At age 5, my daughter Eddy, was diagnosed with severe hyperopia with astigmatism, strabismus, refractive amblyopia, and an inflamed optic nerve. It was the week she was starting kindergarten. Our timing couldn’t be worse. A baby in diapers, a new school, and the world’s expectations that we are supposed to learn to read.
Her vision was 20/350, far past legally blind. When she finally got glasses she told me it was like someone had turned on the lights. The sinking feeling in my gut reached a whole new low to realize she had been living, and frankly thriving, in darkness. As I know now, if we had we caught it at age 2 or 3 we might not have had such a struggle to recover her vision.
I consider myself an educated, well read, dedicated and responsible stay at home parent, I went to every single recommended pediatrician appointment, made sure her eyes tracked, read books to her, watched her meet developmental benchmarks, watched her learn to write her own name, We brushed teeth, allowed no tv.... I did it all – except – I did not get my daughters EYES screened.
She wasn't walking into walls. She wasn't showing any signs of needing to see an eye doctor.
My pediatrician never even recommended a routine screening. There were no mommy blogs about it. Her conditions didn’t run in my family.
But if I am forever labeled a broken record, its ok —every child should have their eyes screened, and see a proper eye doctor by AGE three.
When my daughter Eddy turned 5 we were told she may need glasses. We were at a routine pre Kindergarten/birthday pediatrician appointment when she completely failed the Snellen test on the wall. What happened in the room with the vision machine is a mystery to me, but I’m guessing she didn’t do any better there either. We were given a business card to an eye doctor and sent on our way.
I like to note, Eddy was showing reading readiness, behaved well, and was doing everything perfectly normal for her age. The only— single only- thing was, that she never really ran a lot. I didn’t think much of it, because, well, I don’t like to run, so she’s just being my daughter. Eddy swam though, well. She could swim 50 meters independently, with no help from an adult by the time she was two. She is an amazing Eddyfsh! She was healthy, strong, athletic, articulating well, showing NO signs of vision impairment. So, I wasn’t worried at all. A lot of kids wear glasses. Glasses have also made a come back with the trendy hipsters. No big deal, I’ll call this doctor, we’ll go in, get fitted, easy, done.
Except ... it was Summer.
As do many doctors, this doctor was traveling for the rest of the month and the first appointment we could get was in about 2.5 months. I made the appointment and figured we’d wait. But school was fast approaching and I was starting to think it would probably be better if my daughter could adjust to new glasses before the school year began. I called around and every doctor’s office had the same reply: Appointment in two months. I began to just resolve to the fact we would have to wait.
Then it happened.... I took Eddy to the mall to do some returns. There were three hurricanes circling our area and because I had done all the hurricane preparations I could, I was feeling antsy about doing nothing and wanted to cross off the errands at the mall was — so figured I’d get it out of the way. My two year old was at her preschool, so Eddy and I set out for a nice mother-daughter mall outing. We got our returns taken care of and were walking when Eddy suddenly said, “Mom, I cant see.”
I said, “What!? What do you mean you cannot see?” And in no way hid my alarm. “It’s like everything is dark, there were spots, and now I cant see.” She replied.
With a deep breath, I said, “lets get you to a bench, do you think you’re going to faint? Are you hungry? Thirsty? Dizzy?”
I really wasn’t thinking blindness. And then she blinked and said, “No, I’m ok, I can see again. That was weird.”
But it didn’t seem right and those three hurricanes were abound. And in the back of my mind was watching her epically fail that Snellen test on the wall at the pediatrician. So I held her hand and said, in the lightest, ‘we’re going to have fun’ tone of voice that I could muster, “C’mon, lets go for a walk and check out the eye glass store! It will be fun— just you and me!” Because every sibling loves alone time with a parent — even if its going to the optometrist!
