A Forbearance That Far Outstrips My Own.

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.”

Post-Scripts.

+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.”

+Parenting feels like living with a heart rent in too many directions.

+Time is a thief.

+On making it through several months of the pandemic without childcare, while recovering from COVID myself.

+My daughter is my other heartbeat.

+And she is how I keep time.

57 Comments

  1. Coming to this so late, but oh my, what a beautiful post! It has left me teary-eyed like so many others who have commented before me. You are an incredible mother and Mini is so lucky to have you. I’m also in awe of her strength in navigating her condition so gracefully, at such a young age. It’s very moving, even to a total stranger! Sending her (and you) my love and hopes that in time, her amblyopia will become less of an issue. xxx

    P.S. I love the image of the 1pm M&M parties! How sweet, and how special for her (and all of you!)

    1. Thank you so much :). This brought the biggest smile to my face just now. Thank you, and to all the Magpies for the love in the comments section of this post 🙂

      xx

  2. Oh Jen! I was tearing up reading this. I love that photo of your mini. What a strong, joyful, and resilient little girl you have! (And what strong and resilient parents she has too!)

    I know it feels so hard finding out something is atypical in your child… I remember at my 20-week anatomy ultrasound when I found out my baby’s kidney was not growing well and I bawled right there in the doctor’s office. They monitored her from then on closely, and while she does have a kidney condition for which we see a nephrologist and urologist annually, she is otherwise healthy (knock on wood). At any rate, kids are amazing little humans — they (and we) can definitely do hard things!

    I don’t know if this sounds strange coming from a stranger on the Internet, but you and Mr. Magpie sound like such wonderful parents. You seem to bring out the best in each other and in your kids!

    Continue rocking that eye patch, mini!

    1. Oh thank you so much, Mia — for the compliments, for the encouragement, for the kindness. I can’t imagine how scary it must have been to hear about your daughter’s kidney issue while pregnant. Too much to process, too many unknowns! I’m so glad things have been going well for her. I agree with you: “kids are amazing little humans.” They really are!

      xx

  3. Oh, this is such a genuinely lovely tribute to Mini’s fortitude and resilience and adaptability. So beautiful. As someone noted above, what an incredible team you two make.

    Also, this made me feel seen and validated in my experience of parenting my 1 year old son who has a somewhat prominent hemangioma on his scalp. We’re fortunate in that it will fade and ultimately disappear over time but I do find myself bristling a bit when other kids point it out or ask about it. I think that desire to protect our children from feeling any sense of otherness or exclusion is so innate in us as mothers, even if the questions or comments from others are ultimately benign. Thank you for sharing with us.

    1. Hi Kristen! Thank you so much for the sweet note. Feeling so loved! I totally understand where you are coming from with your son’s hemangioma. In fact, Hill had a large one on his arm that is just now fully fading at two, so I REALLY relate to that one. It’s such a natural instinct to want to protect your children from prying eyes! xx

    1. Oh I love this, Alexandra! Thanks for sharing. So sweet. Hopefully mini will carry some of these lessons along with her with the same positivity that Courtney did.

      Thank you also for the kind words!

      xx

    1. Oh gosh – thank you so much, Mary 🙂 You all are making me feel like a million bucks today. xx

  4. I love love love this post! What a beautiful tribute to your sweet girl and a testament to you as a mom.

    My older son, William, is the exact same age as Emory and has intermittent alternating esotropia. He just had strabismus surgery less than two weeks and Dr. Vike Vicente here in DC is INCREDIBLE. I cannot say enough good things about him and wanted to pass along in case you needed a new pediatric ophthalmologist when you move. Happy to chat offline as well – just email me! Xo

    1. Hi Katie – Wow! Way to go, mama and William! My sweet nephew is also about to undergo a similar surgery and I know it must have been hard for you as the mama. Thinking of you and glad you can put that behind you. Thank you SO much for the referral! I may take you up on that. I’ve flagged his info. Many thanks! We have a great pediatric ophthalmologist up here and writing this post triggered a little — “ooh! We need to find someone good in D.C.” Then your note fell into my lap!

