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…

Support - a Special Saturday Post

One of the things I love about the #specialSaturday posts is that we’re given an idea to run with and that everyone then goes on to interpret that differently.  By Saturday evening, there’s a wealth of posts all based loosely around the same topic but all coming from different angles and perspectives.

This week’s topic is “support” and I pondered how to approach it.  I have previously discussed how I had begun to feel isolated from many of my ‘real’ friends and the wonderful emotional support I had received from my ‘online friends’ through facebook andtwitter.  That still rings true today and I have a growing community of like minded people on the internet, who provide the support and understanding I need.  Thank you all very much – you know who you are!

But since I’ve ‘been there, done that’ already, I thought I’d approach the concept of support from a different angle.  I was genuinely interested to read about all the professional’s involved in Sam’s care (@Trickycustomer)  so I thought I’d compile my own list.

So here are all the medical/educational/and God-Knows-what else people involved in supporting us as a family and catering for H’s care and well being...

~    Consultant Community Paediatrician: pretty much oversees all of H’s care.  She is a lovely lovely lady, who always returns my calls and responds to my emails (yes I realise I am VERY lucky in that respect).
~       Consultant Paediatric Immunologist: A man who could tell me the sky was red and I’d believe him; he speaks with such authority and conviction. He originally started seeing us as H’s white blood cell count was unusually high and he had repeated infections, for which H now has daily antibiotics. He kept us on, without any real need to, as he does the ward rounds at the hospital and we spend a lot of time there, just to oversee that side of H’s care. (And I like to think it’s because he quite likes us too).
~        Consultant Paediatric Neurologist: For the epilepsy
~     Consultant Clinical Geneticist: They’ve still no idea but we keep going back every so often to be told that!
~        Physiotherapist
~        Occupational Therapist
~        Early Support Teacher: similar to Portage I think.
~     Sensory Support Teacher: For his visual impairment. She was able to explain all the gobbledigook from the hospital about the results of his eye tests (basically he’s blind but it might improve a bit because it’s his brain and not his eyes that are the problem).
~     Speech and Language Therapist: for his feeding (I know – I never knew they did that either!)
~        Ophthalmologist: Eyes
~        Audiologist: Ears
~     Palliative Care Nurse: lovely wonderful nurse who sorts everything out for us, but has basically been assigned to us because they don’t expect H to reach adulthood.
~      Early Years Practitioner: Before H’s seizures got so severe, he used to have a short break session with these. It was a bit of a drive though so when I stopped leaving the house with him, she organised that she would occasionally do a short break in the house instead! 
~      Community Team worker: From our local hospice. Another lovely lady who took us out for lunch this week to meet other mum’s with life limited/threatened children.  Keeps trying to encourage me to use the hospice for full respite – an overnight stay, but I’ve chickened out so far.
~   Educational Psychologist: starting the statementing process. Fun fun fun – looking forward to the obligatory battle with the LEA.
~      Dietician: Sorting out his tube feeding.  Swapping to a new one soon as we’ll be starting the ketogenic diet!!! Woo hoo (No doubt more about this to follow).
~      Conductor: new thing I’m trying with the National Institute of ConductiveEducation – let’s see if we can get this lazy bones rolling/sitting/standing... walking even??? Who knows?
~        Health visitor: doesn’t seem to do a lot except ask questions and then leave so I have to tell the same old story to the next one that comes along.
~    Complex Care Nurse(s): exciting development – we’ve been assigned a nurse for four hours a week to have H! Haven’t met her/him/them yet so will let you know how it goes.
~        Respite Carer: bless him, lovely man, works with very complex kids but decided H was a bit too scary! He takes me to appointments so that I can look after H in the car while he drives.
~        Homestart Volunteer: another new one – seems lovely, someone to help me get out of the house with the two boys. Basically I can go to the supermarket and if H stops breathing I can concentrate on sorting that out rather than worrying about Cheeky legging it out the door and on to the main road!  An extra pair of hands.

As you can imagine, keeping up with all the appointments and telephone calls is a nightmare.  I could do with adding a secretary to that list!  I count myself lucky that we have such a high level of support though – I know many children, particularly those like H who remain undiagnosed, have difficulty accessing appropriate provision.  Some days our home feels like Piccadilly Circus and there is not a day goes by without a letter from some professional or other, but we have been lucky enough to find a team of people who are great at their jobs and seem to want the best for H.  Without their input and support we wouldn’t be where we are now.


  1. Phew, what an long list. I can see that you are very fortunate to have some really extra special kind hearted people on board to help you and your family.
    Your post was extremely interesting to read, thanks for sharing.

  2. Yes, that is an impressive team, and good to read that you find most of them very supportive and helpful xx

  3. Thanks Di and Blue Sky for reading and commenting. It is a long list and no doubt I have left people out but we are very very lucky that most of the professionals we have come into contact with are very supportive. There's always an exception or two but I do appreciate that we have a strong, understanding and supportive team, I realise that not everyone else is as lucky. .


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