Apologies for my long absence. I have thought many times of my blog.
As all who know this illness know, there are so many unknowns that I find I’ve become a little fearful of reporting what’s working for my girl lest it be completely the wrong thing for your child.
Thus I hesitate (as always) to speak in absolutes. However, I know that many of the people who read this site are valued friends who may like an update and others are as aware as I of the inconsistencies and will mull over my thoughts as they are meant to be mulled over…just another ingredient in the pot of parenting cfs.
The thing is, you see, I have goodish news. And whilst one part of me wants to shout from the rooftops, most of me is terrified I will jinx things if I open my big mouth…
But, ‘A life lived in fear is a life half lived’, as we were reminded in that excellent 1980s Baz Lurhamm film “Strictly Ballroom”. 🙂
So here goes my cautiously optimistic rooftop shouting!!
A list of things that my daughter does now that she couldn’t last year:
Leave her bedroom every day for places other than the bathroom.
Regularly sit upright at the dining table for meals.
Leave the house just about everyday!
Joke around with her younger brother for more than minute without getting so tired from the effort that irritation quickly sets in.
Face social visits from friends with equanimity. (ie not almost paralysed with fear about the effort it will take or how ill she will feel afterwards)
Go for a short walk with me just because she can.
Look forward to family holidays. (previously the travel was too exhausting – low BP and flying don’t mix- and the change in environment too much and hence exhausting)
And I’m sure there are many other things but….. I’m just busting to write the biggest and newest development…..are you ready….this is like huge…..you might need to sit down. Okay, here goes : SHE’S READING AGAIN!!!! And when our girl reads we are talking a book every day or two so we can really tell because we’ve had to add the local library back on our list of places to go as the budget was not coping with bookshop visits!!
So there now, after all my conscientious hesitation I’ve gone and got all excited and blurted it out!
I know that those of you with ill children will want to know if something particular has helped, and I feel your need deep in my heart, but I have allowed myself a tiny bargain with fate. You see, this Thursday, our girl will try to get to school for the first time since February. It’s a huge deal for her and thus for us.
She suggested trying a maths class. I countered with “How about English?”. Her specialist said, “How about an elective and no homework?” !!
So this Thursday, all being well, our girl will go to school at the start of the day, watch a PE class and then do an art class. Then come home. And if that works she will try again the following week. (And her parents will buy a massive bottle of champagne and drink it quietly so that our precious girl doesn’t know how much we care that she is back at school!! Because our hopes and dreams for her are the last thing she needs to think about.)
And if it doesn’t work out. … Well, we’ll take a deep breath, regroup and keep going. Like we always do.
Either way I will share with you the huge combination of things that MAY have helped our girl.
The thing is, it could simply be that her growth spurt has slowed. We may never know. Or next week, after months of improvement, it may all have gone backwards again and I will have no words of wisdom to share. I hope with every fibre of being that is not the case.
Please keep your fingers crossed for Thursday.
Smiling and waving somewhat frenetically!!!