      Thank you so much for the encouragement and kindness, especially lovely from a mama who has been down a similar road.

      xx

    2. I worked with Dr. Vicente when I was a medical student in DC! He is such a great doctor and amazing with kids. I I also definitely credit him for helping me get into my residency program. Highly recommend him.

  5. Also wanted to add – my 4 year old son Teddy has a “best friend” at school who wears glasses. He has asked Santa for glasses for the past two years and constantly talks about how cool it is that his friend has different colored glasses. 🙂

  6. This made me tear up (and I’ve kind of lost the ability to cry, so no small feat!”)

    Thank God for good pediatricians

    What a strong sweet girl. What a strong brave mom you are.

    Thank you for sharing

    1. Thank you so much, Rachel — you are so right: “Thank God for good pediatricians.” I wrote a long handwritten thank you note after mine noticed mini’s eye issue at such a young age, especially given the condition is often not diagnosed until children are five or six and have been struggling to see for awhile! I feel so, so fortunate that she was so attentive and such a good diagnostician. Feeling blessed for that reason and so many others, including the kindness and encouragement that is absolutely RAINING down on our family in this comments section. Thank you, friend!

  7. Reading this gave me a lump in my throat. I’m grateful you shared this. I, too , have wondered at the balance of sharing and protecting privacy when it comes to my daughter’s ADHD diagnosis and it calls to mind a recent FB post by another friend who wrote about her son’s journey to a hearing aid and added, “I write this to share with other parents who may be on a similar journey–let me know if I can help.” It felt like a gift to her community, her willingness to be a bit vulnerable in sharing her story and in doing so be a resource for other parents. This essay made me feel the same!

    1. Hi Brooke – I’m so glad you wrote this. I have been feeling not only lifted up and encouraged by all of these comments here but also tenderhearted and connected to so many other moms who have shared the similar or adjacent or more difficult health-related journeys of their children. A reminder that we can all do hard things, and that we are never alone!

      Thank you so much for reading along, and God bless your sweet girl and the journey you are on with her!

      xx

  8. Thank you for sharing this beautifully written essay. I’m an ophthalmologist in training and I noticed some of your past instagram posts with your daughter in glasses and remember being mildly curious if she had amblyopia but of course didn’t want to ask. This essay really helped me see things from the perspective of her, and you as her parent – it is easy for us as doctors to say “wear a patch every day” but so much harder in reality. Big hats off to you and her for your strength and resilience during this process. Loved reading some of the other comments too about people who had success with the patching. And I absolutely love that picture of your daughter; she looks so joyful!

    1. Thank you, Elisse! Your comment made me so, so happy. One of the reasons why we absolutely love our pediatric ophthalmologist is because he totally gets the day-to-day and has been deeply empathetic towards us. He told me once that our bi-yearly check-ins are just as much for us as the parents — to give us support and encouragement — as they are to track mini’s progress! He is so right. It is so reassuring and motivating to get in there and hear him tell us we’re doing a good job 🙂 Anyway, so glad this post may factor into future conversations with your families. As an aside, our doctor gave mini this book when she was first starting to wear the patch:

      https://bit.ly/3ykfGmW

      The book was actually written by the parents of one of the children he treats!!! So cool. Anyway, it was such a thoughtful gift for her from his practice and we have read it many, many times!

      xx

    2. Wow, thank you for the book rec! What a great idea. I will definitely keep that in mind for my future patients!

  9. Aww, hugs to you and hugs to that brave smart girl! My little one (almost 4) patches every day for exotropia and we’re getting glasses next week. I’m dealing with mom guilt even though I KNOW we started treating in time, but isn’t it amazing how these little girls have the strength to handle it? Even after the bribes and the crying and the sneaking into a corner to take the patch off, they do it. You’re a great mom. Maybe the mini magpies can start a Preschool Patch Posse when you move to DC. They’d be inspiring!

