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45 days. Two hospitals. Three ambulance rides. Three collapsed lungs. Four bronchoscopies. Two intubations. One tracheostomy. A bowel infection and countless tube insertions, medicine alterations, litres and litres of mucus and saliva suctioned. And Deane is finally out of the Intensive Care Unit. What has this arduous, emotional and exhausting journey taught us? As much … Continue reading
There’s a lot of time spent doing nothing in hospitals. Don’t get me wrong, I’ll take that any day over hurried action. In a hospital, that usually means something is going very wrong. Obviously, the staff is not doing nothing, but as a support person you spend a lot of time waiting. Waiting for doctors … Continue reading
Deane was supposed to be at camp this week, hanging with his friends, chatting with the cute counsellors. He was going to be a junior “nurse’ this session. Instead, he is intubated and sedated in an out-of-town hospital. Five days ago, Deane woke up late at the cottage, groggy and definitely not himself. Checking his … Continue reading
A non sequitur? Bear with me. It’s not a secret that making friends is a challenge for most people with disabilities. This is especially true for those with communication issues. Whether it is discrimination, stigma, a lack of understanding or just a simple awkwardness, many people don’t see the disabled as people with whom they … Continue reading
Every parent knows how debilitating it is when you have a newborn who wakes you up multiple times every night. You find yourself begging the baby to give you just a bit more sleep. As the weeks wear on, you stumble around numb and incoherent. Now imagine doing that for more than 20 years. Our … Continue reading
Deane is my brother. He is physically and developmentally disabled and he is about to lose most of the support services that help him live a healthy, engaged life. Why? Because he will soon age out of the school system. That’s right. When Deane and thousands of disabled young people like him reach the age … Continue reading
I couldn’t remember the address. Deane and I stopped so I could check my phone for where we were going. As I looked up, I noticed we had stopped beside three very large, very tough looking guys who were standing in front of a male strip club. I decided to walk and dial. We walked … Continue reading
Deane loves dogs. He reaches over the edge of his wheelchair tray to pet any dog that walks by. He calls out to sit on the floor to try to snuggle up beside them. Years ago he became inconsolably upset after reading a Curious George book in which the monkey gets a dog. He wanted … Continue reading
“If you could do anything tomorrow, what would you do?” “Skiing,” said the mechanical voice of my son’s voice output program. “If you won the lottery, what would you buy?” Deane pressed “dog.” “If you were stranded on a desert island, what would you take?” “A guitar and drum. A TV (to watch Raptors’ games). … Continue reading
It is very strange to be sitting here at 3:30. For 14 ½ years, 3:30 has been time to drop what I was doing and meet the school bus. Since my son was in preschool, he has taken a school-sanctioned bus twice a day and my day has been regulated by that bus. The arrival … Continue reading
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