Jan 26, 2010

Anatomy Lesson

With a sister like Ainsley we have a lot of medical jargon flying around in conversations at our house. What's a brother to do?

Actually I'm kidding, I can't take credit for this other than he's my kid and I filmed the performance. Adrian's Kindergarten teacher (who is an amazing song writer and educator) wrote this song and taught it to the kids last year. Although during their studies of human anatomy I did participate by visiting the class (both with and without Ainsley) to talk about how not every body works in exactly the same way. It was great. We talked about ways that people's bodies might be, look or work differently, such as how it is common that some people need glasses to see, a hearing aid to hear, or a cane to walk, less common differences such as people that are deaf, blind, in a wheelchair, use a walker, are born with different body parts or just look different, people that use a tube to eat or a tube to breathe, like Ainsley. I could go on. There are too many types of human differences to list.

Last week when kids on the school playground were staring at Ainsley a friend said to me that kids "in this demographic" aren't exposed to or have children like Ainsley. What the hell does that mean?! It is ignorance that people think that birth defects happen to a certain type of person. In fact 1 in 33 kids is born with a birth defect. Yes that's right, click the link! And birth defects happen in every race and class of people. 1 in 625 people are born with a balanced chromosome translocation, the chromosome difference that Ainsley has that is likely the cause of her birth defects. Incidence of craniosynostosis are actually relatively common at 1 in 2,000 births. Again, I could go on, but hopefully I've made my point. To have birth defects is not an uncommon as some people think.

At one time we had only planned on having 2 children. If we had stopped there we would be among the smug who count themselves as producing genetically perfect children. The reality is that if you find yourself in that group you are just LUCKY. Now that I have a child who is not "typical" I know that I am STILL LUCKY because having a child like Ainsley teaches you a lot about people, about what is important in life and that ultimately we are all different and all the same and that all human life is valuable. AND that...by the way....it's not nice to stare at people who look different. But actually, you really don't have to have "special child" to know that one.


  1. Very well put Susan!, "Even in my demographic area, I would have to say this was very well said!!"

    We are lucky to have our children.


  2. I couldn't have said it better myself Susan. I too can't stand the ignorance of people who think it can't happen to them.

    Thanks for you very nice comment on my post about Jack's inability to talk. It meant a lot to me.

  3. Amen Sister!!!!! I love my children...typical and not so typical!

  4. Well done!!!! I definitely count you among my lucky friends. :)

  5. I loved reading your story about your daughter. You sound like a very strong lady. It really touched me. Your daughter sounds so adorable and a very strong little girl. We are so blessed to have these kids in our lives. I dont know what I would do with out my son. He is 8y and he is in the 2nd grade. He was born with Goldenhar Syndrome. He also had a 2 vessel cord. And that causes health issues on its own. But he has been stared at and many people who dont understand makes comments first then asks questions later. A little girl came up to me at church and asked me where are his ears? I said at home. bc his hearing aide wasnt working. And she said oh ok. And later I began to think. She really meant where are his ears. I had to chuckle for a moment. Bc at home we call his h/a his ears. I called her mom and brought my son over and showed her his ears. And how God made Him this way. Kids can be very inquisitive and some are mean. I just take it with a grain of salt and brush it off. But I will be praying for you family and your beautiful daughter!!!

  6. Your kids are so cute! Wanted to drop by to invite you to our new website - launched this week. Knowledge Safari - a social network and review site for parent/families with special needs. www.knowledgesafari.com

    Hope to see you there.