Acceptance

My first big personal change happened when I was about 7 years old.  No, I'm not kidding.  I was a different person after a particular afternoon when I was seven.

I was born with a neuromuscular disability called Spinal Muscular Atrophy (SMA) Type II.  I never walked, and all the muscles in my body were weakened by the disability, including the muscles that inflate the lungs.  As a result, I was prone to pneumonia, but my Mom and Dad didn't know what "prone to pneumonia" really meant until I actually got pneumonia four times when I was seven and in the second grade.

We were a Catholic family, but soon after my diagnosis with SMA my Dad stopped going to Mass.  To this day he won't say why.  I think he may believe in God, but has big issues with Him.  In contrast, my Mom became as religious as any Catholic could be short of joining a convent. 

After I was finally recovered from my fourth pneumonia in my seventh year of life, my Mom found out there was a Healing Mass about an hour from where I lived.  She took me out of school for an afternoon and told me to pray that I be completely healed.  Mom would later tell me she likes to pray for a lot more than she actually expects, just in case God is in a really generous mood that day.  Really what she was hoping was that I would stop getting pneumonia, but I didn't know that.  I though she wanted me to jump out of my wheelchair and walk. 

One fortunate aspect of Catholic prayer is that it is quite acceptable to pray in silence with ones eyes closed tight.  No one knows what you are really praying for in a Catholic church, so I prayed very hard not to walk. 

It was a damp, overcast day, and I remember the smell of wet overcoats and old people in the back of the church.  Mom carried me in because getting the wheelchair out of the trunk was not worth the trouble; there were some front steps that would have to be negotiated to get into church.  Mom sat me in a pew, and I couldn't see over peoples backs to know what was going on at the alter. Mom was kneeling beside me with her eyes closed, even at the parts of Mass were I knew you were supposed to sit or stand and listen or say group responses, like "Thanks be to God."  

I closed my eyes and prayed, too.  I opened my eyes only to check that she was still knealing with her eyes closed, and it seemed she always was.  My prayer went something like this:

"God, I know I'm not supposed to walk.  Please don't answer Mommy's prayer.  I am not supposed to walk.  You don't want me to walk, and I want what you want, so don't listen to Mommy.  I know she thinks it would be easier if I could walk and that we would be happy.  But it's not true.  My family won't be happy if I walk, not like they think they would be.  I am not supposed to walk, and you made me special.  You made me and want me to use the wheelchair, and its for a very good reason.  I know it is.  I don't know the reason but I know you want me to use a wheelchair.  Don't listen to Mommy.  She doesn't know what she's asking.  Don't listen to Mommy. "

After the priest finished the sermon, the old people--who always know what  comes next at Mass-- started forming a line in the aisle.  Mom picked me up.  "Am I old enough for this?" I asked, because I hadn't yet made my first communion and hoped that would get me out of the situation.  "You are, sweetie," said Mom.  And I prayed even harder with my eyes closed tight, trying to burry my face in Mom's shoulder. 

Then we got up to the priest, and he said, "for you Ma'am?"

"No, for her.  She's in a wheelchair."

"She doesn't seem to be in a wheelchair, but I'll take your word on it."

Mom turned me so I was facing out.  And the priest traced an X on my forhead with his greasy thumb.  Ick.  Why do they have to use Crisco, I thought. But I didn't feel different.  It hadn't worked.  It hadn't worked!

My mother carried be back to the pew.  "How are you doing?" she asked.

"The same," I said, almost triumphantly.  And then I realized that's not what I was supposed to say, but I didn't really know what I should say to Mom. "Maybe it takes time to work," I added, even though I knew it would not work no matter how long we waited.

"You're a cute kid. You know that?' she said with just a hint of disappointment as she put her arm over my shoulder.  There was always a hint of disappointment or sadness whenever she complimented me, like she was thinking everything would be even better if I could just walk.

I turned to burry my face in her chest.  I knew I was right because God obviously had agreed with me, but I didn't know how to tell Mom that God disagreed with her.  I didn't know how to tell her that I disagreed with her, too.  I wanted to take away her sadness, but I didn't know how.

That was the day I had my first grown-up victory of sorts; I beat my own Mom in a prayer contest.  I was relieved that I didn't have to walk and go on the news for having had a miracle.  I was relieved I wouldn't have to go to regular school or go on camping trips for Brownies.  I was relieved that Dad wouldn't have to go to church because of the miracle and I wouldn't have to go to a whole bunch of hospitals to show I had a miracle.  Most of all, I was glad that God said it was fine to stay in the wheelchair, that there was a reason for it, that I didn't have to change.

For the first time in my life, though, I didn't know how to tell Mom what I thought or how I felt. Even years later, when my Mom knows all about this story and laughs when she hears how I prayed, the space between us that began on that day is still not closed. She tells me that her prayer was answered, too, and we both won.  She says I was healed with the gift of acceptance of my disability on that day.  I wish Mom had been healed that way, too.