all the feelings I have for her in my heart
Every time that I come near her
I just lose my nerve as I've done from the start
Every little thing she does is magic
Everything she do just turns me on
Even though my life before was tragic
Now I know my love for her goes on
The other day I was tidying up the basement and came across a book titled, Don't Sweat the Small Stuff...and it's all small stuff and it got me thinking about our last visit to CHOP. The philosopher in me gets the idea that you shouldn't worry about the little things in life because somehow life continues on past the day to day woes. To be honest, I've preached the same story to my kids over and over again when they would come home with concerns that those of use who are "older and wiser" have overcome without bumps or bruises. Just when I thought I had it all figured out, I learned at CHOP that every little thing Maddie does is magic.
Most of my concerns about the girls' Pompe condition have been about their major muscle groups. It seemed obvious that their leg and arm muscles should be the priority as they deal with the obvious things... standing, lifting, and carrying. Over time I came to appreciate the importance of the muscles in their chests and their relation to breathing especially as I watched them struggle through one pulmonary function test after another. I never thought about the little muscles in your hands that allow me to type this story, text on my phone, or open a jar of salsa (Yes, I love salsa!). However, as I listened to Maddie explain her struggles to her Occupational Therapist my eyes were opened.
It's funny how we take for granted many of the things our body does on a daily basis. From grabbing that first cup of coffee in the morning, to paging through the newspaper, to drumming away on the steering wheel, to typing that first email, we use our fingers. We use them to do just about everything and usually don't think twice about it. For me, I don't think about them until I get the smallest cut requiring a band aid and I wait for the day when they are free again. I never thought a thing called Pompe could impact their ability.
I've observed more than a few Muscular Dystrophy kids with weakness since our girls were diagnosed, but one sticks out in my mind. She was a teenager at the MDA Muscle Summit in Camden, NJ who the girls met right after the day's events were complete. When she introduced herself to me with a sweet hello, I reached down for her hand, not thinking twice about it. I was taught early that looking someone in the eye and shaking their hand was the proper thing to do, but in this case it wasn't. As I picked up her limp hand, she smiled and said her hand just wasn't too strong anymore. I felt about 2 feet tall and apologized, but to her it was OK because it had happened so many times before.
Since then I kind of forgot about the event and focused all my energy on making sure the girls were on the right track. Treatment after treatment went well and CHOP appointment after CHOP appointment showed stabilization or even improvement. Then, during last month's appointment Maddie mentioned her fingers. She explained to the OT that sometimes she struggles to button the buttons on her shirts and to open water bottles. Emma then chimed in to say she is challenged with typing sometimes especially when her fingers get lazy and rest on the keyboard when she wants them to move on. Funny, they never complained and I never really noticed. That's their way, I thought, never complaining, just adjusting.
The OT did a great job listening to them and giving them some great advice such as slightly cutting the button holes or resetting the keyboard controls. After the practical advice he offered something even more important, understanding. He said he understood their frustration and promised to work with them to improve it. He also explained that sometimes he sees people who are really strong, but have weak hands and other times he sees people who are quite weak, but whose hands work well. While he understood their concerns, he asked the girls to remember that while their bodies are weak, they could still do the majority of what they wanted with their little hands. That was not only important, it was magic.
Tomorrow morning when I wake up, grab that first cup of coffee, button that dress shirt and type away that first email, I've promised myself not to sweat the small stuff, but to think about Maddie Jane. I will, because I know that no matter where I am, she will be there fighting on, and because I know that no matter what life brings her, to me...
Every little thing she does is magic!
Credit to: The Police, "Every Little Thing She Does Is Magic"