So, we went to a vision store in the mall. They were so sweet, and took us right away. They tested Eddy’s eyes thoroughly. The young optometrist was reluctant, nervous and sweet as he told me,
“Ma’am, I’m sorry, you need to see a pediatric ophthalmologist. I’m not qualified to diagnose your daughter, I think she is going blind in one eye.” My heart sank, I nodded, my eyebrows did the talking. He told the assistant to reverse the charges on my credit card, I shouldn’t have to pay. That’s when I knew it was bad.
I kept cheerful for Eddy, and probably got her an ice cream. I drove home in traffic. I tried to be enthusiastic to see my toddler. I may have made dinner? But I definitely called the one optometrist I knew, an old paddling teammate, Dr Jen.
I left her a long message telling her the whole nine yards. I told her I was confused and scared and maybe she could just explain it better to me. I asked if her she could ring me back— that maybe she could tell me what this guy meant, it had to be a misunderstanding. I thought she would call back the next few days.
However, just 90 seconds later my phone was ringing. Honolulu Eye Clinic was on the line asking me to bring my daughter in the very next morning to see their pediatric ophthalmologist.
It was obvious this was clearly the work of a doctor who’s clinic is committed to making sure she will be available if a child needs her service, is dedicated to helping children see, committed to solving vision problems, with a singular mission to treat all children in need of eye care.
The next morning, I dropped our little two year old at the babysitter’s. I came home to grab Eddy and go to the eye dr. My husband works from home and asked if he should come along. Usually I had handled all the kids’ doctor appointments. He said he had a slower day at work, he could come. So I said sure and I am forever so glad I did.
I have been fortunate enough to have 20/20 vision my whole life. I was practically a foreigner to eye doctors’ offices. I had no idea the battery of tests that could occur. I had no idea there were so many ways to test eyes. Our appointment was at about 9 am and there was no waiting. Eddy went from one test to the next, one after the other and the other and other. The pace was steady. I had lost total track of time. Eddy went into another room with Jeff, my husband, while the doctor stayed with me in the exam room. She asked, “What did the dr at the vision store tell you?” I told her how he said it looked like she was going blind in one eye.
Then, our pediatric ophthalmologist, somehow both gently and frankly said, “He was wrong. She is going blind in both eyes. Eddy has refractive amblyopia and her optic nerve is inflamed. It is rare, but possible that the combination of her losing her sight and the way the optic nerve presents itself is caused by brain tumors. I am ordering a cat scan.
Any comforting words or statistics to assure me it was only a slight possibility were basically her mouth moving and my heart sinking.
Then there was a bit of waiting, paper work, picking out glasses. I remember my brother texted during that time some joke about his kids misbehaving. All I could reply was, “sounds like a lucky day...at least they aren’t blind.” I’m pretty sure he didn’t know what was going on in my day, so that text was a head scratcher for him. But I remember his completely benign text because it was a defining moment for me. I knew that life was no longer the same for us. At that moment I recognized my kids giving me a hard time at bath time could be the best problem I could ever have. Some people have a bad day of kids bouncing off walls and some people have bad days of dealing with a blind child. And I was processing so much information I wasn’t sure which category I was going to fall in.
And this was before the doctor even told us about patching! I just knew we were having our first, and most major health concern our family ever had to bridge together unfolding in front of me.
All this going on, all the tests, all the information, all the decisions, I must shamefully admit, I forgot that I had a second child. I literally forgot about Nanea. We were supposed to pick her up at 4 pm, and it was now 5:30. I sent my husband and Eddy to go get her. Another defining moment, I will never forget, being able to rely on a good babysitter. Auntie Rowena—the best ever. She brought our baby to her high school son’s football practice. She never called, she knew where we were. She knew we would find her.
When I finally asked all the questions I could, and paid and ordered all further testings and glasses I could, I left the office. I got in my car and somehow it drove me through traffic as I sobbed. I was so scared of the brain tumor possibility. I was in shock of it all. I cried hard with who knows who in the lane next to me, staring as clearly, I did not appear to be a safe driver. And then my brother called, and I am not sure he could make out a word I was saying. But I was repeating, “how do I tell Mom? How can I tell Mom her first grandchild is going blind? How do I tell her? Can you tell her?”
