"Gordon says I go IN!"

Last week we went in for our favorite appointment. Two months into each cycle we have an appointment with no procedure and no chemo - just a check up. They do have to access Hope's port to draw blood for labs but that's it.

Hope was happy to see everyone - and I think it was mutual. We got to hang out with our friend Amanda and her parents. (They are so close to maintenance - yay!) Plus clown and bubble bonus.

But it was some special good news that pushed us over the edge. Dr. Gordon gave Hope the green light to go back to school - not just play outside with the kids, but actually go *inside*! One of the attendings that we really like came by to reassure me that it would be fine. He said that the real threats to Hope these days are more internal than external - though even a low-grade fever still earns us a trip to the ER for IV antibiotics (so we'd just as soon she not get sick), it's bloodstream infections that are the real potential danger and there's not much we can do to guard against that.

We got to the car and my face hurt from grinning. It occurred to me that maybe Hope hadn't been paying attention to my conversations with the doctors so I asked her if she had heard what Dr. Gordon said.

"Gordon say I go IN!"

Yup, she got it. So Monday morning she got dressed for school, I packed her lunch, and as I gathered our stuff together she added a red tutu to her "first day of school" outfit. She is so 4.

The funny (and sort of devastating) thing is that Hope was given that tutu in the ER on the night she was diagnosed. ("Your kid has leukemia, but here's a cute tutu!") If I wasn't already overflowing with emotion about returning to school, that tutu pushed me over the edge!

We are taking the transition slowly. I didn't have her medical forms filled out last week so I had to stay the whole time. But that was a bonus: I got to hang with a super cool group of 3-4 year olds and their loving and excellent teachers whose patience and wisdom reminds me of my best parenting moments (but they do it all day long, every day, with other people's kids!), and I managed to take some pictures documenting her return to the world of children.

First stop: Painting!

Greeting her old pal Ginny

On top of the world (and the beehive)

"Hope, I need you!" called her new friend Signe. (It seems they both have a fondness for playing Happy Birthday.)

"I want to sit next to Hope," said Joe. (True story!)

Playing babies with Lola (in a toucan suit, 'cause why not?)

On the ramp
 (We are having a hard time fitting in all our home therapy appointments with our new school schedule, but that's OK because there's so much PT and OT and speech built in to the day at Community Play School. Lucky us!)

The tail end of an incredible, spontaneous group hug - on a table in the hallway. Confirming Hope's suspicions on multiple fronts that this is the right place for her!

Running in the halls

We spent Thursday at clinic getting a 4-hour immune system boosting infusion of immunoglobulin and telling tales of her triumphant return to school. Ready for next week!

It's going to a short school year, but it's going to be so sweet!

321

As I write this, there are just a few minutes left of March 21, or 3/21, World Down Syndrome Day. In between the many activities of this busy Saturday - Hope's music class, the Chesapeake Down Syndrome Parent Group spring welcome social, dinner with my parents, the City Neighbors Charter School 10th anniversary gala - I thought a lot about what I wanted to say about it. Some of my ideas seemed too simple to be worthwhile and others too complicated to do justice. But I'm going to try.

It's simple: People with Down syndrome have three 21st chromosomes instead of the more typical two. And that's complicated: This arrangement means there are some fairly predictable challenges (like slower speech acquisition, low muscle tone, and sleep apnea) and some unpredictable challenges (I can't list any because they are, you know, unpredictable) - and they require an army of experts, therapists, doctors, and other parents to navigate.

It's simple: When you have a child with Down syndrome, there is love, laughter, frustration, fun, worry, learning, stumbling, mistakes, joy, growth, wonder and mundanity - just like there is with every child and in every family. But it's also complicated: In the Ds community, folks like to say "more alike than different" and that's true - but some aspects of the difference can be really difficult. There are more likely medical challenges (heart defects, feeding issues, and, of course, leukemia), and you have to learn to advocate firmly and occasionally fiercely to ensure your kid gets what she needs.

It's simple: Every person deserves respect. But for some reason, this is complicated: People with Down syndrome continue to struggle for inclusion in society in schools and workplaces, in movie theaters and restaurants. Their civil rights battles are still being waged - to make independent decisions, to earn money and still have health insurance, to vote. 

It's simple: We set this day aside to remind the world about Down syndrome, what it means and why it matters. But that is a complicated mission: People with Down syndrome are as varied as the rest of humanity - of all races and ethnicities, social classes and religions, with countless talents and interests, navigating the same world, feeling the full complement of human emotion. They cannot and must not be reduced to either inspirational stories or a disease paradigm. 

Hope has Down syndrome. It is part of who she is. I can't tease apart all the strands so I celebrate Down syndrome today and every day.

Hope and Loyola volunteer Devan at the CDSPG Spring Welcome Social, March 21, 2015. Photo credit: Sarah Ridgway