Living this complex medical life, a family comes across others facing similar challenges and bonds with them over the shared experiences. The community formed is one of mutual respect and support, of celebrating the little triumphs each of our children experiences. The down side is: we grow to know and love these children & families & we experience their loss along with them when one occurs. There are weeks in our complex medical community, where children end up inpatient who were recently doing well or multiple children die on several days.
In 5 years living this complex medical life, the losses have been significant. There is never a time when the death of one of our community’s children is an easy loss. Some of the children and families were not well known to us when their child died; others became fast friends, people who you meet through social media but one day get to know personally as they come to town for a procedure or second opinion. 9 months ago today, one of my “fast friends” suffered the loss of her 4 year old child- undiagnosed, beautiful, cherished. She is in my thoughts and we connect nearly every day.
I try to be what support I can, knowing that there is nothing I can say or do to ease the emptiness she feels in her heart for her son. What I can and DO do is ask how the day is going, wish her some peace to dull the ache for a few moments, talk to her about her son and share with her my memories of him. Listening and remembering are never over-rated.
Yesterday, to honor Mason’s birthday, my kids decorated rocks I had collected on Martha’s Vineyard during a ‘pre-kids’ vacation. Each of my children wrote Mason’s name and drew something they thought he would like as a 5-year-old. My son drew a fire-fighting helicopter with Mason as the pilot. My youngest drew a birthday party with cake, balloons & all the fixings. My older daughter drew hearts and stars as symbols of love and light in “The Next Place”, where they talk about their friends being, altogether, well and happy.
We took these rocks and several smaller rocks with the names of children who have died in the past, as well as one who died yesterday, and traveled to the beach to cast them off into the ocean. With each stone, we said the child or children’s names. My kids threw them as deep into the surf as they could manage. They yelled: Happy Birthday, Mason! and waved as the surf crashed over their messages and carried the rocks off. It was a bittersweet trip to the beach for us but a wonderful way to honor the memory of friends. We will wish for a day when there are no more stones to cast. Yet everyday, we will remember.