The Child That Died Is Always Included
I Will Always Have Four Daughters
“Forsaking aching breaking years, the time and tested heartbreak years. These should not be forgotten years.” From ‘Forgotten Years’, by Midnight Oil, 1990
When our daughter Michaela died, suddenly in her sleep on May 23, 2009 at age five and a half, we instantly knew that we had experienced the worst possible grief.
What we didn’t know is that we would re-experience the same grief, in little pieces, over and over again throughout our lifetimes.
My wife Gabriella (“Gabi”) and I were excited to become first-time parents. In the spring of 2003, we sold our small NYC apartment (it was called a “Brownstone One Bedroom”, all 325 square feet of it) and moved to Atlanta, Georgia so that I could attend the business program at Emory University. Gabi started a new journalism job with a boss whom she loved. We were a young couple united in hope for a fresh start in a new place, and looked forward to a wonderful new addition to the family.
Michaela Noam Kaplan was born on October 18, 2003, and having suffered a brain injury at birth, began having seizures 24 hours later. Like all parents, we were thrust into the unfamiliar world of raising a baby; in our case, this also included over a month in the hospital, and then the care, feeding and upbringing of a Special Needs child.
Our exhaustion as parents was only exceeded by our resolve and passion for giving Michaela the best life possible. We moved to Michigan to be near family. We took Michaela to therapies and surgeries across the country. We travelled with her internationally, to weddings in Panama and in Israel.
Since Michaela did not consume enough nutrition orally, she had a G-tube which we used for feedings, primarily at night. I can still hear the rhythmic din of the kangaroo pump in Michaela’s room as it slowly delivered her daily caloric intake. Gabi told me later that she only half slept during those years.
We loved being Michaela’s parents, and decided to have another child. And then another. On May 11, 2009, our third daughter Maayan Rachel Kaplan was born at Sinai Grace Hospital in Detroit, MI. She was soon joined at her mother’s bedside by sisters Michaela (5) and Ayelet (2). On May 22, 2009, Michaela went to her grandparents house for a sleepover, and did not wake up the next day, one of 585 five-year olds and 41,640 other children under the age of 17 who died in the U.S. that year.
The parents of these children, like all parents of children who have passed away, are almost always immediately confronted with another painful reality: Not only will they have to carry the pain of a dead child in their hearts forever, but also, throughout their lives, seemingly well meaning people will say (or not say) things about their child that will drive a knife through their hearts over and over again.
I have, and will always have, four daughters. Usually, when I tell people that I have four daughters, I also share that one of them has passed away. Just recently, someone asked me if the count of four daughters includes Michaela, as if I might have somehow forgotten her in my original tally.
Most people will simply say a perfunctory “I’m sorry,” and then go completely silent, thereby making it my responsibility to assure them that the Cosmos is still operating, and that they can go home and hug their child, even though I am unable to hug mine.
These two approaches — denying her rightful place in the #1 spot and silence — feel like acts of violence against us.
A far better approach would be to ask about Michaela the person:
- What did she like? Pickles, the wind, riding her adaptive bicycle, her father’s embrace.
- What didn’t she like? Being fed through the mouth when tired, her exercises (what child would enjoy three hours of intensive stretching and physical therapy of tight, unyielding muscles?), choking on her saliva.
The best way to keep Michaela, our forever eldest, alive, is to talk about her, and to focus not on her death, but on her at once exhilarating, frustrating, and triumphant life. In short, a story worth telling, and a life very much worth living.
Please share this story with others so that they too will know what to say when they encounter a parent who has lost a child. I have written elsewhere about how the death of a child puts immense pressure on a marriage. You may find that story meaningful as well.
