When I found out my son had cerebral palsy I had no idea what it was. I happened to be in the intensive care nursery having a quiet chat with my husband when two doctors walked in. Don’s little incubator was one of their stops. They didn’t know we were attached to him. One said to the other “oh yeah, he’ll have cerebral palsy”. Wow. We went across the street to a restaurant and stared across the table at each other. I remember asking Don’s dad “do you know what cerebral palsy is?” and he said he did not, but he had a friend in grade school who had been in a wheel chair and passed away after a few years.
These were the days before internet so we had no ready resource to go to for information. You can bet we cornered Don’s pediatrician on his next visit and asked him what was going on. But we didn’t get much information. He said “They never should have said that. We have no way of knowing how things will turn out for Don”. That satisfied us in the moment and we eventually took our son home to enjoy his first months.
Babies don’t do much at 1, 2, and 3 months. When awake he was alert and seemed to be doing what my daughter had done. Yes he was a little stiff and we could successfully prop him up in standing…what can I say? We were new to this. I remember being heartbroken that I had to let him cry to sleep the first few weeks, but no matter what I did to comfort him I wasn’t helping. But lots of babies have trouble going to sleep, right? Now I know these are clues to damage in his brain.
At three months our pediatrician was not happy that his hands were still fisted tight with the thumbs inside. No diagnosis, but enough concern to send us to a Kaiser pediatric physical therapist. We learned to prop him up on his stomach. He was also arching back so well that he could roll himself from his tummy to his back. At Don’s 4 months old visit the pediatrician said “Well he’s not rolling over, of course”. “Yes he is” I was proud to say and Don demonstrated. That’s when we ended up referred to the state agency, California Children’s Services for therapy. Ok. Arching is NOT normal.
That poor therapist that did the intake for Don. She tested, wrote up her report, and called me in to let me know the results. When she said he had cerebral palsy she had no idea that I had never been told. Cue tears and LOTS of questions. She excused her self and practically ran out the door to get her supervisor. I remember asking “will he walk” “will he be able to play and have fun?” “will he live very long?”. We were scheduled for occupational and physical therapy to start the next week.
Our first appointment was with two of the most amazing women, Mari Nomura and Christine Wright. These two observed my son and marveled at his intelligence just by seeing what he focused on and what he had accomplished so far. Yay! Finally something positive. Little did I know what good hands Don was in. These two led Don to be the youngest little guy ever to have ankle foot orthotics, a talking board, a walker, and a power wheelchair. He had all these things by 2 years old. Their can-do attitude modeled for me a way of approaching disability that formed our future.
Yes, I was majorly stressed, to the point it eventually ruined my health. It’s difficult to say I would do it any different. I would wish for other parents to be able to slow down and enjoy the moments more. To take more breaks, and come back refreshed. But it feels like war. I was battling the limitations imposed by the disability, the school district, the doctors, and the finances. I was described by someone as a mother bear protecting her young. When you are at war you rally all resources. The problem with this war is that it went on for a very long time. My personal resources were eventually exhausted. Thank goodness not until my children were almost grown.
I am so happy today to see both of my children grown and enjoying the lives they have chosen to live. That is the biggest gift I could give to them both; to try to make sure that they got to choose their paths. They both gained and I did too. I learned so many things along this journey and now have a career spending my time doing something I love.
