In the beginning...

Dr. Jerome Lejuene, discoverer of cause of Down syndrome

I discovered I was pregnant with my fourth child very early in February of 1984.  I was 42 and certainly not expecting to be expecting, but Jerry and I rolled with the punches and were soon changing our life course and making new plans.

Those plans didn't include the possibility of abortion.  The reasons for that are complex, because we were not members of any organized pro-life movement or organization.  It's more that we just loved new life, whether it came in the form of a seedling peeping up out of the ground, a litter of puppies, or...a baby.

So I rejected the amnio that would have told me our little one was busy developing an overabundance of chromosomes.  Midway through the pregnancy, I even had a mystical experience that I felt told me the baby would be a girl with Down syndrome.  But no matter. Life is life.  I figured if the universe bothered to tell me about it, it would tell me what to do about it.

In September of 1984, here came Miss Kelly Page Horton, 8 pounds, 7 ounces, bald and beautiful.  It was obvious from the moment she popped into the world.

Frankly, we were less than thrilled.  We were just getting back on our feet a few days later when we got news that she might have neo-natal leukemia.  At that point the mom and pop tiger genes in us rose up and roared and we knew we wanted this baby in no uncertain terms. 

When Kelly was five weeks old, the National Down Syndrome Congress convention came to San Antonio.  Daughter Martha and I drove down to see what we could learn. 

Talk about a revelation!  A doctor from the City of Hope in Duarte, CA, informed me that Kelly didn't have leukemia, but a "leukemoid reaction," fairly common at birth in Down syndrome.  He also said it would go away without treatment and she would bear no uncommon risk in the future.  Whew.

But we had also just received Kelly's karyotype, which showed, most curiously, four No. 21 chromosomes.  This was, needless to say, worrisome to us (and unheard of by our physicians).  If one extra chromosome could gum up the works, what would two do?

Fortunately, the very man who discovered the cause of Down syndrome was present at the conference. 

Jerome Lejuene was a French researcher, who in 1958 identified that an extra 21st chromosome causes the syndrome named after the man who first described it, John Langdon Down.

When I read that Lejuene was presenting a plenary session, I imagined he must now be very old, and I was surprised by the youthfulness and vigor of the man who stepped in front of the microphone.  In fact, at that point he was 57 years old; he had made his discovery at 34.

Unfortunately, the combination of his strong French accent, my own rather poor hearing, and the acoustics of the hall ensured that I caught very little of his message.  Still, I figured he would be interested in Kelly's karyotype, and I was interested in his take on it, so I stood in line to speak with him.

When my turn came he smiled and welcomed the paper I handed him.  He knew immediately of my concern, even before I said anything.  I will never forget his warmth and compassion as he explained that he felt certain she would develop typically as a child with Down syndrome.  I could feel that I was in the presence of someone very special.

First of all, he had come all that way to be with us, a random clutch of moms and dads with one thing in common.  It amazed me that he would do that.  I doubted that most scientists who had made a discovery of such monumental importance would bother much with the real-life consequences.

But as it turns out, Jerome Lejuene was far from typical in that respect.  In a sense, he spiritually adopted each and every child born with Down syndrome, and he cared deeply about their lives.  As pre-natal tests were developed to identify, and in most cases, eliminate the growing baby with Down syndrome. he began to speak out for their right to live.

The scientific community did not share his view, and over time he was in effect shunned, viewed as unprofessional, no doubt.

Yes, I was indeed in the presence of someone very special.  Today the Jerome Lejuene Foundation, established in his name, works on behalf of people with Down syndrome, funding medial research to work for "care and a cure." 

There is also a movement working to recognize the sainthood of Jerome Lejuene.  That he was one, there is no doubt.  I didn't identify it at the time, but it's what I felt in his presence: exceptional holiness.

He wrote:  Human genetics can be summarized in this basic creed:  In the beginning is the message, and the message is in life, and the message is life.  And if the message is a human message, then the life is a human life.

Amen.

Picture credit: Fondation Jerome Lejeune via Wikimedia (CC BY-SA 3.0).

Another detour on Route 21...

