Almost immediately after learning Finn was blind, I began asking myself this question all the time. As the old saying goes and, it’s better to have loved and lost than never to have loved at all. But, does the same hold true for a sense like vision?

People say to me all the time in learning of Finn’s blindness, “thankfully he was born this way and doesn’t know any different.” Often times I think that’s true, but other times I think life would be a lot easier for him if he had at least been given the opportunity to learn about the world through sight, even if only for a little while. For example, Finn will never truly know what a color is. How can you explain color? With so many things, I’m able to help Finn understand through touch, through sound, through smell. Colors are different. They can only be seen to be understood. The concept of the sky is another one. You can’t touch, smell or hear the sky. Sure, in time Finn will understand size and distance and he can start to grasp how vast and expansive the world and the sky is, but wouldn’t it be more fully grasped if he’d seen it even just once? At least that’s what I assume as a person born with vision.

In trying to answer this question of whether or not my son is “better off” having been born blind, I’ve asked the blind people I’ve come in contact with, and researched those who’ve shared their stories, exactly how they feel about it. The problem is, yes, they can answer this question better than I can, but they still have only their own experience to rely on, and obviously no one can ever experience both being born blind, and losing blindness later in life, in order to compare the two. Still, I have found that hearing these stories have gotten me closer to my answer.

Of those who lost their vision in childhood or later in life, many describe an overwhelming sense of loss and sadness that immediately followed. I met a man on vacation last summer walking with a cane and approached him by the pool. He lost his vision in his late teens due to a genetic disorder. He said the loss was extremely hard for him and took him years to work through and begin to cope. Hearing this made me so thankful that Finn would never have to go through that sense of loss, through the loss of a sense. However, this same man was vacationing with his family, having a wonderful time, told me of his successful career, and said that he’d gone on to live a very full life, one that by all indicators seemed not too different from my own. He mentioned that his sister had made a career out of helping those who are blind as a result of his diagnosis — she opened a center in the Southeast dedicated to aiding the blind find employment. Would she have chosen this path had her brother never become blind? Likely not. For that reason, among many others, he felt that his blindness had happened for a reason and he wouldn’t change it.

I read the biography of Ed Lucas, a blind sports broadcaster. He lost his vision at age 12 after an accident playing baseball. He, too, says he went through a dark time after losing his vision, but that he would never accept an offer to be given his vision back. He says he would never have gotten to create a lifelong career in baseball, the sport he loves, if he hadn’t lost his sight. Relying on his hearing to listen to games instead of watching them gave him a unique perspective and acuity that led him into broadcasting. He also says losing his vision changed the way he viewed the world and people — judging on character and integrity rather than outward appearance. He says in his book, “Though I didn’t realize it back then, God graced me with a wonderful gift: When he took the use of my eyes way, he allowed me to gain an even better vision of the world than I might have ever known.”

A blind architect was recently profiled on 60 Minutes and he echoed this sentiment. When he lost his vision as an adult he was already well into his career. He was asked by many people upon hearing of his vision loss, “Well, what are you going to do now that you can’t be an architect anymore?” He turned that negativity into personal drive to prove otherwise. He found a way to create raised, tactile drawings of buildings to discuss with colleagues new ideas, and went on to design buildings that feature raised dot flooring, echo location systems and other adaptive features for the visually impaired. Without losing his sight, he would never have taken his career in this new direction, nor had the impact he’s had on others with visual impairment who live or work in one of his buildings. He says he is even happier now than ever.

You’ll hear in interviews with any blind person the interviewer almost always ask, if you could have vision tomorrow would you take it? And almost always the answer, even among those who’ve had vision and lost it is, no. They say that losing their vision led to where and who they are today whether that be a stronger, less judgmental person; a new career path they might not have explored; meeting someone they otherwise would not have met; experiencing the world from a new perspective; or like the man by the pool, to influencing the life path of others. At first I thought this was crazy! How could you lose your sight and not want it back if given the opportunity? But, isn’t it so often true that the biggest losses in our life usually lead us to greater things and lessons we become thankful for, ones that we wouldn’t trade for anything?

Of those who have been blind since birth, a more rare experience, similarly, none of the ones I’ve heard from wish for sight. This is less surprising to me since I can grasp the idea of not wishing for something you’ve never had or known, but yet it’s still hard to fully understand. I saw an interview with one man who said he wished he could see his wife and children’s faces just once, but then he’d want to return to being blind after that image was captured in his memory. I found this to be so sweet, but again crazy! Why would you not want to keep the vision forever? Our friend, Miss H who I’ve talked about in previous blogs, was born blind as well. She’s told us of her wonderful childhood growing up in Australia where her parents treated her no differently from her siblings and as a result, how she felt no different. She was encouraged and supported in pursuing whatever dreams she had in life, just as her sighted siblings were. She went on to move to America on her own and succeed in a long career in music and now education. She, too, has said that she does not wish for a life with vision, or any other life than the one she has.

I had been coming at this from the view of, if a genie could grant you a wish to make your life easier, better wouldn’t you want that? But there I go again assuming a life without vision is lesser than one with, or that I could ever understand what it’s like to be blind. Of course my research has not been comprehensive and is based solely on subjective conversations or interviews in a short amount of time, but I have certainly seen a pattern amongst those I’ve heard from. Both groups, those born blind and those who have become blind, have adapted, thrived and excelled in this world that is strongly geared toward the life of a sighted person.

Patrick and I were visiting some friends and family in California not long ago and one of our friends was meeting Finn for the first time. We started talking a lot about his blindness and he said something that was so simple, yet so profound. He said that every single person in this world experiences life from their own, unique perspective. The way I experience the world is different from the way Patrick experiences the world because we are two completely different people even though we may both have all of our senses. The same holds true for Finn. Yes, he’s different. But, we all are. Every single one of us. And isn’t it exciting to watch and learn how Finn will experience the world in his own way? I really loved the way our friend was able to simplify something so complex. Why should we assume that Finn’s lack of vision makes his experience any less worthwhile, fulfilling, or complete than our own?

It’s pointless for me to worry about how Finn is going to learn about colors because he’ll learn about them in his own way. I know of a toddler at our local school for the blind who will only sit in a red chair at school because red is his favorite color. He’s completely blind and has been since birth, yet he has a favorite color, which I find so interesting. Maybe it’s because he’s heard his siblings or other kids talking about their favorite colors so he wants to have one too. Maybe it’s because he’s created his own idea of what red is and he likes that better than what his interpretation of blue or yellow is. Whatever the reason, he’s come to perceive color in his own way. Finn may not be able to see colors they way I do, but I’m not able to see things in the way he does either. That doesn’t mean either of us is at a deficit, it’s just our unique experience.

