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.

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.

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 Intensity

I am sitting at my dining room table typing this, chowing down on a burger, fries, and yes, a post-run milkshake. Twenty miles tonight. I'm really happy. I always am after a good workout. For the distance runs, a good workout is one that I finish. My friend and marathon-teammate David came up and ran with me, but he's recovering from an injury, or staving one off, so he didn't run the last eight miles as a precaution. Running with others is always easier for me mentally. Running solo, my mind starts playing games with me, and at some point, my body almost always launches psychological warfare against my will. Here are some highlights from tonight's run.

Off the doorstep: I noticed two things. Firstly, it was chilly out. Secondly, my ankles were stiff. This could be unpleasant, I thought.

Mile 1: My ankles felt better, but within a hundred yards of starting, I realized that my perennial friend (whatever I ate last, no matter how long ago it was) intended to visit me on this run. There are 35,200 yards in a twenty mile run.

Mile 3: I noticed again that my friend/running partner, Dave, is a good conversationalist. He works on Capitol Hill and always has interesting anecdotes from his office, and knows a lot more about who did what in Congress than I ever will, so I like hearing about those things from him. He also asks me about my time in seminary, and has questions about the Church. He's a new Catholic, and so it is especially fun to answer those questions for him. New Catholics, I thought, have such a beautiful joy and excitement about everything Catholic, and everything is new to them, and so they are very often joyful and excited. Those of us raised in Holy Church take much more for granted, and are perhaps harder to shock with Church shenanigans - but that is probably less for our stronger consciences and more because of our deeper cynicism or boredom.

Mile 8: We finished our second four-mile loop. It was about 8:30 p.m. and starting to get positively chilly out. It's a new moon tonight, I think, and very dark away from the larger roads. Summer's back is definitely broken, I thought, and whatever else comes this month will be a last hurrah.

Mile 10: I noted that I still felt fine. Excellent. Last year, during the 26.2 mile marathon, I felt great at the halfway point. That I should feel fine at the halfway point of this long training run struck me as a good sign.

Mile 12: David had to stop at the end of twelve miles. He waited at my place, icing his hip and reading, while I finished the last eight miles.

Mile 13: The first mile I ran on my own. I felt great. By now, it was getting quieter out as traffic died down. Provided one has slept enough, if one has to run in the city, or at least my neck of the woods, it seems like late at night is the best time to run. Running after midnight is best, even, because many of the signs turn off, and the traffic lights blink, and the cars tuck into their garages for the night as their owners tuck into bed. The world becomes quiet, and still, and even this most densely populated part of the busiest stretch of road in my county, next to the nation's very busy capital, settles down for the night, and it feels like it did when it was a small town and I was a small child.

Mile 14: The first mile where it occurred to me that I might stop. I decided to offer the mile up instead, but I forget for whom I offered it. Well, God and the Blessed Virgin remember.

Mile 16: I offered this mile up for a friend who recently surprised with with a very kind gift. Both the gift itself and the surprise were immensely encouraging to me. A mile for him and his family seemed the least I could do.

Mile 18: This mile was the first where it started to hurt. My legs felt a bit like logs - and I don't mean the sturdy sort of logs, but the heavy sort. I was pushing myself, and please with my splits, but afraid to slow down, to take it easy. The danger with taking it easy is very much the same as the danger with pushing oneself too hard: one might just stop either way. No, a nice, regulated pace is the way to go, and I was having a hard time regulating myself. I offered this mile for Keelin, my youngest sister, who is autistic, and who is always a great source of joy and sorrow bundled together. This mile hurt more as it went along, and I take that - now as I sit here stretching and slurping a milkshake - as a sign that God was pleased with my little sacrifice for her. I found myself rationalizing slowing down, slowing more, slowing to a st... NO! Alone, in the dark, I felt sobs welling up in my chest: love; regret; physical pain; intense, intense determination like I rarely feel. I ground my teeth together, cursed, and growled, "This one's for KEELIN!" and I pushed myself, or maybe my Father in heaven pushed me, back closer to the right pace, even past the pace, I think.

The mile ended and I was very sorely tempted to stop. I was in front of my house. I was taking a brief and dangerous break to stretch. My legs didn't want to bend or straighten, tense or relax, but just wobble. I bent over to touch my toes and stretch my back. Standing next to my roommate's car, all I could see was his car's tire and my legs and toes. I almost stopped. After all, it was more than I had run last week. It was enough that I was closer to being back on schedule. Who would blame me? I was very tired, and it was getting late, and even cold, after all. I started to pray, "Father, give me strength, please. Father, strengthen my legs and my heart. I am so weak and tired, Father." I tried to say, "Amen," and straighten up. I muttered something far less pious, but much more honest, and maybe in that sense, more pious after all: "Sh*t. Let's just do this &%@#%^$ thing." Not the best way to end a prayer, but probably better than ending the run, and so I hope you will see why I think there may have been a grace bundled up with my mutterings.

Mile 19: I offered for my running parter and his wife, who are expecting their first child. I passed a man walking his dog.

