Lately, I have been noticing more and more a trend on the forums and groups I am in. There may be a SLIGHT obsession with walking. Every post I see is someone worrying about their child not walking as much, not walking as far, or not meeting milestones in order to walk. It's the normal expectation, and even with our not so normal (yet still very awesome) spina bifida lovelies, many of them can walk with some assistance. But there are some who don't...
I will admit, I am part of the problem, because I hesitate to post where Callista is developmentally, because I don't want to scare moms who have kids younger than her, or are still pregnant with their SB babies. When I was pregnant, I fully expected to have a daughter who would use a walker, need braces, etc. I never intended her to never walk, struggle to sit up, and have significant delays in all other areas. Because everyone in these groups always talks about how well their children are doing and that with time, your child will get there too. But sometimes they don't...
So why do people like me try to hide our babies like they are bad news no one wants to hear? Quite frankly, when I take a step back to write about it, I am embarrassed that I don't share more with these moms. It might be scary, but it's reality. Just because Callista doesn't do what she is suppose to doesn't mean her life is bad or she's anything less than wonderful. I guess I shouldn't say I hide her, because we are very public with our trials and celebrations. But I don't post often when people ask questions like "Anyone else's baby not sit up at nine months?!". Because she's two... and still struggling. And posts that go something like "Finally! At 18 months we've started pulling to stand!" yank at my heart, because at two, we're nowhere. Because sometimes it just doesn't happen.
But why don't I read about THOSE kids? Those babies just like mine exist out there somewhere, and I know that we are proud of the accomplishments, no matter how small. Why don't we post about those? Why don't we be honest with others and say "No, my child doesn't do that and probably never will"? For me, I think I don't say anything for fear it will be taken as negativity, when really it's just the truth for us. I'm not upset about our situation, just answering honestly. Just because she doesn't walk does not mean she's less valuable, nor will I spend all my time hyper-focused on that one part of my child. Let's stop sugar coating everything for everyone and show them even if we aren't "normal", we are still happy. And fabulous!
I can understand where you're coming from. My little one, just turned 4 at the beginning of May, has SB and wears afo's to walk, and can do a lot of things that typical kids do but in her own way, walk, run, jump etc. However he did not start walking until almost 2 without a walker. I remember sitting around with friends of typical kids who were running at 1.5 etc and here K was not really cruising etc and I felt horrible. She sat up and crawled all at the typical age but then things slowed down and now we deal with the whole potty training thing. I often don't post about K and how well she is doing because I don't like to make others feel bad, we're kinda in between both worlds.
ReplyDeleteAnyway I think it is important for moms who are pg with sb kids and ones who has a sb baby (ours was not even diagnosed til she was born) and show them a complete range of what the kids might not and might be able to do. Every child even with the same diagnosis, will have differences. I say show off our sweet little girl! :)
I guess I just didn't share because it does seem like I am saying "Ok, well just because all these kids walk, mine doesn't and it could happen to you too!" and I don't mean it in a negative way AT ALL. But I don't think it'd necessarily smart or fair for people like me to just not ever share or reply just because people take it negative. It's true, she doesn't do, well, anything really. Because we are still working on head control. She just recently started playing with toys at two years old. We are very behind, even by SB standards and I don't want to hide it anymore :)
ReplyDeleteI totally get it :) I think a lot of it is because the stigma from way back when, when drs said all sb babies would not be able to do anything but essentially be vegetables, never walk, be able to do the many many things that our kids can do!
ReplyDeleteIt's also hard because when a new mom of an sb baby (still pg or newly born) we want to paint good pictures and show them life isn't as bad as it seemed 30 plus years ago, but the reality is that are many sb kids/adults who don't walk, but they live healthy & satisfying lives. That's the picture we need to paint, that it is OK if they don't walk, or whatever, if you show them love, they will grow and be loved and enjoy life :)
Rachel and I are right there with you and Callie - we are not the normal SB and we are happy and fabulous!
ReplyDelete