What Does It Mean to Be a Spiritual Child?

Today, as on most Saturdays, my mother and I pick up my baby sister Keelin, about whom I've written before, and take her for a car ride. Keelin looks forward to these rides, and on the odd occasion when they cannot happen, she is disquieted. She does not understand. She wants her car ride. And it is worse if, for some reason, either of us has to go by her group home on such an occasion for some business. Today I had to drop off some articles for her. I took some pains to avoid having her see me, because the weather is very inclement, and in such situations the briefer one's time on the road, the better. I spoke with her aide quietly, never going into the house. As I took my leave, I saw Keelin in the background, standing on her tippy toes and craning her neck to see over the aide from a distance. I do not know if she identified me with my hood on, by I know that she knows the time of the week and whom she expects to arrive for her. What she probably does not understand is what snow and low visibility have to do with her car ride.

It is also so between us and God. We know what we want and are expecting, and we know them to be good things: successful career; family happiness; freedom of movement; good health; a rhythm of diversion, leisure, and fruitful labor; and so on. What we do not understand are the reasons for which God withholds these things from us, or at least permits them to be withheld.

It is at these times when we can internally rebel against God, even if we continue to go through all the motions of a religious commitment to Him; or we can pray for the grace to accept that our Father knows what we need and is giving it to us, even when it feels like a very bitter pill to swallow.

This is faith: knowing that God has a plan for our good, even when we cannot see it.

Running for Keelin

This is my sister, Keelin. She is 25 years old and lives in a group home in Columbia, Maryland, about 25-50 minutes from the various other members of our family. She lives in a group home because she is autistic.

She's not like the Rain Man, if you saw that movie. The movie, on its own merits, is good. It is a bit misleading though, because most people who are autistic aren't like the character that Dustin Hoffman played so well. Keelin certainly isn't, anyway. She cannot count matchsticks or play the piano like Mozart, or anything like that. In fact, she only learned to tie her shoes when she was fifteen (praise God!). She really doesn't talk very much, although she does understand - when she cares to - a great deal.

A couple years ago I saw a sign for a "Fourth of July Run for Autism 5k" on July 5th. Naturally, I was very disappointed. Last year, I forgot about it until too late. This year, I am already registered. The road race is sponsored by Autism Speaks, an organization dedicated to raising public awareness of autism. For myself, I am not hoping for a magical cure as much as I am hoping that our society will be able to identify and remove the causes of autism, while getting better at recognizing and incorporating those who experience it. The race is a fundraiser for Autism Speaks, and I am running in it to raise money for them because their work so closely matches my aspirations for my sister.

My sister Keelin likes to go for walks and car rides. She prefers classical music to contemporary. She likes horses (and better at a bit of a distance) and swimming. Really, I am running this race for Keelin. I am not in peak shape right now, to say the least, but I figure at least I can go out there and do it.

If anyone would like to make a donation to support my efforts for Autism Speaks and for my sister, I will be greatly obliged. To do so, click here. If you would prefer to write a check rather than make an electronic payment, click here for the form you need to print out and send in with your donation. I don't know that the organizers will tell me who's donated on my behalf, so let me thank you in advance. If anyone else wants to run it, I believe there are still entries available. Click here for their website.

My Sister Keelin

Today (3 Apr '08) is the birthday of my sister Keelin. She is 24 years old, though she was a bit younger in the picture at right. I remember being about six years old when our parents sat my sister Megan and me down to talk. They told us that we would have a new baby brother or sister coming soon. We asked if we could hold the baby, and they said that of course we would be able to if we promised to be very careful.

Keelin was born and seemed normal enough, but as time went on it became clear that she had a mental disability. In the mid-1980s in outer suburban Maryland we hadn't heard of autism, and so when my parents eventually received that diagnosis, it must not have meant much to them. Over the last 24 years, though, it has come to mean a great deal to us. You can be sure about that.

Keelin isn't the Rain Man. I say that because for a long time, Dustin Hoffman's acclaimed contribution to cinema provoked that question when people would learn that she was autistic. At first, they usually thought we had said, "artistic," and then, after scanning their memory, they would say, "Oh, like the Rain Man in that movie... what was it called?" One of us would answer coldly, for the three thousand six hundred and sixteenth time, "Rain Man." And then, "Well, not exactly like that." You see, Keelin hasn't any "special skills," like counting toothpicks very quickly. In fact, from the autistic people I've gotten to know through Keelin, I rather doubt that the toothpick-counting variety of autistic persons actually exists. She was reasonably athletic, but her athleticism was of limited application because, for instance at Special Olympics footraces, she would usually veer off the track in pursuit of some grass or a bit of mulch that caught her fancy. She hadn't much use for footraces, Special Olympics, the marks of personal accomplishment, or even other persons, generally speaking.

What Keelin has is an amazing ability to entertain herself. Caught up and cut off in a world of her own by a disorder that nobody really understands, and a severe variety of the disorder for that matter, she has always been on her own, even in a crowded room. Sometimes she seems so inexpressibly sad, and all the more inexpressibly for being unable to express her sadness to someone, anyone. Once in a while, I think I kinda know how she feels. My sister's own bottled-up-ness seems to overwhelm her sometimes. She can become so frustrated that she becomes violent against herself. Her hand is scarred from biting it so much. Other times, Keelin becomes just elated - the sun on her face as we drive through Maryland's beautiful hills and woods can make her beam like nothing else. She usually likes looking for horses while we drive on our country roads, but like other people, sometimes even her normal interests don't interest her. She enjoys a lot of normal things: pancakes and ice cream, car rides and the beach, getting postcards in the mail and exploring new places.

I said earlier that she hadn't much use for other people generally speaking. Generally speaking, that's true, but not always. Sometimes she seems to come out of her bubble, just a bit, or just for a little while. She'll make eye contact, laugh, seize your attention, and give a hug that goes beyond the routine mechanical hugs she's been taught to give. This past Thanksgiving, she was more out of her bubble than normal. She laughed at all the jokes, waited patiently for dessert, was relaxed, and at peace. She suffers unwittingly so much that it was very beautiful just to be with her while she was genuinely enjoying herself. This past Christmas with her was very nice as well.

Keelin has been a blessing. No if's, and's, or but's. She has taught us patience with the frail, love of simple things, and the importance of family. In fact, in the wake of my parents' divorce, Keelin has been at times the only thing that really holds us all (or, at least my parents) together in a practical way, because we all agree that we care for her at whatever cost. She lives in a group home only 40 minutes from the rest of us, and she receives family visitors and excursions with us two or three times weekly. She comes home on holidays for an extra visit, and the staff at her home take her shopping and on vacation. It's not ideal, but neither is the world. Another important point that Keelin has taught me is that we never really know what's going on inside of anyone; so it's best to take it easy on them if we can.

The point of life, those who advocate euthanasia would be well-advised to learn, isn't to eliminate suffering, but to learn to love in the midst of suffering. Love in the midst of suffering stands out in clearer contrast and shines all the brighter, bringing more joy and more life. As hard as it is to say so, given her condition, that I am grateful that God gave her to us, entrusted her to us. Autism and all.

Even though she doesn't read, let alone surf the web, it has to be said:

Happy birthday, Kee-kee!
We love you.