You Were Always to Be More

The other day, while researching a project, I stubbled upon an old article I’d written about my youngest son (who happens to have Down Syndrome) and the blow to support for kids like him when those in roles of leadership, reveal themselves to be injured, sinful, and corruptible creatures (like we all are).   I thought of the words, “you must be perfect, as your Heavenly Father is perfect), and realized the reason we need to be better, is not because God will love us if we are, but that the world can’t see God’s love if we don’t.   One of the comments confirmed this thought with the words, “You must do more.”  

My first reaction was shall we say, less than enthusiastic.  “Lord what now? What was that more? How could there be more to do?”  But the comment resonated deep.  It was a reminder to me, that nothing happens without God’s consent, without God’s permission, and that He sometimes puts things and people in front of us, to help us see what we must confront.  The comment felt like a commission.  I am a mom of a son with special needs. He turned twelve yesterday.  We’ve begun discussing with his teachers what happens next, when he no longer looks like a child, when he isn’t a child, when he needs to live somewhere other than with us.  I thought about how he will need friends other than his family to provide the stuff of life that makes life something beyond the ordinary, the routine and the mundane.  He will need us to start on this hard list of things to do now, if they are to be there for him in the future. Hard things to face in ordinary time, harder in these days.

 “You must do more.” What was the more? My brain rattled off what I saw as being needs in my other children as they grappled with the trials of adulthood.  He would need hobbies. He would need meaningful work. He would need income. He would need a network of support to get him to the doctor or the dentist, or haircuts and to weekly mass. He would need friends.  He would need all these things to be not imposed upon his life but grown into/grafted into it.  His family would be part of this but could not be all or only.

Why did he need all of this more?  Because Covid-19 revealed what happens when he gets the more of company, of peers, of daily interactions and meaningful work.  He’d learned to make his bed, wash the dishes and fold towels. During this time of Covid-19, my son learned how to ride a bike without training wheels, how to pull up Disney on the television for a quick Muppet break in between Zooms, to set and test a shower and take it on his own, and to make his own sandwich –ketchup and Oscar Meyer bologna on white bread, cut into triangles. (I wouldn’t advise it, but he eats every crumb). Part of why he learned all of this, was the gift of extra time having no place to go in particular allowed. Part of why he learned this, was his siblings expected more of him than his mother. His mom would make him breakfast. It was a form of love and service and habit with no ill will intended, but he needed to master more skills. Here was the more.  His older brothers and sisters would say, “Make it yourself, like us.” And didn’t stress if he poured cinnamon toast crunch more full than I would have as long as he finished it.

One of them even taught him how to scoop it with a measuring cup to have better portions. He learned to pour the milk too, even when it’s full. (Though some of us hold our breath when he does the same way I do when a teen practicing driving gets too close to a mailbox).   They wanted him to be twelve, to be like them, more independent. It would make him better than he was, more perfect by letting him do things imperfectly. 

 Every step toward his independence came for me with a list of worries…would he remember each time to do what he needed to do?  Free will and freedom, growing up is hard to do, and I suspect, harder on this grown up.  The more was as much about taking on, as it was about surrendering, dying to the self that gave love through service that now was no longer required so that new service could be given.

“You must do more.”  Seemed like a motto to embrace in this time when all our enjoyments, education, work and ordinary efforts take extra effort.  Willing to do the more requires we both will to do and do so willingly.  When we’re sent from the mass, whether we’ve watched it on television or been in person, we’re sent, commissioned to do this very thing, the more.  We aren’t merely to receive passively, but to respond actively in our hearts and allow Christ to transform our lives.  We will go from being men who fish to fishers of men. We will go from being water to being the better vintage of wine. We will go from five loaves and two fishes to twelve baskets left over after feeding five thousand.  I thought about all the ways in which we sometimes get used to things we should not. Covid-19 taught this through big and little ways.  We shouldn’t have become used to long hours and not having dinner together whenever possible.  We shouldn’t have traded in time in commutes where we served work rather than our families.   The time home also showed me other ways we shouldn’t have, which Paul’s siblings corrected via natural intervention. 

Trisomy 21 means the child has a little extra, a little more.  His needs mean we need to do the little extra, the more his siblings have done with and for him, helped him to do more with and without them.   He could do more.  I should do more.  We should do more. Why? Because it has always been God’s will for all of us, for each of us, to be more than we planned, and do become more perfect even as we go about the business of living this life imperfectly.

 

There Was a Lack, Just Not What We Thought.

 Having endured Zoom in the Spring when we did triage teaching, having a virtual classroom in the Fall is not significantly different.  Time grinds to a halt in terms of the give and take of lessons or conversation.  At the same time, when work is required, time superaccellerates and by the end of the day, no matter who you are, you feel aged.   

I view this time of long distance education as preparation for that day when we opt to leave this planet.  We will have to endure long spans of hours without variety, in which strenous exercise and getting out is not a serious reality.  I have learned if I wasn't already sure, that I will be staying here.  

Food therapy has limitations and we've met and exceeded them.   
No amount of mindfulness, stretches or fun videos substitutes for the sheer variety of going somewhere else.   

There is one possible bright spot from this now six month long haitus from actual reality lived out in the actual world...we may shed our addiction to screens because they bore us as never before. 

Every day, I'm picking up a book and reading, going outside and walking, and art and writing with a pen holds a greater alure than the keyboard.   The reality is, we want a reality we're not having, even when we're doing boring things like bills or errands.

We want the tangible part of life we've had removed.  What we're all keenly aware of, is the lack.   
Wearing a mask is necessary, but it's the visible reminder of the lack.   Social distancing is necessary, but it's the physical and social reminder of the lack.  

Driving to get a little something for my youngest son, he reminded me to put on the mask in the drive-thru. He also punched in the phone number when I gave him the digits one by one...and I realized, these sort of moments wouldn't happen outside of the Covid-19 restrictions.  For him, this time with all of his family has meant he learned to ride a bike, to check out groceries using the self checker and bag them, to use the computer to mute and to show video on Zoom, to play video games with his siblings like Brawl, how to take a shower all by himself, how to wash his hair.  He's learned how to work with his Dad in the garden, and how to set the the table or clear it, and load or unload the dishwasher.  He's learned to feed the turtles and how to get out the ingredients for grilled cheese or for scrambled eggs.  He's become fully potty trained, and he knows how to make a bed even if he doesn't always do it.   He can hang a coat on a hanger.  He can operate the television better than me.  He takes down the garbage and can bring out the recycling.  All these ordinary skills came from having spools of uninterrupted time, where we couldn't exchange the present for efficiency.  

Perhaps it wasn't the lack that was missing, but us from the present.  

What is Our Response

We all shout, "Crucify him!" in the story of the passion because we all know, that's why Christ submitted himself to the crucifixion, because we needed Him (each of us) to save us from our own sinfulness, both past and on-going. 

