Friday, February 27, 2015

Wesley Update: Coping with Our Son's Blindness

I will never forget the moment we chose Wesley.

It was a busy day at work when the phone on my desk rang. It was my wife, Patience. She called with great news. We were currently in the beginning stages of our adoption. From the moment we saw his picture online we knew we wanted Wesley, but there were several hurdles to clear. We had been informed it was rare a family is ever matched with the first child they choose, and that Wesley was being looked at by a couple of other families as well.

“The other families backed out,” Patience said, her voice shaking from emotion.

“That’s good, right?” I asked.

“Yes, it’s great. But they need an answer.”

“For what?”

“They need to know if we definitely want to pursue Wesley. Do we want to make him our son?”

There are moments in life that seem to go by in slow motion, and I can specifically remember the world turning into a foggy blur around me as she spoke. I was quiet. Not out of hesitation. Rather, I was quiet, because the weight of our decision hung in the balance of my answer.

“Absolutely,” I replied.

I could hear Patience crying on the other end of the phone.

Through her tears she responded, “Can we do it though? He’s blind, Brandon. Will we be able to take care of him?”

I didn’t answer her question directly.

“JulieAnna is eight years old and Sawyer is four. Just think of all the wonderful memories we have already made with them; all the love they have brought into our world. Knowing what I know now, if the doctor told me that Sawyer was going to be blind at birth, do you think I would hesitate to make him my son? Absolutely not. I would choose Sawyer every time because he is my son no matter what condition he’s in. He has filled our life full of laughter and joy. Same goes for JulieAnna. I would choose her every time because the love she has brought into our world. No matter what physical condition they are in, it would be worth it to have shared life with them. And the same goes for Wesley. I don’t care what’s wrong with his eyes. He is our son, and he is worth it.”

I spoke with a confidence that seemed to be bursting from deep within my own chest; a confidence I rarely possess.

Patience’s crying intensified, as tears began to roll down my face as well.

“He’s our son,” she repeated back to me.

“Yes, Wesley is our son,” I echoed back.

It’s amazing to look back at that moment over two years ago and then fast-forward to now. Now that little boy is no longer a picture. He is no longer a hope or a prayer. That little boy is our son. That little picture is now flesh and blood and boogers and tears. That little answer to prayer sits in our laps and kisses our faces and calls us Mommy and Daddy. It’s surreal at times.

But now that the newness of our transition has begun to wear off, (He’s been home 16 weeks this Sunday!) we are just starting to cope with the reality our son is blind.

You can easily forget he is blind because he is so smart and capable. He is also quick to adapt. We noticed early on that Wesley has to have his hands clean, and prefers to be barefoot. In a lot of ways he experiences much of his world through touch. He is legally blind with his glasses on, but runs around the house like a kid with 20/20 vision. This is only because our home is now familiar territory. If you throw anything new in the mix, Wesley is likely to slam into it. We have to be careful about open doors and chairs pulled out from the kitchen table. His poor legs are covered in the bruises of a hundred attempts to navigate throughout his day to day life.

I guess it was a few weeks ago I first became very sad at the fact Wesley can’t see very well. I have been building the kids a tree house, and was outside working on it at the time. Wesley came to the sliding glass door and began to call out for me. The treehouse is probably thirty feet from the glass door, but when I yelled back his name he just turned his head like a dog hearing the door of a neighbors car.

“Daddy?” he called again.

I watched in sadness as Wesley scanned the back yard. I was nowhere to be found. I stopped what I was doing, and called out to him again. His ears would perk up, but I could tell he had no idea where I was. I put down my drill and sat in the tree house with a heavy heart for my son. It’s moments like these when I realize just how much I want to see Wesley’s vision restored.

Wesley recently went to the pediatric ophthalmologist in town. The doctor's
words pretty much sum up everything.

“Wesley has some funky eyes,” he told Patience.

It’s true. He was born with bilateral cataracts (one on both eyes). Those cataracts were removed, but the lenses were never replaced. He suffers from nystagmus, which means his eyes are always shaking back and forth, especially when he gets upset. On top of that, Wesley’s right eye has lots of problems. For starters, it’s very small. I don’t know if you know this, but eyeballs do not grow. His right eye also has no iris. It is if he is living with eyes fully dilated at all times. This is very damaging to the optic nerve, and something we are going to have to deal with. Also, when we got him, his right eye rolled around so much half of the time you couldn’t even see it. The doctor explained that Wesley’s brain was shutting that eye down because he never was forced to use it and it was the weaker eye. The most immediate action was to begin patching the strong eye two hours a day to force the weaker one to work properly. We have been doing this for months now and the results have been amazing. Wesley’s weak eye seems to be growing stronger every day. In addition to this, he also is at high risk for developing glaucoma, to which we will be going to Emory soon to see a specialist. There is a laundry list of other potential problems that are too overwhelming for us to even think about right now.

Despite all the problems, Wesley is a true champ. We are just beginning to learn what a special, stubborn, persistent, strong, and wonderful little guy he is. But it can be tough at times.

Patience called me again at work the other day. This time it was about Wesley’s visit to the geneticists. They want to know more about his family’s medical history and it is our only avenue of doing so. Anyways, Patience called me and I could tell she was a little perturbed.

“What’s wrong? Did everything go okay?” I asked.

“Oh, it went fine… it was just the doctor,” she replied shortly.

“What about her?”

“Well, she kept referring to Wesley as ‘a blind’ and it really was getting on my nerves.”

I paused.

“But… he is blind,”

“I know that,” she retorted, “But it was just the way she kept saying it. It just rubbed me the wrong way. He's not just 'a blind' you know.”

I understood her frustration. Patience and I are learning to deal with just what all it entails to have a child that is blind. To be honest, we do not treat him any differently than we did our other two, and he has been more than capable, but there are still those moments when your heart breaks. He’ll point to the horizon sometimes and tell us he sees water. Or look at the sky and scream airplane when there is none. He also has a special chair we pull right up to the TV because we realized he could not make out much of what was going on without being quite close to the screen.

All these things bother me. I hate it for him. But then I hear his giggle on an early Saturday morning, and go into his bedroom.

“Good morning, Sunshine!” he says; still with a thick Korean accent.

I climb under the covers as Wesley wraps his arms around my neck and kisses my face. Without his glasses he cannot make out much more than big shapes, but it doesn’t matter. Because with him in my arms the world just seems right. The thought never crosses my mind about his blindness. Instead I am overcome with the love I have for him. He is our son, and no matter how hard the road, he is worth it.