Some of the More Things of Heaven and Earth

We live in a world that professes to love beauty, to love when people triumph over adversity, to love courage and fortitude and persistence. We celebrate it in wounded warriors, in athletes, in students that come from disadvantaged situations. When someone who has defined parameters we can see, exceeds them, even for a moment, it is a stop and recognize "there are more things in heaven and earth Horatio, than are dreamt of in your philosophy." type of moment.  But the world seems to think, we need less of these moments, as it continues to champion the destruction of the disabled in the womb, and sanction the euthanasia of the elderly.  The world professes to love seeing people triumph over adversity, but advocates for eliminating all people who might suffer from adversity.  You can't have the victory without the struggle, but the world, out of fear, out of hopelessness, has declared, all struggling should be eliminated.

Today, my son came to me and said, "Catch" and threw me a ball. It is a simple thing. But for my son to speak is already more than I expect. For him to invite me to play with him, and to do it multiple times, showing me he knows what he wanted, and how to say it, and how to do it, well, I had my miracle for today. He even caught the ball twice. 

Some people think people like Paul should be destroyed before they're ever born, to save them from suffering through the trials of this life. Some people think giving birth to a disabled child if you know the child will be disabled, is the height of selfishness, because you could have spared them.  

The problem with this sort of thinking is it denies a reality. No matter what the tests show, every child will be dis-abled, in that there will be some things that any given child cannot do or do well. There has not yet been born a Super baby, and even those exceptionally gifted, struggle with something because all of us do. Should your child be born perfect, there will still be the flaws of the world, of teachers and bees, mean dogs and rainy days, boredom and chores he finds tedious. She might hate ballet even though she has the legs and grace and apparent talent. She might love singing, though her voice is that of a frog. Desire, talent, reason and capacity do not always line up, and no matter who one gives birth to, or how well they are raised, there will be at some point, some rawness, some keen disappointment which shakes them out of the idea that all in life must flow without effort, and without suffering. Someone will die, someone will fail, someone will not show up, someone will disappoint. It may even be themselves.

We cannot bubble wrap life and live it to the marrow at the same time. If we opt for safety in all things, we can create a fragile creature of a person, and ensure they never have a skinned knee, but that will rob them of the joy of discovering they can survive such things, and that such things in the scheme of things, are not worth worrying over. Eventually, science will allow us to eliminate all sorts of conditions, but only at the cost of all sorts of people, people like Michael J. Fox, like Beethoven, like Stevie Wonder, like anyone we've ever met who inspired us because they didn't let their disability define the whole of them, or rather, they didn't let us define them solely by their disability. They already knew they were more than their blindness or Parkinson's or deafness or whatever it was, they already knew they were whole people of infinite worth.

Paul doesn't have a magic talent like they showcase in Hollywood movies. He can't count cards like Rainman, and he isn't a musician of professional caliber. He's seven.   But none of his brothers or sisters weigh Paul's worth by what he can't do. They celebrate his presence daily, not because they're angels, but because they recognize his victories are just that, victories over what the world says about his capacity to add value to life. Paul adds salt to our family. We were a big family before him, but he has made us fuller. 

Tomorrow, he will show me another miracle. It may be when he (he's seven), wants to go outside, and brings me my gloves. It is a  gallant little gesture on his part, but the world will be saved by little acts, by little kindnesses, by little miracles. And people like Paul, specialize in those sorts of things that will save the world. 

My article is up at the Catholic Standard

Busy working on an interview article with Marie Helene Mathieu and a review of her translated book,  Never Again Alone.

So enjoy the most recent piece for the Catholic Standard, detailing the annual White Mass held in DC to honor people with disabilities and those who care for them.  

Biting Humor

My youngest son has decided the easiest way to create a good impression is with his teeth.  It's a problem in part because we never know when this cute almost 2 year old wannabe member of Team Edward will strike. 

Now I used to teach biters and have been trained on how to get someone to release; you push back into the bite so that the head of the biter is pushed back and that causes him to open his mouth a bit more and thus the arm, hand or what have you that is being bitten, can escape.   However, even I remain fearful of using this technique since pushing back into my son's mouth might strain his neck. Down Syndrome children can sustain injury from a blow to the head that results in paralysis; the neck moves too far back.

