10 years

In the blink of an eye, and the wide expanse of a million moments, a decade has gone by since we rushed Hope to the ER on Valentine’s Day 2014.

I don’t think about cancer every day anymore— or even every week. For years I didn’t think that was possible. But the experiences of childhood leukemia shaped our whole family in ways we can longer disentangle from who we were before. Who we might be if it hadn’t happened to us is impossible to imagine.

And then there is Hope. Of course it happened to her more than to the rest of us. And yet she carried us through it. Just as she carries us today. 

It’s funny how people assume that because people with intellectual disabilities need certain types of support that they must be a drain on their parents and caregivers. That they must take more than give. In my experience nothing could be further from the truth. Hope sustains me. She makes so much possible. She fills me up every day. 

10 years on this side of that life changing moment. I am eternally grateful -- and full of love and wonder and awe that we are living this life together.

*****

Hope is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

— Emily Dickinson

WDSD 2019 - The perfect recipe for Hope

Each year on March 21, people around the world celebrate individuals with Down syndrome. It’s 3-21, representing the three copies of the 21^st chromosome that cause the most commonly occurring chromosomal condition in humans. 2019 is the 9^th year that this date has held a special meaning for me as the parent of a daughter with Down syndrome.

This year for the first time I went into my daughter’s second grade classroom at City Neighbors Charter School in Baltimore to talk about Down syndrome. There are lots of blueprints available from Down syndrome organizations and other parents for these kinds of “peer presentations.” But much of what I found as I prepared for my visit didn’t feel quite right. These presentations often felt designed for otherwise homogeneous groups of white, middle-class, suburban students with one student who stood out because of her extra chromosome. Our context couldn’t be more different. My daughter’s classmates are diverse in a myriad of ways – racially and ethnically, socioeconomically, and in terms of ability. So I borrowed a little bit from here and there (and a leaping off point from my dear friends Brian and Erika who made cookies like these for WDSD at City Neighbors Hamilton a few years ago in celebration of their fabulous daughter Amara).

Here is the letter we sent home to parents describing my visit.

Dear 2^nd grade families,

Today Hope and I shared a little bit about Down syndrome with her classmates…

Ø  Hope and I gave each child two small cookies. One had two M&Ms on top and the other had three. Everyone tried each cookie and compared them. We talked about the ingredients in cookies – flour, sugar, butter, eggs… The cookies with three M&Ms were made with an extra egg – they are a little chewier, but they are still delicious!

Ø  People are made from a recipe of ingredients too. Each one of the trillions of cells that make up our bodies have chromosomes inside to tell our cells what to do – they make our eyes brown or blue, our hair straight or curly, etc. Most people get 23 chromosomes from their mother + 23 chromosomes from their father = for a total of 46 chromosomes. Sometimes a baby gets one extra – so they have 47 chromosomes. When the extra chromosome is an extra #21, that person has Down syndrome. Hope has Down syndrome.

Ø  We watched a short video about Down syndrome: Kids Meet… a Woman with Down Syndrome: https://www.youtube.com/watch?v=zTE4OHpC2EU

Ø  Having an extra chromosome makes some things a little harder: When she was little, Hope had a lot of therapists to help her learn to speak, walk, jump and run. Now she gets extra help at school from Ms. Evans for speech and Ms. Jen for writing and other fine motor activities, from Ms. Jones and Ms. Chester. Most people with Down syndrome have to see more doctors than other people – but Down syndrome isn’t a sickness and no one can catch it. It’s just something you are born with and will always have.

Ø  People are all a little bit different from each other – they are made from a slightly different recipe, but we all have a lot in common too. We talked about some of the things that make us different from one another and some of the things we have in common – who likes pizza or sushi, who is scared of getting shots and who doesn’t get upset about it, who likes to dance, play soccer or do the zipline on the playground, who likes to go to the beach or fly on an airplane.

Hope loves school and she loves being with her classmates! We hope that understanding why Hope is a little different, but also how she is really just a kid like them, will help her classmates continue to be good friends, to give her a hand when she needs a little help, and allow her to be a friend to them. (In truth, no one gives a better hug than Hope when you are feeling down, and if anyone needs help overcoming a fear of doctors or hospitals, Hope should be your go-to friend!)

Here are a few additional facts about Down syndrome: 

v Down syndrome is the most commonly occurring chromosomal condition, occurring in about 1 in every 700 babies in the United States.

v Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

v All people with Down syndrome experience cognitive delays but they are usually mild to moderate.

v Often people with Down syndrome have vision and hearing challenges, about half have heart defects, and most have low muscle tone that contributes to challenges in gross motor function and speech.

v Because of advances in medical care and early intervention services, and because people with Down syndrome are included in school and the community, people with Down syndrome can live wonderful lives as part of their community – they can graduate from high school, go to college, get married, have a job and live long, healthy lives.

v Next week, March 21 (or 3-21) is World Down Syndrome Day!

If you want to learn more about Down syndrome: https://www.ndss.org/about-down-syndrome/down-syndrome/

And here are some great videos about Down syndrome: https://www.meriahnichols.com/the-best-down-syndrome-awareness-videos/

If you or your child ever has a question about Down syndrome, please just ask. We love to talk about Down syndrome!

Best,

Liz and Hope