Daily Archives: February 19, 2011

My parents’ book is better (2/8/2005)

February is the NMF’s “Have a Heart for Marfan” month (don’t ask me why everybody has to choose February as their awareness month; the fact that it’s heart disease month would lead me to put Marfan someplace else, anyway). . . .
So the NMF has added an online shopping cart system to their website. Previously, to order materials, you had to just print out the form or call.
In 1984, my parents wrote a book called How John Was Unique, a children’s story to help springboard families’ discussions of the hard facts of Marfan syndrome: the pros and the cons, etc. It was published by the NMF (US) as a coloring book, both to save money and to make it more interactive.
Well, somewhere along the line, the Canadian Marfan Foundation as put out a book called A Very Special Mouse.
Last week, among other items, I ordered a copy of the mouse book and “my book” (also 2 t-shirts and some informational materials to give to people).
They came on Saturday, and, without bias, I can say that my parents’ book is much better.
The mouse book basically says, “There once was a family of mice. One mouse was taller and slower than his brothers and sisters. He couldn’t see very well, either. One day he went to the doctor, and the doctor said he had something called Marfan syndrome. That’s why he was so tired all the time, so tall and he had to wear glasses. We’ll tell you more when you’re older.”
It’s almost like they wanted an alternative to my parents’ book for those parents who like to stick their heads in the sand.

Why not talk to your kids honestly and openly. My parents tell the story of when I was something like 5 or 6 and I demanded total honesty about my health issues, because “It’s my life.”

So I sat down with my little hyperactive 3-year-old and tried to read her the book. She was about as impressed as possible, for a child of the computer and video camera era, that there was this little book written by Nana & Papa about daddy, and that the drawing of the boy in the book was daddy.
But when I got to the core parts, about the hospitals and tests and glasses and such, I was able to say, “Remember when you had this test done?”
And she said, “Yeah.”
And I said, “Well, this is about when I had it done when I was little.”
“Oh!” she said with a smile.

Now, if only I could get her to wear her glasses. . . . .

In the vein of “Only Nixon could go to China . . . “

OK, so it was a nice day, and I suggested we go to the park. Mary had scheduled an appointment with our PCP’s office that’s open on Saturdays, and we found the nearest park to that office.

It wasn’t very handicapped accessible, and, in spite of my best efforts, I ended up getting the wheelchair stuck in the sand. Then the kids needed to go potty. I called the police for help, and Mary drove the kids off to find a restroom. This African American gentleman was walking down the road wearing a football jersey with a rosary around his neck.

He kind of waved, and Mary pulled the van up, and he said he needed a ride to church. Mary said, “I don’t want to say no, but I need to get my kids to the restroom, and my husband’s wheelchair is stuck down there.”
So he came down the hill and started helping. Then the police arrived, and the one officer’s brother uses a wheelchair, so he was used to wheelchairs getting stuck, and the three of them got it out and back onto the grass for me.

So we drove the fellow to his church. Then Mary asked if she could take the kids to the restroom there, and he invited us to join their Saturday evening service.

I was hoping that somehow, as he was giving us directions through Augusta, he was going to take us to Most Holy Trinity.

So we end up at this little Pentecostal ecclesial community, and he invites us again to join his service. We of course both hesitated.

I was going to say, “We have to get to our own Saturday service,” thinking there was still time to get to confession, but it was already 5:30, and I knew we weren’t going to Mass, so I didn’t want to lie.

I decided that God wanted something to come from this, and I didn’t want to scandalize the young man, so I went in to be polite, but the kids were balking, so Mary watched them play outside while I went in. I felt like I was in a Flannery O’Connor story.

So I was sitting there in the pentecostal church, saying the rosary and observing how their service was basically make-shift Sacraments:
“Anyone with something on their hearts they need forgiven, please come forward.”
“Anyone with sickness, come forward and receive the oil.”
So this fellow asks if I’d like them to pray for me. I said, “I could go either way. Up to you guys.”
So he asked me to come forward. I came forward. The woman put her hand on my head and prayed, “Lord, please heal this man from head to toe.” I prayed, “Lord, please stop this woman from pushing my head and breaking my neck.”
Then she stopped, took her hand off my head, and got really quiet and serious. She looked me in the eyes, and said, softly, “The Lord just spoke to me and said He wants you to know He’s very pleased with you.”

Then she went back to hooting and hollering. I went back to the back of the church and said the Office, then I came out.
The original fellow and the guy who led me up both followed me out and talked to me.
The second fellow said, “Brother John, may I ask you for a favor?”
I said, “Sure.”
“Could you give me a hug?”
The original fellow was talking to someone else about living providentially and had some great things to say about prayer. He recommended a formula very similar to what Neal Lozano talks about in _Resisting the Devil_, embracing the power of Christ’s name. He said it’s something he’s just been trying this week, and gave discovering us as an example of those prayers, because he had been trying to get to church, and no one would give him a ride, and right after he surrendered it to the Lord was when he found us.
Then he said, “I really think you folks are special and the Lord has great plans for you.”
Another person came out and walked up to me and said, “It looked like you received a word when she prayed over you. Did you?”
And I said I had.

I did tell them we were Catholic, and I talked to them about being a Carmelite and stuff.

Then Mary went in (I don’t know how long the whole thing lasts, but people were kind of coming and going, or coming outside to talk to each other).

Her experience wasn’t quite as profound as mine, but it was definitely an interesting evening, and it made me feel much better about missing confession two weeks in a row.