Thus my children and I remain at least at present, the human version of teething rings whenever his need to nosh strikes.  

It's not that we don't shout "OW" or "No." or cuff his nose when he starts clamping down or put him in time out; it's that he views the whole thing as one big game.   He shakes his head no back at us with a big happy smile even as we place him in the playpen.  We cuff his nose and his eyes twinkle as he reaches out to repeat the gesture back.  We say "OW, that hurt!" and he claps and laughs.  So either he's the smallest sadist in the world or he just doesn't yet get what we are trying to convey.  

Part of the problem is my son loves stuffed animals; specifically one unimaginatively named Monkey,  stuffed monkey.  When Monkey is in his crib, Monkey gets kissed, hugged and his ears get bitten multiple times.  Monkey does not mind this and Paul showers Monkey with biting love.

However the rest of his family and the general population at large do not share Monkey's stuffed ears or capacity to tolerate however many tons of metric pressure one two year old with abnormally sharp cuspids, bicuspids, incisors and molars can bring to bear in a death grip.

So we now have taken extraordinary measures to keep our youngest out of biting range except in controlled environments.  Jean jackets work almost as well as chain mail; so do layered preppy look sweaters except when he goes for the arm.  For the men and boys and those who hate either of these two looks in the family, holding Paul facing away is an effective alternative, though that is much harder on the back; and the umbroller has become the vehicle of choice out in public.   I rejected the idea of a muzzle and/or retainer to keep his jaws under wraps.  

One of the children suggested making him walk everywhere possible in hopes that by wearing him out, he won't have the energy to take a bite out of us.    The problem with that solution is two-fold: 1) It reduces the speed at which we move to .0001 miles per hour and allows for other children to thus get into mischief and 2) the internal mental discipline required of the adults moving the party along that pace is as demanding as the physical conditioning needed to run a 10 K in whatever a decent time for a 10 K would be.  

The only real solution to this lies with our young son and the every day maturation process that is taking place.  We'll keep saying no, putting him in the pen and cuffing his nose until he gets it.  In the meantime, if our family portrait this year shows everyone in life preserver vests, I hope you'll understand.

The Dream We Have May Not Be Ours to Realize

Today I was busy trying to be busy, trying to be a good mom by making it to mass to see my son read for three seconds of petitions. My four year old daughter always needs to use the facilities at mass. Today was no exception.

A friend offered to watch Paul and Regina so I could take Rita by myself and I stopped to watch the class of students aiding the set up of the soup kitchen. These were children with moderate disabilities, some of them non verbal. They were serving those who would come to eat because they had no other place to eat. They were doing meaningful work despite their disabilities, or perhaps because of their disabilities. If they had not been handicapped, they would be in regular classes learning history or algebra or wondering why they had to learn history or algebra and when was lunch?

Instead, they were setting the tables, adding napkins and flowers and notecards. I watched a young man pushing a cart. This could one day be my son, feeding the hungry. I thanked the teachers overseeing the students. Today, a dream I'd harbored was fulfilled not by me, but for me.

You see, when I was a doctoral student, I wanted to run a soup kitchen where the students with developmental delays served and cooked the food. I wanted the kids to do meaningful work that served others. I had served as a supervisor in graduate school at a "simulated workshop" where simulated work was done and hated it. I had watched students grow angry at not the menial nature of the work but the menial nature of their lives, of expectations.

"Who wants to grow up to be a maid?" a student Christina had said one day as she slapped down her book bag. I found I could only agree. Who wants to be a servant? It was then that I started pondering how to make vocational training as it was called, vocational learning (my term). “Who wants to serve?” was a much more compelling question in my mind.

Going back to the mass, we made it to hear my son say his part and I sat there feeling my heart plucked by the readings and the Mass and the ashes and the reality that the meek were feeding the hungry and how great it was, that even little ones like my son Paul might one day be able to act as Christ to others in the little way of setting a table or adding flowers.

The degree didn't happen and neither did the school I'd planned, but the vision of what I hoped did, without me. I just was blessed to see it and to recognize it realized today.