Expecting a Child – Trisomy 18 Foundation

Trisomy 18 Foundation

“For those of us who have lost a child to Trisomy 18, Mother's Day can be such a painful day -- especially the 1st Mother's Day after our child is gone. And if we have no other living children, if this loss was the loss of our first and only child, we can wonder if we even have a "right" to be included among the "real" mothers that we are inevitably surrounded by on this day. I know I dreaded my first Mother's Day after losing Isaac. When that day came, just 3 months after losing him, I was overwhelmed with sadness and anger--the injustice of there being this wide gulf between what I had looked forward to fantasizing about my first Mother's day during my pregnancy and what the reality of this day actually became.  I felt so cheated! My kitties and husband stayed very close to me that day, just being comforting, which is what I needed. To just stay physically connected in loving ways. Mother's Day these days is still bittersweet as my husband and I did not have the gift of other children after Isaac.  But I'm very lucky to have a caring Mother-in-law who always remembers Mother's Day and sends me a card from Isaac--something like what I imagine he and his Daddy would go pick out together at the Hallmark shop. She does the same thing for my husband for Father's Day, and it is so dear. What I know today that I didn't know then is that Mother's Day is inextricably tied up with grieving and loss from its very origins as an official holiday in the United States. Anna Jarvis, who is credited with "inventing" Mother's Day, sat at the bedside of her dying mother on the 2nd Sunday in May 1906 in Crafton, West Virginia. This mother's life was marked with the sadness of losing seven of her children at early ages. Only Anna, a sister, and two brothers survived to adulthood. On that day of great loss for Anna, to remember and honor her own dying Mother who had lived her whole life long knowing the great loss of a child, Anna vowed to organize something that would honor all mothers. That effort became "Mother's Day" in 1914 when President Woodrow Wilson made it an official national holiday on the 2nd Sunday of May each year--the day Anna's mother died. We are among those honored and honorable Mothers who, like Anna's mother, know the immense loss of a child. Death does not end a Mother's love. And like Anna, for some of us, our loss drives us to look for ways we can make a difference in the world. My loss of Isaac led me to start the Trisomy 18 Foundation to help future mothers who were experiencing the pain of loss that I experienced. The Trisomy 18 Foundation works to create a world where Trisomy 18 is treatable, or even preventable, and it is through the tireless efforts of the many, many mothers who have experienced this terrible loss that we are able to help change the future for children diagnosed with this condition. This Mother's Day I walk beside each Mother as my sister. We walk together as we mourn and remember the many, many children with Trisomy 18 who we wanted with us today and every day. We walk together as we honor those Mothers among us whose child with Trisomy 18 is still with them, holding her up through this time waiting for their birth, or caring for their many daily needs, cherishing each day granted that child on this Earth. We walk together as Mothers always because our journey is a shared one. A journey of shadows and of light.”
— Are We Supposed to be Able to Celebrate Mother's Day?
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Posts in: Expecting a Child

One Dad’s Moving Story of Becoming a Trisomy 18 Rainbow Dad

Many times, the voices we hear are mother’s voices in the Trisomy 18 community.  But our Fathers have an equally important experience with their child, impacted by a Trisomy 18 diagnosis.  Bo Smolka, a member of the Trisomy 18 Foundation Board of Directors, wrote this piece after the arrival of his new daughter, Katie who […]

10 Things You Wish People Knew about Trisomy 18

This year, in the days leading up to Trisomy 18 Awareness Day on March 18th, we asked our amazing supporters what were the Top Things We Wish People Knew about Trisomy 18. Over and over again, you shared what you wished people and other parents knew about having a child with Trisomy 18, and it […]

Are We Supposed to be Able to Celebrate Mother’s Day?

For those of us who have lost a child to Trisomy 18, Mother’s Day can be such a painful day — especially the 1st Mother’s Day after our child is gone. And if we have no other living children, if this loss was the loss of our first and only child, we can wonder if […]

The Trisomy 18 Foundation’s Director Gives Talk at National Conference

At the Trisomy 18 Foundation, we work to educate healthcare professionals who are on the front lines of delivering a Trisomy 18 diagnosis. Last month, our Executive Director Victoria Miller spoke at the National Society of Genetic Counselors Conference in Seattle, Washington.  We regularly build relationships with Genetic Counselors who are important allies in helping […]

Improving Access to Medical Literature for Parents and Families

Our new Clinical Literature Resource improves access for Parents who often encounter challenges accessing the relevant medical literature that allows them to fully participate as informed advocates for their child. The Foundation has long advocated with coalition partners for Free Public Access to federally-funded peer-reviewed literature which is usually restricted to a pay-per-article system that […]

The Problem of Decision Making While in Shock

By Heather Morgan It is important to stop and process the news of Trisomy 18 before making any quick decisions. Maybe it was just this morning. You sat in the doctor’s office after your ultrasound. There had been too many long, awkward silences. You knew that something was wrong. Maybe it’s spina bifida. You’ve heard […]

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Trisomy 18 Foundation
PO Box 320
Flushing MI 48433