When I started writing about our life with Travis in 2010, he was two years old and I’d never been more miserable, desperate and heartbroken. I was newly married, and our first-born was mentally challenged and physically disabled, and more immediately… he didn’t sleep and he wouldn’t eat.I would wake up each morning and know my future, long-term – our future as a family – was trashed. There’s no other word for it really.
And in the short-term, I had to deal with a baby whose eyes couldn’t focus on my face when I spoke words of love, who didn’t so much as turn his head at the sound of my voice. Who couldn’t walk, who refused to eat anything but yoghurt, custard, and chicken soup… and wouldn’t fall asleep unless I lay with him pressed up against my chest and matched my breath to his, and stayed like that until 1,2am until his eyes finally closed. The insane bills for schooling, specialists, nappies. Our marriage was brittle. Friendships collapsed under the weight of our absence.
When I read some of my earlier posts on this blog, I can see how I tried to use humour to cope. (This is a trait in our family.) I turned Travis into an online hero, with a virtual cape and a name: The Lionheart. And I turned his days into marvelous adventures that made for marvelous reading, and it helped me; it helped us all survive the tragedy of having a special needs child. Then other families with special needs children began getting in touch, telling me how my tell-it-like-it-is writing helped them cope.
Just like that, The Lionheart’s life had meaning. Has meaning. Is meaningful.
Travis is nine years old now, and much has changed since I started writing this blog. Back when he was a baby, we were a 100% special needs family. Travis had special needs, and because he was an only child, his dad and I orientated our entire lifestyle to match Trav’s lifestyle, and by default, all three of us had special needs. Then his first baby brother was born, and Ryan came out “regular”, and we couldn’t be 100% special needs anymore. When a second “regular” baby brother came along, we became a family of FIVE…
…but also a family that’s only 20% special needs now. We’re democratic like that.
It could have gone the other way, easily – that we would have stayed a 100% special needs family even though Travis has two neuro-typical little brothers. I’ve seen it in other families like ours.
Anyway, I just felt like writing something-something early on a Sunday morning, and this is what’s been on my mind. Thoughts of how I used to think of myself as a special needs mom, and now I just think of myself as “mom”. It’s been a healthy shift in mindset and good for Travis as well. He’s adapted to living in a family where his needs aren’t always the guiding light for every decision we make – which restaurant to go to, where to go on holiday, what plans we have over the weekend.
It means he gets to experience life as it is for most children, as opposed to the overanalysed, super-scrutinised, extra-sterilised life he would have lived if we didn’t try for more kids. I’m not suggesting other families with disabled children try for more kids, but I am suggesting that you try for ballpark normality, where you can.