The Gift of Grief: How a Death Helped Me Process My Son’s Down Syndrome Diagnosis

From the diagnosis stories I have read in the years since my son Kyle was born with Down syndrome, I appear to be one of a small minority who did not feel grief after a child’s official diagnosis. I could never quite figure out why.

I chalked my lack of grief up to previous positive interactions with people with Down syndrome and a premonition that I would someday have a child with Down syndrome. Besides, I already had a boy and girl with typical chromosomes. Surely I would have taken the diagnosis harder had Kyle been my first child.

The explanations worked for me until I had a revelation: the reason I did not grieve Down syndrome might have nothing to do with Down syndrome or my other children. It has to do with my Granny.


My Granny with her first great-grandson, my Bud.

I believe in providence over coincidence. So when my Granny was born on March 21st in the early 1920s, almost ninety years before the first World Down Syndrome Day was observed on March 21st, 2012, the plan for Kyle was already in the works.

Sharing the News

There are many conversations I had with my Granny that I can remember almost word-for-word. One I wish I could still recall is the phone conversation we had after my 20-week ultrasound when I was pregnant with Kyle. I told her the results from the ultrasound (bilateral clubfoot plus one Down syndrome marker), and in classic Granny style, her response was more than encouraging. As much as I wish I could conjure up her exact words, it is enough to remember her reassurance and her proclaimed belief in my power to handle anything.

The ultrasound was in early February, 2010. The previous month I had gone with my mom to the hospital to visit Granny after she had a bladder procedure. While I was there, the doctor came in and told us her kidneys were producing tumors that were spreading into her bladder, and that her kidneys were barely functioning.

My Granny would do whatever she could to extend her life. She wanted desperately to watch her grandchildren and great-grandchildren grow up. So she decided to build her strength for another bladder procedure, which she believed would give herself a needed boost.

Granny reading to her first great-grandchild, my E.

Granny reading to her first great-grandchild, my E.

Granny’s Health Decline

In March, I visited my Granny and brought her the birthday presents my sister and I had picked out for her on a recent trip. The minute I saw her, I was floored by her appearance. Her face was sunken and skeletal where fullness had once been. It was alarming. I left her apartment and couldn’t let go of my worry. If she looked that emaciated, how would she be nourished enough to get through her bladder procedure the following week?

Right until the last day it seemed there was no good answer. But Granny being who she is and realizing there was no other option, she pushed to have procedure. Devastatingly, that procedure was the beginning of the end for my beloved Granny. She was never able to recover, and passed away 13 days later.

She was two months away from meeting her third great-grandchild along with his yet-unknown extra chromosome.

Processing the Grief

I have never lost anyone in my life as close to me as my Granny. She had seen me through everything, and supported me in every way. She was my biggest fan, and I felt her loss deeply. It was the kind of loss where weeks later I would wake crying in the early hours of the morning. I didn’t know it was possible to miss someone so much.

Once, a few weeks after Granny died, I was going through my old phone messages. I had saved one from her and forgotten about it. When I heard her upbeat, loving voice in that message after she died, I hit bottom. The despair was crushing. I fell to the floor and sobbed, realizing I would never hear her voice again.

Just weeks later, I helped my parents clean out Granny’s apartment before the lease ended. The last time I saw her alive in that apartment was the day I brought her birthday presents. Now I was packing those same presents in a box.

Death and New Birth

The very next morning (two months after Granny’s passing) we rushed to the hospital and within 30 minutes, Kyle was born. He was my first child who would not be in a photograph with my Granny.

birth photo
Relatively speaking, considering the grief that was still so raw within me, Down syndrome was nothing. I was holding a precious blessing.

My Granny gave me the gift of grief.

With her death, I grieved. With Kyle’s birth, I celebrated. It is no coincidence that her birthday is World Down Syndrome Day. Every year, not only do I celebrate Kyle, I celebrate my Granny’s life. I celebrate her birth, all the years we had together, and the way she would have accepted Kyle and his diagnosis from the beginning.

My Granny would have told me not to worry about Down syndrome. She would have hugged me and told me I could do this. She would have been Kyle’s biggest fan.

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

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