Navigating parental bereavement on Mother’s Day without Cammy

The first Mother's Day after the loss of a child is extremely difficult

Jackie Babiarz avatar

by Jackie Babiarz |

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I’ve had several titles in my life: sister, daughter, mother, wife, teacher, and coach, to name a few. But the latest one isn’t something I think I’ll ever get used to: bereaved parent.

I learned that there is a Bereaved Mother’s Day every year on the first Sunday in May. Like many other things, unless you are in this select club, you were probably unaware that there is a day to recognize parents who have lost children.

Last Sunday was my first Mother’s Day without my oldest daughter, Cammy, who passed away in December due to complications of Rett syndrome. It was an extremely complicated day of celebrating with my other daughter, Ryan, while Cammy was watching over us.

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Sun shines brightly

I woke up to several text messages wishing me a happy Mother’s Day with sentiments about understanding how difficult it would be. I looked outside and saw clear skies and the sun shining brightly. I thanked Cammy aloud for sending the beautiful weather.

In the morning, I met my sisters at the beach in Chicago where my mom grew up. We’ve gathered there every Mother’s Day since our mom passed away in 2018. We walk along the beach, share stories about our mom, and catch up. It’s one of my favorite traditions. This year, we soaked up the sun that we all believe Cammy sent.

My sisters shared all the things they think Cammy can do now that she is free from Rett syndrome. Images of Cammy cooking and dancing with our mom, playing sports with our dad, and running with our dog filled our minds and made us smile.

A shot from overhead shows a lovely pink orchid and a handmade Mother's Day journal.

The Mother’s Day journal that my family made 10 years ago and write in every year. (Photo by Jacqueline Babiarz)

When I returned home, my husband, Bill, and Ryan were enjoying the sunshine in our pool. I got in, looked up, and smiled again. Putting in that pool was the best decision we’ve made. Even though Cammy only got one summer in it, being there filled me with some amazing core memories of her happiness.

Then, our favorite neighbors who have become like family came over for dinner and yard games. Having dinner with them on Mother’s Day is my other favorite new tradition. They’ve been there when we were at our best and at our worst.

For Mother’s Day, I received a beach-cruiser bicycle. It’s the first bike of my own since I was a teenager. For a decade, I’d used an adapted bike to take Cammy for rides. That was the coolest bike and enabled us to go on family rides, giving us a sense of normalcy. It’s strange to ride by myself now, but I smile knowing that Cammy is riding her own bike in heaven.

Starting on Mother’s Day in 2014, Billy, Cammy, and Ryan have written in a Mother’s Day journal every year. It’s my favorite gift, and I look forward to it each year. As much as I was looking forward to reading it this year, I was completely grief-stricken knowing that there wouldn’t be an entry from Cammy. I both cried and smiled while reading the beautiful sentiments from Billy and Ryan.

I still don’t know how to answer people when they ask how many children I have. Do I say one, two, or one on earth and one in heaven? None of the responses feel right to me. The only thing I do know is that it has been a complete honor and privilege to be Cammy and Ryan’s mom.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.


Nancy O'Brien avatar

Nancy O'Brien

Thank you, Jackie, for sharing all of your experiences as the mother of Cammy. I'm so sorry for the loss of your lovely daughter. It's good that you meet with your sisters on a regular basis and share memories of your mom as well as other family members.
I have a granddaughter who will be nine soon. Darcy was diagnosed with Rett when she was seventeen months old. My daughter does a wonderful job of meeting the needs of her beautiful daughter and I do try to help out occasionally as needed.
I believe that your column has been and continues to be informative and uplifting for many families with Rett syndrome children and adults. Thank you again for what you do and God bless you and your family.

Karen Wagenbrenner avatar

Karen Wagenbrenner

Beautifully written Jackie 🥰
My heart melts reading this post. You are such a wonderful Mom! Inspiration to many of us Mom’s with Rett children/adults. Yes, I couldn’t agree more, you have Two children, one on earth and one in heaven! I can only imagine what it must be like to be Rett free in heaven 🙏 Thank you for sharing


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