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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

"He shoots, he scores…."

While doing some casual reading this week I came across an article talking about the upcoming hockey season. I know it is a little early to be talking hockey with baseball season still in full swing and football right around the corner. I couldn’t help but relate to the following quote I found later from columnist Doug Larson:

Ice hockey is a form of disorderly conduct in which the score is kept.

That about sums up the life of a parent of a special needs child. Special needs or not we all have been mortified with the unexpected behaviors of our children when out in public. When you put a magnifying glass on the situation when your child has special needs the feelings can be bigger…Here an example of being under a huge magnifying glass. A few words from Hockey Hall of Fame goaltender Jacques Plante:

How would you like a job where, every time you make a mistake, a big red light goes on and 18,000 people boo?

We have been there…maybe not as many people, but the feeling has been the same. I am sure many of you can recall “an episode” from your own lives. I can remember several and I am sure if I asked Matthew’s siblings they could recall their own moments. The time Matthew threw his DVD player in the pool at a hotel. People looked at us horrified, wondering what the reaction from us would be. The time Matthew was inconsolable in a restaurant and I had to physically restrain him and carry him out with all eyes in the restaurant seemingly showing me the door. The countless times Matthew has needed to “regulate” his body temperature and remove all of his clothing…

Much like taking a piece of duct tape, placing on your arm and pulling it off. The more times you do it the  less sensitivity you have from the result, so it is with the “red light” moments in our lives.

This next quote is from the legendary Hall of Famer Wayne Gretzky when asked about his success:

Some people skate to the puck. I skate to where the puck is going to be.

I like this kind of thinking. It is being proactive instead of reactive in situations. I think that wives and mothers have this built-in…us men have to work at it a little more. We have had to adopt this way of life in our family as have countless other families who deal with a special needs person.

Matthew loves to watch hockey. Even with his vision impairment he will watch a game on television and even take part in watching it live. Some say it is the constant movement or maybe even the contrast of the white background of the ice with the darker objects over top.

I think it is a “guy thing” and he really can follow the puck.

Go ahead Matthew, light the lamp. We will be ready with the foghorn.