"My swim shoes are too small, Daddy. I don't want to wear them today."
"Look, I can lie down all by myself!"
"I don't know if I really want a 'Happy Meal' toy."
"Mommy, can you play Taylor Swift?"
A few of the quotes by Ella. She's growing...she's beginning to lose the "baby-face" and take on the beauty she inherited from her mother. Her eyes are beginning to tell the story of her life and her smile is reflecting the joy she feels through the love that surrounds her. Her sense of humor is shyly poking its funny little head from under the the veil that hid it as she delights in "big-kid" humor with Ava and Henry.
Along with her mental growth she brings a physical growth as well. She is becoming heavier while at the same time she continues to lose any ability she once had to "help" as we carry her. We've adjusted several positioning techniques in order to accommodate for change...some positions need changes more frequently than others.
Kids with SMA type 2 are generally living longer lives these days. This means we will be traversing into territory less travelled than in the past. Up until this point there's been ample experiences from those who came before us that we could draw upon for ideas, help, and support. As Ella grows older we will have a host of new challenges to face. We will have to be resourceful, creative, persistent, and forgiving. I say forgiving for mistakes will be made yet we cannot let those mistakes rest on our shoulders for too long...we have to be able to forgive ourselves for them and move on.
I watched Ella today at Aqua-Therapy. She was with a fairly new assistant therapist. They've worked together only a short time. They are still getting to know one another. Every so often I could hear parts of their conversations...
"Ha, you're so funny, Ella, you crack me up!" the therapist said.
"No, no, no...I don't wanna get out; I want to stay." said Ella when it was time to leave.
"What was your name, again?" asked Ella.
But the unspoken words were what captivated my attention. They would laugh and look into each others eyes...study each others faces, and dance the dance that makes for a trusted bond.
She's growing, she's becoming more of who God intended for her to be...and Lindsay and I get to witness the miracle of the human spirit as it expresses itself through actions, emotions, and relationships.
