What happens when the adorable baby surrounded by hope grows up?

Yesterday, I read a bluntly honest article about this very question. This article, written by Victoria Smith, highlighted the international support surrounding baby Charlie Gard in the UK (who has now sadly passed on) and it addressed what many of us with older disabled children experience. Without holding back, readers like myself were taken through the range of emotions faced when community support disappears – as it inevitably does – once our disabled, medically fragile children are no longer babies that are surrounded by hope.

So what happens when the adorable baby surrounded by hope grows up?

Well, the first step to do in answering that very important question is to read the article I’ve just mentioned. In my opinion, it speaks volumes. In fact, when I shared the article on my social media accounts, I had a number of fellow special needs parents chime in…

“Sadly once our kids get past that cute baby stage it’s almost impossible to engage the type of publicity little Charlie got. Also the possibility of a CURE engages interest. Maintenance of comfort and wellbeing does not attract the public interest to any great degree. I would say to people not to throw in the towel on trying but over the 37 years of being a carer I can see this a hard slog to get the attention for a child or adult who has little chance of ‘PROGRESS’ ” – Mother of R, age 38

“Honest article.”

“A sad fact but a true one”

And it is a sad fact, and a true fact, that families like mine are very often left to struggle alone in the years to come as our disabled child ages. Our local community (forget about the international community), even our own families and friends, disappear as quickly as they came…as quickly as the hope which once surrounded our precious child disappeared.

We are then often faced with isolation and loneliness because not only has the hope of a miraculous cure or recovery faded away, but so too has our once passionate support network.

We must ask and discuss WHY this happens.

Here is my take on the subject:

Babies represent life, full of hope and endless possibility. People across the world, from all backgrounds, can relate to this all encompassing, life-affirming symbolism of the hope for the future in seeing a lovely new born babe. When a baby happens to be seriously ill, as was little Charlie Gard, people will channel that hopeful energy into support, financial or otherwise, to (subconsciously?) do all they can for that hopeful belief in the future to not fade away…to not die…because that would mean facing our own inevitable mortality.

Having said that, there is absolutely nothing wrong with this level of support. In fact, it is part of what makes humanity great! It is essential for the greater good.

An entire community, country, even world, will get behind the fight for the care of a cute little baby, but when that baby grows over the years into a severely disabled young adult, then adult, where are all the people running to help that child and the parents? They aren’t there. There was no miraculous cure, no sudden healing. The hope of the future which they held onto is no longer there for the public, the community, the extended family and friends…and so they stop fighting for the care, they stop supporting the “cause” and they all too often disappear altogether from the lives of the family.

Let our voices as parents of disabled children with profound care needs be heard:

• Don’t give up on our children, no matter their age.
• Don’t ignore them. Don’t write them off as no longer being a “worthy cause” to invest time, energy or even funds, because not only were they never a “cause”, but because they were and always will be a beautiful soul dependent upon others to care.
• Don’t forget us, the parents, who are isolated as we try to hold on to hope –  a hope that is now transformed into simply hoping to provide the best quality of life possible for our fragile child…that child who was once the adored baby surrounded by so much hope.