My daughter is the most remarkable person I know. I don’t say this simply because she’s my daughter, but say it completely without bias and sincerely believe that people should strive to be more like her.
She’s one of those rare kids that has an inner drive that most of us desire, but few have; that has helped her achieve so many life-changing accomplishments, that she may not have even considered, but just thought “I’m going to try for that”.
To briefly condense into a few sentences, my daughter’s condition, she has 2q23.1 microdeletion syndrome, which is a rare genetic condition caused by a missing piece of one of the body’s 46 chromosomes. With her particular condition, she is missing a section on band 2q23.1 that is essentially an address. The 2 is chromosome number 2, that’s affected, we have a p arm and a q arm on each chromosome, (her q is the problem) and the numbers tell you which band.
I’ve had the pity looks forever now, from family, friends and strangers, but as soon as you have looked at her with pity in your eyes, with your slightly tilted head, you’ve stopped seeing her as a human being and only see her disability, which essentially contributes to the extraordinary little girl she is now and the woman she will become.
I find humour in the way some people don’t quite know how to react to her, at times when she may ask you questions that seem odd to you, but she won’t relent till you give her an answer, or she doesn’t look you in the eye when she speaks to you, or those times when she may touch you inappropriately as she touches your necklace near your boob and you jump out of your skin.
She has arrived at the age where she understands that she is different from other children her age, but doesn’t comprehend exactly how or why. At times, we struggle with explaining to her the reasons why she cannot be in a mainstream class with her mates, and before you ask, yes, we’ve been there, tried that (a few times) and failed dismally, and it is utterly heartbreaking.
Don’t make the mistake of underestimating my daughter, or pitying her, as she is intelligent, kind-hearted, empowered, courageous and compassionate. She has a great family life and some really close wonderful friends, who love her for exactly the person she is. She enjoys school and all the things she’s learning in her first year at high school and the independence she’s gaining.
Having a special needs child has changed me too, how could it not. I guess I’ve certainly become more patient over the years, I’m more compassionate, I’m more tolerant with some things are far less tolerant with others, particularly people. I’ve become pretty good at managing stress and questioning everything, as no one knows my child better than me.
I’m not saying the road is easy, I breakdown at least on a fortnightly basis, but this is our road together and I’m blessed to have this child in my life, we do things we are passionate about and spend time with those we love and support us when we need it. We embrace the hurdles and deal with them as they arise and that’s just how we handle it all because life never goes according to plan and who’d really want an uninteresting life like that anyway.