Diagnosis: Tay-Sachs
I’ve been thinking about the word COURAGE and how it presents in parents caring for children living with serious illness. In a recent conversation with the dad of a now-young-adult-living-at-home-with-significant-medical-needs, I was struck by his comment that the encouragement of guy friends about how amazing and strong he was really annoyed him. Of course he was prioritizing and tending to the many needs of his child! Any parent would do the same. That’s what parent love looks like. Sure, the scope of the needs was off the chart compared to that of typical, healthy children, but rising to the occasion isn’t the same as showing strength. We each do what we have to do.
I know this, and I knew it when I named CPN Courageous Parents Network. So what is behind my conviction that these parents are courageous?
This is what I know in this moment, what I have learned and seen from our many conversations with parents in the Network:
Courage is in when parents ask their child’s medical team Why? or Why Not? or What else?
Courage is in when they say, No, we don’t want to pursue that treatment or intervention because we think that while it may extend life, it will also negatively impact quality of that life. It takes a lot of courage to put your child’s physical well-being before your own emotional well-being.
Courage is when they say Yes, we do want to pursue that treatment, despite your recommendation to the contrary, because in our heart we believe it is the right thing to do.
Courage is when they intuit that their child will likely not be the exception.
Courage is when they intuit that their child likely will be the exception.
Courage is in when they express gratitude for small victories on Day 21 of their child being in the PICU.
Courage is in when they acknowledge their needs and isolation and ask for help.
Courage is in when they open their doors to invite the community in.
Courage is in when they sit alone with their fears and their grief.
Courage is in when they feel the joy amidst the sorrow.
Courage is in when they have that good cleansing cry.
I am currently reading The Things They Carried, by Tim O’Brien. As noted on the backcover, it is “a groundbreaking meditation on [the Vietnam] war, memory, imagination and the redemptive power of storytelling.” It is exquisitely written. It almost overwhelms with how thought-provoking it is. I mention it here because there is a chapter, or story, called “Speaking of Courage” in which the character in the story is reflecting on something he was part of in Vietnam. “He wished he could’ve explained some of this. How he had been braver than he ever thought possible, but how he had not been as brave as he wanted to be. The distinction was important.”
Put another way, he did the best he could but his best wasn’t as good as he wanted it to be. Ooff!
At Courageous Parents Network, we know that parents are naturally more courageous than they ever thought possible. And our unwritten, unofficial mission is to help them be as courageous as they want to be be for their precious child and family.
This photo was taken 3 days after Cameron’s diagnosis. I am putting on a very brave face. I had no idea what I was capable of, and I was terrified I wouldn’t be able to do whatever it was I’d be called to do for my family.
Diagnosis: Tay-Sachs
In the rhythm of my year, Mother’s Day always falls within or slightly after Cameron Week – the period we spend recognizing her birthday (May 4, 1999) and the day she died (May 9, 2001). The timing has been particularly poignant this year because of the stages of my children and because of how considering each is making me feel.
In the true definition of the word, I am blessed with four children.
Taylor is my first child. She was four years old when Cameron died. She is now 27. She and her boyfriend are moving soon from being within easy driving distance to the other side of the country. This is a milestone in my life.
Cameron is my second child. She was born 25 years ago and died 23 years ago. This is a milestone in my life.
Eliza is my third child. She was 10 weeks old when Cameron died. She is now 23 and is graduating college. My responsibility to ensure that my two living children receive a good education – with a lot of help from grandparents – has been met. Eliza is fortunate to have an exciting job lined up, many many states away. This is a milestone in my life.
Courageous Parents Network is my fourth child. I founded it 13 years after Cameron’s death. CPN is now 10 years old and thriving. This is a milestone in my life.
Two of my children will be plane rides away.
One of my children flew away 23 years ago.
And my fourth child, CPN, is on the cusp of a great leap forward if I can lead it there.
I am so proud of my children. I am genuinely happy for them. I am lucky to say that the two living children are thriving; the changes in their lives are healthy and appropriate and hopeful.
I am also feeling really really sad; these milestones involve physical losses for me. The geography between me and Taylor and Eliza will require more planning and intention and time to see and hold them. The time differences will require more coordination for Facetime chats.
My grief is triggered and I make myself look at it and see it for what it is: the loss that comes with having to let go of the things I love most, whether it’s for good reasons or not. As Mary Oliver writes in In Blackwater Woods:
“To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.”
The tears come and I see them as a symptom of what motherhood can look like at this age and stage – when our children are grown and flown and there is more change on the horizon.
A generous, wise and spiritual friend always sends a letter on May 9 to mark Cameron’s Anniversary. In this year’s letter, she included the poem “On Children” from The Prophet by Kahil Gibran.
“And a woman who held a babe against her bosom said, Speak to us of Children.
And he said:
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies, so He loves also the bow that is stable.”
