In March of 2018, when Finn was 6 months old, we had a follow up appointment with Dr. S to see how his eyes were healing after the second surgery. By this time we’d let go a bit of the search for a diagnosis and were focused more on moving forward and just taking care of our son. The problem was that my view and Patrick’s view on what that meant were starting to differ a bit. I am sure all parents find themselves at times feeling like they may be reading the same “parenting book”, but on very different pages or chapters from their partner. So I know we were not unique, but it did feel like our situation was a bit different in that neither of us had any blueprint from other friends or family to turn to for advice or reference. Should we handle it this way or should we handle it that way?
At the follow up appointment with Dr. S I fully expected to walk in and hear, “all is healing as it should be and come back in a few months”, but much to my surprise he not only said that, he told us that he believed Finn was perceiving some light! It was something that in the scheme of vision sounds so small, but for us seemed like such a huge victory. In that moment, it justified the surgeries and made me feel like my son would at the very least have the ability to navigate his way across a room more easily. We left the doctor’s office and I immediately texted our family to let them know the great news. I could tell as soon as I hit send on that text that Patrick was hesitant — he felt that we shouldn’t get our hopes up and in turn, everyone else’s hopes up, and essentially that we were getting ahead of ourselves. Around this time Patrick had reached out to an adult blind woman in our community, we’ll call her Miss H, who he found via the National Federation of the Blind — she had previously been the head of the local chapter here in Tennessee. He’d had a long conversation with her that had really changed his perception. He had been urging me to talk to her and I kept putting it off. I guess the truth was, as much as I’d begun to accept that my son was blind, I still couldn’t even say the word and wasn’t ready to thrust myself into the blind community and give up hope for a medical intervention. Well, a big part of their conversation centered around Miss H’s belief that Finn didn’t need to be fixed and medical intervention, if taken too far, would only cause him and us more pain and stress. She felt that being fully blind is actually better than having minimal vision as it just causes more strain for the blind person to try to see and do things their sighted peers are doing in the same way. And when they can’t it feels like a failure. For sighted people, like most of us in the world, this is just hard to grasp. At least it was for me. How could having no vision at all be better than some perception of light or shadows? Well, after talking to Miss H and our doomed trip to see Dr. Death, Patrick really shifted toward this view and wanted to move away from all the medical appointments and tests and just embrace our son’s life as a blind person. I remember him saying to me at one point, “Alison, our son is blind. He’s blind. Blind.” It was like he needed to repeat it to make sure I was processing the words. To him it was just a simple fact that we needed to accept. To me at that time, hearing those words were like a painful stab to the chest.
I was just not on Patrick’s page yet – I was a chapter or so behind. So I took it upon myself to make an appointment with a neuro-pediatric ophthalmologist in the area to get her opinion on Finn. I was still in full-on mom mode of leaving no stone unturned. Patrick tried to talk me out of it and almost didn’t go with me to the appointment as he felt we were wasting our time and putting Finn through another appointment that wasn’t necessary, but at the last minute he relented and came to support me. This was just days after our hopeful appointment with Dr. S. and I was feeling good. I thought the good news train was rolling along! We took Finn in and the doctor proceeded to run a battery of tests using different tools, lights, and even spinning him around in a chair. We sat patiently as she said nothing while she ran each test. Finally she was done and she turned to us and said, “Finn is receiving no visual input whatsoever. He has no light perception. I’m sorry I don’t have better news, but there’s not much I can do for him.” My heart sank. I’m not sure what I was expecting her to say or do, but it wasn’t that. I was crushed. Patrick was angry and we proceeded to have our first fight in the midst of all of this on our way home — he felt I kept pursuing dead ends that were causing all three of us more pain, while I felt that whatever pain I was going through was worth it to try to help Finn. And of course it was, but I hadn’t realized yet that there just wasn’t anything else that could be done. Maybe Finn was perceiving light. Maybe he wasn’t. Either way, it was out of our hands.
Patrick pleaded with me to stop the search for answers and cures — to just move forward with the job of loving and parenting our son, and accepting him just the way he is. I absolutely understood his perspective and never thought it to be wrong. But as Finn’s mother, I felt that it was my job to keep trying. And if I’m honest, I felt that my job while pregnant had been to bring a healthy baby into this world and I had failed — that this was my fault. Maybe it had been a beauty product I’d used, an exercise I shouldn’t have done, or a food I’d eaten that caused his blindness. Healthy, I now understand, is such a relative term. Finn is healthy, but it didn’t feel that way then. I felt like I had failed at my job. Patrick assured me over and over that this was not my fault, as did all of the doctors, but without an answer, the questions continued to circle in my head. I was on a mission to fix what I had done and I couldn’t let go of the guilt that propelled it. The weight of that was enormous and even today it has not all lifted. Maybe it never will, but I do know that each day it lessens. And I do know that Patrick understood my perspective too. He had just reached his limit with the roller coaster.
Soon after, we received our second round of genetic test results back and again everything came back negative. No answer. Slowly, I began to reach my limit with the roller coaster too. I finally agreed to a call with Miss H. Patrick set up a call for the three of us that week. Even through just a phone call, I was immediately drawn to her. She is originally from Australia and came to Nashville as a young adult to pursue a music career, successfully I might add. And she came here on her own. A common misconception about blind people is that they aren’t independent or self-sufficient, but after talking with Miss H, I figured out quickly that this is just not true. We talked for about an hour and she made me realize that the biggest problem for Finn has nothing to do with his health or his lack of vision at all. He is a healthy, happy, thriving baby! The problem is the perception all of us who are sighted have of blindness — that it’s a tragedy or that low expectations should be set for those without vision. It’s expected that blind people will need help in everything they do, that they “can’t” do certain things, that they should be felt sorry for. In fact, Finn can do anything his sighted peers can do — he may just have to do it in a different way. So what?! Over the course of that hour long conversation everything shifted for me, just as it had for Patrick when he first spoke to her months prior. I realized that I was among those with these terrible misperceptions. I was looking at my own son as if he was broken, as if he was going to be “less than”. My husband had already figured out that this notion was ridiculous and wanted me to hurry up and “keep reading” to catch up to his page. At the time it frustrated me, but looking back I realize he just wanted me to stop hurting. He wanted me to stop feeling sad, disappointed, guilty. He knew if I just kept going, I’d get there and the cloud would lift. And luckily I did. It did.
Do I wish my child could see? Of course I do! But I now know after getting to know Miss H better (more on her to come) and other blind adults we have now met, that living without vision does not mean life is any less full or that someone needs to be fixed. And I also now know that my biggest battle as Finn’s parent is going to be helping others to realize this. Helping him and those who teach him, care for him, or befriend him realize that he is capable of anything and that he should be treated and given expectations the same as any other little boy!
Tomorrow is Thanksgiving Day which is always a good time for reflection. I am beyond thankful for my son. For all he has taught me about love and life – and that’s A LOT. And I’m beyond thankful for Patrick, my partner in all of this. Even when we disagree, I know he has my and Finn’s best interest and happiness at heart. Marriage is hard! Parenting is hard! But what I’ve learned so far is that it’s important to allow your partner the space and time to navigate their way through whatever book it may be — as long as at the end of the day you’re still reading the same book and respecting one another’s process. It won’t be the last time Patrick and I are on different pages I’m sure, but that’s ok. Maybe next time I’ll be the one a chapter ahead and he’ll be the one who has to catch up!