This is a topic that is hugely on my mind at the moment.
We, as a family, are learning to accept the fact that Ellis is now disabled for the rest of his life.
Despite beating the cancer, the heart failure and the Covid, this is the one we are left with.
To look at, he looks ‘normal’. His hair is back, his teenage attitude is back 😜 but his bones are not.
He is bionic.
I am now a Mum of a child with a disability.
We have never had the time to properly digest it until recently.
We have the blue badge, the DLA, the risk assessments and the hopeful EHCP (fingers crossed) , but we’ve still never seen it.
While we all want Ellis to have his life back, we are coming to terms with the fact that it’s not the same as it was.
He will need extra support his whole life, not just as a child.
His leg length discrepancy is much more noticeable now, with his limp being more prominent. He has to prepare his leg a few minutes before standing each time, because it goes stiff and he can’t move it.
We are always conscious of hills when we go for walks or unsteady ground or where the next bench is.
His friends have been incredible, allowing him to slot right back into their group like nothings happened and I genuinely can’t thank them enough. This has been everything to us since going back to school ❤️
But we need to now start planning going forward for having a child with a life long disability.
A simple holiday takes so much planning.
From travel insurance, to disability friendly hotels. Days out ruling out things he used to love and the constantly having to explain to people that no, he can’t do trampolining or go ape. Actually, there are lots that he can’t do and that’s forever.
Worrying about what could go wrong and carrying out virtual risk assessments in your head every single time we go out.
But not as exhausting as denying anything is wrong and picking up the pieces when it all falls apart.
So we are learning.
Ellis is learning.
And I continue to be in awe of him every single day ❤️❤️❤️