For whatever reason, at that moment the idea of sharing this news became daunting to me. I didn’t want my parents to have to feel the same awful sadness and fear I was having. And I had already begun to tear myself apart for being the worst mom in the history of the world for letting her daughter go blind. How could I have not seen this? Or taken her to a doctor sooner? This is all my fault. I had failed my daughter and now I had to tell my parents I was a failure and ruined their beautiful grand daughter’s eyes.
This of course was the first day we found out. And the word “blind” was a big, strong, scary, impending, dark, dooming, foreboding forecast. And the words “brain tumor,” no matter how unlikely was a combination of words which every single parents never wants to hear. I will confidently make that generalized assumption. No one wants to imagine the words, “brain tumor” connected to their child’s name in a sentence. Now, years later, emerged in communities of patching parents, I have learned that Eddy’s diagnostic was frankly fantastic. There are far more difficult conditions for infants’ eyes, and even
more complications that can occur with injured eyes. We think patching is hard, Eddy hates it, but we do know, in some ways, we are the lucky ones. We patch, but do not need repetitive surgeries.
If you are reading this through the See Worthy Patches website blog, you have likely been through a similar experience. Whether you caught amblyopia late, or your child was born with an ophthalmological issue that was obvious right away, the idea of sharing the news, and sharing the journey you are about to take, is not natural or easy. It’s your news and you want to keep it and not share it, hold it, nurture it, make it sit right with you. Then, you know its not a secret and you have to let it out to your world, but how? Wrap it in a bow? Wrap it in sunshine? Throw it out there like the curve ball it is? Puke it on strangers to try it out first? Write a letter? Hire an informant? And then you just do.
And slowly we began to tell our world. Family first. Then we had to tell our brand new school and kindergarten teacher. Then friend by friend. Each one supportive in their own unique way.
When we got home that night from the eye doctor, my husband very seriously said to me, “what ever that doctor told you while you were in the room with her, I don’t want to know. You haven’t looked the same since, and I’ll handle it much worse than you.”
And like that we somehow agreed I’d keep it to myself and he’d pull my weight around the house... since I was carrying the weight of this worry. And I’m pretty sure there are some marriage counselors who could have a lot of fun analyzing or sorting that one out... but it worked for us.
The weeks we waited for the cat scan and its following results were hard. My mind wandered to all the wrong places each evening. My husband pitched in more with the girls and dinner so I could spend some time crying alone in my room. I kept telling myself, I can handle blindness - but not brain tumors. Not an awesome mantra — but I knew I just had to get past this cat-scan hump. Prayer and meditation are private moments and I’m not sure if I can validate my selfish cries as any of those. But I did make one promise to myself - or to the world - or to a higher power. I swore that if we came out on the right end of this— I would dedicate the rest of my life to eye health, to helping families with children who have to go through anything similar at all.
It would take a while for me to figure out how I was going to do it. As any parent with any health concern, I scoured the internet’s and researched every angle I could. As time went on, I realized there are many many organizations out there to help families of the blind. There was a lot of support if one searched. I also learned that if we had taken Eddy to regular eye check ups, our situation would not have been so dire.
It soon became obvious to me that there wasn’t a lot out there for vision screening awareness. So I toyed with the idea of starting a foundation. I investigated the ideas I had to promote vision screening awareness. But always came up empty on how to do it, or fund it. Let’s be really real... we all get asked to donate to so many different causes, from leukemia, to your local schools, rare diseases, or fireman’s association. Every cause is in need. My cause seems to slip on the priority pole when you talk about awareness— not curing blindness. So I toiled with these ideas and time went on.