All of this is to say I’ve yet to come to a definitive conclusion to answer the question, is it better to have seen and lost, or never to have seen at all, but I’ve stopped wondering about it so much. Everyone’s experience is unique so most likely the answer is that neither is better than the other. Yes, I’m very thankful my son doesn’t have to experience a major loss by having vision and it slowly deteriorating to blindness, or go through the immediate sadness or depression that could potentially ensue from that loss. But, he’ll experience other losses and tragedies in his life as we all do at times. That’s life.  Regardless of how his blindness came to be, it makes Finn who he is. I love that he will only judge people based on integrity, character and heart without any aesthetic bias ever coming into play, as Ed Lucas pointed out. I love that he has no interest in screen time or television thus far and would much rather be outside playing than anything else. I love how excited and mesmerized by music he is at such a young age. I love how he recognizes my presence solely by my sound or touch. And every time I see my son let out a huge laugh or giggle, I am reminded at just how happy and thriving he is, vision or no vision.

So now it’s my turn to make you think I’m the crazy one. If there were a medical miracle created tomorrow that would give Finn vision, I honestly don’t think I’d pursue it, and Patrick agrees. It’s hard to say for sure, but we both think we’d hold off until Finn is older and could make that decision for himself. After hearing time and again from so many blind people that they don’t wish for vision even if it were an option for them, I have to take that to heart.  I have to stop thinking someone is crazy simply because I haven’t been in their shoes in order to understand their perspective. Finn’s blindness is not life threatening, it’s not even life altering in his case. It’s just his life, and has been from the start. Finn was born blind and that will give him the one-of-a-kind experience in life that he is meant to have. Just like those who lose their vision later in life have their own one-of-a-kind experience. Just as you do, just as I do. We all come into this world exactly the same — as different human beings with our own blank slate waiting to be filled in with unique life experiences, and isn’t that such a crazy beautiful thing?

Having been through a terrifying delivery and subsequent surgeries for my son at the beginning moments of his life have given me a pretty good “don’t sweat the small stuff” mentality to parenting. Most things pale in comparison. When Finn has a cold or goes through bouts of fevered teething I’d like to say I handle it pretty well for a first-time mom. So when Finn was turning 10 months old and got sick, I at first thought nothing much of it — it was just more of the “small stuff.” He was fussy and spitting up a bit more than usual, and wasn’t eating as much as he usually did. His eyes were red and a bit watery, but this wasn’t unusual. (Since Finn’s surgeries, we were still applying a pretty frequent regimen of eye drops to help prevent infection. It wasn’t all the time, but occasionally he would exhibit some redness or irritation in one or both eyes and we’d administer a week or two of prescription drops until it subsided, which it always did.) I checked his temperature frequently and there was no fever so I assumed he might be teething again or just have a stomach bug that would quickly pass. Unfortunately, I was wrong.

After a couple of days, Finn started vomiting everything he ate or drank and he was becoming increasingly lethargic. I was used to spit up, of course, but this was full-fledged projectile vomiting multiple times a day. We called the pediatrician and took him in immediately. Our pediatrician did an exam and said it was likely a virus that many kids were coming in with, but he did point out that it was odd that Finn had no fever or diarrhea, which was the case with most of the other children with the virus. He sent us home and told us it should clear up in a few days and to try to get Finn to take in as many fluids as possible, but if it were to get worse at all, to call him after hours. The next day, Patrick was heading out of town for a separate family health emergency in California. Despite the terrible timing, I urged him to go ahead with his trip believing it was just a virus and would clear up. He hesitated, but proceeded with his trip. Later that day, the vomiting got worse and Finn was so lethargic that he was sleeping in my arms all day long. He could barely lift his head and was completely lifeless. Panic started to set in. I called the after hours number for our pediatrician and the on-call nurse suggested I go straight to the ER. This was the first time I’d been to the ER with my son and though I was still somewhat calm on the outside, I was terrified on the inside. I was instantly transported back to the fear and panic I felt in those earlier moments of Finn’s life.

Upon entering the room, Finn vomited all over the floor and me. I gave the staff his medical history (blindness and surgeries included for what it was worth) as well as a debrief of all of the symptoms he’d been having that week and our visit to the pediatrician. They immediately took blood (my least favorite thing to watch him endure, but he was so lethargic he barely flinched this time) and took it to run tests. They then did an ultrasound on his bowels to see if there was an obstruction of some sort. Finally, they did X-rays on his stomach, mentioning something called stenosis (a narrow or blocked channel between the stomach and the gut), which could only be cured by surgery. The word surgery fell heavy on my mind and heart — the panic increased. Please let it be something more easily fixed I silently begged. After an hour or so, they came back and said all the tests came back normal — they ruled out appendicitis, infection and thankfully, stenosis. They administered anti-nausea medicine and made me wait a half hour to see if Finn could hold down Pedialyte. He did. I was relieved. They monitored him for a while longer, taking his vitals and making sure the vomiting had stopped. After a few hours they ruled it likely a virus, though again, they said the same thing our pediatrician had said — that it was odd that there was no fever or diarrhea accompanying his other symptoms. Yet once again, no true diagnosis  — Finn was a unique case. (I was beginning to feel like my child would never fit any of the normal symptoms for anything and would always be a medical mystery.) They sent us home with a prescription for the anti-nausea meds and told me to follow-up with the pediatrician. I took him in the next day – at this point Finn was still lethargic and not eating solid foods, but was vomiting less and holding down fluids. The pediatrician examined Finn again and said it was basically a wait until it passes game at this point. He didn’t seem to love the anti-nausea medication for a baby so young, but agreed it seemed to be helping so he suggested we use it only as long as we had to and to follow-up with him again in a couple of days.  This had been a full week now.

As I sat at home that evening I felt completely helpless once again as Finn’s mom. As you know from my other blog posts, when I feel helpless, I’m a leave no stone unturned kind of person – at least I’d turned into one when I became Finn’s mom. The mention of the oddness of no fever or diarrhea from multiple medical professionals kept playing over and over in my mind. Virus didn’t appear to be a perfect fit and so for me, it just didn’t sit right. I got a strange hunch in my gut that told me to reach out to Dr. S, Finn’s eye surgeon. He’d given me his cell phone number from the first time we’d met with him and I’d used it only a few times before – mostly follow-up questions regarding Finn’s healing after surgery and maybe once to gloat after my UNC Tar Heels had beaten his Duke Blue Devils in a high-stakes basketball game (the rivalry of our competing alma maters was always a well-appreciated ice breaker during our appointments with him). It had been a while since I’d had to use that number, but I was at a loss after seeing every other doctor I could think of and yet, still sat with a limp, rag doll son in my arms. It was late, but I sent the text — I reminded Dr. S of who I was and explained briefly what was going on. Within minutes my phone rang and he was asking me for more details. He told me to bring Finn in at 7am the following morning and he’d take a look. The next day I arrived downtown with Finn at Dr. S’s office promptly at 7am. After a quick examination, Dr. S knew exactly what was wrong.  It turned out that Finn had some bleeding behind his right eye that had created eye pressure so high he’d been having severe migraines which caused all the vomiting. I couldn’t believe it. I was so thankful yet again for this doctor coming into our lives and having some answers. At the same time, I was riddled with guilt once again — the thought that my infant son had been enduring such severe headache pain for a week that he was continually vomiting broke my heart and was a punch to the gut. Why hadn’t I thought of his eyes sooner???

