Tuesday, August 26, 2014

The hope of a child singing


J has been singing more the past few weeks.  And drawing (that's her work above).  It's the small things that I realised had disappeared from her life during the six months of nothingness.  Her six months on the lounge.  The singing and creativity had been replaced by DVD box sets.  Theme tunes that I never, ever want to hear again, yet at the same time brought so much joy to her in the midst of unrelenting exhaustion.

I've been exhausted this past month.  Thus the silence.  Part of the month has been having the flu, recovering from the flu.  I realised that I'm just mentally weary.  I've been keeping myself busy this past three months to get away from the consuming anxiety of a sick child.  Really busy.  I'm working hard at my job.  Lots of preparation at home.  But distractions only sustain for so long.

J has been tracking a lot better.  I can feel the real hope of recovery in small changes.  She's been going to a fatigue clinic for fortnightly appointments and sees a psychologist and an exercise physiologist.  They have been fantastic.  Concrete, detailed, nuanced.  We're seeing great improvements.

She's been going to school three half days/week this term (except for the weeks that she's got sick) and has even managed church these past couple of weeks (and even coped well with many well-meaning enquiries about her health!).  She went on the church youth camp and even though she had to share a room with me (I cooked), she was able to at least be there.  Tears were still shed on the Saturday night, from tiredness and also a sense of disappointment at not being able to participate in everything.

There's still so much for us to process and in some ways grieve, as the year we had hoped for J, has just dissipated in front of our eyes.  I have occasionally found it hard to read of other people's children, achieving or participating in life in ways that J has missed out on.  I have sometimes felt like a failure for not pushing the other kids to do more than just get through the basics.  But realistically, the emotional energy isn't there to do much different anyway.

Mostly, I'm just thankful that we can see those glimpses of normal returning for our little girl.

3 comments:

Emily said...

Thanks for sharing Jenny. I'm pleased to hear about the positive steps forward, and especially that the input from the experts is helpful.
The drawing is so lovely.

Karen said...

Glad to hear things are slowly improving and that J is doing more again :) Please pass on to her that I think her drawing is amazing!

Sarah said...

Ditto to what Karen said about the drawing.

I'm so glad to hear she is a bit better. I can't imagine how tough it must be for you all. x