Life has a way of changing your expectations and plans, all without consulting you first. It did for my wife and I when our son, Maxwell was born.
First off, we didn’t even plan to have anymore children because of my wife’s horrendous pregnancies. But try as we might, we could never feel comfortable with moving on to the next stage in life.
So we took the pregnancy plunge, and endured nine months of, well…hell – expecting all would be well in the end, as it was with our three daughters.
Enter the story twist.
I knew something was off when Max was born, I sensed it as I placed him in my wife’s arms. It was just a feeling, but enough of one to tell me that something was not right. I’ve welcomed three beautiful girls into this world, and I understood the swollen nature of a baby fresh out of the womb, but Max just couldn’t open his eyes, no more than a sliver of the way.
Max would exert all the might of his muscles in his forehead to barely lift his eyelids. It made him look like a little old man. His eyes looked puffy and swollen, and I noticed that they looked a bit small. I told myself that he’d be fine in a couple days, “his eyes are just swollen from the delivery” I’d tell myself, and the doctors and nurses confirmed my self-soothing rational.
It’s hard to describe the feelings that surface inside you as a parent as you become aware of something that’s not quite right with your newborn baby – it’s like a nagging sliver in your soul, one you can’t pull out, and every time you are reminded of it, it pricks deep. That incessant feeling of the unknown made it hard to enjoy those first few days with Max in the hospital. My wife and I so badly wanted to connect with him, but alas, we could barely peer into what many consider to be the windows of the soul.
We have always been used to our wide-eyed baby girls, and Max was far from being wide-eyed. Flashes of when my daughter Saley was born surfaced. I soon pulled up photos of her birth, and began comparing her eyes to Maxwell’s. Saley was wide awake and we had an immediate, intimate connection with her through her eyes, they were as bright as day. I was now self-affirmed that Max’s eyes were not normal.
I began to feel bad, because the worry began to snuff out much of the joy I had experienced with my daughters at their birth. Joy and celebration were replaced with anxiousness and worry – worried about his eyesight, worried there was something major going on inside him. Finally, I had to just calm my anxieties with faith, and simply love him.
I spent the second day doing research on the internet about babies not being able to open their eyes. The first thing that came up was a bunch of parents saying to just be patient, saying the swelling will go down and all will be fine. But by this time I knew Max’s eyes were different.
The next topic we discovered was droopy eyelids, or ptsosis, which is the lack of or faulty levator muscle in the eyelid which causes the eyelids to droop. I read all I could find, looking at photos, reading stories, and accounts from other parents. I learned it could be fixed, but still the photos I was looking at didn’t quite represent Maxwell’s eyes. I knew for sure he had ptsosis, but it seemed more complex than that. His eye openings were much smaller, and his left eye opening a hair smaller than his right.
I just kept telling myself that one morning we’ll just wake up and his eyes will snap open – delayed development all caught up overnight! But every morning we’d wake up and there was Max sleeping, wait no he was awake, I forgot, he just looks like he’s sleeping.
After going to three doctors, he was finally diagnosed with blepharophimosis syndrome. Which includes ptosis, and other complications with the lower eyelid, nasal bridge, and eye opening size. His eyes are normal size, and he can see fine, but his “lens covers” (eyelids) are just too tight and small. We soon learned he will have to have at least 3 surgeries in his lifetime, one at 4 months that will address the ptsosis and help Max develop his vision, another around 5 years of age that will fix his lower eyelid, and more of a final reconstructive surgery at around 9 years of age.
If you are a parent and you have a baby in a similar plight, let me first tell you, things will be ok. Enjoy your baby and know that things will work out. As we were at the doctor appointment where he was diagnosed the doctor looked at us and said,”Let this burden you have been carrying be put on our shoulders now. We will take care of him.” A great peace came over us; he understood what we had been feeling and we knew Max would be ok. People around you will tell you “it could be worse” and while that is true, it doesn’t minimize the grieving that comes with this disease. So let yourself grieve, but remember your child doesn’t even know he has a problem. And as my wife and children so lovingly reminded me, just love him and enjoy him, you don’t want to look back and feel that all this time was spent worrying about what went wrong. There were many nights I was consumed with what went wrong and then I would look over at my wife and see her loving and nurturing her newborn, just as she did with our three baby girls.
Here are some things I have learned and re-learned in the past 4 months while getting to know Max and prepping for his surgery:
- This mortal life is a messy experience by design. Mortal imperfections both in character and in physical appearance are just part of this experience on earth, even though we’d wish them away, they are here for our benefit and learning.
- Little children ignore maladies and simply love without barriers, and so should we. My daughters just love Max and could care less about blepharophi-WHAT?
- Men want to fix things and move on. Some things you can’t FIX as we are not in charge of life’s curriculum, and what really needs fixing is probably you, and the way you see the things.
- I firmly believe that there are no coincidences, I feel Max, our family, and those around him will learn and become better people from this experience, and I believe that is all by divine design.
- The power of prayer is a real tangible force driven by faith that can bring comfort, direction, and clarity that helps us see our situations from heaven’s perspective.
- God’s priesthood power has indeed been restored to this earth, and through it miracles of healing do occur, albeit, at times that healing comes through natural processes and revealed knowledge found in medical science.
- Try to see life through heaven’s grand vista, it’s so much clearer.
I’ll keep you posted on Max’s progress from time to time. I debated whether or not to treat such a subject on our professional blog since it is highly personal, but to me this is all about living inside the story of your own life, and being the character you need and desire to be when life get’s messy and doesn’t go YOUR way.
Besides, the blogs of so many other parents were so helpful to me when I first started reading about Max’s condition. I hope to return the favor.
Resources for Blepharophimosis Syndrome: