August 7, 1977 at 5:52 AM, 43 years ago, I gave birth to my firstborn son, Michael Jason. He was 7lbs 4 0z -17 inches in length. He was diagnosed with a rare form of dwarfism. I saw a darling baby boy; a little small, kind of on the chubby side. The world saw a \”deformity.\” The hospital staff scrambled around – my OBGYN avoided me and never came in to talk to me. The head of OBGYN had to come in and talk to me.
Our families were shocked – they didn\’t understand how this could have happened. We didn\’t know why this happened. Later it was determined to be a new mutation. Imagine, your little baby is called a mutation. Those were the words I would hear from the medical profession as well as deformity. I did not think of him in that way. My ex\’s family blamed the \”mutation\” on my family, and deep down the in-laws never took to baby Michael who was the firstborn in both families. It didn\’t matter – my parents and my sister adored him.
I contacted Little People of America. Harriet and Al Stickney. A dwarf couple in their middle age, drove up as we peeked through the blinds. I watched as their short chunky bodies walked up to my walkway. They were a lovely couple that immediately plugged us into the resources we would need. From then on, we attended conventions, small group socials with other families in the Bay Area. I even knew Matt Roloff, (From Little People Big World) when he was a young teenager. His mother, Peggy helped me, a lot when I needed that support.
|Michael on his bike, Navy on a big wheel and Foodie on a scooter in front of our house.|
He wore leg braces till the 2nd grade. They were not doing any good so the Orthopedist told us to go out and buy him a bike and let him live as a regular (we never used the word \”normal\” in our house.)2nd grader. We left the clinic and proceeded to purchase his first bike with training wheels. A Happy day for all of us.
Our local elementary school was dumbfounded – when I arrived in May of 1982 to register him for kindergarten. Back then there was no IEP\’s. Once again, I saw a little 5-year old that was looking forward to school while they saw, a BIG PROBLEM. We needed ramps constructed, water fountains lowered, chairs, desk, etc. He also wore leg braces and used a walker. On the first day of school when we arrived, you could have heard a pin drop in the schoolyard it was so quiet – with the exception of moms shushing their children who were curious about why he was so small.
After the first day, my neighbor came to tell me, that the PTA was demanding that Michael be placed in another facility that was more suited to his needs. The moms in his class were concerned for their children\’s safety in the way of fire – he would slow their children down, getting out the door. I called the ACLU in San Francisco and a local SF news outlet. The principal even had the audacity to suggest Michael wear a condom catheter since he also had a loss of hand strength disability which made it impossible for him to use zippers or buttons on his pants. Let\’s just say, we prevailed. They installed concrete ramps – provided a smaller desk and chair, and instead of lowering the water fountains (once again they said it was an obstacle for the other children) they provided a sturdy stand for him to hoist himself, using his walker. He managed fine. The other moms from then on shunned me. I was told by other teachers were later became good friends with our family, that there were other teachers who did not want Michael in their classes. Not until the district then provided Michael with his own TA. That meant, any class that had Michael was allotted 2 teaching Assistants instead of just the 1.
Michael showed them. He went on to be a very popular and well-liked student – He moved down to Long Beach, Ca – went on to college – graduated from Cal State Long Beach. He was living his best life. He was independent. Mom did good!
Due to his undiagnosed dwarfism, we never knew what to expect. He was healthy – hardly ever sick. He had some orthopedic problems and we were well aware that one day he would be in a wheelchair or need some assistance. He was on the shorter side of dwarfism. He was around 34 inches tall when he died at age 25.
When he died unexpectedly at age 25 from an undiagnosed heart condition, the world as I knew it was over. I lost my firstborn baby – I lost my best friend. I was so proud of the man he was just starting to become. He would have made something of himself. He was a member of the Screen Actors Guild – was in one movie with Matthew McConaughey and he was a Sportswriter. He had an awesome sense of humor and was working on his master\’s degree.
It will be 18 years in May 2021. Life has progressed the way life naturally does. His brothers are men with lives of their own. I\’m almost 18 years older – my gray hair is in full and I have many wrinkles. He would be shocked, if he saw us all now. And while I\’ll never get over such a tragedy I have had to move on. He would have wanted that.