Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

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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