Happiness is...

... Your baby sister getting married to a beautiful, loving, nurturing, smart woman.

... Hope positively beaming as a flower girl, making sure she has the best seat in the house for the vows, and dancing the night away to her favorite pop songs.

... Going on a real vacation with the kids and Greg and my awesome parents, with airplanes and restaurants and hotels - and, oh yeah, thousands of people who love someone with Down syndrome and who want to be part of a supportive community creating a more inclusive society.

.... Having two Supreme Court decisions announced in as many days that protect the health care access extended to millions - and that saved Hope's life - and that affirm the fundamental right of Mare and Cait and millions of others to marry. Health and love rule.

Out with a whimper

This was Hope's last week of school for the year, but unfortunately we missed two of the three days because of clinic appointments. She's had a yucky cough off and on for the last couple of weeks, leading to one night spent in the ER, lots of sleepness nights spent in a steamy bathroom, and worry - oh, the worry. On Monday, our nurse practitioner determined that seasonal allergies were the culprit and started her on Zyrtec.

On Wednesday, however, when we went in for her lumbar puncture (which went fine except for extra low blood pressure before she woke up from her anesthesia - it's always something!), her ANC was only 600 - just a notch above neutropenia and a full-blown crash from the 1900 she scored on Monday. So a more likely explanation is that she had a virus that caused her body to ramp up her ANC for the fight, and is now depleted from the effort.

All that is to say, Hope couldn't go to the end-of-the-year picnic today. So she exits this school year with little fanfare...

But as I predicted just two months ago, the school year was short but sweet. Friends, exploration and discovery, and just a taste of independence. 

While I've been reflecting on Hope's return to school, I have been simultaneously inundated with stories and questions about the state of inclusion across the country. I recently joined a Facebook group about inclusion for kids with Down syndrome, and with almost 9,000 members, it is an active discussion forum. For me, it felt like another step back into the world of the living, where we need to plan for the next steps, not just focus on the narrow present of blood counts and chemo side effects. It has turned out to be a place of small celebrations, strident advocacy, and lots of horror stories.

From preschool to high school, most kids with Down syndrome and their parents have to fight tooth and nail to be included even in the most cursory of ways. There are lot of questions about the percentage of time in general education classrooms, pullout vs. push-in services, one-on-one aides, and curriculum modifications. There are heart-wrenching stories about kids coming home with bruises from being grabbed by adults, not being included in the yearbook, not being allowed to wear the same cheerleading uniforms as the "regular" kids, being segregated, excluded, disrespected, abused, and ignored. About IEP meetings where parents are told their children are too much trouble, not compliant enough, too unruly, not "high functioning" enough - to be part of their own communities. About kids who are being relegated to "self-contained" classrooms in pre-K and kindergarten with little hope of ever being part of a whole school community.

And then there are the triumphs. Pictures of kids going on field trips or to prom. Tales of multiplication tables memorized or spelling tests aced. But these are fewer in number and told to bolster the spirits of those who are repeatedly beaten down by the process, forced into mediation, due process hearings, legal battles, and often homeschooling or private school.

And in the midst of all this, I think of Hope. Of the meeting in the Community Play School office after her first day back, when all the teachers gathered and asked, "What does Hope need?" Not, "What are your requests?" Not "How must we accommodate her?" No. How can we meet the needs of this child, just like we meet the needs of all of the children here. The list was pretty short. Mostly about limiting exposure to any germs. And then she was in. Not accommodated, just in.

Inclusion is the natural state of being. I ran across a group recently that has an annual inclusion conference called "All Born (In)." That's it. Hope is in Community Play School. There is no fight about accommodations that they unwilling to provide, no discussions about how she will keep up or how to manage her behavior so she doesn't negatively affect the "regular" kids or be a drain on the staff. She's in.

(This week was also the comment period for a U.S. Department of Education and Department of Health and Human Services policy statement on inclusion of young children with disabilities in high-quality inclusive early childhood programs. And it's surprisingly good. Worth a read if you're interested.)

Remember what Dr. Gordon told Hope in March? (Hope still reminds me on the way to school...) "Gordon say I go in!" Yup, in, that's where she was and where she will be when she moves up to the City Room next fall.

"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

One year

Today was a hard day. We'd been watching it on the calendar creep closer and closer. I knew it really didn't mean anything - one year from the day of diagnosis holds no special significance. Maybe it would pass with little emotional fanfare.

But this morning I kept thinking about those damn petechiae. Her chest was covered with them. It looked like an odd rash. Because of snow the day before, school was cancelled. Late in the morning I unzipped Hope's footie pajamas to get ready to play in the snow and saw her speckled trunk. I called Greg over to look. I told my neighbor Stephanie about it. Should we dig out the car and take her to the doctor for a look before the weekend? Coupled with a runny nose, I thought it might be viral - but worried it might be strep with a rash; Quinn had that once. I got a 4:00 appointment. 

Today at 4:00 I was dropping Celia off at futsal and after she got out of the car it occurred to me that one year ago at this time I still had the innocence of not knowing. As my mind replayed the doctor's visit and the subsequent visit to the lab for the blood draw, the horror of it flooded me. Watching myself not knowing, as I heard the word "petechiae" for the first time, as the doc told me she had a very high white cell count, as I drove home wondering why they were waiting for a pathologist to look at her sample. All that time and for who knows how long before that day, cancer was waging war inside my beautiful baby's perfect body. And I didn't know. Until I did.

Until I was sitting on my bed trying not to scream into the phone, calling my parents and telling them to come right away, carrying my baby across Orleans St from the parking garage into the ER while she kept saying, "I okay." Until young Dr. Gordon came in and told us definitively, and everything was quiet and loud, too bright and completely black. "But she isn't sick. She just has a runny nose." 

I didn't know and then I did. After today, a whole year will have passed since we didn't know that horror. It keeps getting further away and someday we won't remember what it felt like before.

I have these two small stones inside my armoire. Courage. Joy. I need the reminder every day - and I guess especially today. It's just another day on the calendar. But to face the horror of those memories I need as much courage as I can muster and to be open to the joy of each new day.

I can do it my own self

My parents like to remind me of a frequent refrain from my childhood: "I can do it my own self!" It is both the blessing and the curse of the four year old. Independent, determined, persevering: it's the only means to learning the myriad skills needed to function in the world. Hope's speech is not always intelligible, but these days we are clear about a few key phrases: 

"Leave me alone!"

"Let go!"

"I do it!"

She dresses herself every morning - and changes at least twice before leaving the house. She opens the car door and buckles herself into her car seat. She gets her own snacks and disappears into the bathroom to use the potty for long stretches many times a day. 

It is exactly as it should be, but it does require patience - and flexibility - and clear thinking about where the lines in the sand must be held no matter the tantrum that might ensue. So I let her ride in the back of the shopping cart (while she shouts "I'm squished!" every time I put anything in)...

and wear my coat when we are late to pick up the big kids...

But she can't forego her car seat no matter how long she pouts...

She is reaching new heights. It is breathtaking.

Back to Playschool

It was another new beginning today. Hope returned to preschool - just for outdoor play until flu season is over - but it was muddy and fabulous! All the way home she kept telling me, "Fun, mom, fun!" And when we called Daddy, she had just one word for him: "Friends!"