I saw a friend last night who'd been out of town for several weeks to be with her daughter for the birth of her first baby.  Almost before I could ask her how things had gone, she said, "We have to talk."

In that instant I knew that the baby had been born with Down syndrome.  She confirmed it and we hugged.

I was overcome with sadness for my friend and her family, even though I know this little guy is going to bring incomparable joy into their lives, touch many hearts in his lifetime, and teach the whole family how to reach deeper into the fountains of love and compassion than they had ever imagined possible.

But let's face it: that young couple didn't sign up to be trailblazers.  They only set out to do what millions of young couples do every year: start a family and have a normal life.  That dream has been shattered.  Other dreams will take their place in time, but for now the family is left to live among the shards. 

It hurts so bad.  It is such a heartache. 

One mother described her feeling about having a baby with Down syndrome as being like having planned the vacation of a lifetime in Italy, getting off the plane, and realizing you have wound up in Holland.  Now, Holland's a great place, but it doesn't match up with a lot of the hopes and dreams you had for Italy.

Still, I have lots of good news for my friend and her family.  First of all, as Kelly's pediatrician told us in the hospital, "You're going to have a great time with this kid."  This is so true, if impossible to describe and imagine exactly how.  Suffice it to say that Holland presents lots of unexpected delights!

But also true is this:  So much has been learned since Kelly was born about so many things that will make a real difference in this baby's prospects in life.  First there are all the infant stimulation and educational interventions, which make a big, big difference. 

Add to this is the fact that every day researchers are getting closer to unlocking the secret as to what causes the developmental delays of Down syndrome.  Trials on young adults with Downs are even now underway to test a promising new drug.  I am convinced these little ones will do everything their brothers and sisters do in life--grow up, go to college, have a career, get married, maybe have a family of their own.

All that said, my advice for today is this: Just take a deep breath, say a prayer, and fall in love with and enjoy that baby, one day at a time.  God knows the heartache, and God will bring the healing in time.

And all will be well.

Photo courtesy Google Images

No problem, really!

Here we are in San Antonio at the National Down Syndrome Congress Annual Convention being held at the J.W. Marriott Hill Country Resort. 

Jerry and I came down Wednesday, the staff arrived Thursday, we all went to pre-conference sessions yesterday, and Gena and Travis brought the Ranchers down yesterday afternoon in the bus.

What a change from last year, when we met at Disney World and were dropped off in the pitch dark in a veritable maze of unconnected buildings, amongst which were scattered our rooms.  In retrospect, we feel like we spent most of the conference waiting for a bus, sitting on a bus, or walking two miles from the bus to where we needed to go.

Here...wow!  All connected, all gorgeous, all accommodating, with a water park on site.  There's no crowding, smashed together feeling (except for last night at the Just Dance function, and that's how it was supposed to be).

And whenever I thank someone the heavens open, rays of sunshine beam down, and I hear these beautiful words, "It's my pleasure!"

Jerry and I noticed it right away, the glorious absence of the obnoxious phrase that has replaced "You're welcome," namely--NO PROBLEM, DUDE!"

OK, so you don't really hear the "dude" part, but you hear it in your head, or at least I do.  Jars me every time.  I thank you for something you did for me, even if it was your job, and you dismiss it with "no problem."  Like I thought it was a problem to begin with, which I didn't.

Guess I've turned into an old grammar crank but looks like Mr. J. W. Marriott is one, too, because I have not heard one "no problem" from any of the staff since I got here.

Jerry got to play the Oaks course, from which he returned happy if a bit crispy from the 105 high on Thursday. 

Casey, Lori, Calvin and I attended Dr. Chicoine and Dr. McGuire's workshop on health and aging in adults with Down syndrome yesterday.  We came away inspired, with a thousand ideas for new ways to help our Ranchers be successful in their lives while reducing situations that cause them needless stress and anxiety.  Most all the news from this workshop was good, except for one, namely that it really does seem that people with Down syndrome age more quickly than the normal population, that aging accellerates once they hit their 30s.

