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How My Granny Stopped Me From Grieving Our Down Syndrome Diagnosis

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In the past four years, I’ve read many diagnosis stories, and I realize that I appear to be one in a small minority of people who didn’t cry or grieve after their child’s official Down syndrome diagnosis. I could never quite figure out why.

For a while I thought I could be in denial, but I don’t think denial about a child’s diagnosis could last almost five years. So I chalked it up to my previous positive interactions with people with Down syndrome and my pervading premonition that I would someday have a child with Down syndrome. Also, I already had a boy and girl with typical chromosomes. I’m sure I would have taken the diagnosis harder if Kyle had been my first child.

Those explanations worked for me, but then I had a revelation as I drifted off to sleep the other night. I think the reason I didn’t grieve Down syndrome likely has nothing to do with Down syndrome or my other children. It has to do with my Granny.

Granny with her second great-grandchild, my Bud.

First, I believe more in providence than coincidence. So when my Granny was born on March 21st in the early 1920s, almost 90 years before the first World Down Syndrome Day was observed on March 21st, 2012, the plans for my mom, me and Kyle were already in the works.

I can remember many of my conversations with my Granny word-for-word. But one I wish I could still recall is the phone conversation we had after my 20-week ultrasound when I was pregnant with Kyle. As most of our phone calls went, I’m sure it started like this: “Hello?” “Hi Granny!” “Oh, hi, Sweetheart!” Then I must have 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’s 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’d gone with my mom to the hospital to visit my Granny after her bladder procedure. While I was there, the doctor came in and told us Granny’s kidneys were producing tumors that were spreading into her bladder and that her kidneys were functioning at a 3-4 (4 was the worst, 5 complete failure). At her age, there wasn’t much they could do.

Granny with her first great-grandchild, E.

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.

In the meantime, I went on a trip to visit my sister. I was 25 weeks pregnant and only had two kids at home to leave with Daddy. On my Granny’s birthday, my sister, her husband and I (and technically, Kyle) drove a few hours away to visit a national park.

We didn’t realize that driving through the mountains would kill all of our phone batteries, so when we tried to call Granny for her birthday, none of our phones had power. It was frustrating, but there wasn’t anything to be done about it, and we resolved to call her the next day. Honestly, I can’t remember if we did or not.

When I returned from my trip, I visited Granny and brought her the birthday presents my sister and I had picked out for her. The minute I saw her, I was floored by her appearance. Her face was sunken and skeletal where fullness had once been. She noticed my gaze and admitted she didn’t look like herself. It was alarming. I left her apartment to go grocery shopping 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?

Her doctors, her children and she herself debated the pros and cons. Right until the last day it seemed there was no decision. But Granny, being who she is and realizing there was no other option, pushed to have it. 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 extra chromosome.

I’ve never lost anyone in my entire life who was as close to me as my Granny. My Grandpa (her husband) had died a few years earlier, but he was a quiet man of few words, and we rarely had the conversations I had growing up with Granny. She’d seen me through everything and supported me in every way. She was my biggest fan.

As you can imagine, I felt her loss deeply. It was the kind of loss where weeks later I would wake in the early hours of the morning filled with despair and just cry. I didn’t know it was possible to miss someone so much. We got through her funeral, and I cried most of the four-hour drive home (she was buried in her hometown).

Once, a few weeks after Granny died, I was going through my old phone messages. I’d saved one from her and forgotten about it. It was from days before my trip to my sister’s, and my Granny’s illness was undetectable in her usually upbeat voice. She was thanking me profusely for ordering a rosary online for her to give my cousin. He was becoming Catholic at Easter, which was something she’d longed for his entire life. When I heard that message after she died, I hit bottom. The despair was crushing. I fell to the floor and sobbed, thinking about how I would never hear her voice again.


Just weeks later, my parents were cleaning out my Granny’s apartment; it was coming up on the last days of the lease. My dad needed my husband’s help loading things on the trailer, so my mom, the two kids and I hung out at the apartment poking through my Granny’s things. It was bittersweet. The last time I’d seen her alive in that apartment was the day I brought her birthday presents. Now I was packing those same presents in a box and taking them away.

The next morning, my husband, two kids and I rushed to the hospital. Within 30 minutes, Kyle was born. He was my first child who would not be in a photograph with my Granny.

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

I wouldn’t doubt if my Granny’s spirit had been nearby the day Kyle was born. I can imagine her whispering in my ear, taking the fears away. Thank you, Granny. I miss you, and I look forward to seeing you in my dreams.

This post originally appeared on for Elysium.

Originally published: January 26, 2015
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