Structure

That's what I decided I need. I think I've hit rockbottom (with my last moan - sorry, post), and now I'm on my way up. I'm sorry I've used this blog as my sounding board, but maybe that's exactly what I needed. Today, the sun is shining and I realise that even though life isn't easy, there's so much to be grateful for. And so many people have it way much worse than I do. I stumbled upon a mom's blog and her daughter has had to go through so very, very much. Due to a chromosomal defect. And life for the little girl will never be easy. She can't see or hear. Still, she's clearly loved so very much, and she's happy. Really happy. Isn't that what we all want, in the end, for our children? For them to be loved and be happy? This mom has a beautiful writing style, and I found myself reading until the early morning hours. But what really got me thinking, was that despite the fact that the early years after the little girl's birth, had this tangible sadness threaded through their lives, the mom never moaned and complained and went on and on about how awful all of it is. Of course she vented, and of course she sometimes despaired and wondered what life will bring, and if she's doing right by her daughter and other children. But she had this happy and contend disposition that came through on her blog. She accepted life as it is, and she had faith every step of the way.

Of course there's still moments I want to cry, but there's no need to sit and dwell on it anymore like I've been doing for months now. I think in some ways it's easier to have had a diagnosis from birth. To have the support of all the specialists without the need to fight to get it. To have a set of expectations of what the diagnosis will mean for the future. To have stats on what's likely to happen or not. To have the support of other parents going through the same (kind of) thing. To be able to demand what we need from the school, without feeling like you're throwing your child under the bus by telling them about all of her peculiarities. To know which anomalies, symptoms and signs to look out for, and which ones belong to the diagnsis, and which ones you need to look into futher. To address those separately. To look at studies on how language develops in such cases, and what I can do to help Boeboe with the barriers in her brain.

I think it must be exceptionally hard to hear that your teeny tiny baby has this huge defect in every little cell of her body. And the fear of the future must be overwhelming. Still, I sometimes envy the parents that has that at birth. I lived in blissfull ignorance (or tried to, you learn to squash that little voice inside your head, but never completely succeeds). But now, 10 years down the line, I have to fight to get anywhere. Life is extremely difficult for the mommies that knew from the start. But after 3 or 4 years, it tends to get easier. Because they have acceptance, and things are put in place from the start. To try and raise your child normally, when you can see it's not working, but have no support or structures in place to help you and guide you and support you... To not know - are you doing your child a favour by raising her normally, if she might not be? And what if you start to accept she isn't, like move her to special ed, have less expectations, treat her behaviour difficulties differently, etc. and then find out, oh, but there's just absolutely nothing wrong and you were all just imagining things all along. What's worse? On the child? What's best? I personally, at this moment in time, wish I had the answers. I wish we had a diagnosis. And not stumbling in the dark like we're doing now.

Boeboe's problem, like always, has been that she's just never worse enough. Like her tethered cord. Not only didn't she have any of the outside markers, she also didn't have it bad enough to show up on MRI. No, she had to have the lightest case of it all. Yes, I'm grateful, of course, but that made things so much more difficult on her and us.

When she had sleep apnea, I believe that in the USA/Europe, she would've been admitted into hospital and monitored for a few nights to get to the bottom of it. But no, our pead looked her over, declared that it might be SIDS and that we'll just have to keep her on the breathing monitor. That's reactive, not proactive. Typical of South Africa's private health care. So I did that. I accepted that. When she didn't suck well, the blame was put on my body not supplying her with enough. Apparently, without even monitoring it, I must've had a supply issue, the pead said. Again, I accepted the blame. When she didn't smile for more than 9 weeks, I was told some babies are just late. When she weighed less than 7kg at age 1, I was told she's a tiny thing like her mommy. When she couldn't eat fingerfood until long after 18 months, I was told I'm spoiling her by giving her blended food. When she gagged when drinking fluids, I was told she shouldn't have had breastmilk for so long, now she's spoiled.

