Wow. Where did the years go?
It seems like yesterday Mathew was born. John and I moved from Lahr, Germany across the pond then Canada to the west coast…specifically, Nanaimo, British Columbia. We were back on Canadian soil for a mere 3 weeks when my water broke unexpectedly and 24 hours later our first child was born.
He was 6 lbs 12 oz and had no fat on him whatsoever. He was born at around 37 weeks so was considered a full term baby. He didn’t cry much for those first few weeks and feeding him was an issue. He didn’t sleep any length of time nor did he eat any great quantity at a time.
He was a gorgeous little fellow. Mathew had blonde hair and the most beautiful smile.
Little did we know what a tough life this child of ours would have! He didn’t sit until he was 15 months old and he never did crawl. He rolled everywhere instead. When he started pulling himself up and walking at 12 months he fell over, stiff as a board. It wasn’t until Kristen was born the following year that I saw that babies tended to bounce down on their bums and then maybe fall over. Not Mathew ~ he fell in a straight line!
When he was one the family doctor first picked up on his developmental delays. Shortly after we moved across the country to New Brunswick and it took another couple of years before he was seen by developmental specialists that set us on a very long and weary path.
In addition to being diagnosed with autism at age 4 (mild), there were his gross motor skill delays and other developmental delays. There were his daily difficulties in handling life, period. He did get upset a lot. It would be another 12 years before Mathew was diagnosed with a mood disorder that finally changed his, and out, life with the medication he was prescribed.
In school kids weren’t kind to him at all. He was bullied mercilessly and finally in grade 8 I took him out of school until the school board found a safe alternative for him to learn in. That is when he flourished the most because he learned at his pace and with a modified school curriculum for half days. His high school days were also better as by then kids in general weren’t so hell bent on making his life miserable and precautions were taken to keep him safe and away from taunting students.
It wasn’t until he graduated high school and started at Key Industries in New Brunswick that he finally felt like he belonged somewhere. He had friends at this non-profit centre for the intellectually disabled and he was happy.
It wasn’t too long after however, that those first insidious pains in his leg started that led to the diagnosis of cancer several months later. That was 2-1/2 years ago and he is still fighting the spread of the disease from his spine to his lungs.
Mathew has endured so much in his 23 years, more than a person should. When I think back to those first few days after he was born, gazing at him in awe and adoration… none of us knew what he was in for. I thought we would do a fine job of protecting him from the dangers in life. I imagined him tall, handsome and blonde with that hair of his.
He is tall, handsome and somewhat blonde when his hair grows in between cancer treatments. He has the most gorgeous smile and an infectious laugh when he gets going. He loves his anime, wrestling (entertainment style) and movies ~ oh and let’s not forget his gaming devices!!
He is my sidekick and we’ve carved a life out together as we face this greatest challenge of all; cancer. Over the years of trying to figure out how to help him and discover what his world was….he did much to mold me into a better and kinder person. I have a lot of patience with life and let a lot of the little stuff slide. I let go of a type A personality and definitely groove to a sedate lifestyle. I rebelled against this child who couldn’t conform to society’s standards and who had us a part of that difficult world of his.
Some years ago I learned to stand up for what I believed he needed and that gave me a backbone and confidence to stand firm for other things I believe in. He taught me to not back down when people and the system tried to override my mother’s instinct and try to convince me my gut was wrong. Being a part of his world led me to a breakdown, a change of place to call home and to change my whole outlook on life.
I let go of my dreams for advancing in the workplace so I could concentrate on getting him through school. I let go of what I wanted for us as a family and settled for what worked for us and for him. I slowed way down and learned to smell the flowers and sit in silence and just watch the world go by in peace. I stopped judging others and learned tolerance. I have met so many unique and wonderful people through Mathew and because of him.
This cancer he has is so scary and aggressive that we are counting our blessings he is with us to celebrate this birthday. He is in constant pain but takes pleasure in watching tv with us or sharing some funny videos on his iPad. He loves going out with us and just chatting as we go to his favourite stores. He loves picking out movies for us to watch and music for us to listen to.
He has broadened my horizons from the confines of his mind and his room. Mathew changed how we celebrate Christmas and how certain traditions just aren’t so important in the greater scheme of life. We learned what works for us as a family and that it is fine to be different from everyone else.
When he was younger and had no friends, I used to take his birthday off and he and I would go off and spend the day together if it was a school day. His teachers didn’t like that but I didn’t care. We would go shopping and do lunch and have a great day before celebrating dinner with his Dad and sister (she preferred to stay in school; no skipping for her!).
Later, when he moved on from school and found his friends at Key Industries, he would have a party with some of his closest friends. They would settle in with party food and drink plus whatever take out food Mathew wanted. They would play video games or watch movies. They were all in their element and they were happy.
I am so glad he had that time to call his own. Now he tires easily and is in pain all of the time. This year he and his sister decided to have a family celebration when she comes home at Easter. They miss each other more than they thought they would. I will just be very happy to have us all together for a little while.
Mathew is my first born. He was a beautiful baby and has grown into a beautiful person. The mind of an older child resides in his 5 foot 11 inch frame but for those who get to know him, he changes their world.
I named him Mathew, which means gift from God. At that time I still believed in God, which I do not anymore and haven’t for many years.
Mathew is a gift though. He is a gift to us and he is our beloved son.
I wish for many more years that we can shop and dine and let him enjoy his special day.