Pope Francis in his Easter address, talked about how God is always full of surprises for us, because we can never imagine how wonderful our God is.  He even asked the question, "What about you?”

“What about me? Is my heart open to God’s surprises?” as a challenge to the faithful.  What is our response to the Resurrection?  If we believe it is reality, in our bones, everything changes, because death is not the final answer, and all we do is reflective of whether we believe this or not.   If we do not believe Christ died and was resurrected,  all that we do, good, bad or otherwise, is a waste of time, all of it.  We only do because we wish or do not wish, and to make life as we would have it, as much as we can.  If that sounds existential to you, it is.  (We were discussing Camus and Becket yesterday as one of my teens is reading such things). 

There's a common conceit, who we are is revealed by what we do when no one is watching.  The reality is, who we are is revealed by what we do when there's no visible, tangible or emotional benefit to us.  Our character is made manifest in what we do in the face of suffering. 

We watched, we cheered, we jeered, we invented new cruelties, we yelled, "Crucify him."  The saints wept, wiped his face, walked with Him, acknowledged Him, and offered him if nothing else, their presence.   We all say, "Crucify him," to remind us, that's our sinful response to God's love. 

However, this young man, Juan Pablo showed us, how we could have responded.  My own reaction was to find my own response to Jesus, meager by comparison, to see him as far more Blessed because he saw Jesus and responded accordingly, like the saints did.  He couldn't stop the crucifixion, but he could walk with Jesus and pat his back and be his friend. 

Blessed are the meek, they shall inherit the Earth.  

Over at Aleteia Today

Today, I'm writing about Down Syndrome, and how we need to be careful about falling into the trap of focusing on what people can do, as versus how much we can love.

Two Pieces for You for the Weekend

First, here's yesterday's link to Small Success Thursday

Small Success Thursday 

Hello everyone! It's Sherry Antonetti, here with some big news about Small Success Thursday! We're planning to have the weekly piece on both the Catholicmom.com site and on Facebook. It will make it easier for people to participate and share with others the opportunity to count your blessings each week. By posting your past week's blessings, you encourage others who might be having similar trials and triumphs. Additionally, cultivating gratitude encourages us the same way writing down goals helps one reach them, having a food diary helps one diet, and writing a letter rather than an email leaves a deeper impression. Telling the world what you are grateful for helps remind others to be grateful as well; it grows gratitude. Please consider being part of this weekly "Online Gratitude Journal" by posting three things from the past seven days for which you want to 1) give thanks to God and 2) share with the community of readers. Thanks for reading and being part of Small Success Thursday!

Also, I have a piece today over at The National Catholic Register on Down Syndrome and Unicorns.  I'm hoping that quirky description encourages you to go read and share it.

In case you're wondering if this time, it's not actually bad, it's just hype...no. It's not good.

Lastly, please please Pray for those in the path of Hurricane Harvey. I look at the models and think flood. Flood. Flood! and it makes me very nervous for everyone. It won't be the wind, it will be the rain that causes destruction this time around, and I'm worried.

Without Words, Always Inviting

It began as a consequence of reading three pieces.  First, I read a piece over at Aleteia on "Practical Steps to Keep Your Kids in the Church." and subsequently, a bit of Sherry Weddell's writtings over at Mark Shea's "Catholic and Enjoying it!" blog.

In December of 1990, Pope John Paul II issued these words of prophetic power in Redemptoris Missio:

God is opening before the Church the horizons of a humanity more fully prepared for the sowing of the Gospel. I sense that the moment has come to commit all of the Church’s energies to a new evangelization and to the mission ad gentes. No believer in Christ, no institution of the Church can avoid this supreme duty: to proclaim Christ to all peoples.

Since then, I’ve read hundreds of very critical, even sneering internet comments because the “springtime of the New Evangelization” didn’t just happen magically through bishops issuing a document or lay Catholics writing books. (Obviously, the sneerers aren’t gardeners or they would be able to recognize the “signs of the times”. The actual work of springtime is the most intense of all and that it begins in late winter and extends into early summer. Mid and late summer are the times when a gardener can relax in the midst of an abundant garden.)
In many ways, it was missional late winter when JPII published those words and late winter merges into early spring here in the Rockies. We had snow in mid May and the last frost here was on May 19. You spend late winter/early spring clearing the debris of winter and preparing soil for spring when it does come. You plan and order your plants and supplies and sharpen your tools. But you don’t *plant* until after the last frost.

You know that when “full” spring arrives, things begin to move really fast. You have been prepping for months and then suddenly, massive change occurs seemingly overnight. Full spring and summer also merge.

Note that JPII talked about committing our energies to TWO things, one of which we never talk about: “a new evangelization and to the mission ad gentes.” In 1990, it wasn’t as clear as it is today that the “new evangelization” has merged with the “mission ad gentes” which refers to the first evangelization of people who have never been baptized or heard the proclamation of the Gospel. With the emergence of “baptized unbelievers” (Vatican term) or “baptized pagans” (Pope Benedict), the rapid cultural change in the west has blurred realities that in a Christendom setting were distinct.

Millions of “Marginal” and “non-practicing” Catholics dropping the religious identity altogether and spinning off into a vague spirituality that rapidly morphs into functional or self-declared agnosticism or atheism. Increasingly, “Catholics” in the west are already functional agnostics before they bother to drop the religious identity.

More and more, we can’t start with a simple proclamation of Jesus and a warm invitation to come back home. We are going to have to get very serious about a new kind of mission ad gentes to the already baptized who are spiritually, imaginatively, intellectually, culturally untouched by the Gospel of Jesus Christ in any meaningful way. The categories of Christian and non-Christian are blurring in ways we never anticipated.

Now is the time to get really serious about “near” pre-evangelization” and “far pre-evangelization” for the millions who have experienced almost nothing of the faith but baptism as an infant or small child and were and are being raised by non-believing, non-practicing parents. Many who still have some extremely tenuous historic or familial connection to the name “Catholic” are a million miles away from the faith in every conscious and living way.

The work of late winter: building bridges of trust and rousing genuine spiritual curiosity about Jesus is the work urgently needed now in the post Christendom, post modern west. And it is something for which we have few structures, little vision, and little leadership – especially at the parish and diocesan levels.

This involves really leaving the ecclesial building. This involves a true “ad gentes” approach to the nations, going out to the far, far places of heart and mind and imagination for the sake of those for whom God become incarnate, lived, suffered, died, and rose again.  

I finished it off with Rebecca French's excellent piece, The Hardest Part is Watching...
I agree with her.  The hardest part is watching.  

The combination roiled in my brain.   We cannot "keep" our children in the faith, that is, we can do all the right things and still, they might drift or run away.  You can do everything and still, free will taps into the equation.  After all, God created Eden, He gave his first children everything and still, they rejected a relationship in favor of their own opinions. There isn't a formula, there's you care for them, you love them, you sacrifice for them, you witness to them, and you hope more of it sinks in than they admit.   Other than that, you have to hope and pray and fast against the age.

