I recently saw an article on this website about being the grandparent of a disabled child and it made me realize that I was probably not the only grandparent who regularly visits this website.
When my daughter Natalie had her own daughter, Isabella, just over 4 years ago, the fact that Isabella was 3 weeks early and only weighed 5lb 3ozs did set off alarm bells. The first time I held her at 1-day-old she seemed so tiny, and I remember thinking that she looked as though she was shocked to be here. I also remember her turning her head towards the sound of her daddy dropping something upstairs and thinking ‘Well at least she can hear’.
Over the coming months, whenever I had a doubt about Isabella’s progress I stifled it.
The alternative to my daughter having a ‘normal healthy child’ was just too much to bare. Occasionally Natalie would ask if I thought Bella was OK and I invariably said ‘They all progress at different ages, she was 3 weeks early, she’s fine!’ I felt as though I had to protect my daughter from even thinking the worst.
However, over the months Bella’s lack of progress became more noticeable and eventually she was diagnosed with Cerebral Palsy. I did what everyone does these days and looked it up on the internet.
Then I cried, I cried lots!
I cried for my beautiful granddaughter and all the things she will never be able to do and I cried for my beautiful daughter and huge difficulties that were ahead of her and her husband.
I don’t cry so much nowadays (it’s not a very helpful activity) but I do find that my emotions concerning Bella are still very close to the surface. I have had other horrible things happen during my life, I went through divorce and have lost a baby at birth, loved ones have died but I have found that, with time, the pain of these recedes to the back of the mind whereas, at the moment, as Bella gets older new sadnesses seem to appear.
For instance, when I was walking with her and her brother a few weeks ago we found some newly fallen conkers. Her brother excitedly ran around collecting some. I, obviously, collected some for Bella to hold in her wheelchair and she pointed ones out that I had missed, but inside I was breaking up thinking ‘She’ll never know the joys off wading through the leaves to reveal hidden shiny conkers’.
My biggest concern, though, is that as Bella gets older and bigger, I am also getting older - and weaker!
I can only just pick up her wheelchair and get it into the back of the car now, what about in 5 years’ time? How long will I be able to help her onto the toilet, lift her into the bath? At the moment she and her brother regularly come to stay and we have great fun! I can carry her down the stairs which are very steep and too dangerous for her to come down by herself, how long will I be able to do that for?
In the same way that my daughter wants to help her daughter get the very best out of the life she has been dealt, I want to help my daughter, I’m not a particularly old grandma but I do wish I was 10 years younger!
If your child has a diagnosis of Cerebral Palsy what level of the GMFCS are they?