364 Days of Remembrance

Interesting juxtaposition – the last posting here was a lighthearted commentary about a dark mood on a particular birthday one year. This posting is a heavyhearted commentary about a dark mood on a particular birthday every year.

Danny would have been 19 today. It’s the darkest day of the annual “Danny calendar” for me. As his illness progressed from diagnosis through treatment and eventually to his death and burial, a Danny calendar began to develop in our lives. We mark days on that calendar that are of no particular meaning to anyone else. Those days range from initial diagnosis on November 19 to things like the removal of his orthodontic braces on January 23 in preparation for a bone marrow transplant that never happened. We take note of hospital admission and discharge dates; relapse dates; dialysis dates; a minor stroke date. We also note bittersweet dates like the celebration of what we thought was the end of treatment in June 2001 and the trip to Japan in July and August that year that was a well-deserved reward for that milestone.

But for me, May 27 is the nadir date in this annual trek through mountains and valleys. This day has become the antithesis of a birthday celebration. How do you mark the birthday of a boy who died two months before his 15th birthday? The birth/death incongruity in this day is a two-edged blade that has no handle – it cuts us no matter how we hold it. It’s easier to mark his death date, because the sequential numbers just keep coming and the count won’t stop until the day we die. Even then, the numbers will continue to come one after the other for several decades, until everyone who knew Danny is gone.

But the passage of sequential birthday numbers for Dan stopped at 14 on May 27, 2001, ironically at a time when we were filled with great hope and anticipation of the end of treatment and a return to a normal life for a young man who deserved a break. Now, we’re left to mark this day by saying, “Dan would have been…” That’s a sentence that is at the same time empty and filled with sorrow.

This is a day not just of sorrow, but a day of anger for me. When Dan was diagnosed in late 1997 he had an 80% chance of “event-free survival” five years later. Someone said, “If you have to get leukemia, this is the best kind to have.” But, sometimes, the “best” isn’t good enough. For reasons we don’t understand and probably never will understand, Dan drew the 20% short straw. And so did we; and sometimes anger is all we can feel because we don’t know what else to feel. Sometimes, sorrow isn’t good enough.

We know there is much to celebrate about Danny’s life. He was a Category 5 kid who flowed over and sometimes breached our levees. His personality would flood our home and his high-water marks are clearly visible on our walls! Those marks trigger many memories; they produce the soothing stories and warm smiles of remembrance and at times they come close to celebration.

But not on May 27th. At least not for me. Today, I mourn. Tomorrow, I will return to remembrance and the hope for celebration.