Keeping Your Child’s Memory Alive

There are no words to dispel your feelings at this time, and there is no time that will ever dispel them. I cannot share your grief, because no one could share mine. When one of your children goes out of your life, you think of what he might have done with a few more years, and you wonder what you are going to do with the rest of yours. Then, one day, because there is a world to be lived in, you find yourself as part of it again, trying to accomplish something–something perhaps he didn’t have enough time to do. And, perhaps, that is the reason for it all. I hope so. — Joseph Kennedy, President John F. Kennedy’s father, in a letter to a grieving friend whose son had also died

We lost Sadie on November 19, 2013. It’s a day ingrained in my memory. One I’ll never forget, no matter how hard I try.

After her passing, I realized I had two choices. I could focus on the terribleness of the day, the what ifs, the pain–or I could focus on the amazing memories she gave us, the indelible things she taught us, the joy she brought us. I chose the latter.

I didn’t want to mourn her death; rather, I wanted to celebrate her life.

This “celebration of life” was put into motion shortly after her passing. My husband and I took a long car ride to visit family for the Thanksgiving weekend, just days after she left us. Miles and miles of numbness. Staring out the window wondering–how did this happen? Why us? Why her? It all felt so incredibly unfair.

It was on this car ride that we began thinking about how to honor her life. With her fourth birthday approaching the following April, we knew we wanted to do something special. Something that would be a celebration. Something that would bring joy to all who knew her.

Random Acts of Kindness

We had always been overwhelmed at the support shown to our family after Sadie’s diagnosis, and had often wished that we had the ability to give back in some way. So, we decided, what better way to celebrate Sadie than to share random acts of kindness. I took out a piece of paper and we began a list of acts of kindness that could be performed in Sadie’s memory.

This list was then shared with friends and family who attended a “Celebrating Sadie” event, held in honor of her fourth birthday. Each team was challenged to perform as many acts of kindness as possible in a three-hour time frame. Some of the tasks included writing a letter to a soldier, paying for the person behind you in the drive-through, and donating items to an animal shelter.

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The story was picked up by bloggers, local newspapers, a website titled The Mighty, and even Khloe Kardashian (true story). While the acts of kindness will never replace the hole in our hearts, they help to bring joy in.

We parents of children who are medically complex travel a challenging path. Some call it chronic sorrow–a pain and loss that never subsides. Sadly, many of us will lose our children before they lose us. And, while everyone’s grief is different, I can say that honoring Sadie’s memory has led to much joy and moments of happiness in grief.

Other Ways to Keep Your Child’s Memory Alive

Unfortunately, many other parents are members of this club–the club that no one wants to join. Here are some stories from some pretty remarkable parents who are honoring their children’s memories in various ways.

We celebrate the short life of Tess Gary first by talking about her on a regular basis to our other two children, especially to her identical twin sister, Kate. Tess was such a fighter, with clear determination and we compliment these same traits in Kate. Through the primary nurses who took such wonderful care of her, we became connected with a non-profit organization—Bee Mighty. Bee Mighty provides funding for medical therapy and equipment to Neonatal Intensive Care Unit (NICU) graduates and helps close the gap between needed therapies and the amount which insurance covers. Had Tess lived, she would have needed a lifetime of care and we could have benefited from Bee Mighty. Some of the families served by Bee Mighty unfortunately experience the loss of their child and we have been able to share our experience with them to help them in their grief process. The other main way that we celebrate Tess’ life is through the endowed scholarship fund that we set up in her name at Queens University of Charlotte (where I was working when she passed away). The Tess Gary Memorial Scholarship Fund provides funding for students to receive a high quality undergraduate education and she will forever be known to those students who received scholarship awards in her name. — Susan Gary

I honor my daughter, Melissa, in multiple ways. Daily, through my work with Normal Moments, a nonprofit founded in her memory to support parents with critically ill children. Normal Moments helps to alleviate home stresses by providing services such as house cleaning and yard maintenance so parents can spend as much time as possible sharing normal moments with their child. I also honor Melissa’s memory by doing things she loved to do–like playing the violin and fostering dogs. Because, in her final days, Melissa went through septic shock with cascade failure of all of her organs, I donated a kidney to a child with polycystic kidney disease. I saw how much it destroyed one’s ability to truly “live” and be a child. In this particular case, I got to save a life as well, which I couldn’t do for Melissa. — Patricia Fragen, founder, Normal Moments

My son Danny died–suddenly and unexpectedly–of a seizure while he was sleeping on December 12, 2009. I am still at a loss. However–and of course–we must go on. And going on requires honoring Danny. I do this, most consciously, by keeping him present in his brothers’ and sister’s lives. I talk about Danny–inject him–here and there when the moment is right. I don’t do this because they don’t remember Danny; I do this to demonstrate that it’s okay to talk about Danny and it’s okay to remember him with a happy heart rather than a heavy one. It’s a big deal, I tell them, that Danny is your brother. It’s a big deal that we celebrate him in our thoughts and in our words. And it’s a big deal, I will forever tell them, that your brother Danny lives in your heart–and you need to take care of him there: you need to value and to revere a love that will never die. — Mike Stanton, Founder of the Danny Did Foundation, a nonprofit committed to advancing awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP)

My older daughter, Emelia, has been absent in my life for fifteen years–can it really be that long?–but her presence will forever be a significant part of who I am. I began to journal on a regular basis after Emma’s death and putting words on the page has helped me to keep her memory alive, honor our relationship, and work through my grief. Emma passed away in the month of December, shortly before her eighteenth birthday, and every year before the holidays I schedule a solitary, two-day retreat at a nearby state park. Those two days are spent remembering, writing, reading, looking through photograph albums, and quietly celebrating her life. My sister created a DVD of my daughter’s life, which has become a balm for my heart and a poignant reminder of the joy she brought to the lives of those who knew and loved her. I am thankful for Emma’s continued presence in my life and the healing gifts of time and love. Just as each of our children are unique and different, so are the many ways in which we remember and honor them. — Denise Park Parsons, author of Touchstone: A Life Unseen

Cathy McCann is the mother of Sadie Elizabeth McCann, who was diagnosed with Aicardi Syndrome, a rare genetic disorder. Sadie was born on April 29, 2010 and earned her angel wings on November 19, 2013. Cathy is a freelance writer, grant writer and researcher. To learn more about Sadie and her adventures visit her blog at http://sadiemccann.blogspot.com or on Facebook at www.facebook.com/FriendsofSadieMcCann.