The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

The 'H' Word

Hospice:

Acorn's Children's Hospice
Established in 1988, Acorns Children's Hospice Trust is a registered charity offering a network of care for life limited and life threatened children and young people, and their families, across the heart of England. These children and young people are not expected to reach adulthood and require specialist care 24 hours a day, 7 days a week. Acorns is currently supporting over 630 children and more than 880 families, including those who are bereaved.

I left Little H on his own there today for the first time...


Four hours in total I will be away. 

He will have time in the hydro pool and the sensory room. His nurse is lovely. She has had him before and I know she will look after him. I feel quite proud of myself for leaving him.  I know it is in his best interests - he needs to get used to spending time with other people and the time in the pool and sensory room will be fun. It is good for me - I need to learn to trust that others can take care of him and give myself a bit of 'me' time. I know it is a 'good thing'. 

I have left him for a few hours recently too; with his complex carers at a sensory play group. So really this is no big deal. It really shouldn't be. There are nurses there. They deal with far more complex children than H. Much sicker ones too...


I left him easily enough. Managed to wander round some local shops and grab a coffee and a muffin. But then it hit me. And tears stung my eyes. And a hard lump formed in my throat. And my hands shook.  And my stomach squirmed and churned so much I had to concentrate on not being sick. 

Spending time away from Little H isn't the problem. Leaving him in the capable hands of a team of nurses isn't what's upsetting.  Its not the leaving him itself that is difficult.


I have just realised I have left my son at a hospice.

A Hospice.      And all that implies.

My son.

And it is breaking my heart.

Comments

  1. My heart is breaking for you, but please try not to focus on the implications - if he is happy and well-cared for there, then that is actually great. And your experiences have had me considering approaching Ireland's only children's hospice to see whether they would take Smiley since I am not that happy with her existing respite. And it is hard to put your child in respite at first but you do need it, I've had no break at all now for 5 weeks and I am completely exhausted. Still 2 weeks until school starts back xxx

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  2. Thank you Blue Sky. Yes, the main thing is that he is happy and well cared for and that I trust them. 5 weeks without a break is hard - I'm not surprised your exhausted. Might well be worth looking at the hospice there too, especially if Smiley's current respite isn't ideal. I'm surprised there is only one children's hospice in the whole of Ireland though - that's quite shocking!

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  3. Welling up here. Your description of doing normal things then the realisation hitting you like a truck struck such a chord. Hugs xxx

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  4. Thank you for the hugs Jane - always appreciated. xxx

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