Last year, as Father’s Day approached, I jotted down some thoughts about my experience of being a Dad to a wonderful little boy who is profoundly disabled.
You can read it here: 10 Things You Didn’t Know About Special Needs Dads
When I read over it at the time, I thought it just sounded like me rambling about things I wanted to get off my chest.
It was with much surprise then, when I got so many comments back from all around the world. It was lovely to see how much it resonated with so many people facing similar issues.
The comments also highlighted just how tough it can be for Dads whose children have special needs and how little support there is for those Dads. As someone much wiser than me once said ‘It’s good to talk’.
I think Dads are much less likely to share their feelings (myself included).
So I thought I’d have a go at some more rambling.
The unanswered questions
I am so lucky to have two wonderful boys; my eldest is now six years old and profoundly disabled. The cause of his disabilities are still unknown, he’s simply classified as having an unknown genetic disorder.
My youngest son is four, thankfully he is unaffected by this disorder and is a typical lovable and mischievous little boy.
Where he differs though, is his amazing and unconditional love for his big brother.
Ever since he has been able to, he has helped his big brother and cared for him in a way that inspires and amazes his mum and I every single day.
As he’s getting older though the questions are starting to come and they’re getting more difficult to answer.
Not always because the questions are harder, just that his need for answers is growing.
Last week we were sitting together, I’d just got home from work and he was watching some TV and telling me about his day at nursery.
Some of the older kids in our street were outside playing football. I could see him watching them and then completely out of the blue he turned and said to me ‘why can’t my brother walk?’ He’s asked this question before, many times, but I think it was just the context of the situation that hit me so hard.
I could see what he was thinking, I’m sure you can all see what he was thinking, you don’t have to be a child psychologist. The longing in his eyes hit me like a speeding train.
The real question is why? That’s one I can’t answer for him, or in truth for myself. I instantly had a feeling of guilt that I was somehow letting him down. I’m his Dad – if I can’t tell him why something has happened, then who can?
There are so many unanswered questions with regards my eldest son.
Will he ever walk?
Will he ever have meaningful communication skills?
Will we ever get a diagnosis for his condition?
What does the future hold?
Who will care for him when my wife and I aren’t able?
The list of questions is endless and it never goes away. I’m in a much better place now. It’s over four years since we were given the devastating news about our son’s condition. No matter how long passes though, the questions are always there and very few are being answered.
The 'what ifs'
Sometimes the most normal of situations can bring all the emotions back to the surface. I say normal, but let’s face it, very little about life with a disabled child passes for what most families class as normal.
We recently got tickets to take the boys to see their first football game. We called ahead just to check on wheelchair access, lucky we did.
It turns out we’d booked the wrong tickets, so we couldn’t bring our oldest boy, at least not in his wheelchair.
It was a health and safety thing, so fair enough; I guess we should have checked before buying the tickets!
Plan B, one of our friends has a little boy the same age as our eldest, so we agreed a kid swap! They’d look after our oldest boy and we would take theirs to see the game.
The ‘What If' moment happened almost straight away.
As we travelled to the ground, I was conscious of all the old emotions rapidly resurfacing.
What if things had been different?
What if our eldest son wasn’t disabled?
This would be the most normal thing in the world. A little brother excitedly holding his big brother’s hand as they started out on a childhood adventure together. I’m sure my youngest was blissfully unaware of all the thoughts rushing through my head but I still worry.
I worry that in his head’s he’s worrying and upset that his big brother can’t come with us and wondering what it would be like to have a normal relationship with his big brother.
Obviously, our eldest boy was not in the least bit annoyed at missing the game; in all honesty it would have probably been a struggle for him.
But as with all things, we fight to keep the normal. What if it was normal all the time?
The void we can’t escape
I’ve spoken to many parents and read loads of articles that describe the sense of loss, the sense of emptiness that you feel as a parent to a child with special needs.
I’ve tried to explain it to other people who aren’t in this position, but I don’t think I’ve ever managed to convey just what it is and I’m not sure if I will manage to now.
‘Void’ – noun – a completely empty space. In lots of ways that word, void, explains how many of us feel on a daily basis. It’s that sense of being robbed of the child you expected, robbed of all of your hopes and dreams.
As my son gets older and time passes, I’m learning to accept his disability.
I suspect it always will be; it’s compounded by the unanswered questions and what if moments. I’m on a mission though, to fill the void as time passes.
Regardless of his problems, my son gives my wife and I so much joy. He brings his own special and unique brand of love into our lives and we’re so lucky to have him.
I saw a quote recently that made so much sense: ‘In the hopes of reaching the moon, men fail to see the flowers that blossom at their feet.’ I’m not sure who said it but I think it sums up really well how I’m trying to cope.
I’m trying to come to terms with his disability and learning to have new dreams. Many people would consider his disability a disaster or a tragedy. In many ways that was me and quite often the questions and the what ifs try to drag me back there.
Slowly and surely though, I’m getting there, I’m learning to accept that it’s not a tragedy, it’s just a different life, one I hadn’t expected, but one that can be so rewarding in so many ways.
To all the Dads
I know everyone’s different and people reading this will be at different stages of their journey. Some will be starting out and struggling to see a way past the tragedy.
Others, I hope, will be on the other side, living their alternative life and filling the void.
Whatever it is for you and wherever you are, I hope you have a super Father’s Day with your son or daughter. You deserve it. Ramble over.
Happy Fathers Day!
The mobility device changing people’s lives worldwideFind out more