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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
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
“…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
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
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
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
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
A friend stopped me on the street. The daughter of her friend had been admitted to the hospital with stroke-like symptoms. When the nurse asked the girl to walk across the examination room the six-year-old couldn’t do it without stumbling. Did I have any advice? Despite all the planned – and unplanned – time I’ve … Continue reading
“You don’t know how to do this, so I’ll help you,” the voice said to me over the phone. “I’m helping you because you’ve never done this, dear. Next year, you’ll start earlier.” OK, I admit my pride bristled at the tone and the assumption that I didn’t know what I was doing. Unfortunately, the … Continue reading
I celebrated an anniversary last week. With the end of summer and the start of school, the actual date passed me by. It’s been a year since I started writing this blog. When I began writing, I wasn’t sure where this was going to lead me. I did it because, after years writing about politics, … Continue reading
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