To my sad, grieving, just-past diagnosis self,
Life feels like a big black hole right now. You have fallen into the dark abyss you have been fearing for three months, ever since your sweet boy was born not breathing and the doctors hinted he might emerge with cerebral palsy.
You hoped for a miracle, but as more and more people shared their ‘miraculous recovery’ stories, the reality set in. There are disabled children in the world. Not everyone bounces back against all odds. Not everyone gets that happy ending.
You won’t get that happy ending. Not in the way you imagine, anyway.
Grief is natural. By crying over the direction your life has gone and all the ways it’s going to be different from your dreams, you are not betraying your child. It’s true: he won’t be the person you imagined and he won’t have the life you dreamed of for him. It’s OK to feel sad for this. The park is where you go to walk around and escape the crying but it’s also where you grieve deeply. As you sit watching the other children play, it’s OK to feel sad for the things he will never do like chase the pigeons, splash in the paddling pool, beg for one more turn on the slide, scoot away too fast down the slope, join the junior football clubs. Just remember that it’s you you’re actually are feeling sad for. He will never know about the joys of these things, but neither will he ever realise what he’s missed. You need to mourn what you thought he would do, so that you can make space to accept the things he can.
At this moment, it feels like anything good has been snatched away to be replaced by illness and hardship and difficulty. A life spent in hospitals, answering questions, feeling patronised and dismissed by therapists and doctors. Instead of baby groups and soft play, you have physio groups and Portage. You need to see OT, speech and language, neurology, neonatal paediatricians, the tone clinic, the seating reps… It makes you anxious having all these appointments and every single one makes you worry about his progress. You see the worried looks on all the professionals’ faces. You’ll look for signs of seizures and measure his head obsessively to see if it’s growing. Is his brain developing? Can you still prove them wrong?
You can’t escape the predictions but life will not be gloomy.
You won’t change that diagnosis but you will stop thinking about it. You’ll see the boy, not the conditions and long list of missed milestones and ‘can’t dos’. You will get your life back. You won’t have so many appointments forever and you won’t spend that much time in hospital. It won’t be sad and hard forever. You will grieve and you will heal.
In time you’ll choose a therapy path that works for you and gain the courage to step back from anything that bring more stress than value to you both. You’ll accept that all the milestones mean nothing. He’s going to miss every one so there’s no point obsessing. His head and brain will grow or not grow and worrying won’t change that. You’ll learn to stand up for him and for yourself. You know him best and you’ll realise that often the experts are guessing as much as you are.
You don’t feel like the ‘right person’ for this job, this kind of parenting. There is no ‘right’ person. Like every parent, you learn as you go along. You’ll do your best and that’s good enough. You’ll love him so much. You’ll spend years rocking him to sleep and going to him many times a night. You’ll spend hours cuddling and comforting and doing your best to ease his pain or figure out what’s making him cry. You won’t always get it right, but you will make him feel safe and loved and that’s what counts.
The news that once brought you to your knees will not have the same power in years to come. It’s true, he’ll never walk or talk but that’s not the terrible thing you think it is now. You won’t even think about it most of the time. You’ll grieve all over again at every first – first wheelchair, first emergency hospital admission, first hoist – but one day you’ll actually be excited about new equipment. You’ll celebrate finding a chair that supports him properly or a piece of equipment that makes life easier. These are your milestones now and they are just as worthy as first steps and first words.
Right now, it breaks your heart to think he’ll never call you mum or tell you he loves you, but in time you’ll realise you don’t need words for that. He will make his feelings clearly known. You will understand the noises he makes as if they were words, decipher his cries and be able to react to the smallest nuance in his facial expressions. You’ll see the love in his eyes. The excitement he shows when he sees you or hears your voice. You will be blessed with giggles and chuckles and screams of laughter.
Disability won’t always be his defining characteristic. It’s not the most interesting thing about him. It’s not the most interesting thing about any person with a disability. People won’t always realise that, but as long as the ones that count do, you’ll all be OK.