When I finished reading, I looked up the term "ad gentes."  It means, "to the nations," and is a term used in Vatican documents, as part of an address or decree.  We're called to evangelize ad gentes, omnes gentes if my Latin is correct, which after a quick google translate check, it is.   We cannot guarantee results, we are, as Saint Bernadette said, "to inform, not convince."  We still have that free will which means, we're always invited to the table.  It's will we come to the feast?  I went back to the problem.  How do we thaw the ground to plant the seeds?

The media dubbed the young adults of this age, "Nones."  "Nones" are people who belong to no community, no faith tradition, even if they've grown up in one.  It seems to be that for the newly minted agnostic in all but name, the number one common denominator is a deliberate indifference to the Divine; sort of a "I don't know if God is, and I'm not about to find out," boredom with all things beyond the present.   The "None" is a soul committed to being uncommitted and deliberately unquestioning.   Because they still are, because grace is still possible, they are like seeds sleeping.  To extend Sherry  Wendell's metaphor, it is Winter.  Snow and Ice cover the ground.  We need to begin the thaw.  Except I'm not sure how.   

The basic ways of evangelizing are Truth, Beauty, Love, Sacrifice, Miracles and Witness, but our age is soaked in Relativism.  Everyone believes, "there is no truth." and no one is swayed by the irony of saying, "there is no truth," being professed as a truth.  They do not see beauty as anything but aesthetics. Love is not sacrificial, or if it is sacrificial, it is too costly to seek or sustain. They do not see marriage as anything but a personal choice, and children are burdens, consumers of time and energy and effort.  All sacrifices are merely preferences; they hold no weight.  And miracles?  There are none.  Witnesses, well, that's just proof of your preferences.  The opposite of love is not hate, but indifference, and to me, indifference is the hallmark of the soul committed to not encountering God.  I'd managed to depress myself in the process. 

Then, I was tasked with writing a lesson for the Chapel room in my writing critique group, so I wrote:
Most people aren't converted by argument. Most people aren't evangelized by scripture quotations or sermons. Most people go deeper and deeper into their faith as a result of an encounter, and if you ask them about that experience, it's a story.  A story isn't sensation or feelings. We can't share your feelings just because you tell us, these are my feelings. We can't know your awe of God because you state, I am in awe of God. We can't even appreciate your being overwhelmed with God's grace or mercy or forgiveness unless we know the why of that experience.

It seemed to me, this is the problem with most CCD/instruction ABOUT the faith.  It is about the business of the faith, not an encounter.   How, not who.  Which begs the question, how do you introduce people who do not know Jesus, to Jesus.  I know how it isn't done.  Walking up to someone and saying, "Do you know Jesus?" is like walking up to someone and saying, "Will you be my friend?"  No one wants to answer yes, even if they might think "yes" in reality. We get a lot of direct frontal assault story telling in the Chapel room, the kind that uses sweeping generalities and sentimentality when what is needed is reality, and witness. I'd meant to try and illustrate how that doesn't work so I'd written more:

To give you a better sense of what I mean, I could tell you my son has Down Syndrome. He is often the means by which God lets me know how to love my children. Saying that doesn't really convey anything that doesn't sound like a cliché. Telling you, "he brings his family closer to each other," may be true, but that statement doesn't move. I have to bring you into the story, to bring about the revelation.  

I illustrated the point: 

Taking my son to the ocean, he filled his pockets with shells. Next he dug and flung sand on all of us. His joy at digging overwhelmed even his oldest sister's cynicism, and she helped him dig out a fort. Covered from head to toe in sand, he tackled his brothers to take him into the water. For the next hour, they held his hands and helped him jump the waves. When they wouldn't jump, he'd tell them, "Come on guys!" They jumped until their shins grew sore.

We hadn't planned to spend the whole afternoon digging and jumping waves. Some wanted to go for ice cream, one for a jog. Three hoped to return to the cabin and play computer games, and we had a pool waiting for us. Nine children ranging in age from six to twenty-four scrambled to build a massive fort big enough to withstand the first few waves of high tide. Paul had caught most of us in his play. However he wasn't satisfied with having 90% of his family with him, and began to search for the one sister who went jogging instead of coming to the beach, calling out her name.

His calling for her reminded me of when we serve dinner. He always wants everyone to come to the table, and won't sit himself until we either tell him, this is all there is, or everyone is seated. His desire for everyone to be there, mirrors my own. I always want everyone home. I always want everyone at the table, everyone involved.  

I cannot gather all my children as I once could.  Many of them are adults. However my son has no problem going to taking any of his siblings by the hand and leading them to the beach or to the table. He isn't about to be deterred by age or opinions. He simply wants them present. His simple desire for their company often brings them along. Sometimes, he calls and they come.  Sometimes, when they don't come, he seeks them out. All I can think is, "And a little child shall lead them," and who knows, he might.  He isn't interested in how they get to the table.  He's interested in who's at the table, and he wants them all.  It isn't full or complete or home without them.  

Who, not how.   He is warm, and he invites constantly, and never with words.   He trusts the invitation to do the work.

That's how we thaw, without words, always inviting.

He Keeps Surprising Me

My son's communication device has afforded us many moments we might otherwise have missed.  "Alligator, frog, bug" means "I want to watch the Princess and the Frog."  "Pig, porcupine, elephant" is how he lets me know he'd prefer to watch "Sing."  Some movies require a more direct approach.  He'll fall down and say, "Oh no!" if I pick the wrong one, but a fist bump followed by a fa-la-la-la-la means "Big Hero 6."  Using this method, I can usually figure out what show he wishes to see.

This past week, let me say, my fifteen year old and I had a disagreement.  We both took ourselves to our rooms to calm down.  Paul took his communication device and punched in the words "Love Faith, love Mom, Paul Love, eat food, love Mom, Love Faith, Paul love."  (It happened just before dinner).  

I thought an older sibling imitating Paul, typed in the words, but the words worked for both of us.  The next day, I met with Paul's teacher to visit a site for his schooling next year.  She asked if we'd put any new words in his communication device. (I hadn't).  She informed me he'd punched in, "Paul sister Bonnie come home today."  Bonn wouldn't be home until Sunday but still, the sentence made me think, maybe he did write the other note too.  

Still, much of Paul's ability to communicate is dependent upon the rest of us thinking about what he's thinking and more importantly, why.  Last night, I took him to Faith's play. Her school put on "Once Upon A Mattress."  After the show, Paul clapped enthusiastically, and stood up and clapped and yelled when the King took a bow.  He even ran over to shake the King's hand. 

The next day, I puzzled over why he found the character of the King so appealing and it was so obvious, I wondered how I ever didn't see it.  The King in the play is mute until the end, and spends his time using sign and gestures which his musician and jester interpret. He identified with the King. 
Now I wish I'd taken a picture of Paul with the King, but it does give me an insight into how he sees himself, and probably how he sees me...I'm guessing I'm the jester. 

