I picked up Jessica from day-camp today. I stood there watching her play Just Dance on the Wii with kids half her age and size. I don’t think Jessica even realizes the difference. These kids are on the same level as her and they’re her friends. I think the kids are at that age where they know that she’s different, but can’t figure out why. They love being around her because she’s a teenager, in junior high yet still likes to play little kid games with them.
We got in the car and she started prattling on about her day and she usually does. This is where the autism kicks him. She has a life plan and she repeats her plan every single day, multiple times a day. Any every time she goes over her plan, it’s like she’s telling us for the first time. She’s going to go to high school next year. She’s going to be 14 and in “nine grade”. Then she’ll be 15 and in “ten grade” and then 16. When she’s 16 she’ll get a computer. Then she’ll do “gradulations” after “twelve grade”. I go a long with her plan. All these things will happen. Though I’m not sure the computer will be pink with flowers, but she’ll certainly get a computer. Maybe it’ll have flower stickers.
But then she continues her plan. She’ll go to college. She’ll go to St. Mary’s and study math and science “just like you mommy”.
That’s when I get a lump in my throat. I try to fight back tears and suppress the anger at the damn 21st chromosome that will roadblock this plan.
When you’re pregnant you have all these hopes and goals for your baby. You dream of making sure they have things better than you did. You want them to know that the world is wide open and that they can do and be anything they want. And then the doctor tells you that your daughter has Down Syndrome and it’s like her potential was cut off before she was even out of the NNICU.
We have to work on her transition plan. They sent home assessments where I ask Jessica where she plans on living after high school, where she plans on working, if she plans on going to college etc… And it all just seems so cruel.
I’m friends with people that have kids the same age. They’re doing the same transitions, making the same plans, but they don’t have an extra chromosome holding them back. While I’m genuinely happy for these kids and their parents, it still stings. It still feels like she’s been robbed, like she’s had her dreams taken away before she’s even been allowed to dream them and that hurts. It’s even more painful because she doesn’t know.
She’s going to finish high school and expect to go to St. Mary’s and I have no idea how to tell her that it’s not going to happen.
I went to school and got degrees because I wanted to be a good role model for her. On the day I graduated when she said she was proud of me, it was the greatest moment of my life. And now my little girl wants to do what I did. She wants to be like me and I feel like I just set her up for disappointment.
There isn’t a “What to Expect When Your Kid has Down’s” book and no one ever tells you about this part.