I am not sure what my life looks like from the outside looking in. In many ways, I don’t care, because people’s perception is just that; perception. And after 41 years of life, I realise that perception is not reality.
Since having a child with Down Syndrome, I have become increasingly bored of a recurrent conversation people seem to want to have with me. The conversation usually begins with how incredible I am or how incredible Tim and I are for being such good parents to Chiara.
Sometimes people say things like they “don’t think they would be able to do what we do,” or we have “so much on our plate,” they don’t know how we do it.
Well here’s the deal…We have A LOT on our plate, but what people don’t seem to realise is that we have a HUGE FUCKING PLATE, so nothing is spilling off, believe me. It can all fit on the plate, so enough about the plate.
The fact is, that I LOVE having a child with Down Syndrome, so I don’t know what the big deal is. I love watching every mile stone accomplished so slowly and methodically, that we celebrate with true joy and enthusiasm. Nothing is taken for granted.
I love that most of the parents I meet are really cool and don’t take life for granted, because they too, have a child with a disability. I love that I don’t have to weed through the asshole parents to find a coffee klatch worth going to. I FELL into the best coffee klatch there is! I had the fortunate opportunity to meet people who want to make the world a better place. Not just people who want to compare what clothing their kids are wearing, what school they got into, or who has the more supreme pram. No, I got the down to earth people, and I didn’t even have to try.
We have the perfect family. What makes us perfect is one pure and simple thing: Love. We love each other. We love each other for every morsel that makes each of us unique. We love each other for the good, the bad, the fast, and the slow. LOVE.
I have been fortunate enough along my journey with MS, to meet some really wonderful people. Every week, sometimes, every day, I get a letter, an email, a tweet, a something…from someone with MS who read my book.
I wanted to share with you how these letters make me feel…
I remember so well….it was almost 10 years ago, when I searched the Internet in the middle of the night, looking for anything that I could relate to. I pored over many books, and did not relate to any of them. I felt alone in that way.
I used to wonder, ‘Is there anyone else who is positive in attitude, but who does stop to say WHAT THE FUCK IS HAPPENING?’
I remember that feeling of the unknown ahead of me. Did I have MS? Did I have a brain tumour? whatever it was, I felt like I was staring ahead into the abyss, and it was going to have me whether I liked it or not.
So when I read letters, especially from people newly diagnosed, I am touched. I am touched that people take the time to write me. They take the time to thank me, and tell me why the book helped them.
I cry pretty much every time. It means so much to me. These letters always stop me in my tracks, and I do try to respond to each and every one.
I wish that there was no one to write me, because no one else had MS. I always feel a little heart-broken that people are going through this too, and that every day, there are so many more people diagnosed.
Multiple sclerosis is the most “bizarre” disease. It never ceases to amaze and infuriate me at the same time. But if there is a bright side, (and there always is), it is that I am amongst other warriors who are not going to lay down their swords for this fucker.