Wednesday, October 7, 2009

Trisomy What?

Taylor @ 2 years old, 3 weeks after her diagnosis.

There seems to be an "Awareness" month for just about everything. Last month was Pediatric Cancer Awareness month. This month is Down Syndrome Awareness month. We have Black History month, Breast Cancer Awareness month…the list goes on and on.

Now don't get me wrong. I have nothing against "awareness" months. Unfortunately, my daughter has such a rare syndrome that she doesn't have a month. Well, actually she sort of does if we lived in Alaska.

Taylor has Trisomy 9p. I suppose we could tag along with the Down Syndrome Awareness month since Down Syndrome is technically called Trisomy 21. They both involve having an extra chromosome. It's amazing what having just one extra chromosome will do. In Taylor's case, it isn't even a whole chromosome…it's just having the extra p portion of the 9th chromosome…which makes it even more rare than if she had the whole extra chromosome.

I hope no one takes this entry as me complaining about not having a month. This is just my nod to those of us with kids who don't have a popular or common syndrome. We don't have a colored ribbon we can put on our blogs or a celebrity spokesperson raising awareness. We get to do that ourselves.

What we do have is a close-knit community of parents who understand that we don't have anyone that understands exactly but each other. Taylor was diagnosed when she was 2 years old. Up until that time, we were out in limbo land. When we got the diagnosis, there wasn't sadness. There was relief. Finally we had a name. I guess when you know something is wrong with your child, it's no longer about hoping the tests are negative and more about hoping it gives you a name.

For those parents who have children that have any of the above conditions, please know that I'm not making light of them. These were just my thoughts for the day. My Taylor always has to be different and she just couldn't have a well known syndrome…she had to go for the rare.


Rhi Rhi's mom said...

Good evening my friend!!! Guess who and i would agree w/you on this front. Remember though it took one person to get an "awareness month" for each of those topics. Are you going to be the one for Trisomy 9? Something to think about

Heather said...

ya know, i would never wish breast cancer or any cancer on anyone, ever. but it does kind of bother me at how much attention it gets. not just the month, but the whole color thing. it's on every item possible.

you have a daughter with a rare disease that needs awareness brought about.

i had a rare cancer, which is on the rise. and no i don't believe there is a month for my type either. of course my radiation treatments included an area of my breast which puts me at a higher risk for developing breast cancer. which would really suck.

but the point is, all things deserve awareness. equal awareness! thank you for educating us.

Tricia said...

I get this, and having had a child with cancer, I can say that your post is not offensive. Because I get this. Even while the one was sick I got this. And because my other daughter has a brain injury. The most frequent (and annoying) comment I get when people realize she is still not ok is, "Still?" said in an incredulous voice as if there were something wrong with me/her because she is not better. I get this. I just wish everyone else did, too. God bless.