Tag Archives: downs

Baby’s not in a corner

My little girl had her first real dance a couple weeks ago. She’s been to a couple school dances but they were just casual after school things. This was a fancy dinner dance. She had been looking forward to it for weeks. We spend two days shopping for the perfect dress, shoes and accessories. She took all her stuff to school that day and the little girls in her after school program helped her do her hair and makeup.

All the little girls were very excited for her. They’re all a lot younger than her (K-5th grade) and they’re at the age where they dream of going to school dances. Jessica loved being put together. By the time I got there she was absolutely glowing.

I drove her to the school and walked her to the door. The girls were all squealing with delight over glittering dresses and sky high heels. The boys were all awkwardly pulling at collars and ties. Parents were fluttering about like paparazzi.

In the middle of it all there was Jess. Twirling and smiling, she was absolutely caught up in the magic of the evening. We were entering a world neither one of us had ever been before. She was heading into a dance that had nothing to do with special education or her ALE class. This was all regular students and regular teachers. I was entering a world where parents drop their children off at 6pm and then pick them up at 9pm. This seems normal for parents with regular kids. But when your kid has Down’s this is completely out of the question. Jessica has never been with strangers. She’s always been with me or family or her class or daycare. This was my first time letting her go. My first time letting her be a regular teenage girl.

She walked into the glittering decorations and I stood in front of the door not really knowing what to do. One of the teachers invited me in to take pictures. Jess was already at a table chatting with a group of girls. I called her over and she says “MOM! You’re EMBARRASSING me!!!!” She reluctantly let me take a picture then told me to go home.

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I sat outside for a minute. I worried about her being included. I was scared she would be sitting alone in a dark corner trying to break into the “normal” world. I forced myself to get in the car and go home.

And I waited.

I’m not sure time has ever passed so slowly.

When I got back to the school, the dance was still in full swing. One Direction blasted on the speakers as a hoard of teenage girls screamed “THAT’S MY SONG!!!!”

As I stood in the shadows hoping for a glimpse of my baby a girl came and asked if I was looking for Jess. She said that Jessica was having a great time. She told me Jess had been dancing nonstop all night. I fought back tears and told her that I had been worried Jess wouldn’t be included. She smiled and told me that everyone loved Jess. She said Jess had initially been worried that she wasn’t beautiful. All the other girls were in really formal gowns and Jess was in a simple dress. After the girl assured Jess that she was beautiful, it was all forgotten and Jess decided to jump in and enjoy herself.

Around that time the shimmer of a white skirt caught my eye and I saw Jessica dancing with a group of kids. I managed to sneak a picture of her. It’s not a clear picture but it’s probably my favourite picture. I look at this picture and it’s hard not to feel so overwhelmed. There was my little girl just being herself. Her happy go lucky in love with the world self.

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I walked out of the dance and let her have the rest of her evening. This wasn’t the place for parents. This was for 8th graders enjoying their last dance as kings and queens of their school. Next year they will be freshmen in high school and back to the bottom of the pecking order.

I sat outside and marveled at the young lady my daughter is becoming. She is bold and fearless. She’s 14 years old and she has Down Syndrome but she’s doing something I never could at her age. She went to a social function and didn’t care that she didn’t have a date or a group of friends to go with. She wasn’t shy or over self conscious and she didn’t give much of a toss what anyone thought of her. She was just a girl that wanted to go dance and have fun. This is one of those things the Down’s couldn’t take away. There are a lot of things the Down’s robbed from us, but this wasn’t one of them.

This was a night where a young girl taught her mom that it’s okay to let go and that she’s going to be just fine in this big world.

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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.


Red Pill Blue Pill

There was an article about a father whose daughter had Down’s. He was a scientist and a mathematician and upon accepting his daughter’s diagnosis, he dedicated his life to studying the condition. After years of research he’s entering into clinical trials for drugs that will help treat adults with Down’s to improve memory functioning.

This leads me to the grand question. If someone developed a cure for Down’s, a little pill that would delete the extra 21st chromosome, would I give that pill to my daughter?

When you have a kid with Down’s you inevitably run into two or three groups of parents. The ones that the Down’s is a total blessing (the crusaders), the ones that think it’s a total nightmare and the ones that don’t have an opinion one way or the other.  I tend to jump back and forth between the last two.  I’ve never thought of this as a blessing. Not once. It’s always felt like a barrier that’s kept my daughter and I from really connecting. It doesn’t keep me from loving her, it has nothing to do with that. I think that’s an important distinction to make. It has nothing to do with how I feel about my daughter, but it has everything to do with how I relate to my daughter.  When I found out Jess had Down’s it wasn’t me I was sad for, it wasn’t my own loss that I was grieving. It was hers. I was so heartbroken over every possibility that had been taken away from her. And as open minded and optimistic as the crusaders want to be, the diagnosis of Down’s comes with instantaneous limitations.

But that extra chromosome comes with more than just certain physical characteristics like those curved  pinkie fingers, and those characteristic flat eyes.  It comes with little personality traits that are unique to kid’s with Down’s.  She’s unfailingly kind, trusting, and forgiving.  She has her bad days, just like any other kid, she can be a total pain in the ass, but unlike kids without Down’s, Jess doesn’t know how to hold a grudge. She has no concept of shame, or inhibition.  In Jessica’s world everything is happy and fun. There’s no such thing as anxiety, Santa is always real, and it doesn’t matter what label is on her jeans.

If there was a pill that could delete the extra 21st chromosome in those 3/10 affected cells, would it annihilate those lovely traits in exchange for giving her the ability to read, write, do mathematics and function at age level? If it did, would it be worth the trade off?

And what about Jess? What would Jess want?

I see how frustrated she gets when she doesn’t understand. I see how sad she gets when she longs to be included with the other kids. She knows she’s different, but she doesn’t understand how she’s different. It breaks my heart to see her struggle so hard with things that seem so basic. Simple addition and subtraction seems so monumental to her, spelling and reading are so hit and miss. I don’t even know if it would be possible to find out what Jess would want. Would she want to change? How would we even begin to find out? It’s barely possible to communicate effectively with her on anything of an abstract nature.

I would be exchanging my Jessica for another version of Jessica. Who’s to say the other version of Jessica would be better, and who’s to say my Jess would like being the other version of Jess more? It’s an ethical mine field. This isn’t a cut and dry “if there was a cure would you give if to Jess?” question.

But when all is said and done, I love my daughter, and I more than anything I want her to have the best chance at life possible. Unfortunately, being mentally disadvantaged isn’t the best chance possible, and so if someone had a cure I think it would be wrong of me to deny Jess a chance at a life free of this disorder.  And while there would be things I would miss (and even writing this blog, and thinking of theoretical possibilities is bringing tears to my eyes) about my darling perpetually youthful little girl, she would deserve an opportunity to really grow up and live her life.

And so I will continue to support Down’s research in hopes that one day they will develop treatments and therapies to help increase functionality. I doubt there will be a cure for chromosomal mutations, but if there’s a possibility that an Alzheimer’s drug can help my daughter learn to read, write, and do math on grade level…it’s a step in the right direction.


Cooking with my daughter.

Defrosting chicken in the microwave. 

Me: Go push start on the microwave

Jess: What numbers do I push?

Me: None. Just push start.

Jess: Yea but what numbers.

Me: No numbers. It’s already set, just push start.

Jess: No numbers?

Me: No numbers.

Jess: Just start?

Me: Just start.

Jess: Yea but….

Me: No but. No numbers. JUST START!

Jess: But…

Me: START!

Jess: I pushed it.

Me: THANK you.

Jess: No big.