Things You NEED to Know about Spina Bifida
1. Spina bifida is not death sentence
Listen, if you’d told me this during my 20-week ultrasound as I sat on the table in disbelief listening to the doctor unleash a downpour of bad news in what my memory recalls was slow motion, I would’ve probably reached out and shook you by the neck for lying to my face BUT … fast forward 4+ years and my son is in the other room playing on his Scooot and repeating the words “double” and “round”, for some reason (strange kid) and … I kinda believe you now #whoknew. He went to school this morning, he ate ravioli a little while ago, he just threw a maraca across the floor then told it sorry #violentyetkind. All in all, it’s been a pretty crazy and oft time difficult ride, but it’s not a walk to the gallows like that doctor led me to believe years ago.
2. Spina bifida does not stop you from doing things, you just do them differently
This has been a HUGE lesson to me. I understand why people use the word “disabled”, which means “not or unable”, because I used it so definitely no judgment there. Now I’m more prone to say “differently-abled” because, as I watch my son, I realize he can do whatever he puts his mind to, just not always in the same way the masses do it. The same deal goes for the word “handicapped” which means disadvantaged. Read through the #ableismexists hashtag and see if it doesn’t open your eyes in some areas you never even considered. My eyes continue to open daily.
3. A wheelchair is not a tool of “confinement”
Everyone living with spina bifida does not use or choose to use a wheelchair. Many can walk with (or without) the assistance of braces, crutches and the like. My son uses a wheelchair (a pretty snazzy red one with wheels that light up btw). Even though he hasn’t verbalized this to me (yet), I’m gonna go out on a limb and speak for him. We HATE when people say someone is “confined” to a wheelchair. Confined means to be “restricted or cramped”. A wheelchair is a tool of independence, not confinement. My son is no more confined to his wheelchair than you are to your glasses. While you’re at it, go ahead and group this in with saying a person is “suffering with” spina bifida. My son is living with, thriving with, kicking butt with SB, so feel free to substitute those and file “suffering with” away for use never.
4. A person with spina bifida is just that … A PERSON … who just happens to have been born with spina bifida
Talk to them, say hi, be their friend, flirt, give them a compliment, fall in love, roll your eyes if they’re a jerk, ask them to pass you the salt at a restaurant, treat them like what they are, a perfectly imperfect human being just like the rest of us. There is no reason to treat anyone with any diagnosis as less than. I’m sorrowful to admit that, before I had my son, the differently-abled were invisible to me. I wasn’t nice or mean, I just did not see them. What a horrible but true confession, but thank God for grace and deliverance! I grieve for all the opportunities I missed to interact some pretty spectacular individuals, and I do not miss those opportunities now.
What do you think we NEED to know about Spina Bifida? Leave a comment and let me know!
Roshini Cope
Roshini Cope, aka Glamazini, is a life coach and video creator who gained a following for her natural hair tutorials, which evolved into authentic personal stories of healing with a consistent dash of humor. She is a black woman healing helping other black women heal, expand their self-awareness, reclaim their joy, and create the life they want. Work with Roshini 🤎✨🤎
4 Comments
Venesha
Hey Roshini…. so just a SB mom to SB mom question. I thank you for all your blogs and videos for newbies like me to research and view online. In you #4 paragraph, you mention how you weren’t nice or mean, but that differently-abled people were just invisible. I feel kind of the same way. I wasn’t eager to interact with a differently-abled person, but if I did, I was nice and polite, but afraid to ask about their story. In another vlog, you mention how people would come and point at your son and yell, Spina Bifida! I find myself doing that now that I have a daughter with SB. Anytime I see someone in a wheelchair or walking differently or with a brace, I wonder and want to ask if it’s SB or CP or MS. I have just become so curious trying to anticipate the future for my daughter and all the variations of SB. Would you say this is normal? Should I just stop someone and ask or let them be on their way?
I also kind of feel invisible or my daughter is invisible due to her form of SB (LMMC) because she doesn’t have many of the disabling effects or side effects of those with the most common form (MMC)so it’s like she doesn’t fit in on either side of the spectrum. She can do anything, but I’m still protective of her (she’s two next month) and she wears an AFO, so I watch her like a hawk when she’s trying to climb and play. I almost feel like it’s easier to explain her condition to those who know nothing than to other SB parents because I get the sense that I should complain about anything because she could’ve been dealt a worse hand. IDK, maybe it’s just my anxiety.
Anyway, let me know what you think about one or both of the topics. Thanks for being an inspiration.
glamazini
Hola! I had to look up LMMC and I’m still not sure I know what it is so school me. Being curious when you see someone with adaptive equipment or orthodics is normal. I’d say I’m obsessed with such things now that my son uses all of them and have had some great conversations. What can be a bit disconcerting is running up on someone just because of those things. Here’s an example. If you’re a black lady who adopts a Chinese child, it would equally strange to run up on every Chinese person you encountered pointing and saying “Chinese!” or on every person wearing glasses just because you just got your 1st pair. I’m not saying it can’t happen, but there’s a time and a place and not every time or every place lol. Maybe every once in a while saying “Nice AFOs” or “Love that wheelchair” is a more organic way to strike up a conversation that may turn into more. Hope that makes sense. With respect to telling others about your child’s condition, I think that’s just human nature, nothing specific to SB. Someone always has it “worse” or “better” and someone is always going to feel some kinda way about another person saying things and others don’t. I wouldn’t let your story be silenced because of the response of others.
Venesha
Yeah, the Babycenter.com SB Kids forum has a whole acronym list. MMC = Myelomeningocele and LMMC = Lipomyelomeningocele. LMMC is pretty much all of MMC except instead of the spinal cord being exposed to the air, it’s actually covered/entangled in a fatty mass (lipoma) and covered with skin. This makes it a closed neuro tube defect and prevents a lot of the in-utero nerve damage. It can be a dimple, a little nubbin or a fairly large hump. My daughter has a fairly large hump, almost looking like a third butt cheek. My blog covers her repair surgery at 6 months old through present day.
That totally makes sense. Basically try not to be eccentric and obnoxious about it. I like the compliment approach. I’ll try that should the opportunity present itself. Thanks again for the advice and always being open to conversation.
glamazini
Ok ok I see, and yeah I can see how others may give you the “you think you got problems? lemme tell you problems!!!” look or response but shoooo, your experience is just that, YOUR EXPERIENCE, and your story is your story so you get to tell it and they get to tell theirs. I’ve had plenty folk talk to me about how their child’s eczema was taking them out when I’m sitting there thinking “Uh, try cradle cap and eczema ON a brain surgery wound sucka!!” … but I don’t say that LOL … I smile and let them tell me their testimony because that’s how we overcome.