Sunday, May 20, 2012
As we sang "Amazing Grace" at the end of mass this morning, Olivia returned to our pew from the children's program without Simon and very upset. Immediately worried something had happened to Simon, I asked her what was wrong (was Simon okay, was she okay, what happened?), but she assured me that everything was alright -- Simon was with a grown up helper in the hallway and she would tell me what was going on as soon as we got outside. Together, we filed behind throngs of other worshipers exiting into the hallway and went to retrieve Simon.
We have only just started to go to this new church and, more to the point, we have just started to attend mass with Simon on a regular basis. It has taken me over a year to accept that the tiny but beautiful urban parish I've loved since my art school days could not (or would not) meet the needs of my family by providing an atmosphere in which Simon could participate. At that church there is very little in place for kids, and nothing for children with special needs. As I have come to accept that Simon isn't going to "grow out of" his inability to sit through a long adult-focused mass anytime soon (and as I started to accept that it was time for me to let go this last bastion of a former self), I looked for a better fitting parish for our family.
Upon the recommendation of a neighbor and after a little research, we settled on a large suburban church with extensive programming for children (toddlers through teens) as well as a "buddies" program (run by a teacher from Simon's school!) to help kids with special needs be included in the typical program. The parish itself is huge -- there are a ton of families with kids, many of them from Simon and Livy's schools. It is very modern and high-tech; with big screens, a rock band, and cafe that serves starbucks-worthy fare. I honestly found it overwhelming at first; a little like I had walked into an extremely friendly foreign country -- I was on constant sensory overload, but at least the crowds were smiling.
I'm gradually becoming accustomed to this new culture, and I'm learning to appreciate that it is not just a better fit for the kids, but in general the messages discussed are relevant to where I am in my own life. Today's message was to think about something we want but do not yet have, to envision our world with it in place and then to be "bold enough" to ask for God's help in getting it. Though I envisioned lots of bold things (a future where Simon and Olivia are both happily independent, good health for my family, career successes...), I kept returning to what seemed like a simple wish for grace.
It is something I yearn for often, in good times and bad. I pray for it when I am facing one of Simon's potentially catastrophic seizures and I need to have the grace to overcome my fears and focus on the present. I pray for it when an entire community has enveloped us in their love and generosity, and I need to have the grace to find the ways to show them how profoundly grateful I am without letting pride or humility overtake me. I pray for it when I am confronting a socially awkward situation, like this weekend when I went to pick Olivia up from a party and the other parents of "gifted" kids like Olivia were sedately having drinks while I was chasing Simon around the house (to keep him from destroying the antiques) as he spun wildly with hands flapping, drooling copiously and loudly reciting his current favorite television programs. In these moments I pray for the grace to be okay with Simon being Simon. To have the grace to be honest if asked about him, but not feel the need to launch into explaining or (worst of all) apologizing for him.
This morning after mass it turned out to be a good thing that I had been praying for grace. When I found Simon with the adult from the children's ministry I quickly uncovered why Olivia had been so upset. Simon's "buddy" had not been present at the children's program today, and so Olivia had taken it upon herself to try to take care of him. Despite her best efforts Simon quickly got beyond her ability to control; singing loudly, spinning, jumping and climbing until he finally accidentally kicked another child. Olivia didn't know what to do, and became embarrassed when people started staring at her brother and complaining about his behavior. An adult interceded fairly quickly and helped her, but not before she was inconsolable. Olivia told me that she was sorry that she wasn't able to take care of Simon, and that she was embarrassed by what had happened, but she also felt bad to be ashamed of Simon. As she told me about her feelings one of her school friends stopped over with her mom to see if Livy was okay and she immediately hid herself under my arm in a way she hasn't done since she was a tiny child.
Though what I really wanted to do was burst into tears, I forced myself to focus on practicing grace both for me and for Olivia. I smiled at everyone present and told them how much I appreciated their concern and reassured them that we were fine. I put an arm around each child and steered them past the crowd, through the parking lot, into the car, and I drove to the nearest Dunkin' Donuts.
Coffee and pastry in hand, Simon happily engaged with his pile of glazed munchkins, I told Olivia that I knew exactly how she felt. I know it is hard to take care of Simon when he behaves in a way so different from other children. I know it is hard to know what to do when others are bothered by it. I know it feels wrong to be embarrassed by someone you love.
And then, I told her that I had been thinking about this thing called grace. That I thought that grace was living your life everyday doing the best you could to be the best person you can be no matter what challenges you were faced with.
Olivia (who never misses a beat) asked me if Simon's disabilities were the sort of challenge that I meant; and I agreed that they were -- but not just for Simon, for our entire family. Sometimes this challenge is something that makes us different from others, and that people might stare or not know how to interact with Simon, or even be afraid of him or unpleasant to him. Olivia told me that this was exactly what she was afraid of, and I told her that it worries me, too.
But, I said, this is where grace is so important to our family, and how maybe our family can make an important difference in the world. I told Olivia that if we can be graceful by being our honest best selves, we can show everyone that Simon is in some ways different, but it isn't a bad different. It is a happy, loving, fun (and sometimes a little crazy) different. That by being a loving family we can show the world that people like Simon might sometimes need extra help -- but just like everyone else they also need respect and acceptance.
As Olivia's tears dried and I finished my coffee and cleaned up a very sticky Simon I thought about how simple what I am asking God for is. I just want us to be graceful by being ourselves. By being ourselves, I want to be an example of what love, respect and acceptance mean for people with disabilities. By being an example, I want to enlighten those around us and make them reconsider their own attitudes and prejudices. By making people more enlightened, I want to change the world for my son and everyone with challenges like his.
I simply want to change the world... which I guess is a pretty bold thing to ask for after all.