Monday, Oct 17 2011 Grief and Impending Loss

1. I have been reading lots of other blog's today from other parents of children with special needs. There seems to be a bit of recurring theme at the moment about thoughts and grief and fear of our children's mortality, and memories of the day we were told our child would not live long, who not live past two, or four, or eight, or that they shouldn't have even lived to birth so loss at any time should be expected.

As most of my readers, family and friends know we were told when Cameron was a new born that he may not live to two years old. We were told by our dr, that he hoped that in many years time we can come back and show him he was wrong...then he handed us a medical document(the only thing he could find about the syndrome they thought he had) that was hard to understand and fathom, about boys who have the same syndrome, none of which had lived to be two, and all of which were very sick their entire life span.

For two years our family and friends feared for that awful day, we grieved for the loss of a future we had so dreamed of for our little boy.

Thank-fully for now the reality of this diagnosis is so much different. After two years we were given a different outcome for Cameron and his syndrome. A "new" diagnosis, the Syndrome was the same, but the prognosis was different. It had been discovered that there were more boys with the same syndrome, and although very sadly many of the boys had passed at very young ages, therw was still hope in discovering boys as old as mid 20's. I think now, two years on again, there are boys even older..into their 30's.

Sadly there is still a shadow sitting over us, and we do still revert to living in fear for our son's life, but for the most part, now, knowing how strong and healthy he has been the last four years we hold onto hope that he has many more years to share with us.

Like the mother in this blog: around Cameron's birthday I start to grieve a lot. As well as celebrate the coming of his birthday and another year spent with him, there is also the memories of his birth, the trauma of what we were told, the moment our lives changed forever, in a way we could never have expected or been prepared for.

I grieve and think about how he is another year older, but is still only learning the things a child under one can already do.

I struggle at other children's birthday parties(there seems to be a million of them around his birthday) as I watch them celebrate in pure happiness for such a special day. I cry inside as I watch proud parents faces as they watch their healthy happy children cut cakes, blow out candles, open presents, and play party games with their friends. When I know that on my son's birthday he wont understand, he wont celebrate, he will wonder why his house is full of noisy people, and will probably wish they would all just go home, and he wont understand that everyone is singing "Happy Birthday" just for HIM. Although he will be very happy abut getting to eat cake! :)



2. I also read this article

As I cried reading this blog I reflected back on the grief of the first years, and the way the future we had 'planned' and hoped for Cameron was ripped out from under him. The grief of not knowing if he even had a future.

Although since having Sebastian some of this grief has left, and I am able to celebrate in the joys of having a child do regular child things, is is still not the same. Sebastian's childhood also wont be the childhood we had hoped for when we decided to have children, and even though we knew that when I fell pregnant with him, it doesn't take away our guilt and fear for his childhood as well.

Although I found siblings of children with special needs to have an amazing empathy, understanding and acceptance of those around them who are different, and a kind of gentleness and appreciation for life, at the same time their lives have not been easy.

Things that worry me for Sebastian:

That he misses out. That he will miss out in the future.

That I cant always give equal attention

That he spends too much time having to go to appointments and hospital visits, and not enough time at the park and the beach.

That he will be teased about Cameron. That he will hear people say mean things about his brother.

That I am too sad, too angry, too tired to be a good mum for him.

That I won't always be there when he needs me.

That one day his brother will die. That if this happens he will have grief and loss. That I might be so grieved by the loss of Cameron that I will forget about his grief for the loss of his brother.