Elevated eye pressure often accompanies eye conditions such as glaucoma, but Finn had never exhibited any issues with pressure thus far — and since he doesn’t have a diagnosis it wasn’t something we were on the lookout for. As with so many things, it was a case of you don’t know until it presents itself. Dr. S sent us home with three eye drop prescriptions to be given several times a day and instructions to keep Finn upright until the symptoms subsided. This is a lot harder than it sounds — I attempted to get him to sleep in his car seat or stroller at night or for naps, but of course that would only last so long so I ended up sleeping with him in a chair, both of us sitting upright for several days. Dr. S said within a day or two we should see progress and he was exactly right. Within a couple of days my pitiful little baby was coming back to life, regaining his appetite and no longer needing the nausea medication given at the ER. Of course I was still kicking myself for taking so long to realize his eye was involved and causing the other symptoms, but I reminded myself that neither Finn’s pediatrician nor the ER doctors ever said or thought this had anything to do with his eyes either, despite knowing the full history or that his eyes were a bit red and watery. We had another follow-up with Finn’s pediatrician a few days later and after telling him what transpired, he said to me, “I feel so helpless when it comes to your son and I’m so sorry.” I replied, “Don’t worry, I feel the exact same way.”

The fact is, babies who are born completely blind are extremely atypical. I’ve tried to find statistics on exactly how many, but there really aren’t any statistics that can tell me how many Finns there are in the world. The statistics lump together “legally blind” with “completely blind” and those “born blind” with those who “become blind” and then those who have a clearly diagnosed condition have their own statistics. So, I guess that tells me just how rare Finn is. When a 10 month old comes into the pediatrician’s office or ER with vomiting and diminished appetite, 99 times out of 100 it will be a virus or a food allergy or something else common. What are the chances that it’s eye pressure causing a migraine? Pretty damn slim, especially when the child has never shown an eye pressure issue up until that point. Further, neither the ER near us nor our pediatrician’s office are equipped with the tools to check for eye pressure — I’ve since asked.  It’s just not part of their routine scope of work. I’d texted my doctor and nurse friends during all of this, and even mentioned Finn’s eye being red and watery, but no one until Dr. S, who is trained specifically in the eye issues Finn has, realized what was actually going on. So I don’t fault Finn’s pediatrician or the ER staff or even myself (for the most part), though I’ll admit it annoys me that my son’s symptoms were such a rare case that even our ER would have had to refer us elsewhere to have his eye pressure checked. Finn is unique little boy growing up in a world where we’re all trained to fit everything into typical boxes.

This terrifying episode was yet another lesson for me as Finn’s mom. I learned that sure, my son at times will check all the typical boxes that other children do – like when he spikes a fever while teething or battles an ear infection, but I also know I can’t let my guard down. I have to always ask myself, is this typical kid stuff or is this something related to his very atypical eyes? Of course, now that eye pressure has presented itself, though thankfully it hasn’t since, I’ll know what to do if there’s a next time and I’ll act faster. But I now sit and wonder, what other things haven’t presented themself yet? It’s a scary thought and all I can do is follow that hunch in my gut when things just don’t seem right. If doctors are saying “it appears to be this, but doesn’t quite fit” I know it’s time to start turning over more stones.

Finn has a big sister, Ariella, an amazing, spirited 6-year-old who is Patrick’s daughter from a previous relationship. She unfortunately lives all the way around the world in Australia which is why she is not a part of Finn’s, or our, day-to-day life, but she is very much an integrated part of our life and his. Our process to acceptance of the physical distance from, and my husband’s relentless efforts to ensure emotional closeness to, his daughter could certainly be its own blog topic. I introduce her in this blog now because she didn’t get to meet her baby brother for the first time until he was 9 months old. Patrick visits his daughter every three months, but she has only been able to visit us in the US a few times now.

When I found out I was pregnant with Finn, Patrick told Ariella during one of his visits that year by presenting her with a t-shirt that read “I’m going to be a big sister.” She was immediately thrilled and squealed, and only mildly disappointed when she heard it was a boy and not the sister she told us she preferred. After Finn’s birth and subsequent (non) diagnosis, Patrick had to explain to Ariella that her baby brother could not and would not be able to see her. He explained that Finn was born with essentially broken eyes for lack of a better word. We braced ourselves for the conversation and the questions that might follow. Her reaction: “Oh, OK. But he can hear me and touch me?” Patrick: “Yes, honey, he can hear you and feel you.” Ariella: “OK.” And off she went to color a unicorn. She was unfazed.

Over the course of the next few months Ariella would always ask to see and talk to “Finny” during our weekly FaceTime dates. Sometimes she would yell when talking to him, seeming to confuse blindness and deafness, which always made us laugh, but she never really asked a lot of questions about his blindness and treated him just as any big sister would her little brother.

Last July, Ariella’s mother made the trek to bring her to meet her brother for the first time. We met them in Los Angeles where Patrick’s family all live to make the journey easier on them, and to give both Ariella and Finn time with their grandparents, aunts and uncles, and cousins. We were all beside ourselves with excitement and yet I carried a little anxiousness with me about how Ariella would react to her brother in person, and he her. Would she have a million questions about his blindness that we weren’t prepared to answer? Would she think his eyes looked weird? Would she find it hard to connect with him since he couldn’t see her toys or books and find that frustrating? Would they bond? Would he recognize her voice or treat her as a stranger and cry, hurting her feelings? Of course, my anxiety was all for not. Their bond was immediate and so touching that both Patrick and I couldn’t help but cry tears of joy. We spent a week together as a family and it was thus far the happiest week of my life – probably will remain so until the next one we have together. I watched Ariella with her little brother and she was so enamored with him. She even proposed marriage to him with a flower by the end of the trip. She seemed instinctively to know exactly how to be with him – to touch him to create a connection, to narrate to him what she was doing, to soften her voice when he became overwhelmed by all the noise. She did ask if Finn would ever be able to see her, a fair and natural one to ask. When given the answer most likely not, she was OK with it. She just wanted to know.

Over the course of the last year and a half in telling people about Finn, or introducing people to Finn, we’ve encountered a gamut of reactions. One of the earliest was an older nurse at our surgeon’s office who was entering medical information about Finn in the computer as we answered them, and then proceeded to burst into tears and tell us how sorry she was. At first thought I appreciated her sympathy for our situation as I was feeling pretty sorry for myself those days too, but soon thereafter I realized how wrong of her it was to impose feelings of sadness and tragedy on my child for the way he was born, not to mention extremely unprofessional. A pharmacist at Walgreens had a similar reaction when I went to pick up Finn’s prescription for eye drops after his first surgery, “Oh my God, and there’s nothing they can do?!?! I’m so sorry and will pray for him!” On our trip to Los Angeles to see Ariella a cashier at the grocery store blurted out to Patrick, “What’s wrong with his eyes??”

