Routine is big in our world because William relies on it. Medication administration, meals, sleep, down time, school time, physio time, pool time and standing frame time along with appointments and normal home duties are all pretty well scheduled. Within the routine, there are special moments every day that make my day. The morning greeting. […]
William has used an eye gaze since he was about 5 years old. Speech therapy itself started when William was very young. We used sign language, we read books, we were always talking to him, singing and listening to music, we would mimic his noises so he could see our mouths move while making different
William’s world is all-consuming. For 11 years it’s basically been my full-time gig. Actually, I think it will always be my full-time gig but I’m realizing that I can have other things in my life that provide personal reward and confidence that aren’t dependant on anyone else. I’ve written about my journey with fitness and
This 4 letter word has more power than I’d like to admit. It rules our world! William’s tone is relentless. It fluctuates from hour to hour despite medications and well-planned routines. Everything impacts his tone – excitement, pain, hunger or him being too full, boredom, frustration, fatigue or the water being too hot or too
William is smart! Kernicterus impacts the part of the brain called the Basal Ganglia which mostly impacts movement. We have always been told that his intellect is likely intact. His learning is delayed because he relies solely on memory but he has the ability to learn and he knows what’s up. So we approach our
Life has been crazy. I’ve wrestled with sharing my personal story publicly, I question peoples’ interest in my story, my time has been scarce and I’ve been trying to meet the demands of parenthood and personal priorities the best I can. Lately, I’ve been waking up early and my mind rolls through all of the
After finding out that the van we had ordered likely wasn’t coming quickly, if at all, we went on a hunt for yet another option. It was a Friday when I was told and that evening was spent scouring the world wide web for something that would accommodate our boy. NOTHING was posted for sale
As I was waiting on my delayed flight home from Toronto, I was feeling very excited to get home to see my kids. While boarding the plane, I recognized a gentleman from our community. We often see him walking with his care aid in our neighbourhood. He was seated with his care aid who I
Travel is something that currently doesn’t really exist for William, but it does exist for the rest of us. We don’t travel a lot and I wouldn’t call our travel “vacation.” Our travel is limited to travelling for work and travelling for the girls’ sports. When William was small, we did take him on holiday
Lately things have been a rollercoaster. I find myself inspired to write but I find myself second guessing the realities of the content. I look into my little boy’s eyes and my heart aches for him, even on a ‘good day.’ Do I really want to share the hard stuff? I’m hoping that my experience