Off the Charts

By Karen Roush, MS, RN, FNP-C, AJN clinical managing editor

Photo taken by author at a church in Switzerland

Today is my son’s birthday. I remember so clearly the day of his birth, the overwhelming sense of recognition the first time I saw him, as if I had known him forever.

April 16^th is the anniversary of his death. When a birth is so closely followed by a death, they are forever intertwined. I remember watching him sleep, how he turned to the music when I turned the key of his music box and “It’s a Small World” unwound its notes against the side of his warming bed. I remember his three-year-old brother holding him, sitting in the rocking chair in their father’s lap. I remember rocking in that chair three weeks later, holding him against my chest as his few last breaths faded. I remember the long walk back down the hall, the drive home, the blur of a funeral. And then the first long cold winter, visiting his grave day after day, distraught that my baby lay in frozen earth, unprotected from the cold. And the months that stretched on into a future I sometimes couldn’t bear to think about, because I couldn’t imagine my way out of the pain of grief into a day when I would feel joy again.

I was grieving. I listened for the phone, certain the hospital would call any minute to tell me it was all a mistake. I couldn’t eat and lost weight. I cried, sometimes suddenly in public places—waiting in line at the bank, stopped at a red light. There were times the pain engulfed me and I wondered how I could possibly continue to live when my child was gone, dead forever. I couldn’t sleep. People assured me he was at peace, but if that was so then why did I hear him crying at night?

We are allowed a year to grieve. When that first anniversary was approaching, I dreaded it. Grief kept me connected to my son. Everything that had happened in that year was a first: the first Christmas, the first family vacation, and—so close to the anniversary—the first birthday. I did not want time to take me any farther away from the last time I’d held him, from when he was alive.

But it did. And slowly I healed. The pain, which had been a searing spotlight that obliterated everything else, began to dim until finally it was a small soft light in the distance. I don’t remember how long—two years, maybe three. But it eased, and I found my way back to joy again.

Now, according to the draft DSM-5, I would be allowed two weeks to make that journey before being diagnosed with a mental illness. Continuing symptoms after that—sadness, sleeplessness, crying, loss of interest in everyday pleasures—would represent pathology. At two weeks I was just beginning to realize the finality, the enormity, of what had happened. How do you say goodbye to someone you love deeply in two weeks? Did my child’s life mean so little that I should have been able to shake it off and get on with it after two weeks? Is any life that insignificant?

There will be those who need professional help. Some people get stuck in the pain or the pain is so overwhelming it engulfs their lives. But most of us just need support, acceptance, and understanding. And time.

Today is my son’s birthday. I will celebrate his birth. But, like every year on his birthday, the pain flares up, bright enough to hurt my eyes but no longer bright enough to blind me. I will continue to miss him until enough days have passed that represent the time he should have lived. In other words—I will grieve for him always. I am not mentally ill. I do not have a depressive disorder. I do not need medication or counseling. I need to be allowed to feel both the pain and the joy that loving someone, even with a life so short, inevitably brings.

(Editor’s note: this post was written on March 26, two day’s ago.)