To the People Who Ask for Updates on My Baby’s Medical Condition

Dear Well-Wishers,

Thank you so much for taking an interest in my baby.

I know you are genuinely concerned and interested his well-being. I will most likely give you some variation of the following: he’s doing great, we have a date for the next surgery, he’s the cutest baby ever, he giggles now, he’s looking more like his dad every day.

I won’t tell you that I hold my breath at every cardiologist appointment, terrified that they’ll admit us immediately. That we’ll be ripped from our home and my son won’t sleep in his crib again for many weeks — maybe months.

I won’t tell you that all of the occupational therapy, speech therapy, physical therapy, neurology, ophthalmology, whatever-other-specialist appointments are wearing on me. That time I should be spending rocking my son to sleep for a nap is spent on the road in a car seat or in waiting rooms.

I won’t tell you that I watch every move he makes, taking notes to bring to appointments. That our celebrated milestones are smaller than most — he reached for a toy, he brought something to his mouth, he tracked one of us all the way across the room.

I won’t tell you that many times throughout our day, I fumble with his prescribed O2 sensor. I curse it as it struggles to read his oxygenation level while he happily kicks on his changing table. I won’t tell you how my heart sinks as that number drops incrementally over time.

I won’t tell you that I watched him stop breathing hours after his first surgery, that we were asked to leave the room as the surgical team was called back in. That we could hardly make it down the hallway for the rush of nurses, doctors, and respiratory therapists going in. I won’t tell you how that moment replays in my mind during quiet moments, and that I’m terrified I’ll watch it happen again after his next surgery.

I won’t tell you that I worry how his scars will effect his self-esteem. How it saddens me that there are so many physical activities he will never be able to pursue. How I wonder if he’ll feel left out, being sidelined without even having had a chance to try out.

Maybe my bare-minimum medical updates leave you so dissatisfied that you reach for common ground. That you want to empathize so badly that you tell me about a friend-of-a-friend’s nephew who was born with a hole in his heart, had surgery as a toddler and is now 12 years old and doing just fine. I smile and nod, but it’s a story I’m tired of hearing. That is not our situation and that will not be our lives. At 12 years old, I anticipate my son will be undergoing his fourth or fifth open-heart surgery, with surgeries promised to follow.

Maybe if I gave you all the harsh facts of his diagnosis and all the dirty details of our daily lives, I would be spared that same old friend-of-a-friend story. Maybe if I kept a blog of my son’s medical “journey,” you wouldn’t have to ask at all. It isn’t that I don’t want to share or that it’s too hard to share. It isn’t that I don’t appreciate your interest or your concern.

Well-wisher, when you ask me how my baby is doing, your voice drops an octave or two. You look pensive, hoping for the best but preparing for the worst. The question mark at the end of your words hangs heavy. I know that these are social cues meant to convey care and concern; that you mean to tread lightly just in case the update is bad. I appreciate the position you are in.

But it only reminds me that my baby’s story is a sad one to the community at large. While his medical condition is sad, it is not his whole story — nor do I want it to be. When I gloss over his medical status, do not be dissatisfied and reach to connect with your friend-of-a-friend story. Listen to what follows the medical status: He’s the cutest baby ever. He giggles now. He’s looking more like his dad every day.

Tell me how your child’s first giggle brought tears to your eyes. Ask me whether my baby’s dynamic little personality is more like mine or his father’s. Ask me if he’s sleeping through the night, if he has reflux, if he likes our dog, if he fights diaper changes, or if he likes car rides. Ask me if I have pictures of the cutest baby in the world. Because I have thousands, and I’d love to share our absolute joy with you.

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