September 27, 2020, marked my son Steve’s fifty-fourth birthday. And has been the case since his death almost five years ago, I approach his “national holiday” with a mixed bag of emotions. Steve celebrated his birthday month early and often, accompanied by the frequent comment, “I teeny bit nervous. I never be (insert age) before.”
I clearly remember his first birthday, celebrated with my dear friend Jane and her three children: Jamie, Heather and Sean. We all sprawled on the floor, not an easy task for me at seven months pregnant. Steve, not yet able to sit unsupported—pivoted on his tummy, arms supporting his trunk—while each gift was unwrapped and placed within his reach. Colorful pop-it beads, an hourglass filled with shimmering sparkles, a large plastic hammer, a VERY noisy metal rattle…all competed for his attention. Along with the crinkly wrapping paper and a line-up of birthday cards, which Steve delighted in knocking down—over and over. Later he sat at his feeding table, a pillow wedged between him and the back of the chair and dug into his chocolate cake with both hands smearing the rich brown frosting all over his face and hair as Jane’s children cheered him on. In many ways, a typical one-year-old birthday party.
Steve’s forty-ninth birthday, on 9/27/2015 was quite different. Held in Burlington, Vermont, at his condo—of which he was so proud—his brother Josh attended along with my wife Sue. But to my everlasting regret I was 3,000 miles away in Bellingham, Washington. It was one of the few birthdays of Steve’s I missed. And, of course, I had no idea it would be his last. But I don’t think Steve much cared. As expected and “required,” there had already been several parties—one at work, another a movie date with a close friend. It was never about who was present and more about the event itself. Any chance to be in the spotlight. And in spite of his yearly comment, “I no like clothes for my birthday, here he is striking a pose wearing a new jersey he received that day. Taken by his live-in caregivers, Mattie and Sean, and sent to me, it is the last photo I have of Steve.
Now, in 2020—a year which defies description—I find myself focused on a single emotion. I am GRATEFUL. Grateful that Steve didn’t have to experience a year of what would have been a continuum of losses. Loss of his part-time job. Loss of in-person daily support services. Loss of the anticipation of up-coming new movie releases and then counting down the days before he and his buddy Dave would attend Opening Day at their favorite movie theater. Loss of visits to his favorite thrift stores. Loss of his monthly visit to his barber and his request for “buzz cut, please.”
However, I am also grateful for one much anticipated gain: the publication of my memoir, Heart of This Family – Lessons in Down Syndrome and Love. Over the past six weeks, Steve’s light has shown brightly. As I receive feedback from an ever-expanding group of readers, I’ve learned that my “target audience” is far broader than I’d ever imagined possible.
“Your book is for everyone. It is the story of a journey, and we are all on our journeys.”
“Your book is not only a compelling and deeply affecting memoir, it is also an important document on Human Services, gender equality and personal freedoms, as well as education.”
“I finished your deep, honest heartfelt book!! So glad it’s in the world. I really experienced something of your journey. The ongoingness of both the joy and the pain.”
“I spent yesterday reading the rest of your book…I couldn’t put it down…a sure sign of a great book for me. It gave me a chance to see that through the difficult times there emerged a life well- lived and accomplished. Steve touched the hearts of so many and gave them such joy.”
“You and Sue are an inspiration to many and have been such a positive influence on so many and continue to give so much to the world. Your book is amazing and has touched me deep in my soul.”
“I’m loving your book and can relate in so many ways! But when I reached the part about Steve’s date in court for the guardianship hearing I laughed out loud and it brought me back to the same day for K! I am laughing my ass off! Imagine, having to become guardians for your own child after all the love, joy, heartache and tears of the past 18 years!”
“I was so moved by your book that at times I was laughing and other times crying. Thank you for taking the past eight years to work on your memoir. It is rich with love for your family.”
“It was interesting for me to compare and contrast Steve’s life, mannerisms and habits with those of S. I loved the book.”
“I am on the second read through your book. I am especially touched by the part Sue played, and how close she was to Steve.”
“You win today’s prize for most tissues used! I believe your Steve giggles every time a page gets turned in his story.”
So today, on your birthday Steve, I celebrate you and the gift of your life. You live on in my heart and the hearts of so many. You continue to teach me. You are a light and a force. I feel your presence. I love you.