All of which leads to why it is that this family needs Paul, all of which leads to why I wanted to share all of this as a story.   Bill Nye, science guy recently spoke with a panel about population control and the need to penalize families who have more than whatever it is that now is considered reasonable via policy.  My son would be in that stack of the unreasonable number, and I object to the idea, much less the presumption entailed in that discussion, that some people are extra, that some people are unnecessary, and that some people should decide how many children other people should have.  I object to using force of law to hurt those who don't agree with such "enlightened" policies.  

We would never get to Paul in that world.  We would never get to most of my children, and my life, and my family's life would be poorer for it.  However, returning to only focusing on the one child we know will not be a world player as it were, Paul is the one society might come to think most easy to whittle out because of his condition. 

Let me say,  Paul has an extra chromosome. Paul himself, is not extra.  He is not part of the surplus population, and he is not a drain on society, he is a breath of fresh air.  He is a gift, designed to reveal to the rest of us, to remind the rest of us, about what is and is not important.  He makes sure everyone comes to the table to eat.  He always wants a bed time story and prayers, he always wants a bath and he always picks and gives me a flower if he sees them when we're walking to the bus.  He dances with abandon, he enjoys slapstick and adventure movies and musicals, and greets  his sisters and brothers as if he hasn't seen them since forever. 

If there's extra beyond the genetic replica of a chromosome in a person with Down Syndrome, it's the gift of being able to love easily and love well.  I would say to Bill Nye, and anyone else who views my son or anyone else with a permanent mental and physical disability as extra or unnecessary, the world has plenty of people who work, plenty of people who are very smart, but it needs every person it can find, willing to love easily and well. 

A Tale of Two Stories

Simcha Fisher wrote a great piece yesterday about expecting their youngest, Corrie.  The article triggered a lot of memories of our own experience of Paul, which turned into my post over at Aleteia today, Down Syndrome and God's Delivery System.  Please go read, share, like and leave a comment.

Thank you!

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. 

Pigs Flying at Windmills....

This week, I read where Peter Singer (famed Bio-ethicist and Princeton University professor) gave an interview with Nina Streeck in a Swiss Newspaper.

I've made no secret of my contempt for his "ethics" in the past, when his own university page states the following:

“Newborn human babies have no sense of their own existence over time. So killing a newborn baby is never equivalent to killing a person, that is, a being who wants to go on living. That doesn’t mean that it is not almost always a terrible thing to do. It is, but that is because most infants are loved and cherished by their parents, and to kill an infant is usually to do a great wrong to its parents."


He's  also advocated granting personhood to some apes/chimpanzees, dolphins, and artificial intelligence (machines), while denying that same label to children like my son Paul, or like my father after Alzheimer's claimed his capacity to express his intellect.  

But today, he revealed his consistency of mind, that utilitarianism brought to its logical conclusion must reach.    

Q: If you were standing in front of a burning house, where 200 pigs and a child, and you could save either the animals or the child, what would you do?


Singer: The suffering of animals at some point so great that you should decide to free the animals and not the child. Whether this point is reached at 200 or two million animals, I do not know. But one must not be burned countless animals in order to save a child’s life.


I have to ask, (it was no where in the article), what constitutes countless?  How many pork bellies is a child's life worth? Or when does a child outweigh a pork belly in Professor Singer's calculations?   

The questions in my mind snowballed.

If a child might not be worth the cost of 200 little piggies, then would Singer advocate rescuing the babe if there were only 100 that'll do pigs trapped in the barn?


What if the burning barn held fifty prize winning some kind of pigs?  Would the child be worth saving then?


Or ten?   


What if the child had Down Syndrome, or was very young (newborn) or had any other disability and thus wasn't healthy like the pigs?   


My main beef with Professor Singer is his firm holding that some animals are more equal than others, that four legs good, two legs better, and the praise the world heaps on him for being so nuanced in his understanding of "ethics."   

Sooner or later, all of us will be weighed against whatever the going rate is for preventing the world from enjoying pulled pork, and when we don't measure up as a silk purse, we will be (by this sort of economic utilitarian thinking), worth less than a sow's ear.   

Crazy Stupid Miracle

My son Paul is six, and while he is very social and engaging, his world remains mostly silent. Down Syndrome makes talking difficult, and being capable of making his needs met other ways, Paul opts not to bother. We've done speech, we do speech. I know sign and we have velcro pictures for him to use to make choices, but most of the time, he points and says "Ahhh." or something with some vowel sound and everyone around him uses the context to discern, "It's too hot? You're thirsty? Did you like that show?" and he lets us know when we've interpreted it correctly with a high five.

Something about his younger sister becoming potty trained and starting to read jumped me up about his language. I began researching video programs that hold out the promise of breaking into his world, making words more alluring. However I've held back. They're expensive, and the number one thing required for any communication system to work is consistency. I hear from school he's very engaging, so I want to video tape him in his school environment and see what they're doing to get more out of Paul before I plink down dollars that might undermine what already is there via the speech therapists and teacher.

But words are something I love, and I want my son to have a world open to him. Words open the world. People treat you as a person when you can tell them, I want, I need, Yes, No, in a way they don't always feel obligated when a person is silent. I tried starting a conversation with Paul when we reached a light, he looked out the window, signalling to me, "Not interested."

We were in my husband's car running errands. Two of my kids were plugged into their phones, a third on a kindle, Anna is asleep and Paul staring out at a world that flies by without understanding. The silence bothered me, so I rummaged in the CD collection and popped in the Eagle's Hotel California. I'd bought last year as part of a Christmas present, which included tickets to see them live. The Eagles hold a place in my heart, it doesn't matter the song, I hear that steel guitar and it evokes my father, the beach house, my extended family and a sort of stillness I've only known at that home on the Bolivar Peninsula; people and places I can only have here in this world in my memory. My kids know all the songs and they're singing the lyrics of Hotel California with as much gusto as I did with all my cousins around bonfires while eating frito pie and charred marshmallows.

The next song is a favorite, we sang it whenever we'd bring home a new baby, "There's a New Kid in Town." I take the lead. Until I realize someone else is singing with me. He's humming. Paul is harmonizing with Glen Frey and Don Henley. I think I'm imagining things but he goes on, his voice rising and falling, it's mostly vowels but he's singing along. "Are you singing?" I asked. He nods.

We play the song again. The magic, no, the miracle begins again. Everyone is harmonizing behind him. "Johnny come lately...the new kid in town...everybody loves him...so don't let them down." I whisper a thanks to my dad who I know is singing along with his brother, the Desperado in the risen version of our long lost beach house. I get us back to our home, the high of it still there in my heart even as my brain tries to reassert itself, get a grip. I don't want to though, I want to hold onto the strains of the song and his singing, just like the memories of my dad and the beach. It doesn't make much sense to the world, or even to me why I'd get so teary over his singing/humming of a song. It's not functional or practical, it still doesn't help him get his needs met. But it's communication. It's singing for the pure purpose of making the sound and I love it.

