Challenge Accepted!

For William, his social interactions are primarily with therapists, his care team and our family. Occasionally, the girls will have friends over and he gets that little bit of interaction but it’s hard to find…

As the school year comes to an end, my sights shift to the crazy schedule of summer. William’s schedule basically stays the same but blending it with the schedules of everyone else in our home…

When people see William or meet our family there is always one question that quickly follows. Actually, it often comes out as a statement. “How do you do it all?” or “I don’t know how…

There has been a lot of chatter in our household lately as the school year comes to an end. My oldest, Mimi Pie is finishing up grade 11. She’s been very diligent with her studies…

I have written two blogs leading up to this day. The process began with the initial consultation and was followed by months of planning and advocating for the procedure and this day to happen. You…

This is a follow up blog to #32 – Nerve Freezing. After that initial consultation appointment, the actual procedure needed to be scheduled and planned. During that initial consultation I was very clear about William’s…

Nerve Freezing…also known as Cryoneurotomy Going to appointments has become second nature to me. I’m used to all the questions, I go in prepared with my own questions and William handles it all pretty well…

Our Current Team In my last blog I touched on hiring and saying goodbye and what that process looks and feels like. But the daily emotions of gratitude, acceptance, love, overwhelm (in a good way),…

Our team is one of the most important aspects of our family’s life. I’ve written about our team before but there have been some changes so I thought it was time to share a bit…

Bear and I will be the first to admit that running our world requires help. In order to function we rely on our five care staff for William but beyond that there is a team…

Before William was born, we lost our daughter Hanna and were told that couples who experience the loss of a child often struggle to stay together. Then William was born and we were faced with…

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…

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,…

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…

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…

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…

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…

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…