Having a winter baby is scary. When my son, our first child, was born in December, my husband and I sent out a vaccine list and safety guidelines to our immediate family. Everyone was to be masked at all times, sick or not. We had no hospital visitors.
As each slow newborn three-hour cycle crawled by that December and January, we began to discuss how fun the summer would be. He would be vaccinated and a cute 6 to 9 months, perfect for playground swings and library music groups. I would have the car and be able to take him on all sorts of adventures with library passes to local museums.
But on the first hot day in June, I pulled into the ER alone with my baby and ran with him inside because my throat was starting to close.
I was diagnosed with sun allergy
It all started with hives. They had been present for a week and were spreading all over my body. The itching kept me up at night, and my primary care doctor referred me to an allergist. On my way to the appointment, I had my first anaphylactic episode. The Emergency Room doctors were puzzled and couldn’t tell me what I was allergic to.
A few days later, it happened at home. Still covered in hives and puttering through my Sunday despite an unusual sense of fatigue, I was sitting on the porch when my throat and chest suddenly began to tighten. I got my EpiPen ready and 10 minutes later my tongue swelled up, my voice changed pitches, and I had my first ride in an ambulance stretcher. I was observed for three hours and sent home with more medical bills and no answers.
After several trips to two different allergists and lots of observations, we all came to the conclusion that sunlight and heat caused the attacks. I was told to dose my body with six times the recommended amount of Zyrtec and stay inside, away from windows, in the AC.
I had to parent differently
All of my work is contract and remote. I am also the primary caregiver for our son. Prior to my sudden allergy, our days consisted of going out of the house during his wake windows and coming home so he could nap and I could work. At night, when he went to bed, I would work for as long as I could stay awake. I cherished his awake time. We were regular attendees of a neighboring town’s baby music time and another’s new parent group. He loves being out of the house, especially if it involves books or music.
But suddenly, this new disability changed everything about our days. Some days, I began to battle flare-ups because I ventured on a short walk without my UV-blocking umbrella. I would wake up already exhausted and had to give every ounce of energy I had to bring him through his routines. In order to keep us both safe, I do not drive, and we stay inside the house with the AC on full blast. I am still learning how to live in this body.
I build dance parties into our routine at home to replace the baby music group. We explore our lunch with our five senses, encouraging fun and messy sensory play. My husband or parents ensure the baby gets some time outside in their garden. My mom shuttles the two of us on adventures to Ikea or food shopping. I am not alone.
My allergist is empathetic, determined to get me outside, and draws diagrams of my misbehaved cells next to step-by-step plans. Right now, that means beginning Xolair. If that doesn’t work we enter the realm of immunosuppressants.
For now, I will treasure family karaoke sessions, blasting Sesame Street and singing loudly to encourage baby giggles and the magic of summer night drives, watching the moon’s light catch cupped leaves shaking around the dark road.
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