Today I read a heart-breaking plea from another Mum. Her child had just been diagnosed and she was utterly devastated and desperate in equal measure.
No matter how long ago it was, I still remember how it felt on that day in August 2011 when we were told of Sam’s epilepsy diagnosis… fear, grief and heartbreak all rolled into one.
Then I read the comments other special needs mums had already put and I realised once again how similar all our stories are. The diagnosis isn’t actually the important bit, it’s the humans involved that matter and that ultimately shape the future.
Seeing these incredible children, all defying their prognoses is thrilling, inspiring, incredible, but also tinged with pain and sadness because so many are doing so much better than my little man.
Then there are the remarkable kiddos who are fighting so very hard, who have it much worse than my boy and I remember to be grateful for every moment.
When Sam was diagnosed we thought we would find a medication to stop the seizures and our boy would be just fine.
Possibly have some learning issues due to the meds, but otherwise a normal, healthy little boy. As things spiralled out of control and it became obvious this was not going to be the happy ending we had prayed for, we started to doubt ourselves.
I remember holding Sam in the middle of the night, just rocking him gently as he slept peacefully in my arms. I had tears coursing down my face as I was so incredibly terrified that we might lose this precious little bundle before we’d even had the chance to see who he actually was.
There are still moments like that now, even though he’s rather bigger than he was (!), when I just hold him as he sleeps and marvel at how beautiful he is, and at how strong he has become.
Does this look like a sad photo to you? Me neither. At this time, Sam was fighting hard against around 100 seizures every single day. Yes it was heart-breaking to see, but was it always teary? Nah. There was also a lot of silliness, giggling and as you can see here some award-winning smiles.
I can’t say what ‘ok’ will be, but honestly, you’ll be fine. You’ll be amazed at how much joy this life brings… Right now things are too raw and too overwhelming for you to see anything past the next few hours, days… so stop trying. What you do NOW will change their tomorrow… and it’s not just therapy that’s crucial here.
Love, faith in them, and encouragement goes a very very long way too. On paper, Sam’s diagnosis is dire; profound global developmental delay, visual impairment, motor skills of a baby a few months old.
Drug resistant epilepsy, life threatening seizures. Four years ago if I’d known this would be our reality, I’m not sure I’d have been able to hang on; I wasn’t ready to accept it. It sounds so utterly joyless, dark and a world full of grief at what might have been.
He can’t yet crawl, but he can sit with very minimal support like a pro – he recognises himself in a mirror and loves to interact and play…. Not bad for a child who is registered severely visually impaired!
We don’t see Sam as being profoundly disabled; we see him for who he is. A cheeky, happy 4 year old who loves school, swimming, and going out for long walks in the surrounding countryside with Mummy, Daddy and his dog.
So to the Mum of a child newly diagnosed… hang on. You’ve been granted membership to a club no-one wants to join but now you’re here you’ll be welcomed with open arms and more love and support than you could ever have imagined existed.
Your child will amaze, inspire and astonish you with what they achieve; and you will be blessed with a child who will teach you far more than you will teach them.
You will become a fire breathing dragon when you need to in order to ensure that child gets what they need, and then as quickly become the proudest parent alive because your child has done something that the professionals believe would be impossible.
My Sam recently learned how to hold my hand – now he’ll just reach out and grab my arm simply because he wants me to be near him. It is the most magical experience.
Be gentle to yourself, don’t expect to be suddenly ok with the knowledge that your child has more challenges than seems fair… but rest easy in the knowledge that this life is far from all dark. It is full of life, light and love x
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