Tears and prayers have been the most common reaction alongside a now instantly recognizable pity face. On the other end of the spectrum have been those who barely react at all. Perhaps they just don’t know what to say and don’t want to make us or themselves uncomfortable so they move on to another topic as if I’ve just said my son has a hangnail. Somewhere in the middle is the best reaction, in my opinion – that of interest in who my son is, but not an assumption that his life and ours must be tragic. I ran into an old friend at the airport not long ago and I was holding Finn. He was making silly faces at Finn expecting a reaction as most people do when encountering a baby so I explained that Finn is blind. His response: “Oh, I didn’t know, but he can certainly feel can’t he!” And he proceeded to lightly caress Finn’s arm and talk to him. There was no pity. There was no shock even. Just a natural adjustment in his own interaction with my son in order to connect. It reminded me a lot of Ariella’s first reaction and interactions with her little brother.

I’m rarely, if ever, offended by any reaction within this range (well maybe a little by that cashier). It has always been my philosophy to judge people on their intentions above anything else. If someone wants to cry for my son, pray for my son, or ask a million, sometimes inappropriate, questions about his eyes, I know that almost always comes from the best of intentions and just a lack of experience with encountering a blind child. But reactions can have a real impact if given at a vulnerable time, just as that nurse immediately made me feel sadder and that pharmacist immediately made me feel more hopeless.

My job as Finn’s mother is to protect him, and as he gets older and can comprehend these reactions himself I feel very anxious about how he might be affected. Finn doesn’t need to be told that someone is praying for his vision to be restored – this could lead him to falsely believe that he is inadequate, or that some miracle is out there to give him this thing called vision that he has never known, yet everyone else seems to think he needs to live a full life. I’m sure many might disagree, but Patrick and I are not interested in giving Finn false hope, leading him to live a life where he’s constantly chasing or wishing for a different life than that he was born with. In a way, it would be like us telling a child who was born short in height to pray for a miracle or medical/technological advancement in the future to make him tall. That’s just silly and there’s nothing wrong with being short!

Finn doesn’t need sympathy or someone crying to him over his blindness – this could make him feel that there’s a reason to feel sad or that he’s lost something that he’s never even had. Finn is the farthest thing from sad (unless you tell him it’s nap time) and I want him to stay that way.

Finn doesn’t need someone ignoring him simply because they don’t know what questions are appropriate to ask or how to approach him without startling him – this could lead to his feeling isolated and outcast. I want my son to be approached and included just as any other child would be on the playground, at school, in the grocery store, at work, in life.

Finn just needs to be treated like anyone else with just a few slight adaptations on their part, not his, to connect. For example, when I encounter a blind person I always say “Hi, I’m Alison, and I’m reaching out to shake your hand.” The first time I did this I was nervous, but that was my own insecurity and issue, not his. This person turned out to be one of the most fascinating people I’ve ever met so it would have been my loss if I’d taken the easy route of ignoring him instead.

I write this post to encourage us all to act a little more like Ariella, or like my friend at the airport, when we come across those who may be disabled, different from ourselves, or fill in the blank. Be unfazed, be kind, be interested, be inclusive and be yourself! I’m willing to bet we’ll all be glad we did.

By the time Finn was 8 months old, we’d really come a long way since those early days after his birth. Doctor’s appointments were less frequent. The surgeries were behind us. We were on the same page. We were engrained in the every day job of parenting our son. As most new mothers do, I imagine, I was spending any free time I had immersing myself in books — “how to get your baby to sleep through the night”, “how to raise a kind human”, “how to make your own baby food” (a short-lived phase), “how the hell to get your baby to sleep through the night?!?!” among others.

On top of the usual parenting books, I was also reading anything I could find about how to raise a blind child. As rare as our situation is, the amount of literature published on the topic is scarce to say the least. I did find one book that was extremely old and extremely technical. But, I took what I could get. The first few chapters were a biology lesson in how the eyes work and communicate with the brain. Helpful information I suppose, but I was well past any interest in the mechanics of it all — just tell me what my son needs already! It turned out that a lot of what Finn needed was no different from what any other infant needs with a few modifications. We learned to talk to him A LOT — for example, I never just swoop in and pick him up without saying first, “Mama’s going to pick you up.” This is to prevent startling him. Or, anytime I carry him throughout the house I describe where we’re going, how we’re getting there, the directions we’re taking. I’m sure a lot of parents do this too, but for Finn it has to be pretty constant and consistent as he depends on these descriptions to learn about his environment.

But when I came upon the chapter in this book entitled “Early Intervention” a lightbulb went off.  I studied Early Childhood Education alongside Psychology as an undergrad in college. I even went on to get a Master’s degree in Education Policy. None of this do I use directly in my job in Event Marketing, which has sometimes led me to look back and wonder if I had let my education go to waste. But, now I think perhaps the education path I chose wasn’t meant for my professional career at all — that perhaps it was meant to give me a solid foundation for my career in parenting Finn. All of that is to say, the concept of Early Intervention was not new to me. I knew the basics — that any child born with disabilities or delays is entitled to free government services to help them achieve and succeed to the best of their abilities. I knew this was protected by the Individuals with Disabilities Act (IDEA). Yet, not until I read that chapter had it really dawned on me that we needed to apply for services for Finn. I’m not sure why it took so long — I had accepted Finn’s blindness for sure, but perhaps I was still in a bit of denial that I was in fact, a special needs mom. And though I had basic knowledge of what Early Intervention entailed, I really had no knowledge of what services a blind child would qualify for or need. From what I remember of my course studies, blindness was not one of the typically identified “disabilities” on the list.

Luckily this book laid it all out there for me — the two most important services Finn would need would be a TVI (Teacher for the Visually Impaired) and an O&M (Orientation and Mobility Specialist). A TVI provides tools and education specifically for those with visual impairment or blindness. An O&M teaches those with visual impairment to move safely and independently throughout their environment — for example, how to properly use a cane. I’d never heard either of these terms before, or if I had it had been years ago in school and it didn’t sink in. If only I’d known then that I’d have a blind son 15 years later, I’d have listened a bit more closely! After reading up on these services, I was a bit dismayed that no one — none of the doctors we’d seen — had yet suggested to us that we should apply for these services. Luckily, I read this book and luckily I had the base background education that I did or we may have gone many months or even years longer without getting Finn the services he needed. From there I asked our pediatrician, our retinal surgeon and Miss H their thoughts about Finn’s needs. They all agreed that we needed to apply for services through the state as soon as possible, though none seemed particularly familiar with what the services would be or the process. We were on our own.

I found the Tennessee Early Intervention Services (TEIS) phone number online and called them three times before receiving a call back. When I finally got someone on the phone, I was asked a slew of questions regarding Finn’s medical history. From there, we had to have all of his records transferred to the TEIS offices to prove need. Once they established that there was in fact a need for services, we’d be assigned a Coordinator. This process took about a month. I told the lady on the phone that my son was completely blind. I’d sent her all of his medical records proving this fact. Yet, a month passed before they confirmed and approved this all to be true.

