Yesterday while I was getting ready to put the eye patch on my 20 month old daughter, Jordyn, she looked right at me, shook her head and said, “No patch.” I wanted to congratulate her on putting that sentence together to express herself, but all I felt was my heart breaking at what I was doing to her. If someone else made her feel this way, I would kill them with my bare hands. But the culprit is me, and somehow that’s supposed to make it okay.
When my wife and I hopped into the cab on the Friday night marking 30 weeks of her pregnancy, we never believed she’d give birth to our twins almost 2.5 months early. To make matters worse, at the end of their one month stay in the Neonatal Intensive Care Unit (NICU), we found out that there was a problem with their eyes.
Premature babies can often get something called Retinopathy of Prematurity (ROP), which causes blindness in 2,000 babies a year. ROP occurs when a premature birth can end up leading to retina detachment and blindness. So every Tuesday morning during the bitter winter cold we would once again hop in a cab, this time to visit the retinologist. There are master torturers who could learn a few tricks from this guy. We held our children tightly so they couldn’t move and whispered soothing words while he put drops in their eyes and examined their retinas. I sometimes wondered if people from Child Welfare were going to bust in over the sound of their screaming. Hanging in the balance of this awful weekly adventure was whether or not they were going blind. That is the only reason we got through it each week; otherwise we wouldn’t have survived their painful cries. Sometimes, with tear drops on our cheeks and tiny four-pound screaming babies in our arms, unable to give each other a hug, my wife and I would look at each other trying to provide at least some comfort through our own good eyes.
At one of these dreaded visits the doctor turned to us and said matter of factly, “Elijah is doing well and I don’t need to see him for a couple of weeks. But I think we should schedule Jordyn for surgery next week. The sooner the better.”
One of the cruelest things to do to parents of preemies is to tell them their child will have to return to the NICU. On the morning of the surgery when we walked into the NICU, the memories of that place – visiting our children there and going home without them everyday for a month – made us want to grab our little girl and make a break for it. Despite delays that made us wait hours for (something we had hoped would never happen) and a last minute decision to operate on her supposed “good” eye, the doctor reported success.
For about one-year we have gone back to the doctor for check-ups. A few months ago, however, the doctor said her brain was beginning to ignore what her right eye was telling it because that eye never developed as strong as it needed to be. If her brain continues to ignore her right eye, it will atrophy and she will be blind in that eye. The solution: she has to wear a patch every day for one hour.
At first I had visions of my little girl looking like Captain Hook, but the doctor explained that the patch is really a large band aid that covers her left, stronger, eye so her right eye is forced to build its strength and her brain is forced to pay attention to the signals it sends.
Jordyn, to put it mildly, is independent. She is already her own person and knows what she wants. We were pretty certain she wouldn’t want the patch. We didn’t realize it would be the worst hour of every day, the one we would dread the most and that would last the longest. It is rather a common occurrence to go through two or three patches an hour because she rips them off, when we least expect it. In fact, she has worn, and ripped off, so many patches that you can see skin over her eye in places where she used to have hair.
We have tried so many different things to help her (and us) get through this. We distract her in as many ways as we possibly can. We save the patch hour for our big activity of the day so she is most distracted. I even talked with her every time I put it on, explaining to her how important this was and why we were doing it. We applauded and yelled “Bravo!” when she lasted the full hour and gave her as much encouragement as we could muster after the exhausting 60 minutes. It doesn’t matter. She still fights it and has gotten very good at ripping it off in one quick move. She has really learned and adapted more quickly than we can keep ahead of her. Sometimes, even when I’m holding her and holding one of her hands against my body, if I turn my head for two seconds she still yanks it off. We get so frustrated and angry because we don’t want to do this in the first place! We hate it. We would much rather enjoy the time with her.
Yesterday, however, was something completely new. She learned the word, “patch,” within the first week or so. I can remember feeling pride that she could learn that word and anger that she would even know what the word means. Other kids don’t know what the heck a patch is, because they don’t have to wear one! For the past few weeks, she has begun to fight us when it is time to put the patch on, challenging us to find the balance between forcing her to wear it and gentle persuasion. But when she looked right at me and said, “No patch,” I really wanted to pull her close to me, tell her how much I love her and promise never again, never again would she have to wear a patch. Instead, I pulled her close to me, told her I loved her and put her patch on against her will.