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…

Appreciating what we've got

This isn’t’ the life I expected.  This isn’t the life I had planned.  When I had my two boys just 13 months apart, I had visions of them growing up to be close friends, playing football in the garden, having rough and tumble fights.  I didn’t expect things to turn out like this.

I have always read posts by special needs parents saying ‘I wouldn’t change them for the world’ with a degree of scepticism.  Really?  You wouldn’t change them/your situation?  I often thought it was something people claimed but never really felt.  I’m not quite there yet but I am starting to see the light at the end of this long dark tunnel, I’ve been dragging myself through for the past two years.  I’d take away H’s epilepsy in a heartbeat, don’t get me wrong.  But I’m starting to count my blessings a bit more.  And what’s enlightening is I do feel happy and overjoyed and blessed and I’m not just saying it because I think it’s what  I should say or what people want to hear.

This was the post from @tricy_customer that first got me thinking.  And while it played on my mind all week, I attended an appointment with a consultant of H’s who said;

“Well, none of us ever expected him to make it this far!” 

Sounds a bit harsh I know.  But rather than reduce me to tears, I felt immensely proud of all that H has achieved and against the odds is still here, still smiling and still making progress.  He’s not and never will be your typical child.  But he’ll be two in a couple of weeks and his Consultants didn’t expect that, least of all that he’d be so strong and healthy.  He gets ill of course; sometimes seriously so, and yes, his epilepsy is still life threatening, but that comment opened my eyes to a truth: I have two beautiful, wonderful boys and I am immensely proud of them both.  So proud I could burst.

I am very very lucky.  It’s not so long ago I was told I would never have any children.  Would I rather be here with Little H and all the challenges he presents with us, or back there with all the invasive tests and treatments, praying each month that it was our turn at last?  Do I really need to answer that? 

I watched some of the other Mums and babies at Molly Music this week and I realised that they just didn’t appreciate what they had.  Sorry, that sounds quite scathing and I don’t mean it quite like that.  It’s just I sat there delighted as Little H smiled and felt such joy and pride that he had responded to the music. Genuine heartfelt joy.  You can’t truly appreciate something so simple if you’ve never realised that it is in fact a huge accomplishment.  With Cheeky, I looked towards the next milestone, wondering when he’d make the move from pulling himself up on the seat to letting go and walking.  Did I ever truly appreciate the fact that he had managed to pull himself up to standing in the first place?  I took such achievements for granted.  But now, a smile or a head turned in the direction of a sound, all of these things are huge achievements and I feel blessed to witness them, I feel proud when H achieves them.  I feel blessed that I really can and do take pride in the smallest of things.  I feel lucky.

It is a wonderful feeling.  I feel released almost from the burden I had been carrying. It’s not to say I don’t worry about the future or that I won’t feel sad about the things H won’t be able to do but I feel genuine pleasure in things he can do.  I feel that perhaps now, I am starting to appreciate my little boy for the wonderful, beautiful amazing, strong, smiley, happy delightful little child that he is.  Finally I can see past the challenges and the diagnoses and the medical complexities and just appreciate what I have.


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