I have re-read this poem multiple times in the past few days.
My children are not my children. Their existence physically and spiritually are manifestations of Life at a level beyond time and space, and certainly beyond me.
I am simply the bow.
My job as the mother to my four children is to be stable.
This I can do.
**
(the photo associated with this blog is of a painting Frozen Pond by Karine Leger, that my husband Charlie and I recently bought. A good friend observed that he saw it as representing our children).
Diagnosis: Tay-Sachs
I have always understood that Rev. Eleanor Panasevich was instrumental to Cameron’s story but it hit home especially last week, July 2022, when we got word that Ellie had died. She was 86 years old.
Prior to Cameron’s diagnosis, I hadn’t attended church much since childhood, except for Christmas and Easter. We had had our older daughter Taylor baptized as much for ritual (and making the grandparents happy) as anything else, and we had not since returned to that specific church. I believed in God and that was as much as I could say.
Two days before Thanksgiving 1999, we learned our second child, Cameron, age 5 months, had a fatal aggressive genetic condition and would die in the next few years. I remember waking up the next morning and, lying in bed, inwardly praying to God to give me the strength to do that which I did not believe I could do. At a complete loss, that same day, Charlie and I came up with the idea of baptizing Cameron as a way to affirm her place in the world during her now short life. Charlie, who was more spiritually curious than I, had started attending several services at the church nearer our condo — St. Peters Episcopal in Cambridge, MA — and suggested that we have her baptized there. Rev. Eleanor Panasevich was the Associate Rector at St. Peters and she came to our home to meet with us and learn about our family. I wish I remembered the conversation at this meeting, but I do not. I remember only that she appeared calm and unafraid. She held Cameron and showed great empathy and pastoral, almost maternal, care.
Somehow Charlie and I managed to convey something of our family to Rev. Panasevich so that, a few days later, the Saturday after Thanksgiving, she officiated at Cameron’s emergency baptism with a spiritual love that offered a lifeline to the parents, aunts, uncles, siblings, grandparents and godparents who had so generously and hastily gathered for the event. We were all shell-shocked, especially because Charlie’s nephew, Hayden, had been diagnosed with the same disease only one month prior. A year older than Cameron, he had less time than she. We were 20 people sitting in the pews holding together the extreme fact that the two beautiful babies in our midst would be gone in just a few years.
I don’t know what Ellie first thought when she got the call asking if she’d help us baptize Cameron. I believe it took a lot of courage from her to meet us in that raw devastated state of grief and show us a way forward. In the reading for the baptismal service, Rev. Panasevich read, “God declares, ‘You are my child, the beloved. With you I am well pleased.” Of course she leaned on Christian teachings, but she knew precisely how to deploy them. I felt grounded by God’s words for my daughter, Beloved and With you I am well pleased. We would build from there. 
Eighteen months later, Reverend Panasevich officiated at Cameron’s memorial service (Hayden had died 5 months prior). She spoke about Taylor as Cameron’s big sister, the friends and family who had sustained us with their devotion, and Cameron as a baby and as a teacher. She helped Charlie and me show the 150+ people gathered that it was possible to lovingly parent a child knowing she will die soon and, with help from earthly and heavenly allies, to grow that love so big it can encompass everyone and get us all through. In her homily at the memorial service, Ellie referenced the previous baptism and said, “In that service, both Cameron and Hayden, their parents, their families, and all those who love them, experienced God’s grace. There was no one here that day who failed to grasp how deeply loved and cherished Cameron and Hayden are and always will be. God’s love will always envelop Cameron and Hayden.”
In the first few years following, we stayed in touch with Ellie through letters and a few dinners where we’d talk about Cameron, grief, and life after loss. Then our months and years filled with mundane normalcy and we lost touch. I forgive us this, but I do now wish we’d had one more meal with Ellie to thank her again for stepping up so courageously to shepherd our family through two such painful periods. Reading Ellie’s obituary these 23 years after first meeting her, I realize that she was God’s grace in human form. Her spiritual faith was gentle yet strong and held us up and carried us over to where we could catch our breath and live into what lay ahead – first, giving Cameron the best life possible; and then honoring and remembering her ever after.
The evening we learned that Ellie had died, I wondered if her spirit had met up with Cameron’s. Ellie showed up for Cameron. And maybe Cameron showed up for Ellie.
I like to think so. The idea of it makes me smile.
(and what a beautiful smile Ellie had.)
Diagnosis: Tay-Sachs
Diagnosis: Tay-Sachs
Diagnosis: Tay-Sachs
Diagnosis: Tay-Sachs
Diagnosis: Tay-Sachs
Diagnosis: Tay-Sachs
Matt and Myra, parents to Havi and Kaia, talk about what it felt like to discuss Havi’s end-of-life and what brought them to their decision not to bury her.