She was taken in to have her diaper changed.
Lindsay picked her up from her wheelchair while Ava and Henry looked on from the small picnic table where they were eating their dinner.
An ordinary scene around the Casten household. Nothing new. Nothing fancy. Just Ella being taken in to have her diaper changed.
Henry looked at me. I returned the glance and was about to tell him to finish his dinner when he spoke, "Why does SMA make you not walk?"
My head tilted a bit at his question and I said, "What?" as my eyes squinted a bit.
He repeated himself with a bit more conviction, "Why does SMA make you not walk?"
Ava turned from focusing on her plate to focusing on me.
Henry stared at me, waiting for my answer. I had to answer him. He wanted to know. He's almost four years old and he wanted to know why SMA makes a person not be able to walk.
I know the answer to this question. I could probably go on and on about the mechanism SMA employs to rob its victims of the ability to walk among other "taken-for-granted" abilities many enjoy.
I knew I couldn't go into neurons, and signals, and atrophy. It wouldn't have worked for Henry. Sure, he might've said, "Oh" and left it at that but it wouldn't have truly satisfied his curiosity.
I looked at him and spoke, "It makes it so your muscles don't work."
"Your muscles?" he inquired.
"Yes." I responded. "Your muscles make you move. And SMA makes your muscles not work."
Ava chimed in and said, "The brain doesn't work."
Henry looked at Ava the same way I looked at Henry when he first asked the question. He turned and asked of me, "Where's your brain?"
I told him that your brain is in your head as I pointed to my head. I then continued, "Ella's brain works just fine. Her muscles don't work."
Ava took the liberty of demonstrating for Henry. She tilted her head waaay back and began talking, "Sometime when Ella puts her head back like this, she can't get it back up. Watch what I do, Henry. I can move my head back up. Ella can't."
Henry mimicked Ava and seemed to understand the limitations placed upon his sister by SMA.
The questions are coming.
The answers are complicated.
The feelings are stirred.
The emotions are tested.
The life of a parent with a child with a progressive, degenerative, terminal disease pounds itself on each member of the family; it effects each person in such a personal, indescribable way.
Lindsay and I have a heavy-laden responsibility to ourselves, to each other, to Ella, and to Ava and Henry. A responsibility that we never imagined would present itself to us. A responsibility that will determine much of how each of them lives their life in the midst of what life brings to them. They will understand more about compassion and understanding; patience and even-temperament; the human body and its frailties than many of their peers.
The questions are being asked.
The answers must be given.
I can only pray that as I continue, as we continue, to answer the questions presented by our children surrounding a topic that no child should have to be discussing in the first place, that our guidance, our explanations, our answers to the innocent children will suffice to satisfy their curiosity, bringing an understanding of how this world works.