We were assigned a coordinator, we’ll call her Miss C. Our first meeting with Miss C was pretty simple — she came to the house, met Finn, had us fill out some paperwork and let us know that we’d been preliminarily approved for services pending one other medical record they needed. I was annoyed, but things seemed to be moving along. She let us know that we’d then be assigned a Developmental Therapist and we would soon know how many days a month they would allow us to see him/her. I started to ask a few questions that went something like this:  “The Developmental Therapist — what is his/her role?” “What is his/her background in vision impairment?” “Would we also be given a TVI and an O&M?”

This is where things went south for Miss C and myself, we’ll call me Mama Bear. She told me that the Developmental Therapist (DT) is meant to ensure that Finn achieves his developmental milestones, but that he/she would have no background in visual impairment. She said she knew of one DT with a background in O&M, but that she was assigned to another county. She went on to say that TEIS had no TVI or O&Ms on staff in my county so those services would not be available for Finn. I’m sorry, WHAT?!?!?! My follow up questions went a bit like this: “You’re telling me that my blind child is approved for services, but none of those services are specific to visual impairment?” “You’re telling me that there are no TVIs or O&Ms in the state of Tennessee available to help him?” “You’re telling me he’s only been approved to see a Developmental Therapist even though he thus far has shown no signs of developmental delays?” Her first answer was “yes”. Her second answer was “well, there are TVIs and O&Ms, but not on our staff so you’re welcome to obtain those services privately and pay for them on your own.” Her last answer, “yes”. As you can imagine, I had some follow up questions: “What about parents of children like Finn who can’t afford to pay for services on their own?” “What about those who don’t have the means to take their child to said services?” Are they just left to fall through the cracks?” Her answers were again, yes, and my response was a simple, unacceptable. Things got pretty tense with the Miss C. I don’t think she was prepared for me to break out the book I’d just read. Or for me to reference the IDEA act. I was armed with knowledge and I wasn’t taking no for an answer.

She did agree to do what she could to get me the one DT in the area with an O&M background even though she was not currently an actively practicing O&M. I took a deep breath and held it together until she left. I was angry. I was in full-fledged mom advocacy mode. As confident as I’d been while she was in my living room, as soon as she left I was deflated and afraid. Afraid that there was nothing I could do to get my son the services he needed.

Though I knew enough about the IDEA act as a whole, I didn’t know much about Tennessee’s interpretation of that law. I did as much research as I could online, but that only took me so far. I started researching TVI and O&M’s in the area to see what kind of information I could gather. I then came across a TVI training program at Vanderbilt University. I emailed the head of the department and explained my situation, and asked if there were any TVI’s on staff who might know more about the Early Intervention system. Candidly, my husband and I have the means and were willing to pay for services privately if necessary, but I wasn’t about to come out and say this in my email. I knew for all the other mothers in my situation out there who don’t have the means, this just wasn’t right. The person I emailed at Vanderbilt immediately responded and gave me another contact there who she said had extensive experience in the field. She followed up a day later with two other contacts. Just when you get discouraged by one person’s seeming disregard to help, you turn around to find another who goes above and beyond!

I reached out to all three contacts and the first one to respond, we’ll call her Miss D, was a certified vision teacher, O&M instructor as well as an early interventionist. Bingo! She could not have been more helpful or sympathetic. She explained to me that having specific vision services for Finn was an absolute necessity and needed to start sooner rather than later. Furthermore, and as I’d suspected, that it was the state’s responsibility to provide them. She offered to come to our house, do an evaluation of Finn at no charge, and meet with him weekly until we could get services from the state. She didn’t want him to fall through the cracks for even a minute. People are so wonderful sometimes!! Miss D came to do her evaluation the next week and put together a full report that spelled out Finn’s developmental status and needs. A lot of children with visual impairments have delays related to development. Thus far, Finn had exhibited no other issues — he’d hit every milestone “on time”. That’s not to say he didn’t need a DT — he was only 8 months at this point and who knew if his development would continue on this path. But, the DT was more of a preventative need for Finn than an immediate one. The need for a vision teacher, someone who could ensure he had the proper tools to learn without visual input, was a true, immediate need for our son. Miss D gave us the name of the head of TEIS for a neighboring county — she told us that she knew of a similar situation to have had happened years prior and that this man had secured a private vision teacher to be paid for by the state of TN for a little boy, also blind. She told me to send her report to him and give the background. She also agreed to call him herself and let him know I’d be reaching out. I heard back from him immediately — he said he’d be sending all of his paperwork from the family he’d worked with years back to my Coordinator and her boss, his counterpart for my county, as evidence of a precedent and what needed to be done. Within days of his email, we were approved a vision teacher to come meet with Finn once a week! We were also approved the DT with O&M background to come 2-4 times a month. Hallelujah! The persistence and help of others had prevailed!

We started the process of applying for services in May. Finn was approved for a vision teacher and began seeing her in late July. It took three months of phone calls, waiting, emails, and most of all, people who cared,  to help us to get there.

What I learned from all of this was that my most important job as Finn’s mother is going to be working as his advocate. Being his Mama Bear. At the same time, I’ll be working as an advocate for all other mothers in my shoes just as that one mother in Tennessee  had done years before me when I’m sure she had to go through an even harder battle to get her son a vision teacher with no precedent yet set. I think of other mothers out there who don’t have a background knowledge about Early Intervention or have never heard of the IDEA Act and are starting on this journey; who may not have access to or know where to find the books I’ve read; who may take no for an answer simply because they don’t have the knowledge, time or energy to put up a fight that they may view as a losing battle.

As a side note, I don’t want to bash TEIS or even my original Coordinator (we have since moved counties and have been assigned a new Coordinator which I think we were both happy about since we never fully recovered from that initial first impression). For all the stress it caused me for those few months, they have provided really wonderful specialists who work with my son every week in the comfort of our own home. He is now in his 7th month of service and it has truly been invaluable. Though they are here for Finn, they are really here to teach Patrick and I how to equip him with the tools he needs to succeed. I’ve learned so much! So, Early Intervention is an amazing service any special needs parent should take advantage of — just don’t be afraid to fight for what your child needs, what you think and know they need, despite what you may be told. The more precedents we can set, the better for those who come after us. And most of all, know that there are people out there who can help and who are eager to help. Including me!

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!

I have a love hate relationship with milestones. I understand why they exist — it’s important to track a child’s development and ensure that any delays are recognized and intervened upon right away. However, I also think that there can be way too much emphasis put on them and their timing — to a point that children become rushed, at times, to hit the next one and more irritatingly, to hit them before their peers. I’ve been guilty of this myself, so no judgment here I assure you. When Finn rolled over from front to back earlier than he was “supposed” to, I was thrilled. Not only had he hit a milestone early, he’d done it in spite of his “disability”. My child must be super advanced, I thought! But, then I expected him to hit every milestone early and I was disappointed when he didn’t. What terrible pressure to put on a child. And of course, my child is blind, and with that comes a natural tendency to achieve milestones later than his peers since he can’t see an example of how they’re done — he’s never seen someone smile, roll over, crawl, grasp or walk in order to use that as an example and try it himself. Yes, we’ve adapted and found other ways to teach him, but if he had vision it would all certainly click for him faster. This natural delay can then lead to the ugly label of “lagging behind” which seems so unfair since there’s no adjustment for blindness on the milestone chart they give you at the pediatrician’s office. Again, what terrible pressure to put on a child when the fact is, every child is different and all children do things on their own time. Of course my son’s lack of vision is going to play a role in his development, but I’ve come to realize that even if he were sighted, he would still do things on his own developmental timeline just as his sighted peers all do.

