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disabled families

This tag is associated with 104 posts

Neither snow nor cold ….

A Message arrived recently in my inbox about changes to the Canadian postal system. It was urging me to sign a petition against the proposed elimination of door-to-door mail delivery. The plan is to move those who still get individual delivery to a “super box” – similar to mail slots in an apartment – somewhere … Continue reading

It’s more than just power

“We can do it,” said my unflappable 10-year-old daughter. It was hour 30 of the blackout caused by the southern Ontario ice storm and the four of us had slept together on the third floor. My husband, who had to go to work, asked if I wanted him to carry Deane downstairs. My husband had … Continue reading

Why am I doing this?

Why on the weekend before Christmas have I barely begun my shopping? Because I spent most of last week not in stores but stuck at my computer filling out forms. One was already late: our application for Deane’s ski “lessons.” A year after our winter-that-wasn’t, we are going to put Deane’s reconstructed hip to the … Continue reading

It’s official

I have to admit I was feeling pretty positive. This was one appointment I wasn’t worried about. Yesterday was our follow up visit to the feeding clinic. Five months ago, they were the ones who had put Deane on the track to his g-tube. Although I had been very hesitant, I think Deane adapted first … Continue reading

Building Limitless confidence

As she stood at the podium in front of a packed audience, she confessed she wasn’t sure she could do this. But once she started, Stella D’Silva was fine. After all, it was a story she knew in intimate detail. It was about her child. It was a success story. With her son Alex at her … Continue reading

Inner spark

        “…if you fuel a child’s innate spark,it will always point the way to far greater heights than you could ever have imagined.”   This line is part of the conclusion of The Spark: A Mother’s Story of Nurturing Genius written by Kristine Barnett about her autistic son, Jake. The book, which … Continue reading

Admitting when you’re not right

OK, so they were right. The doctors, dietitians, OTs and speech paths who said Deane would be better off with a g-tube were right. The persistent cough that woke him – and us – frequently during the night has mostly disappeared. The amount of suctioning he needs is a fraction of what it was. He … Continue reading

Defining dignity

Imagine if you were losing your strength, becoming paralyzed, had trouble swallowing, needed to be carried from bathroom to bed, were unable to carry out normal bodily functions and were unable to control one’s own life. These conditions describe my son. It is not what I focus on, but it is the reality of his … Continue reading

The joys of boredom

We were so bored we were going stir crazy. Don’t get me wrong – being bored in a hospital is a good thing. It means nothing medically “interesting” is going on. Nurses and doctors came and went, checking on us, but it was all talk, no prodding, poking, or worse. We were so uninteresting, they … Continue reading

Surgery makes me sick

Deane was in a great mood this morning. I don’t think I’ve ever seen him laugh and smile so much in a hospital. He has certainly never been so happy while waiting for surgery.  He was goofing around with Dad, demanding hugs, refusing to pose for pictures and pretending he was going back to sleep. … Continue reading