After Eddy began wearing her glasses, the change in her was immediate and remarkable. She literally stood up taller, smiled deeper, and bloomed like a flower. A few months into becoming a new more confident kid, we had another ophthalmologist appointment. This is when we were told about patching. We were on the upswing, we had found out Eddy had no brain tumors, her glasses were helping her eyes have slight improvements, everything was going well, but there was still al to more work to do. We took the prescription to patch happily as we were willing to do anything to save her eyes.
Then began the journey of patching. Eddy was remarkably compliant. I was shocked at her cooperation. After her first appointment of wearing a patch, her vision doubled. But I couldn’t help but notice immediately how unattractive these things are. Their appearance pales in their function, and that should
be all that matters. Frankly though, I am the type of person, if I’m going to buy a salt shaker, I want the one that looks best. I believe most people feel this way. I always tell the story about how when eddy was about 4, we were in the mall. She told me she’s didn’t want to get her clothes at the baby store, a chain where many moms shop for clothes infant to 8 yrs old, she wanted “that store” and pointed to the surf shop across the hall. Kids intrinsically know what is cool.
To that point, they want to wear something that looks hip on their faces not baby stuff. Especially a 5.5 year old who is in school with fifth graders who are 10/11 years old! I began brain storming graphics, and ideas and ways to sew, paste, print. But I was so out of my realm. My background was teaching and writing mostly... not medical product development. The longer we patched, the more problems I saw with the existing options. They were sweaty. They are not waterproof. They look so medical. They are hot. The don’t last. They are mostly ugly. They are uncomfortable. They have adhesives that cause skin irritations.
It is more than designs, its making a more comfortable and easy to wear occlusion patch. That was it. I will find a way to do this! And I will share my proceeds, no matter how large or small they may be with existing vision screening awareness organizations.. maybe one day have my own, but for now support the ones already doing a great job.
This was how I began my eye patch company. I knew as a mom who wants nothing more than health and safety for my kids, that would have to be my priority for this product. I cannot stamp this as a mom created product unless it is the safest, most gentle product in this market. That is the approach I took. It took me years before I could source the right people to work with, to trust with this idea and trust to create the level of quality I wanted.
I named the company “Malu Eye Patches” originally. In Hawaiian, “Malu,” means “Darkness, where lightness is blocked.” This seems to perfectly define occlusion, which is the darkness created by patches that rectify amblyopia. While I loved the name Malu, it proved to not be easily spoken by those outside Hawaii. As with many Hawaiian words it has multiple meanings as well. Some of the meanings, like ‘loin cloth,’ were not entirely apt for young children.
Meanwhile I became involved with my local organizations for public vision screenings. I have helped out with vision screenings at public schools with the Lions Clubs. I have spoken at ‘Project Vision Hawaii’s Eye Ball.” And most importantly I have dedicated the time and effort to structure my company so that a portion of our proceeds go to these causes.
So, when I chose a new name for my eye patch company, I wanted it to reflect our commitment to giving back to the eye health community. Of course, my love of the ocean was also in mind, and See Worthy Patches was born.
I have never enjoyed working more. And I have barely even begun. The past couple years my product development team and I have been talking regularly. I love these guys. I joke that if my husband hears me talk about “Chase & Jason” and how great they are, one more time..... But really, I feel so validated in my mission with See Worthy Patches, by how lovely the process has been. Working with this team has been productive and nothing short of impressive. The community of patching families I have met in cyber land, and the community See Worthy has built through social media has been heartwarming, profound, and again, validating.
See Worthy Patches were created on a promise I made to myself in those dark hours worrying my first born daughter may not see, or worse have brain tumors. But ultimately, it was born from necessity. Every day I receive an email or message from a new parent who needs a patch that their child will be inclined to wear. Nothing feels better than knowing we can help them! I know there is a need for this product, and I feel honored this path presented itself to me. I aim to normalize patching and give back in the process. Every time a family buys a box of our patches, we hope their patcher can wear it with pride, with ease,
and with success, contributing to a larger community of families who also patch. Remember — 2-6% of children need to patch. That is 1 in 45. You are not alone. — and we’ve got you covered!