Later, as Casey and I waited out in front of the hotel for the bus to arrive with our gang we got to talking about the Ranchers, and how we miss them when we're away from them.  I ventured that I couldn't really imagine Casey functioning as a case manager with any other group of people.  She laughed and said that when she'd gone to "case manager" school all the case managers there wanted to be teachers and couldn't understand why she, a teacher, wanted to become a case manager.

"Of course the truth is, I only wanted to be a case manager for Down Home Ranch in the first place," she said.

I had asked Dr. McGuire, on behalf of us older parents who worry about the effect of our death on our kids with Down syndrome, if he thought intentionally making a video of all our family now while we're still functional and happy was a good idea, something that could be of comfort when we were gone.  Casey and I were talking about that, too, as we waited for the bus.

"The truth is," she said, "My hope is to hang in with this bunch as we all age together and then we'll all go together.  That's what I want."

Well, as my grandmother used to say, "Man proposes and God disposes."  Our little community will play out in ways we can't imagine. 

Meanwhile, we'll just dance.

Witnesses to their lives



Kelly, age seven, with wild plums



Jerry told me last night that he'd talked with a grandmother who'd gotten in touch with the Ranch wanting to donate several hundred dollars from sales of the book she wrote about her young grandson.  Of course we were delighted, and want to see that book, too.

I woke up this morning thinking about this grandma, anxious to hear her story. 

I know I will hear echoes of our story it it. 

We know this feeling so well.  In the weeks after Kelly's birth, little songs began to came over me as I rocked her. 

One went like this:

No less a miracle is my child,

Bright flower from an autumn garden.

Reaching for the sky, never stopping to ask why,

No less a miracle is she.

And did I ever really feel

This child was somehow just not real?

A child of no tomorrows,

Whose song no one would sing?

When this child brought the world to me

And opened up eternity

On life's unending wonder,

Of joy's eternal spring.

No less a miracle is my child,

My little flower from an autumn garden.

Reaching for the sky, never stopping to ask why,

No less a miracle is she.

I know I will this recognize this grandma's book for what it is--a testimony to the love this baby boy awakened in her and in her family, something real and tangible that says to the world:  This boy matters.  This boy has a wondrous life to live, too.

And we who love him will be the witnesses of it. 

Valentine Day

Kelly and Sterling on Valentine's Day

About a month ago Jerry told me he'd ordered tickets to the Valentine's Day Willie Nelson concert at the new Austin City Limits in the new W Hotel in downtown Austin.

Jerry knows I'm not a great fan of such, but even I agreed we'd best go see Willie while we still can, before he or one of us shuffles off the mortal coil.  So far so good.

But then the week before Valentine's Day, Kelly asked me about having a "Valentine's Double Date."  She was crushed when I told her we had plans.  You see, about seven years ago or so we took her and the boyfriend Sterling out on Valentine's Day, and as every parent of a kid with Down syndrome should understand by now, having done something once and liked it means you are now committed to a tradition that stretches to infinity and beyond.

So I asked Jer how about taking them out Sunday evening for dinner.  I called Martha House to see a) if they were available and b) if they wanted to go.

Is the Pope Catholic!?  Of course they wanted to go, and Sunday was even way better, it turned out, because the real Valentine's Day fell on Monday this year, and everybody knows Monday is Walmart Day, and you don't mess with Walmart Day.

When we went to pick Sterling up at the Spur, his parents were just finishing installing his new TV.  We chatted a while and then headed to Elgin to a Mexican restaurant.  Kelly and Sterling were their ususal irrepressible selves, goofing off and turning serious by turns.

Halfway to Elgin Kelly said, "We're almost done with the question book, Mom."  She was referring to 101 Questions to Ask Yourself Before Becoming Engaged, which she and Sterling have been working through with Casey the case manager and, on occasion, Casey's patient prince of a husband, Matt.

Kelly is in a fever to get married.  Sterling is rarin' to go some days but on others says, "I'm not ready yet."  Time will tell. 

After we'd dropped them off, Jerry and I reminisced about that first Valentine's Day double date.

