Theme: Legacy and memory-making
The parents of a son born with an extremely rare genetic disease known as Microcephaly Capillary Malformation Syndrome talk about his impact on those who met him. The father recalls the time a barber went with him to the hospital to cut his son’s hair and the meaningful response that followed.
Theme: Legacy and memory-making
The painting at the end was a beautiful keepsake, but it was also about the memory we created doing that and the response that they had to that activity.
Theme: Legacy and memory-making
The father of a son with SanFilippo Syndrome share that their son’s legacy isn’t a cure for the disease but how he called his siblings and parents to grow and become wiser and more engaged people. “He gave us way more than we gave him. We got so much out of Ben.”
Theme: Legacy and memory-making
A mother and father reflect upon the various ways in which they grew as they kept the family together and cared for and advocated for their son.
Theme: Legacy and memory-making
A mother and father describe the various ways they are memorializing their 8-year old son who has recently died. Part of his legacy is that mom is now studying for her MSW to help future families.
Theme: Legacy and memory-making
Parents of a son with SanFilippo Syndrome talk about how their son brought so much goodness into their life, including spiritual and emotional support.
Theme: Legacy and memory-making
Today my youngest daughter, Eliza (the newborn on the right), graduated from her elementary+middle school of 10 years and will be entering a new high school in the fall. Two days ago, my oldest daughter, Taylor (peeking out on the left), graduated from high school and will soon embark on a Gap Year before entering college. Their sister, my middle daughter Cameron (center), wasn’t present for either of these milestones. She died of a genetic illness at the age of two, 14 years ago, when Taylor was four and Eliza was ten weeks old.
I thought about Cameron at both graduation ceremonies but not because I felt she was missing and should be there for her sisters. I thought about her because I felt she actually was there, in her sisters. Eliza sleeps with a photo of Cameron under her pillow, and she experiences Cameron as a guardian angel watching over her. Taylor currently plans on becoming a pediatrician so she can work with families whose children are healthy and families whose children are sick.
Cameron also lives on in her parents. Her father, Charlie, learned guitar during her illness and finds happiness and peace when he is playing new songs in our back room. I know he feels Cameron especially when he is playing. And I have founded Courageous Parents Network as a way of connecting with and empowering parents whose children are currently living with serious illness.
Cameron’s presence in our lives in these ways evolved over time. Time is our most powerful ally when we are grieving. Everything takes time, but grieving takes the most time of all. And as the time passes, how we think on our child and what we do with her legacy shifts. It took 10 years after Cameron’s death before I understood that I needed to dedicate my professional energies to helping parents of seriously ill children; and it took another two years to conceive of Courageous Parents Network. I know I couldn’t have done it any sooner. As a mom we recently interviewed said about life after her daughter died not long ago, “I need to just keep moving forward. Each time you just keep moving forward, things happen. You know, whether you are the type of person who starts the foundation or runs a marathon to raise money or writes a book, or shares your child’s artwork, it doesn’t have to be big. But each small step moves you forward into finding that meaning for you.”
Courageous Parents Network is how I have made meaning of Cameron’s life and that of her beautiful cousin Hayden who had the same disease. It is my greatest hope that it helps parents, currently on this journey with their child, get through and find meaning in their Here and Now.
I invite you to watch my talk on the Why, What and How of Courageous Parents Network, delivered and recorded as part of CPN’s 2015 Social Innovation Forum award.
Theme: Legacy and memory-making
This time of year is a triple threat: the anniversary of my mom’s death, mother’s day and then her birthday in quick succession. This year marks 25 years since cancer took her from me and my four older siblings. She would be 75 this year. And it marks something else. It marks the first Mother’s Day knowing that I will outlive my only child, Cora. What a full circle moment. I was a child who slowly lost her mom and now I am a mom who is slowly losing her child. Neither “should” happen to anyone, and yet there is nothing to be done to make it turn out another way.
My darling girl has a rare genetic disease: Infantile Tay-Sachs. When we embarked on our diagnostic journey last year, it was presented as the worst case scenario. The best-case scenario was blindness. I would be thrilled to trade diagnoses, given the perspective of being 10 months post-diagnosis. This wretched disease is without a cure and has few experimental treatments to slow down the inevitable. We have chosen not to get in the way of the disease, but to meet her daily needs and love on her as much as possible. And yet, there is peace in our household—it found us. We could try to fight this disease that will win; we could try to run away; or we could go with it.
There is peace in acceptance of defeat. It surely doesn’t extinguish this sadness I feel as I hold my toddler-who-doesn’t-toddle as she coughs, sputters and aspirates tiny droplets of death and cries out in pain. But, it allows me to coo, talk soothingly and sing show tunes, just as I would if she were entirely healthy. The peace allows me to stop what I’m doing and relish the moments when she just wants to be held for nap time. It inspires me to take her to places that are meaningful to me. Peace gives me solace, knowing that it is out of my power.
So, last year was my first Mother’s Day with a baby in my arms. And even though we didn’t know Cora’s diagnosis yet, it still didn’t turn out how I wanted. I had fabricated this idea of perfection and had no idea what it looked like. This year I found myself doing the same thing. I checked myself. “Keep it simple. Keep it meaningful. What do you really want?” I don’t really want to be celebrated. People tell me how awesome I am for raising a terminally-ill child, and it doesn’t ring true. This job of ushering her towards a beautiful death was thrust upon me. I would take being an “OK” mom to a typical child with a typical lifespan. That would be just fine with me. What do I want this Mother’s Day?
I want to remember her. I want to be able to remember her. I want the pain, when I can no longer hold her, to be tempered. I know what it is like to hold on to fleeting memories—that Mylar balloon I bought for mother’s day for my mom when I was in 4th grade. I remember paying in nickels and pennies. I remember the lady at the florist pitching in a dime. I remember riding home on my bike with the balloon twirling and tangling around me. I want to remember the smile on my mom’s face when I arrived home; this is how I know it happened.
A few weeks ago we went to the National Tay Sachs and Allied Diseases conference with 250 other people. I saw parents of deceased children yearning to hold my child. I knew in advance that many of the moms were looking forward to snuggle time with the youngest affected kids. I didn’t understand it until I saw it. They longed to reconnect with their own deceased child, that desire for connection was palpable. This, I recognize this. I know this. I lived that for many years. Years in search of a somatic experience to connect me with my mom.
So this is it. I’ve been giving myself a gift all along. I have been sharing Cora, and, in time, she will be given back to me. When months and years and decades have passed, those people who have held her, heard her laugh, saw her beauty, heard her match pitch, noticed her milestones come and go, saw her able to connect with us – those people will be able to give her back to me. That is what I want for Mother’s Day.