As miracles go, it's crazy stupid. But it's also awesome.  Thank God is all I can muster.  I'm grateful just the same, for the crazy stupid breaking through the silence of my everyday.

"Look at Me."

It began with a discussion about labels for people with handicapping conditions, Down Syndrome, mentally handicapped and other common terms from the past on Facebook. 

My son is mentally handicapped and mentally challenged. He has Down Syndrome. Because I worked with the handicapped as a young adult and heard the word as a medical definition, I never minded mentally retarded until the word retard became a common slur. Now a days, it's a forbidden word in our home, as I don't want the stigma.  But I know labels matter.  It's important to know the reality of our son's condition, and the hurdles we face in teaching him and caring for him, so I have no problem with saying my son's intellectual capacities are limited, they obviously are. 

Anyone who looks at him can tell. He doesn't speak as much as a two year old, and he's six. He's not potty trained. He lacks a sense of safety and has to be held by the hand in public to ensure he doesn't just run. The problem with mentally handicapped, mentally challenged is the same problem with the labels Down Syndrome, idiot, mongoloid, and Trisomy 21 and any other label ever invented to describe a child with his condition. It only tells something of the story, but people tend to hear it and think it is all of it or that it is so much of the person, there is nothing else worth discussing about people like my son, or necessary to know. 

What someone who doesn't know Paul can't see are his talents and loves. He loves to sing loudly whenever the mood strikes. He dances and loves swimming. Every chance he gets, he plays with his stuffed dinosaurs. He goes outside with his brothers and sisters and never wants to come in no matter how cold the weather. He raids the refrigerator for any piece of fruit that hasn't yet been consumed. 
He's not emotionally handicapped, he feels things deeply. When he's mad at his sister, he has a phrase which tells her, I'm ticked. He'll say, "Heh heh." and she knows it's an insult and screams which leads to him again saying very calmly, "Heh heh." He will put his hands to your face and say "Look at me." when he really needs something, and he's always wanting to scramble into my lap for a hug.

The other day, I said, "It's time to go." and gathered my keys and purse. He left the room. I began calling,"Paul!" as I kept organizing, "It's time to go." and he came back carrying a hanger with my coat. None of my other children have ever done such a thing.

The bottom line is a label is a tool, used to convey something descriptive about a person, just as titles are tools of language used to convey a level of accomplishment or a relationship; Dr. or Professor, Father, Wife, Mother, Mrs. But what makes a person a doctor or professor or parent or spouse of merit, is what lies beyond the title; the depth of knowledge, care, wisdom, comfort, expertise and love put into the role. With Down Syndrome, the title is given via genetics from before birth and the person with that title spends their whole life trying to teach everyone around them, there's more to me than that, look at me.

"Look at me."

Be Not Afraid, I Promise You

I listen to Catholic radio.  It started when I decided listening to the news made me too angry and listening to music sometimes meant my toddlers knew tunes I didn't want them to know.  At first, it was just mass. I'd put it on while I cleaned the house and while I still grumbled when I found the occasional apple core or yogurt cup hidden by some hungry child who knew they weren't supposed to sneak snacks, I grumbled less and felt less irritated by the mere repetitiveness of having to clean again the next day with mass to look forward to as company.  All of Heaven and Earth could sing to me while I wiped down the counters.

Yesterday, I heard a husband who sounds broken, because his wife is afraid.  They are expecting their third child, and that baby has been diagnosed with Down Syndrome.  She fears the future. She fears what God is asking.  She is considering the unthinkable, thinking abortion will take away her fears, her worries.  Hearing the pain in his voice, I don't need to imagine the fear in hers, I've felt afraid of the future when I expected our ninth.  I know people whisper to you, "Abort. Try again. Do over." in so many words.  

But each of us is unique.  Each of us has a soul.  Each of us is part of God's masterful luminous joyful glorious plan.  It is only sometimes sorrowful because we live in this fallen place, but the divine reality of each of us being a gift is baseline.  I wish I could hug this woman and tell her what I know.

This child is a gift.  This child will be different, but the future is not unbearable, it is simply unknown. It just feels unbearable because all the unknowns come crashing down at once when you get a diagnosis of anything less than perfect.  

All children come to us helpless and with struggles we cannot yet know.  Some have severe allergies, others learning disabilities, some have tempers and others struggle with making friends.  Each child comes with an unknown future.  Oddly, with children who don't have genetic markers for conditions, we don't agonize about the future nearly as much, though they will still have to weather illness, school, bullies, frustrations, heart breaks, skinned knees, bad dates, bad haircuts, disappointments from others and from themselves and yet, we think only of the glittering promise of the unknown with genetically "normal" children.  I promise you, he will surprise you out of fear with his capacity and his love, and your capacity for love.

 Because this child has a fragile aspect you already know, holding him will feel all the more precious, all the more delicate, and you'll celebrate his speech, his walking, his everything as if it were winning the Boston Marathon, because for him, it is.  He will come and bring with him, the opportunity and purpose of many holidays and feasts.


I also promise you out there, if you are faced with a diagnosis of a child with a less than perfect genetic or physical or mental make up, this is not the end of your world, don't let it be the end of his or hers because you were afraid.  Love stretches our hearts the way pregnancy stretches our bodies.  We will never go back to being the smaller creatures we were, once we begin loving someone new.  And it's okay to be afraid, it's just  you have to know, you have to believe, you have to trust, that love is always always always, stronger than fear, stronger than death, stronger than all of the unknown.  

It is our job as parents to welcome each child into the present, and to show them as much love as possible in the present, and little by little, to chip away at how to make the next moment of the present, more luminous.   It's work. It's hard work, and it takes a lifetime, but every one of us requires a whole lifetime of being loved, none of us survive without constant doses.  

The last thing I'll tell you my unknown sister, is hold tight to your husband.  Hold tight to each other and God and it won't be all drudgery, it won't be all darkness.  You'll be stunned when the sun breaks through in your heart, and you find you can smile and even laugh, and all things again seem possible. 

 Please pray for this unknown sister and her husband, and for their family that they will be wrapped in love, wrapped in courage, and given the knowledge that this baby is a joy for them to discover, not discard.     This little boy is a gift.  He will grow all of their hearts, and he will be a source of light and joy to the world that seems to covet darkness.

P.S. I wasn't going to write on this, I'd already called in and asked fellow Catholic writers to pray for this family.  Then I looked at the Loyola 3 Minute Retreat for the day as I cleared out my inbox of emails.  I don't normally, but today, the Holy Spirit prickled.   If you haven't clicked on the link, the first words are from Genesis 22: 11-12.  "But the Lord's messenger called to him from heaven, "Abraham, Abraham!"  "Yes, Lord," he answered.  "Do not lay your hand on the boy," said the messenger..."  and so I'm writing here for whoever reads this, asking you to pray for this family, pray for their three sons, for their marriage, and for them to know God loves them all.

