Wednesday, March 09, 2011

Some days...

Some days it just hits you
B.A.N.G!
Right in the middle of your heart.
It's not quite as painful as the first strike
But it's painful nonetheless
And it always catches me off guard...

There was nothing particularly bad about today:
the sun shone, the snow fell, the sun shone, the rain fell;
and I talked to various health care professionals.
The day was going well
And then
B.A.N.G!
I was in tears...

A mummy at the nursery:
Eilidh ran into her -
Not on purpose, I may add, I think that she just wanted past -
The mummy looked down at Eilidh and angrily said
"I hope that you have a driving licence for that!"
I'm sure that she didn't mean it nastily,
But I felt my heart being tugged.

And then a conversation:
The nursery are still getting used to Eilidh and her Whizzy Wheels;
They haven't had a little one so independently mobile in a wheelchair before.
I feel that it has been going well but I'm not sure that Eilidh's key worker is so sure.

It's difficult to try and get the balance between independence and what is best for Eilidh (in our eyes) and what is best for the nursery workers and the other children in the room.

Eilidh loves having people busy around her, she loves pushing buggies around and playing with babies: she wants to be a normal toddler and cognitively she is, but she is severely limited physically by her disability and this frustrates her so, so much. 

Eilidh is mobile thanks to Panthera and their amazing Micro chair which is by far the lightest on the market... she loves her chair and I love it too for what it has done for my beautiful little girl.  But she is fast outgrowing her chair... nursery want a chair more suited to their needs but this means that Eilidh will be unable to self-propel because the newer chair, the more suitable one for the nursery, would be too heavy for Eilidh to move...

So how to we find the right balance?
We are all right but today this weighs heavily on my mind.
I cry as D gets home.
It hurts so much:
I can feel my heart close to breaking,
"I just want her to be normal..."
I wish that we could wish SMA away...

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