I'm growing (which is a sure indication of how much I am loved and cared for!) and I'm getting heavy. I'm tall, too. Carrying me is becoming increasingly difficult, even though I hold on pretty well now!
We are about to hit our latest stumbling block.
We can see it... looming in front of us and blocking the way.
It's an emotional block... It brings guilt and fresh heartbreak.
It's my hoist.
If Mum and Dad can't lift me and carry me, they have to use the hoist...
And if they can't carry me, they feel as though they are letting me down.
All we saw were the limitations and the invisible chains to tie me down.
Now, after a lot of thought, tears and sorrow... we can't wait for me to get my first wheelchair. We're ready.
I know Mum and Dad will be able to say this about my hoist, one day, after a lot of misery and heart break. After many feelings of guilt.
But, for right now... the hoist still sits in the corner of my bedroom. Unused.
My new bathtub is higher at the sides than the old one.... and this means more bending for whoever gets me in and out of the bath. It's not easy.
Once I'm lifted, it's much easier. They can still carry me, and I think they will continue to do that for a long, long time...
But lifting me and not being able to bend their knees... this is becoming a challenge.
In really simple words, here is why they can't use the hoist... yet: "
I feel like I'm letting you down. I feel like I don't love you enough.
I feel like a failure, because I can no longer lift you and I should always be able to do that."
We hate cerebral palsy.
They know none of that is real. They know they will end up hurting their backs (which would make things really, really difficult!).
They know they love me and they know they are not letting me down.
They know this, but it does not make it any easier to move to the next stage... to have to rely on more 'disability' equipment.
We know we will get there, and that one day, we will use the hoist without even thinking about it... but for now, this is a huge emotional stumbling block.
Life with quadriplegic, non-verbal cerebral palsy and a vision impairment is never easy. #raisingawareness #cerebralpalsy