August 30th 1994 our lives forever changed. We were given the glorious gift of an angel here on earth. Our bouncing baby boy born at 11:30a.m. after a long and tumultous labour. We started at Tillsonburg District Hospital but were sent by ambulance a few hours later to Children's Hospital. 10 fingers, 10 toes, 2 eyes....all the right parts and was I excited. My husband an avid sports fanatic and atheletically gifted I closed my eyes and saw Dillan before me in an NHL uniform. Brian had been sidetracked from his dream but here we had a son who may have become the next "great one". Selfish maybe but I was a young mom perhaps living in delusion. 24 hours later we were home, Brian went in to have a vasectomy that day no more babies he told me. Within 48 hours we were dealt a brutal wake-up call. What I had mistaken for dark skin being that my mother is hispanic was in fact jaundice. Dillan's billirubin count was at the brain damage level and he was rushed immediately to Children's Hospital of Western Ontario. After several agonizing weeks Dillan was given a clean bill of health and I brought my baby home. 
Life at home was fabulous. I was a stay at home mom with 2 beautiful children. I'd never been happier in my whole entire life. Being away from my mom and wanting to always do the right thing, I think I bought every parenting book ever written. I would peruse them on occassion to make sure that both kids were reaching their milestones accordingly. By the time Dillan was 6 months old I had several causes for concern. He was a generally unresponsive baby and he was developing numerous cafe au lait spots. My paediatrician told me that these were "birth marks" and that Dillan was just a lazy baby. A mother's intuition is an astounding thing but I believed my doctor. By the time Dillan was 1 he wasn't even attempting to walk and the birth marks continued to multiply.
Dillan began school at age 4 with what we deemed as unrecognizable speech. Brian and I couldn't understand him most of the time and it was his sister who always knew what he was saying. She learned "Dillan talk". I remember repeating to Dillan "oh......." Amanda what get mad and say "No mom, this is what he said". Being that both kids were in school half days I opted for 1 to go in the morning and 1 to go in the afternoon. One child was always with me and on that fateful day Dillan had come with me for a doctor's appointment. Dr Rossiter had never met my son. She had been my doctor from the age of 12 and I adored her. I was there to get a physical and by the time all was said and done and we were getting ready to leave she noticed a large cal on Dillan's neck. Does he have anymore she asked. 123 birth marks I told her. We discussed his development and finally she said your son has Neurofibromatosis. "It is a cancer predisposing....." The rest I don't remember. I waited with Dillan in her office and she photocopied some information for me from a medical book. She referred me to a team of specialists.
I went home and cried for hours on end. Why my son God? Why? What will happen? How do I go on? The guilt and the grief were unbearable. I could not understand what had caused the NF. I'd never even heard of it before. 27 doctors later there was no refuting the diagnosis. Dillan was not lazy like the peadiatrician had originally told me, Dillan had NF! After the guilt, grief and denial I got angry. Why does nobody know about NF? Why is my son's future uncertain?
Immediately thereafter I decided that my mission in life was to educate people, raise money for a cure and above all else advocate for my son. Dillan began speech therapy and occupational therapy. Junior kindergaten went by without any glitches. Senior kindergarten was the beginning of Dillan's challenges. By the end of that school year he hated school. The kids at school called him polka dot shorts because of his cals. That summer Dillan and Amanda were outside riding their bikes in front of the house when I hear a piercing scream from Amanda. I run outside to see Amanda pulling Dillan's bike off the road and Dillan lying on the ground crying. Amanda is in hysterics "Mommy the kids pushed him off his bike, spit on him and called him stupid". I thought I would die from a broken heart. Grade 1 was a nightmare. The kids at school were cruel. They shunned Dillan because he was "weired" and "goofed" alot. Dillan made 1 friend that came over all the time and Ben wise beyond his years explained Dillan's plight at school to me. Mrs. Wass he said "Dillan can't catch a ball, he can't run very well and he can't even hold a pencil. His sister comes to help him eat his lunch, put on his coat and even tie his shoes. The kids at school beat him up for fun and Dillan doesn't even come out for recess anymore, he hides in the bathroom." I went to the school and freaked out. Dillan had already had 2 emergency room visits, 1 for his ears being filled up by stones and the second for being pushed off the top of the slide. I made it very clear that I would be their worst nightmare if they did not ensure my child's safety at school! The school felt that it would be in Dillan's best interest to spend afternoons in senior kindergarten so he could play. The teasing only got worse.
Brian and I faced an agonizing decision. Do we keep him in grade 1 and the teasing will escalate or do we let him move on to grade 2 without the ability to even hold a pencil? He will be teased either way so we consulted Dillan's teacher who was a social worker prior to becoming a teacher. She said that if it were her child she would have him repeat grade 1 and so we did. Dillan was bitter and angry and we put him in counselling.
His second time in grade 1 was a disaster. He became an agressive child, he couldn't handle the teasing anymore. He lashed out physically. At the beginning of that school year he began with all the questions. "Mom am I going to die?" "Mom there must not be a God because if there was I wouldn't have NF" "Mom does the devil get my NF when I die?" "Mom why am I different?" "Mom are they going to find a cure?" "Mom I don't want to have NF anymore". He cries himself to sleep many a night afraid there will be no tomorrow. He has no friends and the neighbourhood kids find it amusing to stand in front of my kitchen window and yell "retard, retard". Dillan prefers to stay inside and be alone. He loves to listen to rock and roll really loud, possibly to tune out the kids outside having fun.
Physcially he has 2 tumours on his spine, 9 in his neck, 5 lisch nodules in his eyes, he is developmentally delayed and has poor fine motor skills. That I can live with, it's the emotional trauma that we find difficult to cope with. "Why our child God" has now turned in to thank you so much Lord. Dillan has taught us the true meaning of love. He has given us greater compassion and a better understanding of the important things in life. He has made us kinder and stronger people with a healthier and more positive outlook on life. Dillan has taught us the importance of making everday count and happiness is not something you buy rather something that is innate. I can't imagine my life without Dillan and I will be forever grateful that I was choosen to be his mom. I wouldn't have wanted it any other way, he is my angel here on earth, he gives me a daily dose of strength and courage.
We love you Dillan!
