The pain and beauty of dragon parenting

Claire McCarthy MD

On the eve of my dead son’s birthday, in one of those eerie, grace-filled coincidences, I read an essay that took my breath away.

The essay in the New York Times is called “Notes from a Dragon Mom.” It is written by the mother of a child with Tay-Sachs disease, and it is about what it’s like to parent a terminally ill child.

The mothers and fathers of terminally ill children are something else entirely,” writes Emily Rapp. “Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.”

I was a dragon parent. My third child, Aidan, was diagnosed with lissencephaly on Christmas Eve of 1995, when he was two months old. Lissencephaly is a severe brain malformation; there is nothing that can be done to fix it. In that instant of seeing his CT scan, the entire world changed. It wasn’t about milestones and preschool and college and possibilities anymore. It was about whether he would ever smile (he did), let alone walk or talk (he didn’t). We stopped thinking about playgrounds and playdates, and started thinking about how long we would have with him, and what that time would be like.

Dragon parents, Rapp writes, are scary to other parents. I remember that so clearly, even though Aidan died fifteen years ago. We tried to make life normal for our two preschool-aged children, but it was anything but normal to be running for the suction machine or managing seizures in the midst of making dinner or playing with dolls. Our life was as different as Aidan was different from other babies at the playground or grocery store. Nobody knew what to say to us or do for us, so they mostly disappeared. It was lonely.

Aidan and me, in 1996 (photo by Michele McDonald)

I remember one afternoon at a museum on Zack’s fourth birthday; I’d taken the kids to celebrate. Aidan started seizing and wasn’t breathing well; he was starting to turn blue. I looked around and wished that someone, anyone, could help me. But there was nobody—there never seemed to be anybody—and I knew what to do, so the kids and I went into the handicapped bathroom and I gave Aidan some rectal valium to stop the seizures—and then we went back out to the museum, where the children played and I watched Aidan’s breathing, fighting back tears.

It is horrible, being a dragon parent—and at the same time, it is deeply beautiful. Life is more complicated, with medication regimens and medical equipment; just leaving the house to buy milk requires extensive planning and some remarkably good luck. But life with a terminally ill child is also exquisitely simple. There is so much that doesn’t matter anymore when your child is going to die. Just holding them matters. Seeing them smile is everything. That my other children and my husband were healthy became nothing shy of a miracle for which I could never, will never, be grateful enough.

That’s what we lose sight of, I think, in the hustle and bustle of our day-to-day lives as parents. We get so caught up worrying about their grades and their behavior and activities and future that it’s really easy to lose sight of the fact that our children are, fundamentally and forever, a gift to us. As Rapp writes at the end of her essay,

“This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.”

Last night, as we do every year, we celebrated Aidan’s birthday. We walked to the cemetery and set loose balloons, watching them wind their way through the sky on their way to Heaven. The kids played on the rock ledge behind Aidan’s grave, and we laughed on our way back to the house. There was some sadness, but mostly joy.

That’s what we dragon parents learn: how to find joy. We learn it the hard way, and it never fully erases the sadness, but we learn to see it and take it wherever we can. We live the rest of our lives fiercely, loyally, and full of love.

 

19 thoughts on “The pain and beauty of dragon parenting

  1. Oh, Claire. Thank you for this post–for your honesty and your ongoing courage to share your stories and your exceptional wisdom. As you know, my thoughts and my heart are with you and your family as you celebrate your little boy’s life.

  2. Thank you for sharing your story with us. I’m very sorry for your loss. I was/am a “Dragon Parent” too; my oldest daughter died this year, three weeks shy of her 5th birthday, from the effects of a Mitochondrial Disease. As you noted, it is a very difficult and lonely existence sometimes. In our case, my daughter was rarely able to be home, and most of her life was spent at Children’s Hospital Boston. There we were able to take comfort in the care and friendship of wonderful medical providers, which did make the task of parenting a dying child easier. Our daughter’s life was short, filled with difficulty, and much pain for everyone involved, but she had a bright and ardent spirit that touched many lives. As a family it was a privilege to parent such a special child. Though we will never escape the sorrow that comes with losing her, we will never lose the perspective and lessons that came with her either. Again, thank you for sharing your son with us, and may God bless you and your family.

  3. I am a parent of a child with Cystic Fibrosis. I am also a writer. I have never, in my entire life, read anything so moving. I am speechless. I want to share, but am afraid my daughter with CF will come across it.  And the dragon parents don’t allow that.

  4. Losing a child to leukemia, myself…its as if you took my thoughts and put them in print.  thank you so much Claire!! While you never want anyone in the world to know our pain…it is also comforting in a way to know that we are not alone.

  5. Thank you for sharing your story and for reminding all parents everywhere that children are a gift and parenting is about loving NOW because NOW is really all any of us are guaranteed.  

  6. I am a dragon parent too.  I lost my two oldest children of Leigh’s disease.  Ricky died 12 years ago and Linsey died 4 years ago.  It is nice to read that other people have had similar experiences.  Sorry for your loss.  They will always be in our hearts and  in our dreams.  

  7. I smiled when I read how you celebrate Aidan’s Birthday. I’ve been doing that for 17 years for my firstborn and only girl, Natalia. It’s almost always a joyful event where her brothers and cousins get together to put on some flowers and ballons on her grave to celebrate her life. Thanks for sharing your story.

  8. This is such a moving article. Thank you so much for sharing this with others.

  9. Thank you for sharing your story.  Aidan walks with saints until the time that he can walk next to you.  

  10. The true meaning of unconditonal love… Thank you for sharing this life  story of your beloved child…Finding a rainbow of Hope and Joy is truly a gift in the midst of this journey… Today is a gift and not a given as reflections are made upon reading this…
          

  11. This article has been one of the most beautiful articles I have ever read written by you. Thank you so much for sharing it with me/us. I completely admire parents like you, my only sister, and so many others out there. I lost my only niece to Holoprosencephaly (also a rare brain malfunction) and it was one of the hardest things I ever had to see my sister go through. May GOD bless you and all those other parents out there that might be going through a similar situation.  Thanks for reminding me of how TRULY grateful I should be for everything that I have. Thank you, thank you, thank you!!!!

  12. Wow, what a beautiful and powerful story. Thank you for sharing your story. 🙂

  13. I am also a Dragon Parent of a 12 year old with Microcephaly. We recently started with Palliative Care because she has been suffering with pnuemonia every 6 weeks and the only treatment left is comfort and pain management.  The hardest part for me is knowing she will not survive, but not knowing the how and when. Sometimes I’m convinced she will live another 12 years, and other times I think each pneumonia will be her last. It’s a horrible way to live, but at the same time, she has given us such a gift of perspective, appreciation for life and wonderful lessons in uncondintional love.  Thank you for your article and for reminding us we are not alone in this journey.

  14. Claire, this is poignant and beautiful as always.  We are lucky to have you here at Children’s Hospital and everyone is lucky to share in your personal stories that educate, enlighten and let us know we are not alone in whatever our medical or life problem may be.  Thank you for sharing this story with us–it certainly helps put things into perspective.

  15. Your story is beautiful, thanks for sharing it.  We often want to be in control and protect our children from harm but we don’t realize that life is so fragile that we should enjoy more instead of fretting about life’s ups and downs.

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