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The Crystal Ball of Hope

The Crystal Ball of Hope

His diagnosis of quadriplegic cerebral palsy GMFCS V, didn’t really mean much to us in the early days.

We’d never heard of cerebral palsy, had no idea what the GMFCS ranking meant and were really feeling our way in the dark.

Medical professionals were so busy trying to manage our expectations of what William wouldn’t be able to do, they forgot to focus on helping him to learn the skills he might have been able to do.

We were always given doom and gloom predictions about his future “he’ll never walk” “he won’t be able to sit on his own”, “he won’t be able to tell the difference between you and a neighbour”.

Instead of focussing on the things he might be able to do and helping him to make sense of those.

It was as if these, so called, professionals had some sort of crystal ball which wasn’t functioning quite right.

Had they bothered to try the old trick of turning it on and off again perhaps it might have been able to provide us with some small glimmers of hope in those darkest days.

Maybe that crystal ball would have told us “He will be the happiest child you’ll ever meet and will have the most infectious laugh you ever heard” and “He will enjoy sitting in his wheelchair people watching and snooping on stranger’s conversations.”

If it had, perhaps those first few years might have been a little different.

Of course, it is important to be realistic and not provide false hope but is false hope worse than no hope?

Realistic hope back then would have managed our expectations whilst giving us a sense of hope for the future.

Some of those predictions were of course right.  William can’t walk, and he needs support to sit up, but are those two skills really all that important?

They were way off with the prediction about his vision though!  He wears glasses, but his vision is low on the list of problems he has to deal with and his face will light up as soon as someone he knows walks into the room.  He has no trouble recognising people!

William may not be like other little boys his age but that doesn’t mean life is all doom and gloom.  Far from it in fact!  We laugh and enjoy ourselves just like other families.

William was a sheep in the school nativity this year and he got so excited about Christmas and all the presents Santa brought.

Life is different, we have to plan things a little more and our house is full of equipment instead of toys but is that really so bad?

We are now supported by an incredible team of experts who focus on the ‘cans’ instead of the ‘can nots’ and will do whatever they can to make sure William lives his life to the full.

I hope the crystal balls that the medical professionals rely on so heavily have been upgraded by now, almost 9 years later, so that families like mine aren’t stripped of all hope for the future simply because they are afraid of giving false hopes.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Laura Moore

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Mum to William, the coolest kid in town (who happens to have quadraplegic cerebral palsy). Campaigner, blogger, baker and general fixer.

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