I mentioned in one or more previous posts that our retinal surgeon told us to watch Finn’s development closely over his first year of life — that a lot can be learned by how he grows, how he learns and whether or not he achieves these milestones. He said that the first year would really help us to rule out Norrie’s Disease, if in fact, Finn showed no signs of physical, emotional or intellectual delays. So, that’s what we’ve done for the past year – watched like a hawk for Finn to hit milestones, sometimes with a “did he just??” anticipation that caused way too much anxiety. Yet, of course when he “did just” do something, we were filled with joy and relief. Finn’s first smile was a sign that he was emotionally connecting. Finn’s first time rolling over was a sign that he was developing motor skills. Finn’s first babble was a sign that he was developing language skills. And he hit all of these “on time.” But then, when Finn didn’t start crawling by 10 months I secretly wondered if this was a sign that his development was stalling. So, there in lies the love hate.

Well, today is Finn’s first birthday. He is crawling as of last month and he is standing without support. He is not walking. I have friends with little boys born the same week as Finn and they are all walking. Do I feel disappointed or worried that he is “lagging behind”? No, I don’t. On his own time, Finn has hit all of the first year milestones, some early, some late and I am confident that walking will be next. But, I won’t rush it. I’ll let Finn be Finn and celebrate the fact that today is its own milestone achieved. Today marks one year since Finn came into and changed our lives. It marks one year of growth for him, but even more so for us. Do we still have more learning and growing to do, and milestones to hit? Of course. But, we’re on our way and with every step (pun intended), I feel more and more confident that Finn is going to be just fine, and so are we.

Happy birthday to my sweet, inspiring, curious, funny and truly amazing little boy! You are teaching me more than I could ever teach you. I cannot wait to see what you achieve next, whenever you are ready to achieve it!

For the remainder of 2017, I successfully blocked everything out as best I could and enjoyed the holidays with Finn and our families as intended. But, January came and with it my maternity leave was over and the second surgery was looming.  Returning to work full-time after having a child is a struggle — I think all working moms will attest to this. For me, I also felt I had been robbed. I had envisioned this beautiful three months off work to bond with my son and I had, but it had also been wrought with the cloud of uncertainty and fear. I still hadn’t processed everything completely and for the first few months back, neither my head nor heart were really in it. The best word to describe this time was just BLAH. I was going through the motions. Luckily I get to work from home so we decided to get a nanny instead of going the daycare route to ease the transition for us all. We weren’t ready to put Finn in the hands of someone else outside of our home not knowing yet what his needs may become.

Finn’s second surgery was on the books for January 30th. The holidays were behind us and we had yet to hear anything back from the genetic testing. I started calling the dark hole that is Vanderbilt Children’s Hospital’s phone system. Don’t get me wrong, I have many wonderful things to say about VCH. In fact, my husband and I worked there as “comfort cart” volunteers the year prior to Finn’s birth. I never in a million years thought then as we roamed the different floors offering comfort items to families there with their sick children, myself pregnant at the time, that we would be among the parents on the receiving end of treatment there for our child just a year later, but such is the irony of life.  (I knew then, and I know now, that there were and are children there dealing with much more serious and dire conditions than what Finn has and not a day goes by that this is lost on me.) VCH is a wonderful hospital with exceptional doctors, but, it is also a busy place where every person calling is likely a parent or caregiver desperate for answers and help for a child just like we were so we sometimes felt lost in the shuffle. This was one of those times.

It took no less than a dozen phone calls and voice mails for me to get a call back from our genetic counselor and that was only after I left a tearful message on her personal cell explaining that Finn was scheduled for surgery and I desperately wanted a diagnosis to ensure we were doing the right thing by proceeding. Just a week before the surgery, I finally got a call back from our sweet and unsuspecting genetic counselor. I was in no mood and patience had worn out so I completely lost my cool and let her have it for leaving me hanging for so long. In these instances, your child is the only child in the world. After screaming at her about my child’s health, her lack of responsiveness and sense of urgency, I stopped and realized the results we’d been waiting for might finally be here. I braced myself for Norrie’s Disease — at this point I had been convinced this was Finn’s fate. Instead, she said that everything they’d tested for came back negative. NEGATIVE. I couldn’t believe it. I wasn’t sure whether to celebrate or cry. I’d been desperate for answers – for a true diagnosis and something we could treat, for lack of a better word. With a diagnosis, even if there was no cure now, maybe one day there would be. Without one, what did we have? I felt so relieved on the one hand that Norrie’s and other frightening disorders seemed now ruled out, but terrified on the other hand that something worse would be looming, something we hadn’t prepared ourselves for. With no diagnosis, we didn’t fit into any group alongside other families who could turn to one another. We didn’t have a blueprint for what to do next. We were on our own.

With that came a very unsettling feeling so we pondered doing a second panel of genetic tests. The first test looked at about 20-30 potential disorders that cause blindness at birth and were in line with Finn’s symptoms. The second would look for another 20 or so that are linked to blindness, but weren’t necessarily close matches for Finn’s symptoms. I’ve learned a few things with genetic testing: 1. Without a positive result, you can easily fall down the rabbit hole of looking for answers forever. For example, if Finn were to show a new symptom a few years from now — say loss of hearing, we could then go back and test for a slew of other disorders that cause hearing loss. 2. There are a million different genetic codes and disorders so there’s no way to just test for everything (even if you are an irate and desperate mom pleading with the geneticist to do so). You have to know what you’re looking for. 3. They are extremely costly even with good insurance. Despite all of this, we had a blind newborn and no idea why so we continued down the rabbit hole a bit longer and ordered the second test. I wasn’t ready to give up.

Around that time, my mother-in-law attended a luncheon where she lives in Pasadena, CA. As fate would have it, at this luncheon she met a retired pediatric retinal surgeon with whom she struck up a conversation about Finn and our struggles to find a diagnosis. Shortly thereafter I received a call from this very kind doctor who wanted to help. She explained that without seeing Finn there was only so much she could offer in terms of diagnosis, but she also mentioned both FEVR and Norrie’s Disease. Her suggestion for us was to get a second opinion before we proceeded with surgery. She told me of another retinal surgeon and researcher in Detroit who was of the best in the country. We’d actually heard of him before as our surgeon here in Nashville studied under him. She offered to make a few phone calls to see if she could get us in for a second opinion before Finn’s surgery which was scheduled the following week. I called his office the next morning and was given two options: 1. Fly to Detroit the following morning for an office visit OR 2. Cancel the surgery we had scheduled with our surgeon in Nashville, fly to Detroit, spend two nights there and have Finn examined under anesthesia with the possibility of proceeding with surgery on the spot. I had no idea what to do and time was not on our side. I told the receptionist I’d call right back and immediately went to Patrick with the options. We were torn — everything was so rushed and we still had no genetic test results to give us a definitive diagnosis so it all felt like a big crap shoot. All I knew is that I had to try everything for Finn, but the thought of switching surgeons last second and staying days in Detroit felt too unfamiliar and overwhelming. So, we went with option one. We booked flights that evening, took a 6am flight the next morning and despite flight delays and our being serious rookies when it came to traveling with a child, or to installing a car seat in a rental car for that matter, we somehow made it to our 11am appointment. I remember boarding the flight with excitement — it was Finn’s first flight and we felt we might be on our way to see Finn’s savior — the best doctor in the country who could potentially save his vision! Woo hoo, let’s go!