Mile 20: These miles were for my sister Megan, her husband, and their babies. They have two under two years old - talk about studs! I passed the man and his dog again, from the opposite direction. He called out to ask how I was doing. I called back, "Finishing up twenty, and I'm feeling fine." The second part was an exaggeration more than a lie. Oddly enough, as in my days back in school running cross country, my last miles were as good as my first.

The whole twenty miles took me 2 hrs, 58 min, 57 second. That puts me at a pace of 8:55 min/mile, which is fast enough to break a 4 hr marathon by a minute or two. That's OK, but I didn't count the stretch breaks into the time, so I'll need to cut those down, as well as pick up the pace a bit.

That's for tomorrow, though. For tonight, I am going to pop a few ibuprofens, say my prayers, and hit the hay. I've got a few things to do in the morning before I can even think of a nap, so I'll definitely need some z's tonight.

A couple other random thoughts:

(1) A couple with whom I am friends ran their first half-marathon today up in Philly. I'm pretty pumped for them, and hope it went really well. They're really cool people and they have a nice little boy, and are a brother and sister in Christ. They've trained long and hard, and, well, it's cool... no, beautiful, to see such things unfold. More studs.

(2) A good friend of mine is a deacon-seminarian. I posted his first homily back in May because I was so moved by it. He is in residence on weekends at a parish near me, and tomorrow will be preaching the midday Mass. The Archbishop has asked every clergyman in the diocese who preaches tomorrow to preach about same-sex marriage. The issue is really coming to the fore here locally. My friend was sharing some of his thoughts for a homily with me on the phone the other night. Golly, what a hard thing to preach about: both the Church's teaching and the Church's love must shine forth, both are doubted by much of the world and many sitting in the pews, and only words can be used. I want to go hear him preach because he will do a good job. Another stud.

Eunice Kennedy Shriver Would Be Very Proud

Sometimes our "culture" can seem more homogeneous than it is, here in the U.S., because of our national media, which tends to project just a few key images. Those images are necessarily a bit stereotypical. Since we all watch the same shows, we tend to absorb, I think, the same national self-image.

But in reality, travel throughout the U.S. shows that even aside from superficial similarities and differences, there are really profoundly different cultures speckling our country.

When I was in Omaha for a summer, I noted something different there, as surely as I did when I lived for a semester in the forests of Westchester County, outside New York City. I note differences in Ohio and Michigan from Nebraska or Virginia. In reality, the very ways of thinking vary across the fifty states as surely as the landscapes.

The Catholic Key Blog posted this article, describing something different going on in the area around Kansas City, MO. One wonders how such a phenomenon starts in a given locality. There must be a story there. In any event, it is a beautiful thing to read about: a local community that somehow came to decide, without voting it seems, but just by knowing, that it would be accepting of people with handicaps. To be fair, America as a whole has come a long way in basic tolerance of people who are weird, unusual, burdened, or struggling. I can see it with my own sister Keelin. When we take her out nowadays, it seems to me that people are much more likely to be understanding (or at least tactfully quiet) of her funny noises or mannerisms than a decade or two ago. Very rarely do others mock her, as was common back then. That is a good thing. Still, something special seems to be happening in the KC-MO culture.

Rest in Peace, Eunice

Eunice Kennedy Shriver died on Tuesday, and today will be buried from St. Francis Xavier, Hyannis, Massachusetts. Her legacy was immensely important to me personally – she strove to help the world see the strengths of persons with disabilities, rather than as a series of shortcomings or challenges. Her efforts were largely in response to the condition of her sister Rosemary, who seems perhaps to have been mildly mentally retarded or ill until a failed lobotomy, secretly ordered by her father, reduced her to utter incapacity. Eunice and her brother Ted Kennedy were both present when their sister Rosemary passed away in 2005.

Until recently, Eunice and Ted have had very different approaches, though. One cannot doubt that both loved their sister as best they knew how. That is natural. But Eunice was convinced that every single human life was a good thing, no matter what else. She personally advocated with president after president, starting with her brother. Even though she was a card-carrying Democrat, she was an outspoken supporter of the pro-Life cause within and outside of the Democratic Party. Ted, on the other hand, along with much of the political members of the Kennedy clan, has been a strong advocate for abortion. Abortion says nothing if it doesn’t say, “Some lives aren’t worth living.”


Persons with severe disabilities challenge our easy status quo. Normally, each of us is self-sufficient. We each can take care of ourselves, and occasionally help each other out as need arises. But a person with a severe difficulty, especially a mental one, needs constant help. Oftentimes they need help for the most basic functions of life. That means we around them must pitch in, get outside of ourselves, and learn to be patient, and gentle, and do extra work. Unlike “the rest of us,” it is not possible merely to coexist with the handicapped. They need too much. That is why we will either learn to love them or we will decide to kill them.

This morning, listening to NPR on the way to work, I heard some Democrat pundits fending off accusations by those hostile to their plans for healthcare reform. They brought up the accusation that they or their approach would kill all the people with Down syndrome. “Ha! Come on!” was about all they could say. Of course they don’t support killing all who have Down syndrome. They just support extensive neo-natal testing. Oh, but wait, they also support abortion on demand, and especially in difficult situations. And of course they support, many of them at least, government funding for abortions. Hmm… one wonders why there are so many fewer people being born with Down syndrome now than in the past.

