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…

Reasons to be cheerful ... 1, 2, 3 ... A Special Saturday Post

This week’s theme for special Saturday is things we are grateful for.  I think it does us all good to every once in a while to consider the positives in our life.  So, in a break from my usual tales of woe and melancholy, I’m attempting a more upbeat post, reflecting on the things in my life that make me happy.



1.     I am truly blessed to have two beautiful, wonderful sons.  Especially considering it was only four years ago I was told I would be unlikely to ever have any children and then told to make the most of my first pregnancy because it was the only one I’d ever had.  Honestly! 

2.    I have a fantastic husband who loves me and I him.  We have been through thick and thin together – the illness and deaths of one parent each, seriously ill siblings, infertility and the subsequent gruelling tests and treatments, the endless tests and investigations we’ve been through with Hugh, Hugh’s diagnosis (or the lack thereof) and the fear and devastation caused by his epilepsy – and yet we can still smile and laugh together.  We don’t get to go out together any more (who on earth would look after Little H for us?) but we are closer than I ever thought possible, bonded by the shared love of our two beautiful boys.

3.   Sean is an amazing child!  I doubt a better big brother for Little H could be found.  With only 14 months between them, things could be so much more difficult if he was any other way.  But he is compassionate, caring and considerate.  Not the typical traits of a ‘terrible two’ year old.  He adapts easily to the changes forced upon him – the sudden ‘sleepovers’ at Granny’s when we’re in hospital again, the cancellation of plans because Hugh is too sick to leave the house again.  He never makes a fuss.  He just accepts that this is the way it is and gets on with.  I thank my lucky stars for him.  Sean is a miracle – the child I was never supposed to have.  Fertility treatment had been stopped because I wasn’t responding.  Scans showed nothing was happening and I was booked in for invasive surgery and further investigations.  After my pre-op, when I’d booked the time off work and geared myself up for the operation, just days before I was admitted to hospital, I took a pregnancy test ‘just in case’.  It was positive and it turned out I was already 8 weeks pregnant!  I still can’t explain it, I’d been having scans!  But he arrived at such a crucial time in my life – my father was dying of lung cancer and this unexpected baby brought a ray of hope to an otherwise very difficult time in all our lives.  Sean kept me going after my dad, his namesake, died just four weeks after his birth.  He was a reason to get up in the morning.  Through the dark and difficult times with Hugh.  Sean has remained my shining light.

4.    I am grateful that Little H came to our family.  When I think of all the other families in the world he might have gone to, I realise how different things could have been.  There are so many horror stories in the news about children abused and neglected by their parents.  I dread to think what would have happened had Hugh gone to a family like that.  I doubt he would be here now.  I know our vigilance and persistence has kept him alive.  I know there are occasions when we have saved his life.  I thank God then, that he came to us and not to someone who couldn’t give him the level of care he needs and deserves.

5.    Following on from that, I am glad that my past experiences have helped me be a better mother to Hugh.  I have worked as a therapist for children with Autism, supported families of children with special needs, and been a teacher in an autistic specific special school, all prior to having children.  The knowledge and skills I gained in these roles has helped to ensure I can access all the support Hugh needs.

6.    I am also grateful that, although it is difficult, I have been able to give up work to care for Hugh at home.  I genuinely don’t know what I would have done had that not been possible.  I can not think of any appropriate childcare that could provide for him and I doubt I would have been able to do a day’s work anyway for worrying about him.  I don’t doubt I would have had a nervous breakdown from the stress of it all.

7.    I have a great family support network.  My mother, father in law, brothers and extended family all do whatever they can to support us.  In particular they all do their best to ensure that Sean doesn’t miss out because his brother is ill.

8.    And last (but not least) I am eternally grateful for the wonderful friends I have met through facebook and twitter.  They have provided immeasurable support and understanding through some very difficult times and have shared and delighted in the successes and achievements along the way.

Comments

  1. What a wonderful post. Little H is indeed very lucky to have such a lovely family around him xx

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  2. Lovely upbeat post. And don't give up hope about getting your life back: I now have a couple of adult babysitters who have experience with children with special needs and with their help I get the occasional night out x

    ReplyDelete

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