    1. Hi Kristin! Oh man I love hearing from my fellow patching mamas 🙂 The early days are the hardest, but once you’re in a rhythm and routine, it does all click into place. Not that we don’t occasionally have sneaky tearing-off-of-the-patch moments, too. Sending you guys love!! You got this!! We have glasses, too!!

      xx

  10. So inspiring, thank you for sharing! I have the same condition as your daughter and had to wear an eye patch over my eye when I was her age (I’m now 22 and it does not impact my day to day at all). I think it will bring you comfort to know that I had completely forgotten about that situation early in my life until I read your post this morning. Someday mini will only vaguely recall the details of this experience but the resilience she is developing will improve her approach to every challenge she encounters going forward. Like I said, I vaguely recall the nuances of my eye patch regiment- but the parts of the experience that stand out in my mind is my interactions with my parents during those times. The help and love you are giving Mini during this experience will illuminate your profound love for her more than any words could convey. That is the part of this she will remember. Sending you both love and strength!! You are such a great Mom

    1. Oh gosh, Marge. This comment brought tears to my eyes. Thank you so much for this incredibly kind and motivating note. Knowing that you rarely think about the patching process and that the treatment left you with strong vision makes me so optimistic. Deep sigh of relief reading those words. And the note about how the patching process only made you closer to your parents — ahh! So lovely. Truly, thank you so much for the gift of this note! xx

  11. So well said! Your words conveyed everything so eloquently. You and your daughter are stronger together. Love is so powerful!
    Stares and odd glances are unfortunately a part of our world! Early on I caught myself staring back (loud and hard) as if to say, how do you like it when I stare at you. Time has calmed me down, but I wish more parents would take opportunities when they present themselves to teach helpful lessons on disabilities. It’s not a life anyone wants, but some are blessed with it.

    1. Hi Cynthia — I was hoping you might share some thoughts as I know you have incredible perspective and resilience as a parent to a child with a disability. I love the way you put it: “some are blessed with it.” What a beautiful way to think of it.

      Thank yo for the night!
      xxx

  12. Jen, this is such a beautiful tribute to your daughter and to you as her mother! You two make a formidable team. It made me want to call my mom and thank her too!

    1. Oh gosh – thank you so much! What a compliment! Maybe I’ll call my mom, too 🙂

      xx

  13. My (now not-so-little) brother was patched daily for a few hours each day until he was about 4 when his “lazy eye” wasn’t getting any better and a new dr realized he instead had a condition that could only be reversed through surgery. All is well now, and he’s 17 with no eye issues. I’m so impressed by Mini’s resilience with and submission to something that just has to be a part of her life – a good lesson for us all.

    Also – this was a great reminder that even in this world of everything being online, you never *really* know what people can be going through or dealing with until you know. It’s so easy to take acquaintances and friends social media presences for the whole story when in reality it’s just a fraction.

    PS – that picture!!! SO adorable!

    1. Hi Molly – Thank you for the sweet note! I love this picture of Emory. She was only around three here and I can’t believe how much older she already looks — but she still has that same radiant, slightly mischievous smile 🙂 I agree with you — her resilience and acceptance have been an incredible model for me!

      xx

  14. Oh, so glad to hear this was caught early and is treatable! I so relate to the singing/dancing/bribery/etc to get small children to willingly participate in their treatment. Our girl is in remission now, but her neuroblastoma was diagnosed at about the same age that mini’s condition was. Such babies!! We never really had to deal with stranger’s comments though…her scars are mostly hidden by clothes and even though you could see her chest port and feeding tube through her bathing suit no one ever mentioned it. And she was so little when she lost her hair that maybe she looked like a toddler who haven’t gotten her hair yet? Anyway, glad we dodged those uncomfortable interactions. She has been such a champ throughout. She definitely pulled us grownups through the ordeal with her cheery disposition. She still has several scans per year and since she’s more opinionated (ha) about things now, I’m feeling grateful that she was so little when we were in the thick of it.

    Thanks for sharing this!! We can all do hard things…even things that seem like the worst, most impossible things. We are strong for our children and they are strong for us, even when they’re too little to know it!

    1. Hi Stephanie! Oh my hat is off to you and your family — what incredible bravery and determination, and I love the image of your fiercely cheery little lady powering through the treatment. God bless you all. Thank you for sharing this!

      xx

    2. P. S. Forgot to mention another commonality here…her cancer was caught because of her eyes. My husband noticed a VERY slight droop on one eyelid, and that (in combination with the fact that as a baby sometimes half of her face would flush randomly – even though that had not happened for months at the time we noticed the droopy eyelid) sent us off on a round of eye appointments and an MRI which found the tumor. It was on a nerve that controls the eyelid and pupils. Since her (SUCCESSFUL!!!) surgery, her left pupil will always be larger and her left eyelid is still a teeny bit droopy but not noticeable if you aren’t looking for it.