But let’s get back to Ted and Eunice. Ted’s approach is the politically expedient one (for now), and it is also the more pleasant one, that is, the one that allows social pleasantries to do most of the work. After the abortion (say, of a child with Down syndrome), social pleasantries can go into full gear. It wasn’t a child, but a choice. There was no abortion (such an ugly word), but merely the premature termination of a pregnancy. The child who never existed didn’t have a perfectly livable condition with which millions of people worldwide live happily; rather, there was a severe defect. The doctor and family did not conspire to murder for the sake of convenience a child entrusted to their care by God Almighty, but rather, they sent home to Good and Gentle Jesus a precious little one who otherwise would have struggled greatly. Do you see, dear reader, how the game is played? False words cover over the truth, and one can try to look at oneself in the mirror again.

That’s not how Eunice’s approach works, though. In Eunice’s approach, a child is born into difficult circumstances. Sometimes the circumstances are extrinsic to the child – like poverty, or an ill mother or missing father. Sometimes the circumstances are part of who the child is – like mental disability or a permanent medical problem. The child’s life is filled with frequent or even constant hardship. Those close to the little boy or girl must learn to sacrifice in new and intense, profound ways: sleep is lost, money is spent on extensive necessities rather than on yearned-for luxuries, vacations are altered or sacrificed, hopes and dreams are modified or abandoned (that’s the hardest part). It is too much for one person, so the family, friends, neighbors, and local leaders all have to pitch in together. Cooperation makes an overwhelming set of challenges manageable. New virtues are acquired that were never before needed, or are developed when before they would have been slight: patience, tenderness, discipline, flexibility. Heroic effort is needed for basic steps. Those around the child eventually learn to be amazed and joyful at very little bits of progress – oh, how a person with handicaps struggles for such little gains. I remember my amazement to discover that my own handicapped sister had learned to tie her shoes. That she was fifteen years old wasn’t my interest, but only, “Hey, Ma! Look what she can do! Did you see that? Did you already know she could do that? Holy cow! That’s great, Keelin! Good job!” In Eunice’s plan, we learn self-sacrifice, cooperation, affection. We learn love. And as the child grows and prospers modestly, or not, we learn to see a rhythm in reality, a meaning in the muddle. We learn to see how one event happened before another, though we would not have so arranged things, and that the arrangement that actually happened was, in fact, arranged. We come to see that there is a plan in the universe, and a Planner. Ultimately, in the life of a child with disabilities, we come to see the face of God.


But it’s not romantic, and it’s not easy. There is a lot of blood, sweat, and tears to be shed along the way, or else everyone would do it. We need grace – the life, strength, joy of God shared with us from on high – or else we will go the path of least resistance. We will go the way the pagan world, the world without God, has always gone. The Jewish prophets were the first to object to the murder of the weak and marginalized. They were the first to insist that personal comfort and domination by the fittest were not in accord with God’s will, with deepest reality. Christians have taken up that objection, that insistence – though some of us have been seduced into murder by pleasant words. If we do not learn to pray, to return to God, to seek His help, we will end by killing those who interfere with our plan for happiness. We will go Ted’s way.

Now, on a closing note, I’d like to be fair to Ted. It is easy for a good heart to be seduced. Moreover, he now has brain cancer, and wasn’t even able to attend his sister Eunice’s funeral Mass. His cancer has certainly incapacitated him. He was there for Rosemary, after all. Maybe his struggle with cancer and the prayers of his sisters in heaven will help him to come to know the love of God in a more profoundly penetrating way than he has before.

Eunice, thank you for all you did. Yours was a monumental life. Now you are with your Rosie and can know her as God has always known her. Please pray for us who still journey here below.

P.s.: Today Eunice's family issued a powerful statement that well summarizes a powerful life. She visited Rosemary regularly. She advocated persistently for political and social measures to improve opportunities for those with handicaps to enjoy their full human potential. She strongly challenged consciences and gently coaxed contestants. She built the Special Olympics from a backyard affair (literally) to a global showcase of talent in which each individual is fostered and cheered on. Until the last years of her life, she and her husband, Sargent, hosted a summer camp for children with and without disabilities at their home in Rockville, Maryland, so that the children could grow with each other.

"Inspired by her love of God, her devotion to her family, and her relentless belief in the dignity and worth of every human life, she worked without ceasing - searching, pushing, demanding, hoping for change. She was a living prayer, a living advocate, a living center of power. She set out to change the world and to change us, and she did that and more. She founded the movement that became Special Olympics, the largest movement for acceptance and inclusion for people with intellectual disabilities in the history of the world. Her work transformed the lives of hundreds of millions of people across the globe, and they in turn are her living legacy."



P.p.s.: Another thing strikes me about Mrs. Kennedy Shriver. In every single photograph of her that I can find, she is smiling. It seems as though her path, though it be harder, is happier.

Click here for the biography on her website.