Well, I’m sure you can see where this is going. I’d say this doctor’s appointment was the worst we’ve ever had to date. Dr. Death, as we now call him, was not Finn’s savior. He spent maybe 15 minutes with us — Finn’s eyes were dilated and then he used these horrific metal tools to pry his eye lids open, took a few minutes to examine them and then he was done. He told us that his opinion is that Finn likely has Norrie’s Disease despite our genetic tests coming back negative. He said that genetic diseases only show up in 48% of tests (so what the hell is the point?!?!) and that his clinical diagnosis was Norrie’s. I told him that Finn was rolling over, smiling and hitting his milestones, but he disregarded that as any sign that it could be something else. He then went on to tell us that children in European countries with Norrie’s are often put in “wards” and to brace ourselves for the future. I don’t think I’ve ever been dealt a tougher blow nor heard more crushing words. This supposedly renowned, amazing doctor was losing credibility with us by the second. I don’t care what the reality or diagnosis may be, no mother should ever be told the words, “kids like yours end up in wards.” I understand that doctors have to provide information, facts and/or their expert opinions, but bedside manner and the way that information is delivered is crucial. I didn’t even think the word “ward” was a thing anymore! I could have sworn we’d been transported back to the 1950’s. Dr. Death said he’d keep Finn at the top of his list if any cutting edge research came to the forefront and affirmed that we should indeed proceed with the second surgery because “it can’t hurt.” I took Finn into the restroom, holding back tears as I fed him and changed him and then we walked out. It was freezing, gloomy and snowing outside — the weather matched my mood perfectly. We got into the rental car and returned to the airport for our 4pm flight home. Patrick and I barely spoke a word the entire drive. On the flight we finally erupted, both so angry, so sad, so defeated yet again. I am sure this doctor has done wonders for many families, but he was not the doctor for us. I thanked my lucky stars we had not committed to surgery with him. We returned home and proceeded with the surgery on Finn’s right eye as planned the next week.

The routine was the same — depriving Finn of food for 8 hours, checking into the hospital in the early hours, meeting with the anesthesiologist, and finally waiting while the surgery was performed. It was deja vu. The surgery was again a technical success, but the odds of any vision for Finn were unchanged and still bleak. Dr. S. came in afterwards and told us that looking at the eyes this time, he felt that things were more consistent with Persistent Fetal Vasculature, but that again not everything fits with that diagnosis. It was becoming more and more obvious that our son is a bit of an anomaly. He reiterated that watching Finn over the next year to see if he hits milestones and develops normally would be the most telling.  We told him about the genetic testing and our trip to Detroit. He was glad we’d taken the trip to get a second opinion and didn’t seem at all offended that we had. (I was relieved because I’d had a moment of panic when booking the trip that had felt like we were cheating on him.)  He felt that Dr. Death’s expertise and experience were valuable, but disagreed with his 48% statistic about the genetic testing. He said the results should be more in the 90-95% accurate range which was also what our genetic counselor had said. Sometimes in life you are given two completely different answers to the same question and you have to make a choice as to which to believe. For my sanity, and for my son, I decided then and there that the 48% statistic was bullshit and that our trip to Detroit had never happened.

And then Dr. S. said what has become one of the most valuable pieces of advice we’ve received, and exactly why we’re glad he’s our surgeon. He said that Dr. Death doesn’t know Finn. That even he, only somewhat knows Finn. He said, that Finn is not just a statistic – he is our son, and we are the ones who truly know him and live with him every day, and our opinion matters as much as the medical opinions. He tasked us with just letting Finn be Finn. Watch him grow, let him show us what he will become. In his own time, he would let us know exactly what the future holds and what he needs. Basically, I needed to stop trying so hard to fit Finn into a box and accept that we may never find the answers we were looking for — most importantly, that perhaps we were better off without them.

If you read the About Us page of this blog, you may have thought to yourself, “Wow, she’s got the right attitude and perspective about all of this!”

Well…the purpose of this blog is to be authentic and real and I can’t truly help someone else in a similar situation if I fast forward to the good parts and gloss over or ignore the bad ones. So I promise I won’t do that now nor in the future. The truth is there were a lot of REALLY rough days in the weeks and months after Finn’s non-diagnosis (more about the “non” to come in future posts). And I’m not naive enough to believe that there aren’t many more to come ahead – he is only 10 months old at this point, after all. We haven’t even started navigating the world of mobility, explaining to him his condition, or attempting to socialize in a world ripe with bullies, or goodness knows what else. I can only guess at this point as to the challenges for him and us ahead, but I do feel confident today that we are equipped to handle it. We have to be, right?

So, I’ll start by backing up and start from the beginning…

Finn was born on September 21st 2017, the day after my birthday. It was and always will be the greatest birthday gift I’ll ever receive. My pregnancy was boring — no complications and seamless as far as 10 months of growing a human inside of you is concerned (yes, it’s 10 months, not this ridiculous fallacy of 9!). My delivery and the days that followed made up for all of that. I was in labor for 12 hours (I’ll spare you those details) when my blood pressure spiked. I thought I was facing a C-section at that point, but in the nick of time Finn blessed us with his presence. However, the umbilical cord was wrapped around his neck twice. There was no cry. Well, other than mine. He was whisked away by a flurry of nurses and taken to the NICU for several hours. Patrick was white and I remember our doctor making sure he was not about to faint. Those several hours were excruciating and much of a blur. I only know that they were the scariest of my life. We got little information during this time and we were panicked. We finally got word about three hours later that he was breathing on his own and a rush of relief washed over us both – I think I began breathing again in that moment myself. Finally he was brought to us in our room and we were ready to set off on the journey of parenthood thinking everything was just fine. That is, until two days later when the pediatrician on call came by and said, “has anyone talked to you about Finn’s eyes?”

We had no idea what she was talking about and honestly didn’t think much of it. The way it was presented to us at the last minute (we were due to go home at any time we thought) was so flippant and nonchalant. She told us there was some blood behind the eyes, most likely from the complications from delivery and it would probably clear up on its own. What probably should have raised a red flag for us, though, was that they were not allowing us to leave the hospital because of this. They wanted to have another pediatrician take a look the next day and we would need to stay an extra night. At this point I was so ready to take my baby home, to sleep in my own bed and to just recover. So we pushed back and asked to be released anyway. They allowed us to leave late that night, but only under the condition that we’d see a specialist at Vanderbilt in a few days. Again, this also should have been a red flag but it really wasn’t for us. Our pediatrician got us in to see a specialist the following Monday. Finn was five days old.

