Monday, November 7, 2016

Spina Bifida Awareness / Spina Bifida Reality

October was National Spina Bifida Awareness Month.  It was also Pregnancy and Infant Loss Awareness Month and a part of me couldn't help but wonder if the point was lost on outsiders with awareness of this and awareness of that being thrown around.  Every month of the year hosts multiple awarenesses and while I agree with the good in highlighting certain topics that were once swept under the rug, I'm not always on board with the whole awareness month thing.

Recently, I've found myself struggling a bit when talking about spina bifida in the way one would for awareness month postings.  Why?  Well, everyone is so upbeat when it comes to SB awareness.  It's all about showing the strength of these kids and adults with spina bifida.  They can do everything you can do.  They'll overcome any challenge thrown their way.  And I'm not disagreeing with this at all but what about the crappy side to having spina bifida?  What about wanting to be like everyone else when the class takes a bathroom break?  What about feeling down on yourself when a classmate tells you to run faster in gym class?  What about having to leave class at least twice a day to visit the nurse's office?  How about when your kid with SB asks why babies can be potty trained but she can't?

You all read here.  You know that Anna is a typical fourth grader but there's a lot of crap behind the scenes that I don't always point out.  Especially day to day.  

As a member of both the SB Parenting Group and the Stillbirth Club, I can't help but notice the difference in the discussion of these two topics.  Do parents of stillborn babies talk about how they overcame the death of their babies to live "normal" lives?  Not really.  Yes, it is true that if we didn't carry a particular strength, the weight of stillbirth would have certainly crushed us.  But this is not an easy life to live.  We talk about the cement-like feeling of grief.  We admit that we've been plagued and haunted by guilt.  We still cry over our babies who will forever remain babies.  Yes, the fog lifts and life carries on but the message is that it's okay to have these feelings.

I understand why some choose to focus on the positive.  It's a better way to live.  I know.  But I feel that in order to make others fully aware, they need to see the negative side as well.

A few weeks, I mentioned how Anna finally weighed enough to transition to ditropan in a pill form.  The pill is slow release and only needs to be taken once a day, which is more convenient than the liquid medication.  Well, we tried it and unfortunately, it was as if she wasn't on ditropan at all.  She was leaking urine between every single cathing and in some cases, leaking is too mild of a word.  This was upsetting to all of us and led to other issues.  We spoke to the urologist's office and she went back on the liquid form, three times a day, over the weekend.

There's also been some crap going on at school that I've started the process of shutting down.  About a month ago, Anna told me how a boy in her class called her a midget.  Say what?  He didn't walk up to her and say, "You're a midget."  There was a discussion regarding short people taking place and after he called Anna's friend's cousin a midget, he told Anna she was one too.  Now, I try to teach my kids not to let stupid shit like this bother them.  Honestly, between you and me, I would have responded with, "Well, it's better than being an idiot like you," because that's how I grew up.  There were no anti-bullying campaigns in school.  The strong preyed on the weak and I somehow ended up with a big mouth because of it.  By the way, if I even suggest this to my kids, they would say, "Mommy, that is so mean!  We can't say that!"

I gave the kid a pass.  Anna's overly sensitive to her size even though there are several other fourth graders who aren't much taller and what he said to her wasn't overly offensive.  It also had nothing to do with her having SB.  But then he decided to step over the line.

Less than two weeks passed and Anna tells me how this kid happened to be in the nurse's office when she was there and later, he said, "I know what you do when you're at the nurse.  I saw."  Anna started crying as she was telling me this.  This kid led her to believe that he saw her being cathed.  I reassured her that there was no way he knew anything and that he was simply being a royal pain in the ass.  I stopped by the nurse's office and talked to them and they confirmed that there are safeguards in place so that no one can walk in on them.  The nurses are awesome, by the way.  They truly care about Anna and take such good care of her, mentally and physically.

We have a 504 meeting with the school next week and I plan to discuss this kid with everyone who needs to know.  It pisses me off that he crossed the line and made her feel so exposed.  Anna doesn't tell the other kids at school that she has spina bifida.  Her friends know, of course, but they don't ever discuss the implications of it.  I don't know if she's embarrassed, which she should never be, or if she doesn't want them to see her as different.  Either way, it's a shame.


Just the Tip said...

We are dealing with much of the same and mine is a very sensitive emotional child. Who couldn't hurt a fly if she had too, also.

<3 <3 <3

BreezieGirl said...

I'm so sorry Anna's having to deal with a jerk at school and her new med switch didn't work out. I love reading your/her story though because it's amazing to see the village she has - the support of sisters, friends, parents, teachers, school nurses (not to mention what seems like the bravest and strongest spirit).

Tracy said...

What a little jerkwad, is it wrong that I wish something awful to happen to that boy, like his pants fall off at an assembly? I'm sorry Anna has to deal with his insensitivity. Some kids just suck. Oh and in response to your other post, I don't mind seeing the same pics here and on IG I get to enjoy them twice :) @wizzycupcake

Jen Tang said...

Sorry to hear that Anna (and you) have to deal with an arse. As a mom to twin boys who are smaller than most, it is something we deal with as well, Despite all the anti-bullying rhetoric, I don't think it really works. I know this isn't going to be a popular thing to say (and I did grow up at a time where there is no such thing as anti-bullying), I teach my kids to stand up for themselves. Never hit first, but if someone pushes your around or hits you, hit back. I agree with you: bullies prey on those who seem weak and don't defend themselves. Stay strong, sweet Anna!

Tracie said...

Will Anna be able to cath herself at some point? I can't understand how that would work because the times I've been cathed myself a nurse had to do it ( in the hospital) but I'm hoping she'll have more privacy and independence for that process. My kids are homeschooled and I would not be able to handle a little boy like that - grrrrrr!

Sarah said...

Tracie - She will be able to cath herself - it's pretty common amongst those with SB. I thought it would be difficult b/c she can't feel it but I guess that makes it easier. Which makes sense.