CPN | The Black Swan and the Light

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The Black Swan and the Light








Charlie and I celebrated Cameron’s birthday this Wednesday: she was born on May 4, 1999. This coming Monday, May 9, will be the 15th anniversary of her death in 2001, 2 years and 5 days after her birth. We call this Cameron Week.

We began the birthday by reading the book “On the Day You Were Born” which celebrates the power and hope and transcendent promise of a child’s birth. It is an exquisite book. I began crying on page 4.

“On the day you were born

the round planet Earth

turned toward your morning sky,

whirling past darkness,

spinning the night into light.”

And then we looked at Cameron’s photo album, moving slowly through the pages of her awkward newborn-ness (and my puffy post-partum face) and then her early months with her hilarious hair pouf, and then her exquisiteness at 4-6 months. We stopped looking through the photos at that point because it suddenly felt overwhelming. We had anticipated her birth, we had celebrated her arrival, we rejoiced cluelessly in her adorable awesomeness, without knowing that she had Tay-Sachs and that her genes destined her to die before she turned 3. It hurt to look at myself in those photos, remember myself in those days, and know that I didn’t know what was coming.


So much was coming.


When we become parents, we take an enormous leap of faith, trusting that our children will or can be kept safe. We don’t know about or chose to think about what Security Mom Juliette Kayyem tells me is called the Black Swan effect, a phenomenon that is so unlikely and so random and yet is so consequential. The 1 in a 1,000,000. But, of course, that 1 eventually happens. And for my family, it was Hayden and Cameron, first cousins diagnosed within 4 weeks of each other with Tay-Sachs.


When I look closely today at photos of Cameron, it really really really hurts my heart.  Cameron was born and lived. She was very real. I was never happier than when I was holding her. And then she died, and when I let myself go there, I ache with missing the physicality of her body and the look of her eyes. Parents of children who have died express feeling “mad with grief.” I do wonder if this is what madness feels like.


Fortunately, the dark abyss of the grief is always overwhelmed by the light that comes from many sources. The morning sun. My living loving daughters, Taylor and Eliza. My profound husband Charlie who walked with me every step of the way, sometimes leading the way. My courageous brother- and sister-in-law Tim and Alison, who really did lead the way with Hayden. The generous aunts, Deirdre and Diz, who gave us so much damn love and time and attention during Cameron’s life that they appear almost as much as we do in Cameron’s photo album. My brother Brittain who came for all the key moments. The four grandparents who showed up again and again and hid their own pain so bravely. The tremendous community of godparents and beloved friends who showed up, wrote letters, sent music, took us out, and remember Cameron Week every year. Cameron’s gifted and wise pediatrician. And now the authentic, brave, wise parents and children I have come to know through Courageous Parents Network. You blow me away every time. Thank you, all of you, for the light.


In honor of this Mother’s Day, Juliette Kayyem’s Security Mom podcast features an interview with me. It’s about family resiliency and security in the face of pediatric illness (not about me, happily). If you listen to nothing else, please listen to the last four minutes, starting at 27:40. I salute everyone who loved Cameron and my family then and now, and anyone who takes the time to help another family today with kindness and care. There is more light than black swans, always. Happy Mother’s Day.