Thursday, 8 November 2012

Broken hearted

This Monday we had our annual consultants' appointment. It was going well. At the end Craig asked a question that has been on his mind for some time, especially after Sean (a little boy just a year older than Seth whom he had been a class mate of) died. He's been wanting to know how life-limiting Seth's brain damage was and what life expectancy he had.

Our doctor replied with his usual candour that apart from life-threatening epilepsy and complications derived from scoliosis and feeding problems (none of which are an issue for Seth certainly at the moment) Seth had a good 3 or 4 decades life expectancy. Craig didn't really react to this because, given his pessimistic outlook, this was initially good news. However, as I have been worrying about how Seth was going to cope after we were long gone and he was old and grey it came as quite a shock. 

Given that many of Seth's peers have a life expectancy in single figures, knowing that Seth should live into his 40s is perhaps something I should be grateful for. Well I'm not. It brought back all the feelings of grief I felt when we began coming to terms with Seth's additional needs and I've been struggling with it all week. It didn't help that last week it was confirmed that I'm well into the menopause which not only makes me feel very old (I'm only 41!!!) but banishes any vestiges of hope of getting pregnant again.

However, I'm beginning to feel more pragmatic about it; none of us know what will happen for any of us. My brother died when he was 16 from a heart condition that no-one knew he had so I realise that life can be taken at any time. The older Seth gets without his epilepsy developing into anything more serious, the less likely it will happen. & whilst he does hunch over his posture and movement is improving so that his spine may continue to develop correctly. The health risks usually associated with a child with brain damage to the extent Seth has it simply may not be applicable. He has always had such a robust immune system and rarely has anything worse than a cold. It's like when I had to reapply for Disability Living Allowance last month. A clinical description of Seth bares no resemblance to the boy I see every day.

Plus much as Seth's consultant is a very experienced and caring man I've never taken his expectations for Seth with more than a pinch of salt, deciding instead that we'll carve our own way. So I don't see why I should start now. It's more important to take each day as it comes rather than worry about what the future may bring.

And here is exhibit A, rare photos of Seth trampolining: