We both have neurofibromatosis type 1 of NF1 for short. He looked a lot like Quasimodo the Walk Disney version. Shortly after birth he was called monster baby or freak until he was in the 6th grade. We would be followed in stores, malls, parks and even sporting venues.
When he was 8 we went to the circus. A little girl about 5 years old was in line ahead of us with her father. We were getting cotton candy. She was laughing and asking her dad if she could have the blue and pink combination. A second later she turned around saw my son's face. An ear piercing scream was emitted and she let go of her father's hand and ran to her mom who was standing close by. His Godmother was with us and she looked at me in shock and asked, "Does this happen often?" I replied, "At this level, about twice a year. Usually the scream isn't intense."
He did endure taunts pre-school through 6th grades of 'freak' or 'monster.' Middle school was heaven with only one painful event. It was the weeks leading up to the sweet heart dance. Several girls asked him each day if he was going to be at the dance. He was so excited he asked if he could have a suit. We went to Men's Warehouse, They were so awesome and he looked like a 7th grade James Bond. I picked him up when the dance ended. His first words were, "I should have known." It turns out that once the dance had started they told him that they didn't think he was really going to show up. Despite being hurt, he did continue to ask gals to the dances 8th grade through his senior year. He was always turned down but went stag. He had a great personality and we have pictures from every dance and prom.
His father walked out when he was 4 months old and the divorce was finalized a year after that. Many positive things happened as well. He was a ball boy for the ASU basketball team for three years. He met Sir Charles Barkley and several of the Phoenix Suns. He also did a PSA for NF and appeared on the front page of the Arizona Republic because of his positive outlook on life.
The blessing came in that he passed two weeks before Arizona was closed down. We had to wait a month for his ashes and they have been with me for 11 months. Today he will be placed in a niche that is reserved for me. The last request was mom if I should die I want to be cremated and go to St. Stephen's and I want you to be next to me. Today I am fulfilling the second part of his request. He died from the same type of brain tumor that to Pres. Biden's son, Beau.
Jay is now free of cancer, free of NF1 and is no longer being called a freak, being denied jobs based on looks, or being followed around the grocery store hearing whisperings. He was never bitter and always better.
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