Our sweet girl, Florence Marigold Evanow, went to be with her Jesus on May 9th 2015 in the late afternoon. We held her in our arms as she passed away at Canuck Place. She was
“To love someone fiercely, to believe in something with your whole heart, to celebrate a fleeting moment in time, to fully engage in a life that doesn’t come with guarantees – these are risks that
When we look for apps for Florence, we look for simple, clean and colourful games. She has trouble with her gross motor and fine motor skills, but intellectually, she doesn’t struggle. There are a lot
It was nearly Thanksgiving, and the grocery store was chalk full of people buying canned pumpkin, fresh cranberries and bags of brussels sprouts. I was in Whole Foods, gathering goods on a lazy Saturday. Jay
The days are long right now. I feel it wearing on me. It. It. I hate that this somehow dictates our life, that something terrible tells us, tells Florence what she can’t do. It used to
cardboard boxes that used to carry sterile water and formula. suction, food and a weird new seating device we are borrowing. it’s a giant bean bag that you can suck the air out of. problem
Today I measured Florence and realized she would nearly reach my hip if she could stand. She’s 3 inches short of 3 feet! It made me smile, and yes, it made me sad. I wish
It’s 5 minute Friday: write for 5 minutes flat and straight, no going back and editing, just write. It’s good exercise! I have been excited all week for this Friday’s prompt. I came to the
to the other parents of children with SMA…this is my opinion, this is my story. Imagine if your tiny baby appeared to be born healthy, and suddenly you received a diagnosis so terrible that you