I remember this appointment but it was also such a blur. My postpartum mind and body were a mess and I just wanted them to fix the issue with his eyes and go home. This doctor was a pediatric ophthalmologist and told us that the blood would likely dissipate on its own in a few weeks or months and to bring Finn in every week for the next few weeks for a check up. This seemed simple enough – easy peasy! But, he also wanted us to see another specialist in the meantime. Red flag number 3? Yep, ignored that one too. We came back two days later to see the second specialist, another ophthalmologist who specialized in retinal detachment. Finn was now one week old.

His eyes were dilated and pried open as I sat in the corner in shock and in a daze and eventually in tears. Thank goodness for my husband who showed nothing but strength on the outside when I had none and for my mother who held me while I sobbed and told me it would all be ok. This doctor told us that Finn had a detached retina in one eye but that the other appeared to be attached. He would likely need surgery on the one eye and we would need to see a third specialist, a retinal surgeon who specialized in retinal genetic disorders. He was apparently “THE guy” for newborns with detached retinas and renowned not just in Nashville, but with patients around the country. We needed to see him as soon as possible. This is where I think it finally began to sink in that this was not a minor issue. It took four red flags, but I was catching on. We saw the surgeon, we’ll call him Dr. S since he is sure to make many appearances in this blog, a man who would become a major part of our lives and my cell phone text history, two days later when Finn was just 9 days old.

Again, dilation, prying, screaming (him), sobbing (me). Did I mention how thankful I am for my husband and his strength? He held Finn down while I cowered in the corner and closed my eyes because I just did not want to see (ironic, huh?). Dr. S, in his calm, soothing voice delivered us the blow. Finn had bilateral retinal detachment (both eyes, not one as we previously thought) and only a 50/50 chance with surgery of ever seeing even just shadows or light. I remember sitting there motionless and him saying, “Mom, are you ok? Do you hear me?” For a moment I didn’t know he was talking to me. I’d only been a mom for less than two weeks at this point and most of it had been spent in the hospital or a doctor’s office as opposed to snuggled up bonding with my new son. I hardly identified with the word “mom.”

He proceeded to write two potential genetic disorders on a piece of paper that he was sure Finn had: Familial Exudative Vitreo Retinopathy (FEVR) or Persistent Fetal Vasculature Syndrome. To make matters worse, he said that often with these disorders there are other central nervous system issues that arise – hearing loss, lack of motor skills, delayed brain development. We would have to watch Finn closely for his first year for any signs of delays or other problems and we may not know until symptoms presented themselves. In the meantime, he recommended an MRI to rule out cancer, tumors or issues with brain development and blood work to rule out any blood disorders. I took the piece of paper in one hand and my tiny little baby in the other and left, defeated and broken.

I remember the drive home from that appointment so vividly —  the three of us (me, my mom and Patrick) just sitting in complete silence, all hope gone. I didn’t even bother to Google or research the disorders in those first days. My son couldn’t see and that’s all that went through my head. My son is blind. My son may be disabled. My son will never see my face. He’ll never…you name it. The “he’ll nevers” started to take over and I was, in all honesty, devastated. The bad news and fears just kept coming. Every appointment was worse than the last and I was a wreck – I felt hopeless, guilty and empty at a time I had expected to feel hopeful, proud and complete.

We went the next day for the blood work. For any parents out there who’ve ever had to have their newborn’s blood drawn, you know how excruciating this is – I wish it upon no one. Their tiny little arm is squeezed so tight and to find a vein large enough is no easy task. We attempted this first at our pediatrician’s office and the lab tech was unable to get a vein. Instead we had to go the next day to a specialist at the hospital to do it all over again — are you detecting a trend here? I could never hear the word specialist again and it would be too soon.

I had to leave the room and in the waiting room I sobbed again. I’ll never forget the kindness of strangers. An older woman in the waiting room for her own blood draw, for who knows what reason, brought me a box of tissues, and one of the nurses came out and just gave me a huge, long hug. I won’t forget them.

The next week we took Finn for the MRI at Children’s Hospital at Vanderbilt. Finn was two weeks old now. He, by some small miracle, did not have to be put under anesthesia for this though we were told he would. I was not ready for that — not yet. I waited outside while Patrick stayed with Finn – they would only allow for one of us which was just fine with me. I felt like a coward instead of the strong mother I wanted to be, but I did not have it in me to see his tiny body inside of that large, cold, noisy machine. An hour later they came out and Patrick was completely white, but he said everything went fine. Looking back I am just so astonished by his bravery and strength for us both. I was a complete and utter wreck and I am sure he was too, but he never showed it. He held our family together. I remember at one point him rubbing my back as I cried outside in our backyard and he said, “honey, our job doesn’t change. No matter what, we just have to be the best parents we can for Finn. We just have to love, support and take care of him. That was the plan before all this and that’s still the plan. He’s going to be ok because he’s got us.” This is why I chose Patrick as my life and parenting partner – he was exactly right and that was exactly what I needed to hear to keep going.

We went back to see the Dr. S a few days later to discuss the results in person. Blood work: normal. MRI: normal. This was the first good news we’d received since Finn came into the world.* He told us that Finn needed two surgeries, what’s called a vitrectomy, in both eyes if he had any hope of light and dark perception. The process is, in my very technical terms, where a gel is inserted into the eye to try to reattach the retina to the back of the eye kind of like gluing wallpaper to a wall (I hope no doctors are reading this). Finn, at only 7lbs, needed to gain some weight before he could do the first surgery because he had to be put under anesthesia. We scheduled the first surgery for when Finn would turn 8 weeks old.

For the next four weeks I could take my baby home and just be a mom – just love him, cuddle him and pretend for a minute that everything was ok. No hospitals. No doctor’s offices. No tests. No poking and prodding. Four weeks of blissful denial. And that’s exactly what I did.

*I’d like to take a minute here at the end of this post to recognize all of the parents out there who may have gone though something like this and not gotten those normal test results. The truth is that we still don’t know what the future holds for Finn in terms of his development and whether or not other issues will arise, but for us this was a pivotal point as it ruled out all of those other serious issues our doctor had mentioned — blood disorders, tumors, cancer, and brain abnormalities. It restored some hope and began to turn the tide for me from thinking “oh my god, my son is blind” to “thank god my son is likely ONLY blind”. Perspective is everything. But it is not lost on me that we were lucky in many regards and for these other parents who aren’t dealing with “only blindness” this all may seem easy. I don’t ever want to discount the struggles they go through and how much harder it would be to be faced with multiple disabilities or health issues instead of just the one we currently know Finn has. But, again, this blog is about authenticity and vulnerability, and for me, even though this was good news, at that time I was still grieving and terrified for Finn’s future.