You're Invited! Raffle and Buddy Walk

We had a busy, productive Labor Day weekend. House projects, cleaning, laundry, soccer, lots of backyard "playground" -- and we capped it off with a cookout and s'mores. As I was cleaning up and listening to Greg and the kids laughing in the backyard, swinging, sticky with marshmallows and itchy from mosquitoes, I was struck by the incredible difference a year makes. We spent this summer making up for the paucity of the last one when we never left Baltimore, spent 40 nights in the hospital, and saw the worst side effects of Hope's treatment.

August, 2014

August, 2015

Tonight's sweet end to summer is, however, bittersweet for us, because it's impossible to forget the children we know who are, right now, on the 11th floor of Hopkins Children's Center. Three beautiful children with Down syndrome and leukemia, and their parents and siblings, who have not spent long hot days at the beach this summer, have not eaten dripping ice cream cones as fast as they could while cracking up at the mess, have not marveled at the Grand Canyon and the startling beauty of the desert, have not gotten a new lunch box or cool binder in anticipation of the first day of school.

These families need our help -- our prayers, our support, and our love. They need to know that we are thinking of them and pulling for them -- that they are never forgotten as we go about the magnificent normalcy of life. Because, truly, it's the loneliness of critical illness that is its greatest under-appreciated sorrow.

In 2014, Hope and then a second little girl in our local Down syndrome community named Amanda were diagnosed with acute lymphoblastic leukemia. (Children with Down syndrome are 20-30 times more likely to get leukemia than typical kids. You can learn more about that devastating link here.) In response, our local Down syndrome organization, the Chesapeake Down Syndrome Parent Group established the Amanda-Hope Medical Assistance Program to provide financial support to families in the Baltimore metro region who have children with Down syndrome and leukemia. This support can help alleviate some of the practical challenges these families face because of lost wages due to lengthy hospitalizations and long days in clinic and overwhelming medical expenses. It also lets families know that they are not alone.

The need is immediate, with three new diagnoses in 2015. To replenish the fund, CDSPG is having a raffle, with a top prize of an iPad! Tickets are 1/$2 or 3/$5. The drawing will be held at the Baltimore Buddy Walk on October 4 (but you do not need to be present to win). You can buy tickets here - or  you can mail me a check made payable to Chesapeake Down Syndrome Parent Group (357 Rosebank Ave., Baltimore MD 21212).

Thanks so much for your support!

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And since I mentioned the Buddy Walk...

The 2nd Annual Baltimore Buddy Walk/5K will be held on Sunday, October 4 at 9 am at Rash Field at Baltimore's Inner Harbor. Buddy Walks are held all over the country in October, Down Syndrome Awareness Month, to promote acceptance and inclusion of individuals with Down syndrome, as well as to raise much needed funds for local Down syndrome organizations. CDSPG performs many important functions for our region including education seminars, sibling support, programming for individuals with Ds of all ages, medical outreach, and parent support, particularly for new prenatal and postnatal diagnoses.

Our family would love to have you join us for an amazing day of community, fun, food, music, and kids' activities! Please consider either joining or donating to Team Hope for the Future!

The kindness of strangers

Now that school is back in session, I have a couple minutes to reflect on the summer - and especially on the incredible kindness of strangers.

A few weeks ago Hope's wish for a backyard playground was granted by Make-A-Wish Mid-Atlantic. Our Wish coordinator Courtney, Wish volunteers Bill and Mary Ellen, and Play 'n Learn created something truly extraordinary that Hope will love and use for years to come. So many hours of coordination and care and labor went into this awesome project. And then Bill and Mary Ellen (and her kids) came by with a big box of Hope's favorite food (glazed donuts!) and even more presents to celebrate her wish being granted.

On the day of the build, every few minutes she'd call out the window: "Man, is it ready?" And this sweet guy would call back, "Not yet!" Until it was....

Hope's delight over the past few weeks has been immeasurable. I can't imagine how we could estimate how much fun her playground will provide over the next many years.

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Our last week of summer vacation we were in Fenwick Island, Delaware. We stayed in a quiet little development a few minutes from the beach that was provided to us by Believe in Tomorrow, a foundation that has respite housing for families with critically ill children. They also have a building in Ocean City with several units and a couple of mountain houses.

It was our first time in the program and we weren't sure what to expect. We had the sense that we might find a gift certificate for mini-golf or a pizza in our welcome basket, but what actually happened blew us away.

The morning after our arrival I attended a mandatory orientation where I selected activities from a list of about 15, and then the program coordinator Wayne set up our schedule for the week. Here are some of our adventures:

We went horseback riding at Autumn Groves Horse Farm.

 

Seeing Hope sitting ramrod straight on that horse was breathtaking. She was confident, comfortable, and beautiful. (I think therapeutic riding might be in our future...)
 

Two lovely men in their 60s from Ocean Pines Marina and Yacht Club took us out on the bay for a morning of sightseeing and fishing. We saw the ponies of Assateague up close and caught a little fish. Being out on the water was thrilling - even while Hope was busy shouting "No bumps!" over the roar of the engine.

Hope and Celia had their nails done at Robin Walter Salon and Spa by two sweet women. Hope ended up with blue sparkly fingernails "like a mermaid."

We ate crabs (and lots more) with all the other families staying with Believe in Tomorrow in Ocean City at Hooper's Crab House/Sneaky Pete's including a visit by a pirate.

We spent an afternoon at Jolly Rogers Amusement Park and discovered that Hope LOVES kiddie rides. She was unstoppable! Quinn had a great time learning to drive a go cart (which unfortunately ended in a crash and an ugly seatbelt burn on his neck). I suspect his need for speed with eventually lure him back to the track despite the incident.

Greg and Quinn did a longer expedition on the Bay Bee fishing boat and Quinn caught his first fish - a bluefish.

We also went to a magic show, ate a nice meal at Mancini's in Fenwick, Greg had a surf lesson (unfortunately no pictures from that one!), and John Mick Photography took a family portrait for us on the beach. And we had the opportunity to meet a bunch of families that all seemed so familiar to me - their obvious love for one another, their slightly tentative way in the world, the stress and fear and resilience of months and years of treatment worn deeply on their faces. Instant connection.

A week of trying new things and keeping busy, but mostly a week full of ordinary people giving whatever they have - a fast boat, gentle horses, delicious food, their skills, their business - and then adding the extraordinary gift of their time to make the lives of children and their families better. I'm sure they were Democrats and Republicans, well-to-do and counting on their next paycheck, deeply religious and atheist, but they are all selfless heroes for some time each summer. Giving of themselves for no obvious reward.

This summer we were given gifts most precious - the kindness of strangers.