Well, Easter is another time of year we can’t just celebrate and give milky bar eggs to all the children. It may seem stupid, but it hurts.
It is heartbreaking to watch Ralph and Steven get excited about the Easter bunny, chocolate and all the little things children enjoy. Of course we don’t leave her out, she gets clothing or a toy instead of an egg, and Ava is no exception all children who cannot eat orally it effects. Much the same as Halloween and trick or treating – but that’s for another time of year!!
Nether the less it is what it is (this is by far my most over used phrase at the moment!) and that is because it really is what it is. No magic wand or potions will change things so, we get on with it.
It doesn’t mean though that it doesn’t effect me. The fact that Ava can’t walk and run around and do the Easter egg hunts, or that during the Easter holidays we don’t tend to do anything because their Dad works non stop to keep us living and, well, to be honest I think people don’t invite us places because of Ava.
People may indirectly do it; but I know for a fact that if Ava were “normal” we would be interacting with more people. Going to places and doing things, but we don’t. This is the sad reality of this world I, we, people like us live in.
We get unintentionally left behind, people don’t mean to, but assumptions are made, conclusions are drawn up but no one ever just outright asks. People think my child, Ava, won’t enjoy the normal things, she won’t cope with it. But do you know what? I’ve never known a happier little soul who gets so much joy out of interaction with people then Ava, and that’s the same with other CHARGE
children I’ve met (a grand total of two!!).
I know this way of life will have an impact on my other children; there’s only so many times I can walk the block with them or go to the park before they get bored and start wanting more then I can give them. I don’t expect people to help me out. Ever.
But wouldn’t it be really nice to be included in the normal things and people want to help me, and want to help my kids interact and explore the world. Do you know how many days and times I’ve wanted to go to the beach, go to a
Soft play with the kids but I can’t.
Ava is difficult in public, she can go blue; she can’t walk and when I’m trying to chase the others I can’t leave her to fend for herself for a bit or let them all freely play in a centre?
Was I wrong to have other children? Maybe.
But I know they’ve helped her immensely, they’ve grown to love one another, entertain one another, and when the world seems to have turned it’s back on us they’ve always got each other.
it is what it is.
One things for sure, the world maybe a dark and lonely place to be in for me, but I make damn sure these kids feel loved and know they’ve always got someone to count on.