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 Birthday Boy

My blog photo for H's second birthday
This time last year I was preparing to celebrate Little H’s second birthday.  The thought of which filled me with a strange mix of emotions.  I was terrified for his future but felt lucky he was still with us;  I was acutely aware of how many times we could have lost him.  I was proud of his achievements but saddened by the ever growing gap between where he was and where he ‘should’ be. 

This year things are different.  Very very different.  And yet in many ways, not that different at all. Little H is still profoundly disabled.  He always will be.  But I think perhaps I am more at peace with that now.  In some respects, the burden of striving for the unattainable has been lifted and I can take genuine pleasure and delight in the achievements and accomplishments he makes.  Of late there have been many, most noticeably and most heart warming is the beautiful chuckling sound he makes when I blow raspberries on his cheeks or tickle his toes.  To be able to elicit such a definite response fills me with such joy.  A tiny tiny step to most but a huge milestone for us.  I feel lucky to see and appreciate it as such.  H is turning to sounds more and smiling more often in recognition.  His eye contact, although fleeting, is becoming more frequent and he looks more to our faces now than ever before.  He is using his hands to explore objects with less support and is making more sounds, for pleasure, to object and to interact.  His Conductive Education classes are going well, which is a huge step – it’s not that long ago I was considering pulling him out of them as all he did was cry and sleep throughout them, but now he remains awake for the whole session and works hard.  He really does work hard at sitting and rolling and crawling – all with support of course – but he is no longer objecting like he used to and is now participating more actively.  He’s even trying to make sounds into the microphone at the start of each session which is lovely, if a little frustrating, to watch as he moves his mouth in a concentrated effort to force a sound out.  Occasionally he manages, but it’s more the effort that he is putting in that makes me so so proud of him.

His health has improved dramatically too.  A year on the ketogenic diet and the seizures that controlled our lives last year are a thing of the past.  They are still a risk of course, as we were reminded recently by their unexpected return, but as long as they don’t return with the frequency and ferocity of the past then I am pleased to confirm the ketogenic diet has been a success.  The most recent setback I have put down to acute illness and a timely reminder not to be too complacent, to remain vigilant and to continue using the SATs monitor at night.  The move from the NG tube to the gastrostomy in June and then the mini button in October has been a resounding success too with no obvious complications except for perhaps an increase in the severity of his reflux which has been mostly controlled with the re-introduction of omeprazole and gaviscon and careful positioning at night.  His new fancy hospital style bed and his move to a big boy bedroom of his own has ensured Mr. M and I get much better night’s sleep and although H continues to wake regularly at night, he is less unsettled and generally happy to play quietly with his hands until he falls back to sleep some 2-3 hours later.  H had his tonsils and adenoids removed in October as well which has eliminated the need for overnight oxygen and has improved the overall quality of his sleep and in turn his levels of alertness during the day.

This past year has seen dramatic changes in H and in me.  His health has improved so much and his character is starting to shine through.  I am truly honoured to have such an amazing little boy (two little boys in fact) in my life.  In three short years H has been through so much and taught me so much.  I am privileged to have him as my son.  I hope you’ll all join me in wishing my beautiful, brave little man a happy third birthday and may he (and we) be blessed with many more birthdays to come.  


  1. A very Happy Birthday to H xx A lovely post full of posiive attitude, H has the best Birthday Present ever..his family.

  2. A very Happy Birthday to H xx A lovely post full of posiive attitude, H has the best Birthday Present ever..his family.

  3. Happy, happy birthday H, may you have many more and continue to surprise and delight your family :D

  4. Thanks Anne, that's very kind. Blue sky- I have no doubt any more that he will continue to surprise and amaze us. Thank you both for your kind birthday wishes. Xxx


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