My inner child awakens every fall. As the foliage starts to change into its glorious colors, I go to work decorating my home. And while sipping pumpkin spice latte, I think about what costume I will wear to this year’s party.
On Halloween, you will find me on my porch, dressed in costume and waiting for trick-or-treaters with my enormous bowl of candy. It makes me nostalgic for the days of trick-or-treating with my own little ones.
I miss the preparation of costumes, and the excitement of knocking on as many doors as possible. However, the amount of ground we would cover was limited to the stamina of my child living with pulmonary hypertension (PH). My son, Cullen, could not walk far without becoming short of breath and needing a break. The Seattle weather added to his breathing difficulties.
Malls, community centers, zoos, churches, and schools offer safe locations for trick-or-treating. They also have comfortable resting spots for those with special needs.
Cullen preferred trick-or-treating in our neighborhood. If your PH child does, too, there are ways to make it more manageable.
Discourage a costume that requires a mask. I guarantee that after a block or two, your child will find breathing nearly impossible. Instead, use face paint or makeup and direct them toward a costume that includes a hood and gloves for extra warmth.
If you are short on time or creativity, Target offers adaptive Halloween costumes for children with disabilities. There are wheelchair covers such as pirate ships or princess carriages, and costumes that open from the back and have wide pant legs. If your child is on supplemental oxygen, allow them to have fun decorating the cylinders or make them a prop for an astronaut, fireman, or scuba diver.
Driving the route might sound like a good idea, but getting in and out of the car can be as exhausting as walking. After a couple of challenging Halloweens, my son gave in to trick-or-treating by wheelchair. His brother would take his treat bag to the doors for him, and Cullen would shout, “Trick or treat!” from the sidewalk.
Cullen received a heart and double lung transplant five years ago. When in public, he wears a P100 or N99 mask for protection from germs and allergens. Kathleen Sheffer, his PH friend who also received a heart and double lung transplant, has written about her experiences with black masks during the Halloween season.
Sheffer dressed as the Tin Man from “The Wizard of Oz” on her first Halloween with her new heart. But adding silver tape to a Vogmask made it hard to be heard. These days, she uses her mask to be a ninja.
In October 2014, Cullen was recovering from his transplant at Lucile Packard Children’s Hospital Stanford. Katy Doak was another friend who received a transplant due to PH but was there fighting a new battle with post-transplant lymphoproliferative disease.
The hospital organized a Halloween party for the patients, complete with trick-or-treating and games. Katy and Cullen decided on costumes that turned out to be a big hit. Katy dressed as Carol Conrad, their pulmonary and lung transplant doctor, and Cullen as Jeffrey Feinstein, their cardiology and PH specialist.
The “doctors” shared a double wheelchair and had a blast as patients and staff broke into laughter when they guessed the costumes.
Three years later, Katy lost her battle with acute myeloid leukemia. Cullen cherishes the memories from that special Halloween.
It is possible for medically frail children to enjoy Halloween. Research the options and choose what works best for your child. Have fun with the costumes and enjoy making happy memories.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.