My little guy, Johnathan Ethaniel, is my pride and joy. I would go to the moon and back for him; that is how much he means to me.
When he was born, we were excited, as new parents often are, but soon the world as we knew it was shattered. There were signs that something was seriously wrong with our newborn baby boy. Johnahan was born with twelve toes (two toes on one foot) and eight fingers (two on the left hand and one extra on the right). In addition, he had neurological deficits and seemed to have decreased muscle tone. He had a cleft lip (mild, but still ... to see something wrong with your child's face is nothing short of shocking) and an oddly shaped tongue.
Something was going on; what, we didn't have no clue, but doctors decided to run tests on him anyway, to see the cause of his problems. It was found a few days later that our son had a rare brain malformation known as Joubert (Jew-bear) syndrome. Basically, as the doctor explained, it meant that the cerebellar vermis area of his brain (the area that controls balance and co-ordination) was significantly underdeveloped.
What did this mean? we asked him. The doctor said that our son would probably be mentally disabled and could develop seizures, liver, or kidney issues later in life. He said that the condition itself was not fatal, but our son would need supportive and symptomatic care as symptoms developed or worsened. He might walk, and then again, he might not. It was way too early to tell, he said.
All the plans that I had for Johnathan Ethaniel vanished, just like that. I cried at the news, as did Kellie, my wife. It was the worst thing that could have happened to us. We both felt as if someone had punched us directly in our gut; we held onto each other and bawled.
Flash forward, four years later:
Johnathan is now a big, strapping four-year-old with maroon-colored hair that curls about his face, big, aqua-green eyes, and freckles dancing across his nose and cheeks. He is a very handsome young man: he looks just like Kellie in miniature.
Johnathan cannot walk and is just learning to talk. He sits in a wheelchair that we push around whenever we go out; in the house he is usually lying in his hospital bed or on the couch. He is fed by a tube in his belly because his gag reflex is poor; he could choke, so to prevent this, we decided to have the gastrostomy (or G) tube placed into his stomach.
While it has taken care of the choking problem, he does, however, run risk of getting pneumonia, so physiotherapy (and breathing treatments, plus supportive oxygen) are a must.
It is not easy by any means, but Kellie and I have a great suport system in our doctors, home health care nurses, friends, and church family.
We also have to keep our eyes on our other child, two-year-old Jaqueline Elaine, who is as healthy as her "big" (little) brother is fragile. I am sure that when older, Jacki will be the best of friends with Johnathan, but right now she's more concerned with discovering the world around her and going to her Nana's whenever Johnathan ends up in the hospital again; she is extremely close to her Nana.
We don't konw what the future holds for our boy, but one thing IS certain: we aim to give him a very happy and full life and we want to give him all the opportunities for him to thrive and grow in a world not geared to his special needs. We want the world to learn to see past his feeding apparatus, wheelchair, oxygen, and AFO's (ankle foot orthotic braces); we want them to see that he is as much a child as any other kid and deserves to have fun. All we can do is pray and hope that this will happen. We are certainly richer in having Johnathan Ethaniel as our son and I (or Kellie) wouldn't have it any other way!