Processing & Challenges

glassesBen was less than a year old when they told us he couldn’t see well and needed glasses. He had a laser surgery on his eyes in the NICU when he was just a couple months old because of the eye condition (ROP) which can cause blindness if untreated. A pediatric ophthalmologist and retinal specialist were both seeing him and did follow up after we were discharged. When they told us he needed glasses I argued with them for quite awhile. I insisted Ben could see just fine – if I smiled at him across the room without saying a word he would smile back at me. He could see! They were very patient as they tried to explain to me the condition of his eyes and how he would probably experience more vision loss as he grew. I told them they were wrong. I asked how they could possibly determine whether a non-verbal (and rather non-compliant!) baby needed glasses. They spent hours explaining to me and answering my dozens of questions over the years that followed. He got glasses when he was a year old, just as he started to take steps. He broke 47 pairs in the first year. His record was breaking three sets in less than 24 hours – one set literally as we left the parking lot from getting the previous pair fixed. The glasses shop knew us well!

Every six months (or more often) we would take Ben in for another exam and they added a vision specialist to his therapy team and talked with us about braille and low vision and independence and treating him like the other kids, just modifying some expectations related to the vision limitations. They talked with us about protective eye gear and retinal detachment and through all of it even as I read and listened and researched and took notes I kept saying in my head (and sometimes to them) – NO. He’s not blind. He’s not going blind. We don’t need to learn braille because he can see. At three years of age he started sounding out words! By four he was reading! I felt vindicated – see, he can read! At one point I remember asking if he really needed the glasses at all since he was reading just fine, thank you very much.

My denial is powerful.

So, we went about our merry little way and ordered glasses in bulk and got him lots of sun hats (his eyes are incredibly sensitive to light) and tried to treat him like the vision wasn’t a big problem. Then I noticed some changes – Ben was bumping into things. Squinting more. Looking more closely at things. We knew one eye was stronger than the other so we were patching for a couple years. The eye doctor wanted us in every three months now. The night before each visit I would feel sick – I was having flashbacks of our hospital stay and the surgery and hearing them warn us before he was even born that he would be facing severe disabilities – including blindness, a common challenge for preemies. Each visit we would get more bad news – more vision loss. He had passed his color blindness test – then he failed, and told us he could see colors changing. He complained of his eyes hurting, he would wake in the night screaming and say the inside of his eyeballs hurt. (The eye doctor didn’t like hearing that, you can bet – anything related to his eyes they get us in fast. Including that time he managed to stab himself in the eye with a pencil as a toddler and bruise his eyeball! Terrified us all.)

It was really this fall when we sat down with a new caseworker from the state and she encouraged us to get some more extensive testing done. Our eye doctor was great but he wasn’t a low vision specialist, and our case worker thought it would be beneficial to get some specifics about the extent of the vision loss. I handled the results with my usual degree of denial. 🙂 Okay, not just denial – grief and shock and sorrow and then some more denial. Ben’s old enough to realize what’s happening to him and having him hug me and whisper softly, “I don’t want to go blind,” or “I wish I could see better again,” breaks my heart. His older brother is such a big hearted kid and he’s shed a lot of tears as well as he talks with us about his worries for his little brother. I wish I could promise them his vision would stay just he way it is now, but we know the reality is that it will continue to deteriorate.

And even as I type those words my instant reaction is to lash out – NO. I refuse to believe it’s going to get worse. I’ve had to make peace with the gradual loss, each new report, each stronger prescription, more loss of visual field. And I’m tired of the bad reports! Seeing them mark him as legally blind just felt like the final blow… though I do realize legally blind and totally blind are not at all the same and I am very, VERY grateful he’s got so much functional vision left. Please don’t think we take that for granted. I think I’m still just in denial, and thinking – maybe if we try contacts! Maybe if we find a new tool, maybe there’s another surgical option. I’m still hoping if we find some new resource that we can help restore some of his vision.

Even now in my frustration I still think – it cannot be this bad. He cannot be legally blind. Maybe he wasn’t cooperative enough and it skewed the test results. Maybe it was too bright so his response was off. Because look at him! He’s walking around (okay, sometimes he misses curbs and hits walls and gets hurt) but he’s reading (okay, the book is inches from his good eye as he told us the other eye doesn’t work anymore) but still! He’s doing SO WELL. The child in front of me doesn’t match the words I’m reading on the eye reports so I don’t want to accept it.

Do you know how many times we were gently counseled that he was probably not going to survive the night? Do you know how many time I spent praying all night long that he would be alive in the morning? Too many! And yet – he lived!! He’s here and he’s incredible! After awhile I didn’t believe them anymore when they told us things weren’t looking good because Ben ALWAYS surprises us – he is so strong. So maybe that’s influencing our emotions now – they said he wouldn’t survive. They said he would have so many challenges and he somehow miraculous beat the odds and walked away from the NICU so healthy. If he managed to beat the odds every other time then why not this time? I’m selfish. I want another miracle.

Yet even as I type that I’m reminded of past conversations, prayers and counsel and promptings. We knew this would be his challenge. We’ve known this – from in the NICU we knew. I guess I just haven’t come to a place of acceptance yet. We’re still in research mode, we’re gathering his super hero team of support and enrolling in programs to help him and throwing everything we’ve got at this. But still… I’m not ready to accept that his vision loss is this severe. Even as we plan these amazing trips and experiences for him, even as we receive this outpouring of support and love and resources to help him… I’ve spent the day crying. Partially because we have received SO MUCH help and kindness – it’s overwhelming. And partially because the idea of Ben losing his vision breaks my heart into a million pieces. It’s not the end of the world, it’s a small challenge compared to what he’s faced in the past, we know it’s a miracle he is even alive! We know that. But still… I’m his mom – when I see his struggle and grief I wish I could help carry it for him.

2 thoughts on “Processing & Challenges”

  1. My heart aches for Bennett and for you when I read this post. Don’t feel guilty for wanting another miracle, for not being satisfied with the fact that he’s alive despite all odds. When people make the “miracle” comment about Truman, I tell, yes, he is a miracle, but we didn’t want a miracle, we just wanted a baby. Granted, we are not facing something like blindness, but when I see Truman struggle with eating and the learning disabilities, I just want to take it away and take all of it for him. I understand a little about your heart breaking for your child.

  2. Kara, you put that so perfectly – we’re incredibly grateful for the miracle but we just hoped for a healthy baby. (Only now do we realize what a miracle it is each time a baby is born full term and healthy!!) I know as the mom to another extraordinary 23 week boy that you, like few other people on this planet, understand. Even though our boys face different challenges, you know this struggle. Thank you!!!

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