    3. Wow – what a testament to you two as parents for noticing and advocating on her behalf!! Incredible!!

  15. My 10 year old niece has strabismus. You are so brave to share this. I love the way you write, and this is the most authentic piece I have ever read by you. Thank you for celebrating your daughter’s bravery by being brave in what you post. It will echo goodness and understanding through the community you have built!

    1. Hi Jacqueline — Thank you so much for the incredibly kind note! My daughter and I are so feeling the love today. Thank you.

      xx

  16. Oh, this was so eloquently said! My daughter will be born with a heart condition requiring surgery and I’ve felt similarly fiercely (pre-emptively, I’m my case) protective, even bristly, and simultaneously more tender towards families facing far worse. I love the photo at the top — the very picture of joyous resilience!

    1. Hi Claire! I so feel for you — the first days after mini’s diagnosis were challenging, as I got my wits about me with all that the next years would entail, and so I can empathize with how you might be feeling right now, facing all of these unknowns ON TOP OF pregnancy, birth, adjusting to life with a new child, etc. Sending you lots of love during this time. You got this, and so does your daughter. You can do hard things!

      xxx

  17. Jen! My youngest sister wore an eyepatch for years. (The treatment worked!) In hindsight, especially now as a parent, I am so impressed with my mother’s tenacity to establish it as a daily routine. I remember some screaming battles, rude stranger questions, etc. But now (20 plus years since I last saw my sister in a patch) it mostly feels like a testament to my mother’s care for her children. Thank you for this essay as it encourages me to consider my sister’s perspective as well.

    1. Hi Joyce! Thank you for this sweet note, and much love and respect for your mother and sister! I really appreciate hearing from families who have been through this 🙂

      xx

  18. My daughter who is now 9 has refractive amblyopia and quite an aggressive prescription. She patched for years too. It was a looong slog but made a huge difference. One thing we found that helped was maze books, it helped her vision a lot especially during patch time. Also we did the fabric patch over the glasses which was much more comfortable for her skin than the adhesive ones, found on Amazon or Etsy. She’s doing great though!! I know this road is tough.

    1. Thank you, Leslie!! Solidarity! Thank you so much for sharing this. So encouraging to hear from a mom (and her daughter!) who have made it to the other side of occlusion therapy. It’s funny — a mother came up to me one day at the playground and told me she had the same condition and it improved tremendously because she would watch her siblings play ping-pong while patching! This, along with your note, are encouraging me to keep her engaged with activities that require focus while patching. She does wear it while at Montessori so I know she’s getting a lot of eye exercise there with all of the various materials, grading and sorting activities, fine motor skill practice, etc. Anyhow, thank you for sharing your experience here. Much love to you and your girl!

      xx

  19. Thank you for deciding to share this, and pictures of your precious kids on the blog! My daughter has strabismus and has been wearing bifocal glasses since 2 years old, and I can relate to every single word you so eloquently wrote. We are so grateful we caught it early as well, and are amazed at our girl’s resiliency like Emory! All the mom feels on this one. You’re doing a great job!

    1. Hi Courtney – Thank you so much for sharing this, and for the solidarity and encouragement! God bless our sweet girls. And like you, we feel so grateful for (forever indebted to) the pediatrician who caught this at such a young age. Many children are not diagnosed until five or six!

      xx

    2. PS – You are doing a great job, too! No small feat to get a toddler to keep glasses on her face!

  20. Beautifully written and so touching. I continue to learn daily from my three boys who are 21,20 and 17. I am in awe of their grit and resilience, especially my 17 year old who has CP and is wheelchair bound. He is the happiest, well adjusted teenager. He is an active member of his high school and diligently preparing for his AP History exam……he encourages me to do hard things everyday.

    1. Hi Colleen – Thank you so much for the sweet note and wonderful reminders. God bless you and your son! There is clearly a lot of love and resilience all the way around in your family! xx

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