I laughed the first time my mother brought over designer masks for my children. She had ones with tie-dye and camouflage and butterflies and glitter and baseballs and spaceships and monsters and moons. They came in mesh pouches with zippers like the pencil cases we fought over as kids. Until then, I had been relying on the standard hospital-issued blue disposable masks – the same ones I had used when my son was small and immunocompromised due to a rare syndrome. This new glammed-up gear seemed a little much.
Then I went to the library.
They were giving away free masks made by volunteers. As I waited to have my temperature checked, I sifted through the bin and unearthed a snazzy little red gingham number as well as a pale blue plaid one. It was love at first sight. I hadn’t realized until I looked at myself in the library’s bathroom mirror, how much a little pizzazz can do for your mood. The woman checking out my books couldn’t see my smile, but that mask brightened my demeanor as I waved goodbye. I became a mask-enthusiast. I ordered a floral set on Etsy and a hot pink one covered in books in support of my local bookstore. I even bought fancy disposable ones for the whole family to keep in the car and in the backpack that attaches to my son’s wheelchair. To this I added a few mask lanyards, similar to those that hold eyeglasses. One is a gold linked chain that makes me feel all levels of fancy as it dangles by my ears while I do my grocery shopping.
This rabbit hole of designer safety items lead me to a wooden plaque which now hangs by our door. It is hand-painted in gray with white cursive that reads “Masks” with hooks for each of us. Now no one can use the excuse that they forgot. I am Gandalf in Lord of the Rings, pointing at the sign and proclaiming, “You shall not pass” without your mask.
When my husband first saw the mask plaque, he said, “Let’s hope it’s only temporary” to which I resoundingly agree. However, this “temporary” state has lasted six months. There is something to be said for brightening the moment we are in as best we can. I don’t know how long it will be before there is a vaccine and schools and businesses can re-open safely, but I will do whatever it takes to ease that feeling of perpetual suspension. If there is any spark of joy to be had, I will leap on it – whether that be mask bling or homemade sourdough or the hand-painted rocks I have found all over our neighborhood boasting glittery messages of hope.
When my son, Charlie, first graduated from the NICU at twelve weeks with a tracheotomy and we went home with oxygen and heartrate monitors and sterile water and suction machines and all the other paraphernalia that accompanies a medically-compromised child, my goal was survival. We needed to get through this day and that was all. Things like stylized masks didn’t exist, or if they did, they weren’t on my radar.
At sixteen months, when Charlie was finally able to breathe on his own and we were able to remove the trach for good, I remember the feeling, as the doctor let me pull the rubberized tube from his neck with a slurping, gloopy sound. We had won. We had overcome this situation which we were not at all sure would be temporary. It felt like crawling across a finish line. Emotionally and physically and mentally, I was worn out and achy from worry. But I wonder now, how differently it would have felt if I had let myself loosen enough during that first year to add some sparkle to his trach collar or my latex gloves or even the clear shoeboxes I stashed over the house that held his emergency trach kits. Would I have been less exhausted when we finally emerged on the other side? Would those little bits of sparkle have been a sort of refueling on the journey? Maybe. Maybe not. But I know that right now, in the season we are in, they are helping me stay afloat. They are a reminder to lower my shoulders, take a deep breath, and smile under the mask, even if no one can see.
I am working from home, raising children in quarantine and trying as best as I can to retain my humanity. Rumi once wrote, “Let the beauty of what you love be what you do” so I will continue to chase little bits of beauty for my family, and for this world that I love, because it’s all I can do right now.
Jamie Sumner is a special needs mom, author and blogger.
Read her blog, The Mom Gene.
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