Take your daughter to church day

Historically, attending church with Maggie has been an adventure. Her appearance, her wheelchair and or her behavior, are a constant source of fascination, and wonder to all the other congregants. When she was little, she was in my arms, not in a wheelchair, but she looked very different from other babies, so she stood out even then. Things have not changed that much in 15 years, even though we have attended three different churches.

We started out at church #1, where the boys first attended school. The family service was at 8:45 AM, which is E A R L Y when you are getting three little kids ready on a Sunday morning. We inevitably came in about 5 minutes late. Others would come in far later than we did, but everyone always watched everything we did. One day the priest commented about us from the altar. Nice. That was in our waning days there and hastened our exodus. Too bad, though, because there was a man there that used to insist on giving me money to buy the kids doughnuts after church, it could have been very lucrative if we stuck around. FYI, I never kept the money, I think he just needed to do that for whatever reason. It was always uncomfortable for me, like we were a charity case or something, but it clearly made him feel better. The boys were not pleased when the doughnuts never materialized.

Church #2 was home for us. It is across town and it is where the boys attended school or the second half of their K-8 education. It is a beautiful church with a very loving feel and loving congregation. It was, however, not accessible for the wheelchair. Our entry there required taking a very noisy lift into the church. We were generally on time because being late was very disruptive. Of course, these were Maggie’s screaming years. She loved going to church and hearing the singing and watching everyone sit, stand and kneel in unison. That was HILARIOUS for her. However, whenever the church became quiet, which is generally the most important part of the Mass, and the time for personal reflection, Maggie would scream her head off. The echo was AWESOME. People were generally kind about it, but we knew they were annoyed. One woman complained to the usher right in front of me saying Maggie did not need to attend church anyway because she could not sin. (Obviously, this woman did not know Maggie very well.) Inevitably, I would have to leave church with Maggie. We (ok I) would have a bagel and coffee at one of the local shops while the boys attended mass. Too bad the guy from church #1 didn’t move with us, he could have paid for my bagels.

Once the boys went to high school, we started going to church closer to home. Because Maggie’s screaming and hollering was so pervasive, we generally left her home. We went to church separately, waited for the nurse to come or just did not bother. Then she got the trach and lost her ability to scream. Sad. But at least we could start taking her to church with us again. Of course, the sound of the screaming was replaced by the whirring sound of the suction machine, but too bad. In the last year or so, the suction has been less frequent (maybe 4 times an hour, instead of 4 times a minute).

So, lately we have been hitting church #3, which is about ½ mile up the hill. It is a fantastic place that seats around 2500 people. The noise of the suction machine is barely audible in that giant place. Only the people immediately around us can even hear it. We still tend to hit the family Mass, just because it is at a convenient time. There are many little kids making noise, so we look relatively pious. One or two little kids always come up to Maggie’s chair and gingerly touch the wheel or something. It’s cute, but it kind of bugs me too. Maggie loves it, so what the heck. Seems like we’re finally settling in to a routine.

Nope. Maggie will not have it. Since she cannot scream and carry on any more, she has taken to yanking on the trach ties throughout mass. She is very able to pull the thing out and has successfully done so on numerous occasions. We have to jump into action to get a new one in so she can continue to breathe. This would NOT be something that would be appropriate for church. Yesterday I had to hold her left arm down for the entire hour while we were at church. If I let go to scratch my nose or anything, wham! Her hand was right back pulling on the ties. You should also know that holding Maggie in any position is almost impossible. She is amazingly strong when she wants her body a certain way. And her arms – feggedaboudit – they are like springs.

It’s funny because Maggie LOVES to go, she just cannot stand not being the center of attention for that long of a time. I think there is a possibility she is missing the point of going to church. On the other hand, perhaps she is trying to tell me she’s not Catholic. Too bad. Unless she finds someone to push her to a different church, this is where we are going. I have to wonder, though, whether or not she will continue to join us.

If she does, I am going to have to find my old friend from church #1. Maybe now he will buy me a drink.