Amy Jaffe Barzach

Advocate for Children of All Abilities

West Hartford, Connecticut

I'd given up on all the usual words, now I was searching for the magic ones -- words that would make the pain go away. It was just after New Year's when I lost Jonathan, my baby son, to spinal muscular atrophy. And I was stuck. Everything I read in books and magazines made sense, but nothing took the pain away.

Just before Jonathan died, I had sat with him in the hospital, his little hand clasped in mine, his three-year-old brother, Daniel, entertaining us with songs on his guitar. A copy of Parade magazine was on the table. On the cover were the words, Deal With Loss by Celebrating Life. The meaning struck a chord in me, but its full impact was yet to come.

Jonathan died three days later. The despair that followed was unbearable; the days were difficult, the nights were worse. Searching for comfort, I came across a passage in The Prophet by Khalil Gibran that talked about celebrating life as a way of dealing with loss. I looked up from my book and saw the little memorial card my husband had made for me, which included a picture of Jonathan and the words from the Parade cover, laminated together.

This time, the words took a grip on me and wouldn't let go. I began to cry uncontrollably; but the tears felt different, like a new beginning. It was as if the darkness that had surrounded me for the past few months had lifted.

Deal with loss by celebrating life.

I remembered a sunny day shortly before Jonathan had become ill. I had taken him and Daniel to a playground, and while Daniel frolicked, I rocked Jonathan in his carriage. Suddenly, I noticed a little girl sitting in a wheelchair on the sidewalk, sadly watching the other children. Her fingers tightly gripped the spokes of her wheelchair; her little chin quivered as she tried to hold back her tears. She longed to be joining the other children at play, but with no accessible path to the equipment, she couldn't get close. And even if she could, there was nothing for her to do. Not one part of the playground was available to a child in a wheelchair.

The image of that little girl sitting on the sidelines continued to haunt me while Jonathan was struggling for life in the hospital. Now here I was at my desk, thinking about how to celebrate Jonathan's life. I had my answer.

What if I built a playground where all children could play? Wouldn't that be a true celebration of life?

The idea stayed with me through the next few months, as I struggled to find the strength and courage to begin the work. I started slowly, enlisting the help of my family; I recruited volunteers -- more than one thousand of them. My husband made little memorial cards, just like the one he'd made for me, for our entire family. We carried them with us everywhere, and to this day, I still find them unexpectedly in the pockets of something I am wearing.

But as April 1st of that year approached -- what would have been Jonathan's first birthday -- I was once again plunged into despair. I'd see other babies who looked about a year old and my heart would break all over again. I longed for Jonathan.

Rather than run from the date, my husband Peter and I decided to have a party on Jonathan's birthday at the local hospital. We arranged for a storyteller and a singer to entertain the children. We spent the day crying tears of joy and tears of sadness.

We celebrated the day. And we survived the day.

Eighteen months from the day I'd first read those insightful words, we opened our special playground. We called it Jonathan's Dream. The moment I saw children in wheelchairs rolling up the ramp to the equipment, I was overwhelmed with tears of happiness.

Here were kids of all abilities, playing and learning together.

They were celebrating life. And I was celebrating Jonathan.