Years ago, a friend of mine told me to actually block off ‘blank space’ time in my calendar. This blank space is an opportunity for our family to do whatever we feel like doing. This time could be used for individual activities or for group activities, but the goal with this time was to help […]
I’ve mentioned in the past that Bear and I make every effort to allow our girls to just enjoy William as their little brother. We try very hard not to put any of the heavy stuff on them. They are free to build whatever relationship they want with him. So, until today, their relationships have
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 opportunities for him to engage with other kids his age or build friendships. When he attends art class or cooking
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 is the annual challenge. This year, the oldest got herself a full-time job and still doesn’t drive so that means
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 you do it!” Yup, we live a bit of an unconventional life and William is at the heart of it
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 and has been preparing for her graduating year since grade 8. Each year she watches the grade 12’s get ready
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 can read more about the initial stages in blogs 32 and 33. In the week leading up to the procedure,
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 airway issues and it was more than evident that William can’t handle the pain. It was discussed at length that
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 for the most part. Recently, we had what I thought was a consultation appointment. In my experience to date, a
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), fear, reality, maybe a bit of shame, little embarrassment, pride and excitement are just the tip of the iceberg when