Sterling at the time was still living at home with his mom and brothers in a rural area outside Elgin.  He and Kelly were in what I called the "Bambi-Filene" stage.  They'd been friends since childhood, and had always had a great time playing together.  Then adolescence came along and they weren't sure what to do with each other.  They got awkward and Kelly had no idea how to relate to Sterling anymore.  Sometimes she would not even look at him.

But later, when Sterling came to work in the day program of the Ranch following his graduation, their relationship cemented as they were able to spend time together on a daily basis. 

They broke up once, which caused a seismic wave to roll through all the counselors from camp who knew them, one of whom emailed in anguish, "I can't live in a universe where Kelly and Sterling aren't together!"

It didn't last long.

Last night they were discussing being together on the work team with Miss Naomi.  "We are professionals," said Kelly.  "No kissing until after five o'clock."

"That's right," chimed in Sterling.  "We kiss after five o'clock."

Sterling was happy to get back to his new TV and had plans for writing about our evening together.  Kelly was happy to get back to Martha House.  As we dropped her off, she turned to me and said, "Thanks for doing this, Mom."

"My pleasure, daughter," I said.  "I love you."

And I do.

Unless the Lord build the house...

The "New" Joseph House

 As one of the top builders in the world, Habitat for Humanity knows a thing or two about building houses--the most important being that if the people who are going to live in it help build it they will live in it with greater dignity and appreciation.

Why should people with intellectual disabilities be any different?  Well, they aren't, as these pictures show.

Kyle & Sterling insulating their new home

Kyle and Sterling are just two of a number of Ranchers who've signed up to help finish out Joseph House, where Kyle, Sterling, Travis, and John will move as soon as it's ready. 

Sterling learns to do the job right

Joseph House, like all the houses in the Village at the Ranch, has been built thus far through the goodness and generosity of other people--people who donate a little bit each month, people who created humongous foundations to benefit others, a family with no relation to the Ranch who decided to donate enough money to finance the entire outer construction.  Plus of course the army of volunteers who help just out of the goodness of their hearts.

A few years ago Jerry and I read a book called God Is the Good We Do, by UT professor of architecture Michael Benedikt.  The book is long and learned (and in very small type) but the gist is this: wherever there are people doing good, there is God.

I interpret this theory by imagining the written score of a symphony.  Is that the symphony?  How could it be?

No, the symphony exists only while the orchestra is playing it. 

Maybe it's the same with God.  God is good and good is God. 

People with good hearts didn't just give money to build a house.  They also gave money to provide an opportunity for Sterling and Kyle to learn important skills and help build their own home.

And we are thankful indeed.

Still Life

Waiting for the carpet cleaners to arrive, I was shuffling through boxes of photos and albums in our home office in Benedict House.

Naturally, I got distracted and soon was flipping through mementos of our former lives.

Dang! We were a pretty darned good-looking pair back in the day, despite eyeglasses the size of pie pans and clothing styles just recovering from the 70s.

Still, as Kelly always asks when she sees pictures of the younger me, “What happened?”

Well, life is what happened. We are old now, and—to quote the poet—covered with our lives.

But appearances are deceiving, as we know. We didn’t feel especially beautiful or handsome when those pictures were snapped, and we don’t feel especially old now that we are.

The reality of any stage of life is what’s going on inside, not what the camera catches. Shortly after those pictures were taken, Kelly was born and we learned that lesson big time.

Right after getting home from the hospital, our new friends Don and Jo Rettberg, parents of an eight-year-old boy with Down syndrome, advised us not to check out books on the subject from the library.

“They’re all depressing, and most of what they say isn’t even true,” said Jo.

But of course we checked the books out anyway, including one on “mental defects” that featured a young woman with Down syndrome, stripped naked, standing bewildered and alone under the harsh flash of the camera, glancing sideways down at the floor.

Welcome to the world, baby girl.

It could be that Down Home Ranch was conceived the moment we opened that book to that dreadful page.

Because Jerry and I had learned in the three short days of our baby’s new life that a diagnosis does not and never will describe a human being, and that the love burning in our hearts would be the true measure of Kelly’s life, and of ours.

