Living with Cerebral Palsy 🍋🍋

Thursday, 17 September 2009

Hospital playgroup

...Found Playgroup hard today at the hospital. Elin and four beautiful boys who all had downs syndrome. Our c.p partner in crime wasn't there. Felt very isolated as the other Mum's discussed how the downs had affected their babies, I could not join in. All the babies were similar in age to Elin. I watched them pick up toys, laugh, sit up, look at things properly , gurgle, chew things. I feel jealous as I watch Elin on the mat, not focusing and swiping her limbs around and choking on her feed not understanding. Hate myself for feeling like this, it's a crap way to feel. It's defeatist. Watched as the other Mum's wondered what was wrong with Elin, not being able to put their finger on it, until one asks. So I tell her and she dosen't know how I cope, she says. It's meant kindly but it makes me feel worse. Crap, crap, crap. The therapists are jolly as ever and I want to pick Elin up and come back to the bubble of our house where Elin is just Elin and nobody pities her or see's how she is 'handling today'. So I do. I don't think hospital playgroup is for us.
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3 comments

  1. Much love Ruth...you have a beautiful daughter, and a whole lot of love. There's no room for people who pity you darling. Not when you have such a beautiful daughter and loving family xxx

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  2. You'll come across loads of things that will desperately want to try and help, but not all of them will work. From what you've said - no this doesn't sound like it's for you and Elin.

    If anything, I'd guess that what you need is some sort of support network where Elin can interact with other children who have CP and (possibly more importantly) you can interact in person with other mothers who have children that have similar needs. I know there are internet support groups and the like, but none of those are anywhere *near* as good as a cup of tea, a hug and a much needed tissue from someone who really and genuinely understands what sort of things you (and Elin) are going through. Is there anything like that in the local area?

    And if not ... could you set one up?

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  3. Awww thanks, yes that would be a good idea. The Hospital put me in touch with another Mum whose son is just like Elin and that is a great support. Will look into setting up something with more people, possibly with a wider area coverage. Am lucky to have a lot of friends and family support too,though. Just sometimes it all gets a bit much I guess ;-)

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