Like a Promise

Every once in a while, Paul's Down Syndrome announces itself by its differences. 

This past week one of the schools my son might attend next year held open house.  Within moments, I knew it wasn't a good fit.  The program lumped Kindergarten to 2nd grade level students with developmental delays into a single classroom and while I know each year a class dynamic changes, what I didn't see in any child anywhere, was someone who resembled my Paul.

There were some non verbal kids, but none as non verbal as mine. 
Some needed assistance with hygiene, but usually owing to a physical restriction, not a developmental capacity to willfully and consistently act.
There were kids with Down Syndrome, and yet I knew, I could tell, Paul would struggle to keep up with them on the playground and in the classroom. It did not feel promising.

I've been a special educator.  I know how a setting like this works, and I know when a child is the lowest or the highest by too much, there is tremendous frustration both for the child and the educators.  You want them to flourish, and with all the strikes against a child with developmental delays, you don't want to waste a year of instruction or even a day, in a placement where they will be bored, struggle, or simply not get the instruction and support they need to thrive.

As a mom, I felt protective and demoralized.  I didn't want my son alone.  I didn't want him isolated any more than necessary, and I could not see him being part of a group of friends when everyone there could tell the teacher and the class and even strangers what they had for dinner last night, and I can't get Paul to reveal what he's having for lunch while he's eating it.  It's an ache I haven't had to hold too tightly, as he is surrounded by siblings, he's been young, and he's small so his delay doesn't seem as great as it actually is when I put him in a classroom with children closer to the scale by which one is usually measured. But that day, I felt the weight of it, and the promise that the weight would only get heavier as time passed.

It happened again at mass, when Paul squirmed and chattered and laughed so loudly I had to take him out of the main body of the church and then even behind the double wooden doors, he proved his capacity to be mischievous leading to a hasty retreat to the basement.

Alone with my son, I really looked at him. His handicap doesn't normally plague my brain or my heart.  But today, it ate like acid on my mind. He's five. He's not potty trained.  He's five. He should be in Pre-school. He should know his ABC's and be able to count to ten and ride a bicycle with training wheels.  He should be able to walk to the car holding my hand and not require a death grip to ensure he doesn't bolt toward the street.  I groused at God, "I thought following you meant my burden would be light, the yoke easy.  This doesn't feel easy. I can't even stay in the back of the mass staring at it through the splinter crack of the two doors!" My heart whined with a two year old's "You promised."sort of pain.  My hurt must have shown on my face because another woman came down the stairs with her son, twice my son's size but also evidencing a developmental delay. 

I didn't know her, but she stopped and hugged me.  "Some days are like that." she said, and told me her story of her husband leaving before he was born, of her son being the same age as mine, and in a special program.  The bathroom momentarily forgotten, her son began racing back and forth in the hallway with mine in an improvised unspoken game of tag.  I was being shown, he wouldn't be alone.  Her son asked me his name, "I'm Stevie." he said.  Paul ran after Stevie and I heard something from my son that could be his name.   He'd keep up in his own way, and there would be friends for my son. It felt like a promise.

They'd sat behind us in the pew back when we were sitting in the pew.  I'd noticed the woman next to her,  a woman the same size as her, but with a face identical to my son's.  This lovely person hugging me took care of her sister for her parents when care was needed in addition to her own only child.  When we returned to the mass, I knew why we all had to be there that evening. It wasn't the normal mass time for either of us, but she had come with her sister and her son for me and mine.  Having her sister made her less afraid to have her son.  Having both made her able to hug a total stranger who was having a hard mass day because she knew the cross I was carrying, and how momentarily heavy it felt.  The stinking pity party I'd been having evaporated by the mere touch of the hem of Christ's garment.  The weight lifted, my heart lightened and all it took was a game of tag in the church basement and a hug.

We exchanged numbers and though I haven't called her yet (she told me she'd be on vacation this week), every time I see her name written in green colored pencil on the scrap of paper as I rummage through my purse, it gives me a bit of hope about Paul's future.  I've got another visit next week for Paul's placement and a play date to schedule with Stevie.  And his future, though as unknown as my own, feels like a promise of lighter days to come.

His 100%

It is a mother's fear, a mother's concern; that my son Paul is three and does not speak.  He's social. He smiles. He says some things. He dumps oatmeal on his head if I'm not vigilant.  He will open the drawers in the kitchen until I give in and give him a sippy cup with a drink.  He says RRAAHHH! That's the animal sound for every animal from deer to dog to dinosaurs.  He jumps up and down when the bus shows up and fist bumps when I say good job.  He puts his hands together for grace and tries to make the sound of the cross. He howls along what sounds like a muddled Alleluia in church whenever there is music. There is so much he communicates, but it is all emotive, it is all a matter of reading his face and knowing his voice and intent.  But the mother's fear remains, my son will not be seen as all that he is, or accepted. 

This weekend I read a story about a boy with Down Syndrome in the U.K. who is seven and has been denied the ability to receive first communion, because he cannot speak and cannot sit or tolerate the length of a mass. Based on my reading of the articles and analysis, the refusal is based on the fact that he cannot communicate sufficient understanding of the nature of the Eucharist. That is a legitimate reason for denial, but the parents thought the church was being cruel. Having been on both sides of the door, as the teacher telling the parent, you child cannot do this, and now the mother who faces that possibility, I can see how perhaps the mother thought that, and how perhaps the priest thought otherwise.

I understood that mother. My brain says, "I know that hurt." I also know that theologically, it is correct to not give communion to someone who is insufficiently capable of comprehending the nature of Holy Communion, if they cannot or have not in the past indicated the ability to know.  

It smarts and smarts and smarts and smarts to hear a door shut on one's child, whether it is because they did not make the team, they weren't invited to a party, or they cannot participate more fully in the mass. Having a child with Down Syndrome means you have to anticipate that there will be shut doors.  More accurately, having any child means you know there will be shut doors, but having a child with special needs means you are more acutely aware of some of the doors that might be shut.  Will he go to college? Will he be able to live on his own? Will he need care the rest of his life? Will he be able to find a job? These things can wake you up in the middle of the night if you let it.   Will he be able to receive the Eucharist?  It is something I've wondered since I had him emergency baptized at two months. 

So I get it.  I hope hope hope that four years from now, my son can go through the preparations and receive.  But I do not want him to receive incorrectly.  I do want him to receive.  I worry that I will let what I want, supersede my Catholic sensibilities.  Being human, it is quite possible that the mother ache will override my brain should he be denied.   

What gives me hope is this father and his son that come every Sunday to 8:30 am mass. The son is at least 18 and has severe autism, he does not receive, but he goes to mass. He stands and sits and kneels with his father. He is present, as present as his abilities allow.  He even turns and shakes our hands.  He wears headphones to drown out some of the noise if he gets stressed.  Christ meets us half way, 3/4 of the way, 99% of the way.  We are the 1 percent.  He'll even give us .05.  Christ will meet us wherever we are if we but try. For this son, coming and being at the mass, was his 100%.  It was all he could give.  This son and his father come. So Christ comes to him.  Spiritual communion counts. I know this, and it gives me comfort.  I may have to make my peace with this if when Paul is 8 or 9 or 16 or what have you, he still cannot reveal knowing that this food is not regular food.

