Recently my son and I were reading a book about cities before bed.
“Mommy?” he asked, as he turned to the page with a hospital. He saw the operating room. “What are they doing in there?”
“That person is having surgery,” I answered.
He replied, “What’s that?”
As I explained how a patient takes medication to fall asleep, and then how a surgeon goes into the patient’s body to fix whatever needed help, a look of concern flashed briefly across my son’s face. I saw an opportunity for a conversation, and I pushed forward, gently.
“One day, sweetheart, you’ll have surgery like the kid in this book. It’s normal, and very safe, and helps your body be strong.”
When my son was a baby, we had no idea he had Marfan syndrome. In the middle of the night, while nursing him, I would hold his hand and stroke each long, beautiful finger, all the while wondering what side of the family those fingers came from. I never could have imagined preparing my four-year-old for a lifetime of doctor appointments, medication, and surgical procedures. And now, as I looked into his big brown eyes, I did the only thing I could: I showed up without expectations to meet my son wherever he was at that moment.
“Mommy, I’m really scared of surgery and I don’t want it.”
We are the lucky ones. James was diagnosed at two, and we know that we have a lifetime of monitoring his condition and preparing him for his health journey ahead. Awareness means many things to those in our community, but for me, as a mother of a child with a serious chronic condition, it feels empowering. It feels like control. Because I have so little control, awareness means the world to me and it has served as my guidepost since receiving my son’s diagnosis. When conflicted whether or not to tell someone about his condition, I shared it. When I saw an opportunity to expose my son to learning more about his body, I took it. Awareness is my truth, it is my light.
At the root of the human condition is suffering, and there’s nothing quite like the incurable illness of a child to help you see that. We are forced to ride the waves of our lives ˗ some big and some small ˗ without knowing when and how those waves will come. We ride them because we must. As parents, we help our children navigate the waves, but we can never smooth the seas for them. I am open with my child; I am open with others. We all struggle together, and if we are open and aware, we aren’t alone.
When your child feels fear, there’s no greater instinct than to want to take it away, to fix it, to make it all better. But I can’t make my son better, and I can’t take away the cards he was dealt. What I can do is to help him understand the truth, even though we are both so afraid, and ride the waves together.
After story time that night, we laid in bed and snuggled together tightly. I told James that his father, sister, and I are always there for him. We talked about how some of his new friends at The Marfan Foundation’s upcoming annual conference will tell him what it’s like to have surgery. He can also ask his doctors about it, too.
I’m so grateful to have this time with my child, to empower him to ask questions, express his feelings, and watch him live his life. Our lives are by no means easy or simple, but being aware of the complexity feels good. It feels right.
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Allison did not hesitate to share their story with the media in advance of the 2019 San Francisco Walk for Victory.
Contact Suśan Sobers, email@example.com.
Allison Pullins is a healthcare technology executive who lives in San Francisco with her husband and two young children, one of whom has Marfan syndrome. She volunteers for The Marfan Foundation and serves as the Community Chair of the San Francisco Walk for Victory.