We all have dreams for our kids, and most begin the day they are born. Whether they are born under typical full term conditions, or under the panic of a pre-term birth, we all have dreams. For us, we had big dreams for Nicholas…and in his 4 years of life, he fulfilled them all.

Nicholas was born June 21, 2006 at 9 weeks early. No reasons were given for his pre-term birth, and due to a breech position, he was born C-Section. While early, he wasn’t considered critical, and his APGAR scores at birth seemed to ease any fears we had.

After Nicholas’ 28 day stay in the NICU, he was finally ready to come home. We were typical new parents – nervous, unsure, and with the added stress of his NICU stay, we were worried about him. Everything seemed to be fine the first couple of weeks, and he ate often and slept non stop. Then, almost overnight, colic started. Nicholas would cry all day and all night. He would settle down for periods during the day, if someone was holding him. But at night he was inconsolable. We also noticed something unique with his hands…we referred to them as “jazz hands”. His fingers were constantly extended and spread apart, almost as if he were waving. We thought it was cute.

We took him to the pediatrician seeking help with our sleepless nights and frustrating days. After a quick exam, and listening to our concerns and descriptions of the crying fits, all she could say was, “It’s colic, good luck”. She suggested alternate forms of baby food, coping mechanisms, and sent us home for what we thought would be a long few months.

About 6 months after he was born, we seemed to turn a corner. The crying became less and less frequent, and was becoming bearable. As Nicholas was awake more, we noticed some things that concerned us. He couldn’t bend at the hips, he held his arms against his chest and his fists were clenched tightly. He didn’t kick his legs around, and he didn’t turn his head. He rarely smiled, and rarely babbled. Clearly, Nicholas was dealing with something…we knew that. Our hearts told us he was still dealing with delays from his pre-term birth. Our heads told us something different.

So, we went to the pediatrician again to voice our concerns about our son. She said that in her professional opinion there was nothing wrong with Nicholas. He had colic for so many months and if you add that to his premature birth, he was just simply developmentally delayed. The signs were there, the delays were evident. But we were never asked to seriously consider anything significant as the cause.

It seemed a bit too easy of an explanation, and we began to notice concerned looks when family and friends were around Nicholas. While he had started to smile (and rarely stopped), there was very little movement that you would expect from an 8 month old baby. We again went to the pediatrician for further review. This was the THIRD visit, but outside of severe cases, pediatricians did not know what to look for. Running out of explanations for the increased delays, we were given a script for Nicholas to be evaluated at the Robert Warner Rehabilitation Center at Buffalo Children’s Hospital.

I remember the initial review as if it were yesterday. A therapist came in, and began a cursory exam of Nicholas. After two basic tests measuring reflexes and eye movement, he went to get the Doctor. He was asking questions about his delays in moving, sitting, his difficulties talking, among others…we proceeded to try and explain every one away. The Doctor seemed un-phased by what we were telling her. She agreed with the premature birth as the likely cause of the delays, and recommended Physical and Occupational therapy for Nicholas. We started immediately.

So here we were, Nicholas at 10 months old, Cerebral Palsy NEVER mentioned as a possibility by our pediatrician OR the specialty Doctor. We never heard it, so it never entered our mind. If they weren’t worried, we weren’t and the therapies would help him “catch up.”

For two months, we had worked with a Physical Therapist and Occupational Therapist twice a week. It was a new commitment, and required us to learn stretches and techniques for playing with toys and encouraging sitting and reaching. We carried over all the things they showed us and worked with Nicholas diligently every minute of every day. We sometimes felt like we had become therapists ourselves.

We had his first birthday party and all of his cousins came to celebrate. That same year, Kirk’s siblings each added a baby to their families. Nicholas was the oldest of the five, but all of them had been born in one year. I remember sitting on the floor with Nicholas and three of his cousins. They each could sit unsupported. Nicholas was sitting with a boppy and still could not maintain his balance for more than 30 seconds. They were all grabbing for toys and picking things up. Nicholas fists were clenched tight and I had to open his fingers and put toys into his little hands. Some thing was wrong, he should be able to at least do what Grace was doing. She was 7 months old and with his skills being tested at 4 months and now having had therapy for 2 months, he should have been getting close to her skill level. But he was not.

And just three days later, at a follow up visit with the Robert Warner Center, we would find out why. They said he had Cerebral Palsy. I didn’t know if I should throw up, scream or cry. All I knew was that there was something wrong with my child and I didn’t even know what Cerebral Palsy meant. And I don’t know if at that moment I really cared. » Page 2