Natalie (part one)

“I was married at 20, my husband and I recently celebrated our 30th Wedding anniversary.

We have four children.

We knew something wasn’t right with Thomas, our eldest son, when he wasn’t developing like the other children we knew, he could talk and walk but he had a funny walking gait. Initially we had to fight for everything as Thomas didn’t have a diagnosis, nobody would recognise his condition and we couldn’t get any help. Once he was diagnosed with a rare condition (there were only 52 cases around the world at the time) it was if they had rolled out the red carpet and we had plenty of support. The support allowed us to live as normal a life as possible as Thomas needed full-time care, feeding, showering, dressing and a wheelchair so he could go to school. The condition crippled his body, not his mind, and he slowly lost the ability to talk and walk. Tom did love food, especially puddings, his favourite was chocolate mousse.

Brenna was a surprise package, the youngest of my four children. I had decided we were going to have a home birth and I was going to do it quite differently! You know, when you get to your fourth baby it is all a bit of a breeze really. After having three boys they had to tell me more than once she was a girl. No ‘boys’ hand me downs for her! My husband and I were at odds as he really wanted her tested for the disorder. We didn’t get her tested because for me ignorance was bliss. It became apparent when she couldn’t get herself around the floor anymore that she had the same disorder. Our family became a disabled family with Brenna’s diagnosis, well actually, we were already a disabled family, we just became more disabled. Brenna may not have been able to speak words but her eyes and smile told many a tale! Her eyes and smile were the gateway to her heart and soul! She too, loved food. She particularly loved pavlova.

Two of our four beautiful children had the same genetic disorder and they were going to die early because of it. But the thing is, people saw the disability and they didn’t think they could understand anything but they could. They communicated with their eyes, with their smile, with touch. We all communicated in special non verbal ways and they knew they were well cared for and loved. We all felt their love. Love is an amazing thing.”

-Natalie