So I pray for that mother and father and their son and the Parish, because I do not want any enmity between those who love the Eucharist.  Hopefully, their son will mature to be able to receive fully, and if not, that they will come to understand, that this is their son's 100% and Christ will meet him there.

Through Paul's Eyes

My sister and I call each other on an organic-wish-we-called-or-lived-closer-gee-has-it-been-two-weeks basis.  But we keep each other on our toes.  She with her new mom new eyes enthusiasm, me with my veteran don't fret about it vision.  The virtue of each is complimentary to the vice of the other.  She is the Mary to my Martha.  Sometimes, I can get a bit calloused, after all, I've done this for 18 years, but she doesn't let those bruises to wonder scab and scar over, she demands I remember, it's always new.  As she said to me, "If you get through all this and are jaded, you did it wrong."  and I hold to those words.
On a similar note, this week, a friend of mine told me, God gave me Paul as he is, down syndrome and all, so I would not be jaded.  She pointed out that I'd seen first step, first tooth, first crawl, first word eight times over before I got to him.  Now, I even had a daughter that was trying to catch up.  But with Paul, what are run of the mill actions for everyone else, are victories to be celebrated and savored. 

October 31st, I'd scrambled to assemble 8 costumes, including for my youngest two.  The oldest boy and girl took care of their own Halloween needs.  Not knowing if either my three or my 8 month old were going to cooperate, I'd dressed them in football/cheerleader garb so that even if they didn't want to wear the dinosaur or Tigger, they'd be appropriate for the school parade, party and subsequent Trick-o-Treating.  

Evening came and reassembling outfits after dinner was a chore.  Still, I started to get Paul dressed.  My husband didn't think it was necessary, as the little guy looked pretty cute in his Redskin jersey and jeans.  However, I put the outfit on Paul and he pulled down the hood of the dinosaur outfit and made an "Aaahhhh" sound.  I lifted the hood to see his eyes.  He pulled the hood back down and said, "Aaaaahhh!" again.  We hadn't thought that he would get Halloween. 

Well, he got it. 

That night, he walked everywhere.  He went to people's doors and knocked. He took candy. He said Trick-o-Treat and Thankyou.  He nodded his head and high fived.  He often went into people's houses when they came to greet him.  He loved it and so did we.  "Behold, I make all things new." came to mind.  

At mass, he did it again when we attended on Sunday.  Some of my children don't sing, they're teens and tweens, it's not in their nature to participate, they don't want to feel, they don't want to be too religious.  But they had not counted on Paul breaking through their hearts. 

Paul full throated sung when the organ began Alleluia.  He stopped when the singing stopped, he started when the chorus returned.  He knew it.  He nodded at his siblings and clapped for them. There had been some dullness in some of my children, a sleepiness that was rendered fully awake when this little guy participated.  The rest of the mass, those that were near their brother, sang with him, sang for him, sang because of him.  And the words, "unless you become like one of these..." floated into my head.  Paul was leading his brothers and sisters to be like him, to sing without hesitation, to pay attention, to be wakeful, to see the mass and this section of the mass with new eyes.  

The real beneficiary of Paul, is everyone in our family, for he keeps all of us unjaded.   He'll keep us from "doing it wrong."

7 Quick Takes Friday

1. It's been a while since I did this exercise and I don't have a piece ready to go because this week has been so crazy so I  figured it was time.  Plus, I happened to catch Jennifer Fulwiler on EWTN's new Register Radio show.  Now that school started, I'm trying to return to writing more seriously.  Here's hoping!

2.  Rosary Catch up.  I'm trying to do one a day.  Some days, it's all I can do to get through the Apostle's Creed.  Prayer some days is easy, other days hard.  It's like parenting.  Often, we get more out of it when it's hard, but like parenting when it's hard, we think we hate it while we're in the midst of the tough stuff.  Just when I think about stopping, someone asks me to pray for someone or something.  So today, I'm through a decade...yes I'll do another when I finish posting this...I promise.

3.  I fell off the Wii Fit wagon and I haven't gotten up.  I know, I just need to step back on, but if I go downstairs, I'm going to have to clean.  So I've been in full avoidance mode.  I don't want to be lectured by a machine.

4.  My oldest started college.  We are now on day three.  I suddenly understand why 18 years ago, my parents drew breath sharply when three days in I said, "I met a guy," dated him for the next six years and then married him.  Ten children later....it's surreal to see one's first start adulthood.  I tell myself I'm ready for him to be ready to start life away from us...but the heart tugs hard. 

5.  Paul is almost three.  In two weeks, we will celebrate his birthday.  I can't tell you how much joy he brings because every day, there is more. I am learning more from him about life than I did in graduate school when I studied Trisomy 21 while earning a master's in Special Education. Paul teaches me hands on, how boundless love can be. It reaches out beyond speech. It reaches out beyond age --he charms every one of his brothers and sisters, even the surly teen girl who pretends that she doesn't belong to this motley noisy messy lot.  It's hard to remember how frightened I was for him, it's hard to remember how sad I felt that he would have Down Syndrome, because very little about his life evokes those feelings now. 

6.  I'm reading a book on Anxiety.  It's a bit funny because most of the time, I'm not anxious, but it's teaching me how someone who is anxious responds to things as versus me.  My main problem with any books like "The Hyper-Active Child" and "Your Over Sensitive Kid" and the like is that I can fit almost all of my square peg kids into the round holes that are presented; I can find examples of everything from their lives making them a mish mash of every psychological condition ever devised.  If there's a lable for kids who spend afternoons running around the main floor in a giant circle pushing a doll carriage while having a conga line and screaming, they have that too.  It makes applying the techniques for dealing with any condition theoretically universally applicable; it also means those same techniques are in my family's case, universally ignored. 

7.  Podcasts: I'm considering adding them to this blog.  Like blogging, I know nothing about podcasts at the moment when I'm considering this addition other than it's verbal, it's me talking, and it might be fun.  The questions would be: Why? and Would Anyone Listen? My why is, there's something more intimate about talking than writing; it also would be a bit different. In addition, spelling wouldn't matter.  I could finish sentences with dangling prepositions.  Humor that could not be fleshed into a full fledged column could still be conveyed.  Why not is: Could I actually pull it off in this house without interruptions that would mar the listening experience?(piano playing, fights over the last piece of pie, tv, computer and radio background noise, babies and toddlers requiring attention etc). 

Final Note: Faith &Family September Issue is coming out and my piece on homework will be in it.
You can hear a bit about it here: Back to School Podcast. It's my first magazine piece and yes I'm psyched psyched psyched!

