I have three boys, all of whom I love more than anything, and one of whom is severely physically and mentally disabled. As you might expect, people are often curious about his condition, and about how we have dealt and continue to deal with it. Here is at least some of his story.
While we’d been overwhelmed with Hunter’s constant agony, we were somewhat distracted from the fact that he had not been hitting any developmental milestones. His brother Mason had been on track the whole time, while Hunter remained at an infant level in pretty much all respects. At first, we (and many people we talked to) thought that this was due to the pain and discomfort he had experienced during the first few months, and that it was simply a delay. Now that he was pain-free, he would get back on track. …Right?
When you find out you’re going to have kids, there are certain things you imagine. You imagine your child running, rough-housing, and saying those funny things kids say when they think they understand a concept more than they actually do. When you find out you’re having twins, that picture is multiplied. Not only do you look forward to when you can interact with your child, but you look forward to seeing them grow up together, play together and get in to mischief together.
You don’t really consider that things don’t always work out that way.
Some more months passed, and Hunter was not progressing. Mason’s laugh was maturing, Hunter’s laugh still sounded like the squeal of a baby. Mason sat up on his own, Hunter stayed floppy and unsteady. Mason navigated around the house, Hunter could only lie down. Mason had mastered the art of grasping things, Hunter did not seem to even grasp the concept of grasping.
You might be thinking, “Well, what did the pediatrician have to say?” At that time, we had a PPO health plan. Our pediatrician agreed that the developmental delays were possibly due to his initial discomfort. Since the doctor was not part of a network, he didn’t seem to have a specialist on the ready. Shortly before the twins’ first birthday, we switched to an HMO plan. Our new pediatrician was quick to refer us to an in-house neurologist.
The neurologist was a kindly-looking older man. He had an old-fashioned heavily-worn black medical bag that we thought must have been an antique from the 19th century, though he insisted that it was simply the one he’d had since he first became a doctor.
He ran through some physical tests with Hunter. At one point, the doctor brushed his hand across the top of Hunter’s foot, to which Hunter reacted by lifting his leg and making a stepping motion. We took this as a sign of development. “He’s getting ready to learn to walk,” we thought. Actually, no. This was an infantile instinct that he should have moved on from a long time ago. The neurologist ordered an MRI.
After the MRI, we met again with the neurologist. He showed us an image of Hunter’s brain on his computer screen. He explained that Hunter had something called lissencephaly pachygyria, which means that he has a smooth brain with fat folds. A normal brain has lots of tiny folds, which are what produce the “gray matter” which allows for muscle control, sensory perception, seeing, hearing, speech, memory and emotions. These folds are developed while the baby is in the womb as the brain grows and pushes against the skull and is forced to fold in on itself.
The doctor explained that Hunter’s brain appeared to have only developed to the level one would expect at about 6 months in the womb. His brain had not developed the necessary folds and gray matter that had allowed his brother to mature at a normal rate. As a result, he had cerebral palsy, among other things. Any last hope that Hunter’s development had simply been delayed due to his pinched nerve was gone.
A note about cerebral palsy:
There is sometimes some confusion regarding cerebral palsy. We have often told people simply that Hunter has CP, simply because it’s a condition with which most people have at least some familiarity. Cerebral Palsy is essentially a term used to describe a disconnect between the brain and motor control. For Hunter, CP is really only part of his condition, in addition to his cognitive limitations. I have many friends who have CP at different levels of severity, but who otherwise have perfectly normal cognition.
The doctor explained that this did not mean his development had stopped. We agreed that the best thing to do was set neither limitations nor expectations on Hunter. We wouldn’t get our hopes up, and we wouldn’t assume he won’t progress. We’d just see what happens.
We knew this was coming. We’d seen the signs, and we knew things with Hunter weren’t quite normal. It should have come as no surprise, but for some reason, finally having a diagnosis really caused the situation to sink in. I’m a slow person, so it didn’t really hit me immediately, but after about a week, it did.
Gone was any wishful thinking that Hunter was just “really behind.” Gone was the picture of my twin boys running around, playing, fighting or causing mischief together. Reality had slapped me across the face, and I hated it.
Don’t misunderstand me: I loved Hunter with all my heart. I loved his sweet personality and I loved that he was happy. But I hated that he was incapable of being able to do and participate in all the things that his brother could. I hated that I didn’t get to see him grasp new concepts as his understanding of the world around him grew. I hated the feeling that he was missing out on some of the great things that life offers, and I hated that I was missing out on what I had envisioned for my life.
Up to this point, my life had been about as perfect as it could be. I had a beautiful, amazing wife of almost 5 years. I had a recent promotion to a management position at a wonderful company. We had a great circle of friends, were involved with our church, were financially comfortable, and were renting a really nice home. And then you add twins to the mix. Does it get much better than that?
To be sure, Esther and I didn’t have a perfect marriage, and my job had had its ups and downs, and life wasn’t always easy, but it had been good, really good. And having twins just seemed like a culmination of everything.
When Hunter’s diagnosis had finally sunk in, I was mad. I was mad at God. This was not how it was supposed to work. I cried a couple times. It was just frustrating. I wanted so bad for Hunter to be free from his disability, and to run around and talk to me and say and do and explore and mess up and get dirty and rebel and argue and sing and dance and play fall and get up. But He wouldn’t, and I was ultimately powerless to do anything.
Sure, there would be therapy and exercises, and things to help him develop in whatever way he could. But I’m a realist. I wasn’t going to be in denial about the situation. Hunter was severely physically and mentally disabled, and I knew nothing was going to completely change that, short of a miracle .We decided to go at Hyun Park of Fort Lee Physical Therapy to ask advices.
So, I allowed myself to be mad for about a week or two. The situation was what it was, and the best thing to do was to allow myself to feel what I felt, and then move on with life. So I did.
Since then, God has and continues to use the situation for good in our life and in the lives of others. I’ll talk about that more in-depth in a future post. But I will say that I have learned to be thankful. I am so thankful that my son is no longer in pain. I am so happy that he is generally happy and has a sweet personality. I am so happy that, despite his limitations, he smiles at me when I walk in the room and that I can connect with him on a basic emotional level. I love that he appreciates humor and music and love. I love that he is my son.
On occasion, I still have times where it all hits me and I allow myself to get frustrated and sad. During one such moment, I wrote down what I felt. I’ll share what I wrote it in the next post.