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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!" 

A light in the darkness, and the new, untouched days ahead

It was a weepy Christmas week for me. Overwhelming to watch Hope so happy - playing with her cousins, tearing into presents, laughing, telling stories, and just enjoying this magical time of year.

We went to clinic on Monday and all is well. She is tolerating her daily chemo well and may need a dose increase next month - which is fine. It was a huge relief and I wish we'd had an appointment before Christmas instead of after so the joy of the holiday hadn't carried an undertone of fear. But all is well. We just need to learn to trust in the moment and enjoy the wonders of now.

White House Christmas Tour, 12/20/14

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Looking back at 2014 is difficult. We are so ready to close the door on it. (So ready, in fact, that we'll be moving into a new house in January! With a giant backyard and more elbow room! More on that soon...) But there's a contradiction at work when we do force ourselves to reflect on the year.

In a light-filled room, even the most beautiful lamp is just a room accessory, likely to be overlooked. But in an otherwise deep and complete blackness, that same lamp inspires hushed voices and awe. 

We are acutely aware of life and love and family this year. Moments of joy and health and the wonder of everyday things are burning more brightly than ever before. Blinding, brilliant light braving the darkness because that's what it is meant to do.

"And now let us believe in a long year that is given to us, new, untouched, full of things that have never been." - Rainer Maria Rilke

Welcome, 2015. We look forward with H/hope to the new, untouched days ahead.

Giving thanks...

... for the incredible Hope who brings more light and beauty into the world than seems possible for one small human. ... for the ways she has bounced back over and over from pain, discomfort, sadness, and frustration. ... for the great strides she has made in speech and strength and agility. ... for the example she provides to me and to everyone she meets of how to live for the present moment, to be open to the world and its people and experiences, great and small, to leave behind the problems of yesterday and focus on the blessings of today.

... for Celia and Quinn, who have grown so much both because and in spite of the impossible challenges they have been forced to confront this year. ... for their relentless pursuit of becoming more fully who they are. ... for their laughter, insane brainpower, and companionship.

... for Greg, whose steady presence makes so much possible. ... for his hand to hold and shoulder to cry on. ... for his love when it's the only thing to hang on to.

... for our families - parents and siblings and in-laws and the cousins - whose Facetime calls and hospital visits and frequent check-ins remind us of our most important connections in this world, the ones that will always be there to pick us up. ... and especially for my parents who dropped everything and practically moved into a hotel in downtown Baltimore to be here - to sit in clinic or our hospital room, to spend time throwing a football with Quinn or chatting with Celia about her day, and just to bear witness to all that has happened.

... for our neighbors and friends who fed us for months (too many to name, but must mention Kate and Dom!), drove our kids to and from school, call and text to let us know you are thinking of us (esp. Lisa!), listen to all the gory details with interest and compassion (esp. Dorothy!). ... for Jennifer and her family whose friendship and support for Celia and our family continues to buoy us. ... for old and dear friends who are far away but whose love still holds us up (and esp. Heather and Alyssa).

... for Pia, Rachel, Stacy, Linda, Erin, and all the therapists who have kept Hope moving forward, who always see her potential and believe in her, and who have given us company and normalcy in our months of solitude.

... for the nurses - the brilliant, kind, amazing nurses - who do their jobs with professionalism, accuracy, and skill, truly care for Hope and for our family, teach us how to manage the nuts and bolts of this ordeal, give us lessons in advocacy, and have become part of our lives in countless ways.

... for the doctors, who always give us their full attention, make their concern and care for Hope a priority, and answer our countless questions with respect and kindness.

... for the families who have walked this walk before us, who put their faith in the research protocols for the best interests not only of their child but of all the children who will face leukemia in the future. ... for the parents who have shown us by their example how to keep putting one foot in front of the other, even when it seems impossible, who face far steeper climbs than we do and still manage to say hello at the coffee machine or smile at Hope in the hallway.

... for the strangers who reach out with kind words and loving gifts, especially the Erwins whom we have never met but who have sent Hope many thoughtful care packages just because. (May we return that generosity of spirit into the world some day!)

Adventures in Hope-Land: A Birthday, Halloween, the Buddy Walk and Maintenance

We can't yet see the light at the end of the tunnel, but the tunnel seems to be a bit wider and higher, so we don't have to crouch as much. And occasionally we can stand fully erect and feel part of the world again.

Hope turned 4 a few weeks ago. It was a perfect warm fall day - with a trip to the zoo with cousins, a visit with Aunt Mare and Cait in from Chicago, lots of presents, a Barney cake made by her amazing big sister, spaghetti and meatballs, and s'mores! She likes the ritual of singing Happy Birthday and blowing out the candles, so we did cupcakes in the afternoon and a cake after dinner. (Hope didn't take a bite of either treat - still not into sweets - but Celia and Quinn appreciated it!)

It's hard to believe all that has happened since she turned 3.

Here's to a smoother ride this year...

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We had to try three times to make counts to start maintenance, but she finally had a high enough ANC last Monday, Nov. 3. Unlike the other phases, where each dose of chemo and day of treatment are required by the protocol, and delays stretch out the timeline, long-term maintenance (LTM) is different. LTM has an end date - for Hope it's June 4, 2016 - and she'll go through a series of 85-day cycles until that date. Once you begin LTM, you are in it for the long haul - with no delays. Occasionally chemo might get held (for illness or low counts), but you don't "make it up." So the two weeks it took to get started were easier to take than the delays in earlier phases.

The objective of LTM is to keep Hope's immune system suppressed to a level that will prevent any lingering cancer cells from multiplying but will allow her to fight off routine viruses and bacteria. (The goal is an ANC that stays between 750 and 1500.) Lots of kids go back to school during maintenance, and live relatively normal lives, at least in comparison to the first 8 months of treatment. Once or twice in every cycle she'll have lumbar punctures with chemo (days 1 and 29 in the first 4 cycles, day 1 in the rest of the cycles), and day 1 of each cycle she'll get vincristine. We'll go to clinic about once a month. But most of the protocol is oral meds at home. Each cycle begins with a 5-day pulse of prednisone, and then there's a nightly oral chemo (mercaptopurine or 6mp), and a weekly oral chemo (methotrexate). The chemo dosages will get adjusted to keep her ANC in the sweet spot they are looking for. So that's the drill and we'll just see how it goes.

This week she's doing her first prednisone pulse - and it's intense. Lots of tears and tantrums - and near constant intake of Chex Mix. She feels pretty rotten - her belly hurts and her legs ache. But she is enjoying the tiny bit of additional freedom. After school yesterday, she and Quinn and I went *into* Frank's Pizza to eat. She was thrilled to be inside where she could say hello to everyone and people watch.

*****

I realize now that I've reached the end of this post that I missed some major events during my blog hiatus: Halloween (when a fortune teller, Percy Jackson, and a princess had a great time in the neighborhood) and the Baltimore Buddy Walk (when Team "Hope for the Future" raised $3530 for the Chesapeake Down Syndrome Parent Group, Celia and Quinn ran the 5K, Hope walked the entire mile, and 32 of Hope's friends and family joined the 1000 participants on a cold, windy morning to celebrate our loved ones with Down syndrome).

Here's a few shots from both:

Team Hope for the Future

The DJ played Call Me Maybe and Hope came running over to dance.

Nearing the finish line of his first 5K

Celia at the finish line: 2nd in her age group!