Ok, you probably won’t like me much when you’ve read this post. I’m not desperately fond of myself at the moment, either. But the deal I made with myself was that this blog would be me warts and all. Otherwise, what’s the point?
So here goes. Me in all my most resplendent unattractiveness. I have been wallowing in self-pity for much of the day. Boo seems to have plateaued developmentally. His low trunk tone is stopping him getting much further and no matter what or how much I do, I can’t seem to fix this. I am desperate for him to sit. For the hope that him sitting would bring me. The hope that some gross motor milestones might actually be his for the taking. But I’m also a bit desperate for my back, too, if I’m honest. It’s not coping fabulously at the moment.
I hoped when I told the physio this morning about my fears that he was slowing down that she’d tell me I was being daft. She didn’t. She agreed. She referred us to wheelchair services for an adjusted buggy. We talked about how desperately we need our OT referrals to come in. (We have be one the waiting lists for some time.) We talked about how the fact he doesn’t currently have adequate seating is keeping him back and may cause damage to his back. While trying to process all this I spent ages on the phone looking into conductive education and feeling overwhelmed by the prospect and commitment it would take. Let me be clear, I am 100 per cent committed to Boo’s health as it is, but there’s not much slack in the system to take up for new things. Something would have to go. It can’t be precious time with Sissyboo, or, unless we totally reconfigure life and up sticks and move schools etc., my work. Maybe it has to be my sanity. Then a bunch of trivial things went wrong. A bit fell off the car etc. You get the picture. Wallow, wallow, self-pity, wallow, wallow. See what I mean? Not very attractive. It gets worse…
I had to get Sissyboo from school and I stared hard at my iPhone as if I was doing some really importantly work (actually I was tweeting, maybe that constitutes important work, in a way). I didn’t want to be approached by anyone. I couldn’t stand even overhearing their conversations. Like the Mum who was saying ‘what a nightmare it was’ and how ‘stressed’ she was about trading in their colossal 4×4 for another new 4×4, or the other parent who was irritated that their 6-year old didn’t do as well in their grade 2 piano exam as they’d hoped, or another who said she and hubby had been out so many times this month that they’d run out of babysitters and would have to miss out on a dinner party next week. None of this is made up.
I gritted my teeth and tweeted harder, hoping the tears welling up in my eyes wouldn’t show behind my sunglasses. I should have such nightmares, I thought. You don’t want to know what mine are like. I don ‘t get them every night. But then I don’t sleep much. Boo may never walk, let alone tickle the ivories and if The Grumposaur and I go out again before I’m 50 (still some years away, I hasten to add), well, I’ll be amazed.
Walk a day in my shoes, I internally screamed. And then my anger turned to me. Who the heck was I to belittle others’ problems? I may never have owned a 4×4 and my dinner party days are long since over, but I have had the luxury of being a parent to a neurotypical child before having Boo. I got stressed at times and life often felt difficult. I didn’t know I was born.
I’m glad I had that experience. And I wouldn’t really want others to feel bad about having it good. Because to feel that way, you’d have to have had a glimpse of the bad. And I would do anything I could to stop others having it bad. Like us and so many families like us or in much worse situations than us. I am glad the playground mums’ problems extended to cars, pianos and nights out and not anything worse. I really was.
By contrast, I will never be glad that Boo was premature. Never be glad that he is disabled. Never be glad that Sissyboo has to be affected by things that no child should be affected by. But then I looked at Boo’s dopey, sleepy happy grin (aka his seven dwarfs grin) after I gave him his bedtime bottle just now as Sissyboo read me her school home reader and I cannot imagine being happier.
Enough of the jealousy, then. Life is hard as hell some days. And I refuse to pretend on my blog, as I often have to in life, that it isn’t. But I really wouldn’t want it to he different. Let it go, Mrboosmum. This is your world now and it may not all be trees of green and skies of blue, but it’s still wonderful.