Kids Like Paul

My son is two and a half. He has blue eyes, a mischievous smile, loves dogs, balls and chugging my diet coke if it is in arm's reach.  He dances to any music, applauds at mass at the end of every song and will shake his head "yes" when you serve him cake.  He will then destroy the cake in a matter of seconds, becoming "Cakebeard the Pirate" to his siblings and require a long shower before bedtime. He likes dumping the laundry and pulling the Cd's out of just one bookshelf in particular.  He loves going to the pool but it takes him about an hour to feel confident in the water, then you can't get him out.  Paul can bark like a dog and vroom like a car.  He'll climb on any table, chair or bed so he can sit with you and he loves books.  In short, he's like every other two year old I've ever raised in every respect except he has the bonus of an extra chromosome.

Paul has Down Syndrome.

Most of the time, he wears this disability quietly.  It doesn't pinch the day, it doesn't dampen his mood or ours,and the actual quietness of his world is masked to me by his ever present and sometimes overly helpful next two older sisters.  Paul says very little, but he expresses much.

However this past month, the audiologist has indicated that he is struggling with a hearing loss that is the result of fluid in his ears (common for kids with his condition), and we are taking steps to remedy it. At these moments I'm reminded of what he faces and how everything is actually affected at some point by having that little extra chromosome, teeth, eyes, heart, hair, weight, height, speech, what he will understand, what sports he must avoid to prevent the likelihood of spinal injury, thyroid issues, and those are just the little things I remember from the instructive video "Your Down Syndrome Child" the hospital sent home in the complimentary diaper bag when we took him home. 

"Kids like Paul" have these sorts of issues. But these sorts of issues can be dealt with, by modern medicine, therapy and vigilance.  Children with Down Syndrome have bigger problems than all that come from having one more than everyone else.  That moreness is often fatal.

"Kids like Paul..." have historically been left out of society in a hidden home somewhere or institution, they used to be hidden out of shame. One wonders if that shame ever was eliminated as now-a-days, kids with Downs are eliminated before they ever get to show how much love can be packed into a smile. It is an ugly fact which even some people who work in the field of Special Education do not want to believe, but there are statistical studies including analysis by the Guttenmacher Institute that indicate 90% of all children diagnosed with Down Syndrome in utero, are then aborted.  Because their condition can be known, people have the luxury of deciding, "I don't want a handicapped child." ergo I will not allow myself to love a handicapped child.   For those who say that's harsh, I recognize it's an agonizing decision, it should be because choosing to kill a child rather than love it should cause agony --I'd be more appalled if it didn't. 

There are 5000 "kids like Paul" born each year in this country, thus there are 45,000 other children that were discarded. 45,000 ghosts that would have reminded all of us to slow down, to smile more broadly and to enjoy the great gifts of everyday life. 45,000 families each year that have willing allowed themselves to cut off a limb because they did not think that limb productive or necessary or perfect.  That's a lot of invisible loss. That's a lot of scarred wounded hearts walking on this Earth unable to address an ache they chose to inflict.

The thing is, for a society that promotes inclusion and having broad compassion for the poor and the weak, we have remarkably little patience with the perceived imperfect; be it age, disability, weight.  How are we as a society to become accustomed to differences if the range of possibilities is being ever more narrowed?

If science discovers a gene for diabetes or autism, will these folks simply get erased from the future as the 45,000 of 2010 have been?  Human nature and past evidence would seem to indicate "Yes," that all flaws that are detectable should be eliminated. What about ADHD, Parkinson's, MS, MD, Cystic Fibrosis and Tourrettes?  Somewhere in that list is a someone that you know, maybe even love.  Imagine a world without all those people peopling it. As knowledge of the human genome expands, will our tolerance of the genetic possibilities lessen?

There are certainly voices willing to say that we ought to spare these folks pain by eliminating them before they are born. There are certainly voices today that openly advocate abortion for children who have physical and mental defects when compared with "perfect children,"  sometimes even after birth and these are the so called smart people of our society who work at universities and write op-eds in the New York Times and  hold positions of authority and power in government. This attitude presumes the value of a person is economic and other dependent and thus only additional with effort having to be less than reward to make the proposition of care worthwhile.  The value of an actual person is always universal and multiplies out the value of others, people exist to grow the hearts of all around, each person adds to life simply by being.


None of us who have children with special needs wish our children needed special education to manage things.  None of us say "Yippee! My kid has a disability."  We do however rejoice daily in our children regardless of their ability and thank God for each of them.  We learn more and have more people in our hearts than our lives would have held if we hadn't been forced to rethink everything from dressing to feeding to school because we had a child with a disability.  It's said when you have a kid with Down Syndrome, you join a club of other families that have kids with Trisomy 21.  More accurately, you become part of a great adoptive family with special educators, speech therapists, occupational therapists, physical therapists, and all the other families you never would have met except for the fact that you see in the eyes of their child, your child's own.  Who couldn't do with more family, community and support in this world? This is the little extra that children with Down Syndrome bring.

It is sad to me that 45,000 "kids like Paul" will not get to be loved as Paul is loved by his brothers and sisters, friends and family.  It is sad to me that people decide sight unseen that it is better to never be born than to suffer being born known to be by others as "less than perfect." I've never known anyone to meet my son and say, "He's less lovable because he's less than perfect."  They've met him and loved his smile, his eyes, his happy happy, happy spirit.  His spirit is not suffering.  Those who spend time with him find, their spirits are not suffering either.  His joy (not his condition) is contagious.

Finally, being less than perfect ought to be known as a universal truth for all of humanity regardless of genotype, but being less than perfect, we forget that also applies to ourselves.   By the logic of perfection and no suffering, the whole human race ought to die out, for to live is to struggle and even suffer a whole host of pains.  To be human is to feel that emptiness as if one has never eaten even if a feast was set, to be able to be alone in a room full of people, and to in a moment sense how still time can stand when we ache and wish the ache would stop.   We cannot exist and breathe without knowing that this life is fragile and the relationships within it all the more precious.  The only thing that lessens suffering is love in action. Love in action comes most quickly and perfectly through others. 

No wonder our world struggles with pain so, we've thrown away a lot of others. We've rejected a lot of "kids like Paul"  and called it anything but what it is, a waste of a whole town worth of love a year; and we've done it out of fear of the other, fear of love, fear of service, fear of having our lives directed beyond our vision, and fear of how our lives would be altered.  How frightening to face a lifetime with people who have gentle natures and whose natural response to everything, is to smile and be happy and yes, dump one's Cd's from that one particular bookshelf. 

From a spiritual sense, the world would be deathly afraid of more "Kids like Paul" and prefer they never be seen, heard, known, born.  Each "kid like Paul" that survives the gauntlet of the womb softens a bit of the edges of life and brings that community of his or her larger adoptive family.  Each "kid like Paul" brings the corner of the world they live in a bit more love, a bit more proof that while we all naturally sin, our default desires in the deepest of our hearts is to love, to serve, to be part of a larger body than the island of our own selves.