I watched a TED talk today. An eloquent, thought provoking woman, who happens to have a muscle wasting disease, spoke of her desire for a change in language. You see she reflected on parents-to-be hoping for neither a girl nor a boy but a healthy baby. She spoke of feeling like it was a kick in the pants to realise that she was that unhealthy baby that nobody wishes for. I too hear a “healthy baby” wish and have a sudden intake of breath. Don’t get me wrong I wish my child didn’t have to endure the pain that she does but I do think she’s exactly the way she is supposed to be. I understand that no parent wants to look down the barrel of grief and pain and loss and endless appointments. I do. But it’s hard to hear folks saying that they don’t want the baby that I’ve got. Because she’s not healthy. This gorgeous woman had an idea. Lets replace that word with a different one. “I want a happy baby. A happy child.” How cool would that be?
So I started thinking about language, hopes and dreams for my children and how I judge their “success”. When Missy was only 2 years old I really had to stop and completely rethink my own measures of success. I had travelled overseas, could play a musical instrument, had a job, had bought and driven a car, got married and I had a University degree. They were some of my measures of accomplishment at the time. Then I had to request equipment funding (there was my first shock…kids with additional needs did NOT just get what they needed!) I had to fill out a form for a corporate type charitable body that was looking to set goals and then be able to measure the outcome, that was how they were distributing their funding. So I had to figure out what future goals I had for my 24 mionth old. Average kids, developmentally “normal” kids or whatever term you want to use…most kids…Ill say most kids, by 2 years, would be playing with simple toys, walking, speaking and eating family food. A year and a half ago they would have been looking at friends and family and engaging. I had a child who was just getting to that goal…who was only just looking when you spoke to her.
The short term goals we had for her were being able to tolerate the standing frame to stretch her muscles and quite frankly just getting her to Early Intervention over a 20 minute drive without her screaming until she vomited was a goal. Sleeping was a great goal for her AND me. But these weren’t the sort of goal this form was looking for. They were looking for longer term goals.The realisation that I had a child who would not, in all probability, achieve the measures of success that I has set for myself was shattering. And it took a lot of hard thinking to figure out and change my thoughts about success. So I started thinking “in what other ways am I successful and in what way do I want my child to be successful? And my 6 year old…what goals do I have for him?” I realised it hadn’t been a conscious thought. I was hoping I ensured he was happy and healthy every day in small ways…you know, fed, bathed, clean clothed, books shared, Lego creations admired, parks walked, balanced him on a tricycle. But I hadn’t thought of what a successful life would look like for either of my children longer term. And here was a piece of paper confronting me with questions for which I didn’t have answers.
Even the small things my son had achieved were out of the grasp of my little girl.
Different people have different goals. So what would you consider an aim for your child? To be wealthy or to be rich with friendship? To be in a position of authority or to be part of a community? And does it have to be a choice? Are these pairs mutually exclusive or can they co-exist? Now, as it was back then, there are a lot of questions unanswered. Because there is no clear answer. Not one right path for us all…for what a boring world that would be. Different goals suit different people at different times…and even these goal posts shift (pardon the pun).
So, what did I write those 8 years ago? I found the forms. Apart from an extensive list of family and medical background the first question was “How would funding from the —- Foundation improve the quality of life for the intended recipient?”. With a little therapist input my answer was…*It would assist coordination/muscle control. *Help train her toward communication devices. *Introduce learning *HAVE FUN the way her brother can! Pretty straight forward. Then came the tricky question…the source of headache and reassessment. “What are the goals and future objectives of the intended recipient?” Deep breath. I have to confess to being teary when I read the answers. Silly I know…my own words…but I had written my musings about success before I looked at my nearly decade old thoughts and was pleased. This is what I wanted for my girl then…and what I still want.
To communicate her wishes and express herself.
To gain some independence.
To interact and play with our family.
To feel success.
To be active and mobile.
To participate in her community.
To know how much she is loved and be happy.
And there it is. To know she is loved. A happy baby, a happy child. That is success. It’s something that we all wish to have in common. And it’s what she has. She is loved and loves. ..she is happy. They both are. No time for pats on the back here though. There is washing to do.
To see the inspiring Karni Liddell talk, click away.