Hello,
I am writing to give you a little peek into my life as a mother with children with special needs. Both my sons were diagnosed with Morquio Syndrome: a rare form of dwarfism that is degenerative and progressive. There are a lot of health issues associated with their disease and the boys have had to deal with several surgeries and other medical treatments.
Lucas has always known that he is different and he feels that he is perfect just the way he is. He is always looking out for his little brother, Zane. Zane is my baby and my little comedian.
I would like to share a story with you about a fellow I met a couple of years ago, when I was talking at a local hockey game about how Easter Seals had helped out my family. He made the comment the he wished that there was an organization or a government benefit plan that would help him with his expenses. He said, “You don’t see people handing me money to pay for my kids’ hockey equipment and registration.” I explained that the only difference I could see in our situations was “choice.”
I did not make the decision to have children born with a physical disability. It was not by choice that I had to renovate my home to make it accessible for my boys. It was not by choice that I had to purchase scooters, wheelchairs, walkers, etc. I did not choose to have sons that could never even play hockey. But they are mine and I love them more than life itself. He, on the other hand, always had a choice. I told him he could always choose not to enrol his sons in hockey. He could choose to buy the best equipment on the market so they could play a sport. If he woke up one morning and found out that he was a single parent about to raise 4 children alone, he could always choose not to travel to hockey games and just stay home. My life didn’t give me that same option. My sons’ equipment are their legs. Their scooters are their independence and their mobility. The miles I travel for doctors appointments are a necessity for my sons’ health. I was never given a choice.
Although I would not change a thing in my life, I could never do what I do without outside supports. I explained, I have no choice to pull my sons out of their disease if my lifestyle can’t handle it; you on the other hand always have a choice to pull your sons out of hockey if you need to. I left him speechless, but later, he called and apologized. He said that he had never really looked at it like that. Before, all he said he saw was parents getting all this stuff. He never truly realized how hard it must have been to give up a dream when your child is diagnosed, make new dreams for them, and then try to manage it. He says he donates regularly now to Easter Seals and, today, I am glad to say I call him a friend.
We are so grateful to have financial assistance from Easter Seals. Without support from people like you, many families like mine would never be able to give their children the opportunities they need. Thank you from the bottom of my heart!
Yours sincerely,
Debbie
Mother of Easter Seals kids, Lucas and Zane