When she didn't speak for years, and not clearly until she was almost 5, again we were told "it's because she has an older sibling that speaks for her" or "some children are just lazy", etc. When she had the urinary symptoms, I was told she's naughty (by this same pead). Ag, I can go on and on and on. Bottom line is that the doctors failed us, I believe. Because Boeboe was never bad enough off to get their attention. The snapshot they saw when I took her in for an evaluation, wasn't enough to raise concerns. She grew, albeit slowly. She developed, albeit slowly. She was healthy and seemingly fine.

Maybe if she took 6 months for head control, or didn't sit until after her 1st birthday, or couldn't walk at all for 2+ years, then the doctors would've acknowledge that there indeed is something wrong. But having a child that just does everything at the very late end of normal, was still just that, in their eyes. Normal. And what mommy wouldn't be relieved when you're told it's normal for a baby to only start to sit unaided (for 1 second) after therapy, at 8 months. And that it's perfectly normal for a baby to not say more than a handful (badly pronounced) words at age 2. Or that it's normal for a child to fall down numerous times a day or have hypotonia in the upper body or have late development of the hip socket. And I understand that. Boeboe was at the late end of normal. It's just, when you're always late with everything... always at the bottom range. Always the shortest. The smallest head. The last to walk or sit. The last to talk. The last to be able to memorise time tables. The last to finish the work in school. The last to be able to read. Always at the bottom range - doesn't that throw up red flags? Why didn't the doctors SEE this? Why does a child need to be totally out of the range, before they'll believe there's something? What about those bottom range crawlers? Is it okay to ignore them?

If you have a child that develops socially normally, but physically she's slow, academically she's doing well but lagging behind in one or two physical areas. Then you say, "just give the child time, he'll catch up, he's fine". Or for a child that's advanced academically, gross motor development is on par, etc. But socially he's lagging, exactly like Monkeyman, you say "oh, ag, he just need more security for longer, he's fine". But when you have a child that's lagging physically, lagging emotionally, lagging socially, lagging academically, lagging in gross and fine motor development, then shouldn't you start to wonder? Even when those lags are still within the normal ranges, albeit at the very very bottom of it? If it's across the board, shouldn't you realise there's more to it?

Partly, I guess it's my fault. I should've realised and do something about it sooner. I accept that blame. I should've been on the doctors' case, been in the rooms every second day when she had sleep apnea, until they could tell me why. Or when she refused fluids other than breastmilk for 2 years. I should've told them time and time again there's something wrong until they believed me. But, being a mommy, I refused to believe there really could still be something wrong. When she was released from NICU, I so desperately wanted her to just be okay.

And she will be okay. We just need help, and I'm going to fight for that help. I've accepted now that things aren't rosy coloured anymore. I'm getting out of this groove, and I'm doing what I should've done 10 years ago already. I'm arming myself with information, and I'm fighting for help.

I decided I need structure to get my life into some order and routine to get out of this slump I find myself in. I'm making some changes in my life, and I decided to include the blog on that. To give myself some goals.

I'm going to challenge myself to three things on this blog. For a month at first, as a trial. One is, (and I'm copying this from some other blogs) Medical Mondays. I'm gonna use the blog to sort through my thoughts, discuss my favourite subjects and the research I've done on it, etc. In the beginning I'll probably concentrate on the issues my children/family have, but I may digress as I come across other interesting topics.

Secondly, I'm gonna have Wednesday Warmer. For the winter that lays ahead (in our country!). I hate winter! In any case, on Wednesdays I'm gonna have a short post with something that warms my heart. Whether it's a photo of one of the kids, a milestone of Peanut or a picture on the internet that touched my heart, or even just a quote.

And lastly, on Friday's, I'm gonna have a post to give an update on one or more of the children. Good or bad, just a quick post to let everyone know where we are in the different processes, or what's up in our lives. I'll post in between as well if something important happens, of course. Having these 3 goals for the week would challenge me. Maybe keep me sane. :-) Like the saying - fake it till you make it!