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The value of playing

We would go full of optimism and pride at how well Deane was doing, ready to list his accomplishments since our last visit. I left every time and dissolved into sobbing tears. Deane was born two months premature and for the first year of his life was followed by the preemie clinic at the hospital. … Continue reading

The weight crisis in my house

The dietitian is on my case. He’s unhappy about how much my son weighs. In a country where childhood obesity is at epidemic levels, Deane is underweight. He is 14 but will soon be surpassed by his nine-year-old sister in both height and weight. Some of this might be genetic – I’m not exactly a giant … Continue reading

Reality check

“You can’t be strong every day.” This from a trainer who had been putting a group of 40-something women through their paces for 90 minutes. Why is my instinct to disagree? Why do I think it’s impractical to contemplate not being strong if you have kids – especially a special needs child? Kids are demanding … Continue reading

Explaining the love of music

I wish I had had a camera. From my seat, the upright pipe organ was framed by my mother’s profile on the left and Deane’s on the right. Both their faces shone with that kind of eye-sparkle, inner-warmth glow. It is one of Deane’s rituals after the service to half walk, half dance across the … Continue reading

When there’s no getting around it

I was standing around with other parents – mostly dads because that’s what you do at hockey rinks – and the kids were staring. When they’re this age, they usually don’t say anything, but their gazes rested too long to be polite. The wheelchair attracts attention. Sometimes it is the iPod we have mounted on … Continue reading

A different perspective

“What about Christmas?” That was the immediate reaction from my nine-year-old daughter when I announced at the dinner table that Deane was going to have his hip surgery in mid-December. “Does that mean were not going to have our Christmas party?” Well… My husband and I went into reassurance mode. We will work it out. … Continue reading

Label my child – if you must

When I talk to someone I’ve just met about Deane, I don’t use the phrase cerebral palsy. In fact, unless it is important, I don’t even mention that he is disabled. This has led to some awkward situations, but I’m willing to risk that to avoid labelling Deane. I’m afraid that if I say “My … Continue reading

Our most important gift

The U.S. TV anchorwoman who went on air to respond to an email she received criticizing her weight gone viral online. It has received a phenomenal amount of media coverage. But I thought it was worth adding a bit more. I’m not interested in debating whether the anchor, Jennifer Livingston, is obese. She admits that on a … Continue reading

Life’s not fair

I haven’t done it in years. Different events trigger it, but in the end it is always the same. I’m lying on my bed with my fists clenched, yelling through my tears. “Why? I don’t understand! Why me? Why does this have to happen? It’s not fair!” I pound the bed with my fists. I … Continue reading

What he’s trying to say – Part 3

I sat in a corner of my son’s classroom with a knot growing in my stomach. I’ve been through this before. I was there with the speech-language pathologist, an OT who specializes in communication systems and two of Deane’s educational assistants. The purpose of the meeting was to show the EAs how to connect Deane’s … Continue reading

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