I recently met someone who completely rocked my perspective on (dis)ability. Joel’s new visual therapist has lived her entire life without sight. She entered our home with her guide dog, a dulcimer, and a bag full of jingly instruments. Joel truly loves the world, but his rapturous adoration of the grandmotherly Miss P was immediate. A certified music therapist with a delightful singing voice, she held Joel and could feel his weight shift and head turn as he played with her magical shiny tambourine. He reached for her face and babbled softly as he does for only a select few people. Based on his diagnosis of Cortical Visual Impairment, Joel is making good progress on his visual focus, and he is captivated by the direct addition of music to playtime. Miss P felt his curls, snuggled him, and murmured repeatedly about his cuteness and wonderful work.
I’ve been reflecting on all of the truly phenomenal people we have already met since Joel came along. His awesome early intervention team just added a speech therapist to their lineup, and we have also begun working with an OT and a PT through Children’s Hospital. Our village is growing, and we are grateful for each member. Then there are the mamas (whether 10 minutes away or on the other side of the world) who have given us oceans of hope and endless advice and virtual hugs! The occurrence of pachygyria is apparently somewhere around 1 in 80,000-100,000. Finding a support group has (once again) dramatically changed our lives.
This week I also read an article, “Finding the Words to Talk About Disability”, by Amy Julia Becker and have started becoming more aware of the conversations I’m having with big brother Luke. I’m hopeful both of our boys will form true friendships with those that are different than them. Then I saw Oscar Pistorius race in the Olympics. How wonderful that Joel lives in this world, where what was once impossible is now fact.
Joel’s gold medal performance this past week included a new PR in independent sitting…10 seconds! He’s also dazzled us with his puff pickup skills. Coach Luke implemented a new cross training ball rolling technique, and Joel continues to improve his arm strength in pulling and pushing himself. Joel was just fitted for foot braces (SMOs) called SureSteps that will help him with standing and core strengthening. We also received the final results from Joel’s muscle biopsy done in April, and the skin cells showed normal tissue. Woo hoo for a “typical” test result!
Many thanks to each of you for your support! John and I are now more aware than ever how lucky we are to have the friends and family that we do. Joel is a treasure, and you don’t even have to be able to “see” to know he is absolutely amazing.