When I think back to 2009 when William was born it is all a bit of a blur, the staff whisking me into theatre for an emergency c section, my baby being taken to special care, the doctors telling us he had brain damage, being moved to other hospitals, different wards and eventually being discharged.
Thinking the worst was over only for it to all start again when we met different doctors, were given different diagnosis, different opinions from multiple therapists who gave us different predictions for the future.
William is now 8 and life has settled down a lot, or maybe it’s just become our normal? I’m not really sure?
I often think back to day one and all the days after that which led me to where I am now and wonder if there is anything I would tell myself as reassurance or advice if I could go back in time. Is there anything I wish I had known back then that would have made the first months or years easier?
And yes there are a few things. Maybe they will help you or someone you know who is at the beginning of the roller coaster ride that you find yourself on when your baby is born with a disability:
1) The doctors and professionals aren’t always right. They have no crystal ball and they can’t tell the future.
We were told so many different things by different professionals and while some of them have been correct, many weren’t.
We were told that our baby’s vision was so impaired he “wouldn’t be able to tell the difference between us and a stranger”, those were the heart breaking words we were given by a doctor who specialises in sight at Great Ormond Street Hospital.
We were devastated as you can imagine. But William was under 1 then, he’d suffered a traumatic birth injury and his brain hadn’t fully developed so we were hopeful that the doctor was wrong.
And he was.
William does have visual impairment and wears glasses to help, but he can see a lot, he recognises people and loves to look at books and watch the TV.
We were told he wouldn’t be able to understand us, but he understands more than anyone gives him credit for and we often catch him laughing at a joke on The Simpsons or listening to the latest gossip and laughing at something funny. His school report this year says he has a good understanding of language proving yet another person wrong!
We were advised not to bother with certain therapies as they wouldn’t help, luckily we ignored them and they certainly did help!
So, I would certainly tell myself, and anyone else at the beginning of their ‘journey’ that you should listen to the professionals, but take their predictions and advice with a pinch of salt.
You know your child better than any of them do, you know what they are capable of and what they can or cannot do, you know when to push therapies or try new things and when to stop if it’s not working. You are the decision maker as far as your child goes, so stand up to them if you disagree.
2) Surround yourself with people who ‘get it’.
I was lucky, I met a couple of other Mums with disabled children when William was quite little but it wasn’t soon enough really.
Its only when you find families going through similar experiences as you are that you realise how much you need them.
I had plenty of friends when William was born and they were amazing and really supportive but try as they might, they didn’t really ‘get it’ and it’s very difficult to know how much information they really want to hear, you find yourself telling friends “he’s fine” when they ask because you don’t want the conversation to simply be about your life and your problems.
Trouble is they then think he is fine, as I found out when one friend told me they were so glad to hear William was better now!
Over the years, I have ‘gathered’ a nice circle of friends who have children with a variety of disabilities or medical conditions, we support each other and talk about our kids, therapies, medications etc, we offer advice when it’s asked for and shut up when it’s not, we get it. I call them the SuperMums!
But we don’t just talk about our kids! These friends are friends for life because although our kids were the reason we met, we are now real friends, friends who go to concerts together, go on holidays together, meet for coffee, get drunk occasionally and know we can rant to each other when we need to. Our husbands know each other, we go to the same groups, our kids go to school together, we support each other when one of us ends up in hospital with our child.
We have shared and supported each through births, deaths, engagements, weddings, divorce, heartbreak and romance. We've been there for each other no matter what time of day or night when we were dealing with seizures or sickness, we’ve supported each other through hospital stays and diagnosis and we've shared our delights and excitement when our children have done something new, no matter how small.
If I could go back to the start, I’d tell myself to find these people sooner.
I’d ask my paediatrician, therapists or health visitor to introduce me to other families in my area.
I’d also find some Facebook groups to get support from on a national scale, I know I’d also find local people from them too and as much as I know I would hate it I would make myself get out and go to a support group. I know now that I would have been will be welcomed with open arms by families who get it if I had done.
3) Accept that life isn’t what you were expecting but that it doesn’t really matter.
I spent far too long wishing things were different. Comparing my life to my friends, comparing William to their babies and wondering why this happened to us.
Then I realised that it didn’t happen to ‘us’, it happened to him and I needed to be the best Mum I could be to help him to get through his life and enjoy it as much as possible.
Being envious of other people’s situations is depressing and draining and having a disabled child is tiring enough without adding that!
I’d tell myself that life may not be what I expected but it will still be brilliant, as hard as that may seem at the beginning.
I’d love to tell myself that it doesn’t really matter that William isn’t like other children because he wouldn’t have been like everyone else anyway, he would have been William regardless.
I’d tell myself that I’ll be grateful when he’s bigger and I see friends posting photos of themselves in the rain watching a football match when I’m snuggled up in the warm on the sofa having cuddles. And I'd be glad that I won’t have to deal with tantrums or be subjected to kid’s TV programmes.
I’d tell myself that if I look really hard there really will be some silver linings however dark the cloud may seem right now.
What would you tell yourself if you could go back to day one? Leave me a comment, I'd love to know.
A version of this was originally published on the Firefly Community website