As I prepare to write my thoughts, I read Karen’s blog from earlier and I see a reoccurring theme developing – falls. The weather has now reached the 60 degree mark in the Pacific Northwest and the sun has actually broke through the Seattle clouds. I welcome the warm weather because the boys need to run around and stretch their legs. Still, Larkin prefers to sit in front of the Wii but mention a walk along the trail, he’s racing to get his shoes on. No surprise that Erin wants to run around outside too. We did have another stumble this week. Erin and I were outside playing with an oversize play ball. After practicing throwing and catching, she wanted to kick the ball. Sure enough her foot slipped on the ball and she went flying over the ball. Her forehead once again took the brunt of the fall. Even with the helmet on, she managed to get a nice scrape and goose-egg shaped bump over her left eye. I did hold off on the Prednisone this time around. Maybe I am wrong in that decision but she’s been on it practically every other week that I am worried she’ll get sick. She has been taking her Naproxen which helps with the swelling and pain. Luckily this boo-boo has started healing quite nicely.
Her sleep schedule has been off the last couple of days. As I am writing this, it’s nearly 12:10 AM and Erin is sitting next to me wide awake. She had a very busy weekend. Yesterday she played with a couple of new friends. She was constantly in and out of the house; up and down the stairs all awhile enjoying our guests. Today Brennan had a birthday party to attend at the Pacific Science Center. That’s a great place for Erin! They have a little tot play area inside that she can maneuver (with help of course).
The highlight of her day was the butterfly exhibit. Erin could hardly contain her excitement walking through the butterflies. Butterflies hold special meaning to lots of people. Prior to Erin’s diagnosis, I honestly didn’t understand with the fascination of butterflies. They are beautiful creatures but never had I understand the symbolism. One of the first documents I read about Fibrodysplasia Ossificans Progressiva was a book whose cover had a beautiful picture of a butterfly. Then I read the artist’s reasoning for the butterfly symbol. Butterflies now have a prevalent meaning in our family’s lives, and we will always have butterflies present in our house.
The artist’s notes regarding the butterfly on the cover. Taken from www.ifopa.org….
I had a number of reasons for picking this title for my butterfly painting. The butterfly to me is a symbol of hope and new beginnings. It is a subject that everyone can relate to and everyone has seen a butterfly. Showing the cycle of the Monarch butterfly tells of the changes in life which also occur with FOP.
I picked the detailed work of a butterfly in watercolor to show what can be done after my adapting to FOP. I was a right-handed painter until two years ago when my right elbow locked, forcing me to now do most of my painting with my left hand. This is the first time I have painted an open-winged monarch butterfly using my left hand. I consider this one of the more difficult butterflies to paint. I also wanted to show with my painting that people with FOP can have productive lives.
It’s important to have a special interest such as painting is to me. I wanted to mention the wonderful time my parents and I had at the symposium in 1991. It was great meeting new friends and hearing more about FOP. It is a trip I’ll never forget. I’m sure the 1995 symposium will be just as successful and my best wishes to everyone.
Jack B. Sholund