That one photo kindled in us the fierce resolve to go anywhere and do anything to protect our girl and give her the life and the dignity she deserved.

And the young woman in the photo?

She has almost certainly passed on by now, but my heart still grieves for her.

How I wish I could let her know that we remember her, that we know how much more there was to her and to her life than that wretched photo, and how much she came to mean to us.

And that in part because of her, we built a place of beauty, and love, and dignity for those who followed.

That Extra Chromosome!

Kelly's 25th birthday party in the Pavilion with all her buddies.

On a recent trip to Kansas, at about mile #569 a voice chirps from the back seat:

“Mom!”

“What, Kelly?”

“What does that extra chromo, chromso, chromodome do?”

                                  Above: Karyotype Trisomy 21

She was talking of course, about the extra 21st chromosome that causes Down Syndrome. Our talks about her disability had advanced into genetics (though I must admit my level of understanding is about on a par with hers.)
                                                                  
It’s been a long journey.                                     

As a very young child Kelly blended in seamlessly with the other kids at her Montessori school.

Later on, in public school, that innocent time was lost. Some classmates were kind, most indifferent, and some problematic.

Kelly handled the schoolwork itself well up until fourth grade, when the curriculum became more abstract and she began to fall behind.

Then one day her social studies teacher, wanting to pass on some good news in a year when it was becoming scarce, told me a story about what happened in the classroom that day.

The students had formed two lines for a history bee. The subject was life in Texas during the 1800s, and the question that fell to Kelly was “What did the cowboys take to Kansas on the Chisholm Trail?”

When the teacher read the question, she said that Kelly’s team began to moan and groan, thinking she wouldn’t know the answer and they would lose the bee. But Kelly hung her head and whispered shyly “heifers.”

Most of the kids on her team were upset, thinking she’d got it wrong. But a few ranchers’ kids started saying, “Kelly got it right! A heifer’s a cow. Cows are what they took. We win!” The teacher agreed.

A triumph, yes, but bittersweet at best, and the story itself enough to convince Jerry and me it was time to get Kelly into an educational setting where she could enjoy more success than failure. The next year we moved her into the Life Skills classroom at the middle school.

It was a good placement, and she did well there. And confronted with a wide array of disabilities in her new classmates, Kelly became more aware of her own.

We’d never hidden the fact that she had a disability, and its name was Down syndrome, but she’d never been that interested. Then one day she got out her Where's Chimpy book and stared at the pictures of the little girl who searched for her stuffed chimpanzee.

“She looks like me,” said Kelly.

“She has Down syndrome, too,” I said.

“Oh,” said Kelly.

So on and off we talked about it, and its causes, and that pesky extra chromosome, and although once during high school she declared hotly, “I don’t LIKE Down syndrome!” these days she seems pretty much at peace with it.

Maybe that’s because now most of her good buddies at the Ranch and off have it, too.

At Down Home Ranch we’re routinely accused of not “getting it” when it comes to our effort to build a community in which our daughter can enjoy a good life among friends with similar interests and abilities. The academics and agency people feel people with Down syndrome and other intellectual disabilities should live independent lives in the city.

Well, we checked out living options for adults with disabilities when Kelly was a toddler. We didn’t like what we saw. The people seemed lonely, often living with people they disliked or found threatening, having limited opportunities to go places and do things.

We wondered, “Where will Kelly’s circle of friends come from? Who will invite Kelly out for pizza and a movie?”

Friends of kids with Downs in high school reported they got lots of high fives in the hallway, but no invitations or offers of friendship, unless they were part of some organized (and always short-lived) project. After high school, most kids wound up sitting around the house with nothing to do, with a “tagalong life.”

You know, tagging along when others went about their errands or social life.  "Hey, Kelly.  I'm going to the library.  Want to come along?"

We thought our daughter deserved her own life, with the chance to make real choices, and earn money, and interact daily with a group large enough that she could pick her own friends.

That’s why we founded the Ranch, and it works.  If it stops working for Kelly or other Ranchers, we'll help them find a different model, but for most, right now they are able to enjoy their young adulthood like other young adults--learning to work, get along with peers, and have a rich social life.