But he doesn’t need you to feel sorry for him, he’s still Aj.
He’s still the same little boy he was 3 weeks ago.
He still have the same beautiful smile.
All that’s changed are his physical abilities.
It’s hard when people pity you, I’m trying so hard to be positive - to make people a little less nervous (I’m guessing?) around him, but at the same time.
I’m still grieving for the parts that have gone.
You see my son used to walk, not very well.
But he walked.
He would follow me into the kitchen and point for his biscuits.
He could climb/crawl up the stairs.
He could climb onto the settee.
Get himself off the bed.
Use his own iPad.
Lift his own drink.
All of that has gone.
“Will it come back?” - a question I’ve heard, and asked myself, and doctors a thousand and one times.
The only answer is that we don’t know. No one knows.
You see the longer a seizure lasts, the more likely it is that there will be lasting damage to the brain.
He already making huge improvements though.
Two weeks ago his doctors feared he was blind.
He wasn’t fixing or following anything with his eyes, they weren’t even reacting to lights.
He couldn’t roll over or even change his own position.
Now, he’s sitting unassisted for longer periods of time and I’m more than 99% sure he’s seeing the TV!
A recent eye test showed he’s now following things with his eyes, but his eyes are, ‘wobbling’, in certain directions, which can indicate changes in the pathways to the brain.
There will be further investigations into this.
He’s even starting to try and crawl.
I’m hopefully he’ll regain some of the lost skills.
But, at the same time, it’s made me wonder.
Aj using his Scooot
Is walking really all that matters?
It’s taken me a while to get used to, but now I’ve realised, it doesn’t matter if he doesn’t do all the things he used to.
If he learns to walk again then yeah, that’ll be awesome!
And if he doesn’t?
That’s fine too.
As long as he is happy.