It's been a funny week one way or another. Sam's doing brilliantly on a blended diet but we’re still fighting to arrange school transport. Once again his existing school has let him down badly by not arranging training for staff in how to peg feed him, so he’s still stuck at home with moi.
While I love having this time with him, I’m also full of a cold so not being a very fun mummy!
Then this morning, a friend on Facebook in one of the support groups suggested we each did a post entitled I wish... And it got me thinking.
So, here's my list for my beautiful boy; I wish...
That I could take the seizures away for you.
That I could take away the pain and fear - mine and yours.
That you could talk to me, just to hear what your voice sounds like.
That you could walk. That you didn’t need to be fed through a tube.
That I knew how to make your life better.
That when I’m gone, you’ll be safe, loved and happy.
There are a few tears now. It's quite a poignant list, because I know that my son may never be able to speak and tell me he loves me. While I have no doubt that he WILL walk, eventually, he will certainly still need a wheelchair for the times when he’s just too tired.
I always try to be positive and to look on the bright side of things.. and when I look at how far he’s come the tears come again because he is just brilliant! He smiles, laughs and gives the *best* cuddles in the world.
He does know what I’m saying to him, because when I kiss him goodnight and tell him how much I love him, he gives a little smile (even in his sleep). My heart breaks for what he is denied because of his condition, and at the same time bursts with love and pride for this little boy who refuses to give up.
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