When I was six months pregnant, my doctor sent me for an ultrasound because he was sure I was further along than I thought. Either that or I was having twins. When they did the ultrasound my husband and I could tell something was wrong, but the technician wouldn't tell us anything. They made an appointment with my doctor for the next day. We were worried, but we really didn't expect anything too bad. He told us that our baby had Spina Bifida and Hydrocephalus. A big question mark went off in our heads. We had never heard of this. The doctor explained that SB is where the spine doesn't form properly during the pregnancy. Hydrocephalus is caused from the cerebral spinal fluid backing up into the head. He said that normally these children die at birth or are vegetables for the rest of their life. He then proceeded to ask if we wanted to check into an abortion. He would have to call around to the local hospitals to see who would do an abortion on a six-month old fetus. We were stunned. Shocked. We agreed. We left his office so confused and crushed. This was our second child but it didn't make the devastation any less. Luckily, my mom lived down the street from the office. We went straight there. Thank God for the loving arms of a Christian mother.

After we talked with her, we realized that we couldn't take our babies life simply because it would have problems. After all, there were three whole months left, anything could happen. We called the doctor and told him we changed our mind about the abortion. We also found a new doctor. Unfortunately, he gave us the same outlook. We fired him. Finally, we found two wonderful doctors at University Hospital. They said they would do everything in their power to save my child. For the first time, I had hope. I began to pray everyday. All the time. Whenever I was alone. I would lay my hand on my belly, pray, and talk to my baby. At the time, we still didn't know if it was a boy or girl, so he was just "my baby". I ended up having two amniocentesis' to check his lung development. I had to take steroids to help their development. We had to take him c-section because of the size of his head. Natural birth was out of the question. My husband was in the operating room with me, when they delivered him, he hung his head and cried. I didn't get to see him until later. They brought him by my room on his way to Children's Hospital. He was laying on his side, his legs and feet all curled up like a pretzel, his very fragile head lying on a special pillow. I reached my hand in and touched his little sleeping form. This was my son. My first son. I cried as they took him away. I made my husband load me in a wheelchair everyday so I could go visit my new baby. He didn't die at birth as the other doctors claimed he would. No, he lived. He was a miracle. We named that miracle T.J.

When he was born, he had an opening in his back, and his spinal cord was protruding out of that hole. Nerves were exposed. They did surgery on him to cover up his back. He was one of the first eight people in the world to have this particular surgery. They made incisions on either side of the opening, stitched the skin together over the opening, then stitched up the incisions. They installed a shunt into his head when he was a few days old. The shunt pumps out the fluid from his brain to his abdominal cavity, where it is absorbed. We realized within days that he would probably never walk. He didn't move his legs at all. I would find myself just staring at his legs. Willing them to move. But it wasn't to be. He was in the hospital for 20 days. We had to stay all night the day before he left so they could make sure we knew how to take care of him. Oh, I knew how to take care of him alright. I started heaping all my love upon him. I do have to admit that I was scared. We didn't sleep very much at all the first month or so. We kept him in a basinette next to our bed. I would push my arm through the bars and lay my hand on his back. The rise and fall of his tiny back wasn't something I wanted to feel. It was something I needed and had to feel.

He had two shunt revisions that first year. He also had his first seizure. We were on our way home and we stopped at the store. My husband went in, I stayed in the car with the kids. I turned around to check on T.J. and noticed he was sweating, flushed, and not breathing normal. I panicked. I brought him into the front seat with me. I couldn't run into the store for my husband, because I had my little three-year-old daughter as well. So I did the next best thing. I prayed. Soon after, he came out and I brought him into my panic. We immediately left for the ER. It was at least 20 minutes away. We flew. I told him to run every stop light between us and the hospital. I kept my hand on his chest to make sure he was still breathing. He was, but it was very slight. I was terrified. We found out it was a seizure and they promptly put him on Phenobarbital, an anti-seizure medication, which he has been on ever since. They have started to become more frequent, so we changed his medication. He now takes Phenobarbital and Tegretol. We also found out that not eating can cause a seizure. Unfortunately, we found this out because of our daughter who has Hypoglycemia. She had a Hypoglycemic Seizure from not eating enough. Our Pediatric Specialist informed us that this can happen with SB kids also. The lack of food causes their blood sugar level to get off the mark, which can cause a seizure. I make sure he eats often now.

That first year started us off into a life that we would never have foreseen. He's had many surgeries in his lifetime. Five before he was one year old. He had club feet when he was born, so they did surgery to correct that his first year. His feet have been straight ever since. He's had several shunt revisions. Six years ago, he had a kyphectomy. When he had his very first surgery on his back, they added plastic to protect the spinal cord. He had a large hump in the middle of his back, which caused him to hunch over. It was crunching his insides, so they had to try to straighten it out. They fused vertebrae and installed two steel rods, one of either side of his spine. This worked great for three years. He grew a lot and the rods ultimately broke and pulled apart. They had to go back in and replace the rods. It was a very nerve-wracking eight hour surgery.

Due to his last surgery we now have to catheterize him 4 times per day. Nerves were either cut or injured in the surgery and caused him to have bowel and bladder dysfunction. He is not able to void on his own now. He was never able to control his functions, so it was just a diaper change every few hours. Now, it's catheterizing, and then a diaper change. Unfortunately, there are side effects to this. Urinary Tract Infections (UTI) are very common. I have to have him checked monthly for infection and if one arises, he has to be put on antibiotics.

We found out recently that he has Arnold Chiari Malformation (ACM) and he has had it since birth. Of course they never thought to pass on that information to us. If not for the online discussion group I found 2 years ago, I would never have thought to ask the doctor about it. Luckily, he's not symptomatic. To learn more about ACM, go to the links page and click on the "World Arnold Chiari Malformation" link.

Nobody could even begin to understand what the parent of a differently-abled child goes through, but we wouldn't trade our son for the world. He is our real, living, breathing, angel. He's got the most beautiful smile and loving heart. He never meets a stranger and judges noone. What would life be like with a "normal" little boy who plays baseball and rides bicycles? We don't know and frankly don't care. We still treasure the sweet joy we felt the first time he rolled over, when he pushed his chair, read his first word, rode the bus, scooted from his chair to our bed, pushed himself across the finish line in a wheelchair race, swam to the finish line in his first swimming competition, and brings home the gold medal in bowling. Everyday is an adventure and a lesson. We thank God for giving us our son.

-Glenda Johnson