My daughter has amblyopia, a sight disorder in which the brain fails to process inputs from one eye and over time favors the other. It is treatable when caught early, as it was at her 18-month checkup as a baby girl, and has meant that she has worn an eye patch for five hours nearly every single day for the past few years, and will continue to do so until the age of seven.
It is difficult to inspire a two-year-old who feels she sees much better without an eye patch to comply with the treatment. It is similarly difficult to motivate a three-year-old who wants to know why no one else is wearing an eye patch to persist in her occlusion therapy. At the age of four, however, the treatment is so engrained in her daily existence that she will bring the patch to us in the morning, the picture of saintly acceptance. One way or the other, we have made it to this point, largely relying on an alchemy of consistency, M&M bribery, and various short-lived empathy tactics, including patching each and every one of her dolls and stuffed animals. There have been mornings Mr. Magpie and I have worn an eye patch in solidarity. There have been books about eye patches purchased. There have been patches with loud and funky prints on them ordered. There have been energetic celebrations every afternoon at 1 p.m., when the patch comes off. We call them “M&M parties,” and we all drop what we are doing and dance wildly around the room, shouting: “M&M party, M&M party, M&M party for Emmy-Lu! M&M party, M&M party, M&M party JUST FOR YOU!” These have become such a mainstay in the rhythm of our family life that several of my siblings know the lyrics and intonation and, on the occasion they are present for the 1 p.m. taking-off-of-the-patch, will also gyrate exaggeratedly in celebration, anointing her in song and support, and mini will beam from the center of the living room, thriving on the attention.
My daughter’s condition has opened my heart in surprising ways. At first, I felt a clinching, flinty angst towards anyone who dared gape at her patch, let alone comment upon it. I remember taking mini to a restaurant for lunch one morning, just the two of us, and a diner at a neighboring table invited herself into our universe with needling questions: “What’s going on with her eye? Will she be OK?” I batted these questions away with nodding, brisk replies delivered through a plastered-on smile, pretending to busy myself with the diaper bag to encourage the woman to return to her own affairs. When she asked about how the patch was impacting my daughter’s depth perception, I just about lost my mind. My rancor did not stem from vanity or a will for privacy. It was triggered by an inborn defense mechanism in service of my girl: I did not want anyone, anywhere to make her feel different or less than or impaired. I did not want her to experience a self-consciousness born of othering. I had the impractical parenting instinct to cocoon her from the prying eyes and unfeeling queries that seemed to follow us everywhere. I was quick to anger.
Time has sanded down the edges. I understand now that many people are well-intentioned or benignly curious, and I can’t expect them to behave as I wish they would. I appreciate that very few parents have thought through a sensitive way to respond to their own children pointing at my daughter and asking: “Why does she have a bandaid on her eye?” I can now laugh a bit at the time a visiting priest at my parish halted the entrance procession at Church one Sunday morning to pause with solicitude at our pew: “God bless this child,” he said, gravely, issuing the sign of the cross over her tiny form, I’m sure assuming that she had lost an eye. Afterward, the parishioners in our pew bobbed their heads in our direction, brows furrowed in dramatic displays of concern. At the time I remember shrinking from the attention, drawing my girl to chest, kissing the top of her head. Now I can look back on that moment as a mildly humorous, well-intentioned misunderstanding.
Young children are often curious about the patch but not unkind. They may crane their necks to get a better look at her colorfully-printed patches, or stand a few feet from her face staring in open-mouthed inquisitiveness, but it has never, thankfully, turned cruel. When asked about the patch, sometimes parents at the playground will say: “Oh, that’s her superhero patch! She has super strength!” or “She’s a cool pirate!” or “What a fun accessory!” I understand the desire to transform the device into something playful, but we remain dedicated to the bare-bones, unfussy truth: “The patch helps make her eye stronger.” We came to this phrase after fumbling through countless interactions that ultimately led us to productive parenting conversations that would spool late into the night. In this way, her occlusion therapy invited us to make a conscious commitment to speaking the simple truth to our children in this case and countless others.
Mini’s condition has made me feel deeply for parents who care for children with more severe or permanent ailments or disabilities. I have experienced a tiny fraction of what they face. How exhausting for them to constantly contend with unwelcome comments and stares, especially on the heels of the added responsibilities of caring for a child with special needs. I have made it my business to interact with those parents with particular care — opening doors or helping a wheel out of a divot when the situation warrants it with a wordless friendliness that is designed to avoid the shape of pity, but mainly going out of my way to afford them privacy and normalcy. The patch has also, I believe, helped us cultivate in our children empathy for those who are unwell or differently abled. When we see people with corrective or assistive devices, whether helmets or orthopedic braces, the patch provides an easy reference point: “You know how you wear the patch to help strengthen your eye?…”
Mainly though —
I am humbled not so much by the disorder, or by the many learnings and awarenesses it has borne, but by the quiet and uncomplaining grace of my beautiful daughter as she has toddled, walked, then run and skipped and hop-scotched, through life wearing an eye patch. Wearing one out of solidarity for only a fraction of a morning was dizzying, frustrating, and disorienting, and I could not wait to tear it off. My daughter, by contrast, submits frictionlessly to her treatment every single morning, even when the patch makes it difficult to judge depth perception at the playground or leaves her off-balance when focusing on toys with small parts for too long. I have not written about her condition for the last two and a half years out of respect for her privacy. But yesterday, I was watching her sprint down the sidewalk in front of her school with her friends, a radiant and wide-open smile on her face, her arms stretched out like wings as she kept pace with peers who do not have to go through their days with one eye covered, and I thought — well damn it, this girl deserves to be praised. I will shout it from the mountaintops!
Awhile ago, a reader shared a personal mantra: “I can do hard things.” Ever since, I have issued this affirmation to my daughter in moments of hesitation or fear: “You can do hard things,” I whisper. And while it can’t hurt to reiterate, the truth is, she needn’t be told. If anything, watching her move through the first years of her life with forbearance that far outstrips my own has been her way of telling me: “Mama, we can do hard things.”
+Oh man, motherhood is an elegant and lopsided dance: “…These unremarkable details are the fabric of my motherhood. Nothing dramatic or over-the-top about them–they are, simply, the silent devotions of a mother to her child, the self-same ones practiced by women in rural India and northern Ireland and the southernmost tip of Argentina. But just beyond these quiet minutaie lies a hot, fierce love, which occasionally bubbles up into elbows-out protectiveness, or sentimental sobs, or an outburst of kisses that leaves mini writhing out of my reach.”