A Mother's Love: Tradition Maker, Memory Keeper, Warrior-ess

Saturday night is our Mass time.  Five pm.  Tom usually works Monday - Saturday, so by 5pm on Saturday evenings, we meet up with him at St. Vincent's on Market Street in Akron, across from his work.  We have a little community of friends we see there every week.  They range in age from 2 to 92.  They know us mostly by our boys and they make us feel at home.  That is part of the reason we love attending and one of the other reasons is Father Kraker who gives wonderful sermons.


His Mother's Day sermon was one for the books.  He spoke of the traditions his mother instilled in his family.  Of the religious traditions she shared.  Of her spiritual leadership of her family.


He then told a story of two tribes of people in a land far away.  One tribe lived in the mountains and the other tribe lived in the valley.  They battled fiercely for decades and generations.  During one battle the mountain tribe infiltrated the valley tribe and when the battle was over, the valley tribe realized that the mountain tribe had taken an 8-month-old infant back to their mountain.  The valley tribe was distraught.  They asked each other how they would ever get that infant back.  Who could they send to the mountain to retrieve the baby?  None of their soldiers were experienced enough in the mountain terrain.  They didn't know the climate.  They couldn't stand the deep terrain.  After days of debate, they finally settled on a team of their bravest and strongest soldiers to send up to retrieve the baby and up the mountain these brave soldiers climbed.


About half way there, they saw someone coming down the mountain and they immediately were on guard.  As the figure grew closer and closer they realized it was a woman.  She was carrying the missing child.  Finally she reached them and they said, "Who are you?"


She answered, "I am his mother."


If you are a mother, or even if you have a mother, you know this story to be true.  For mothers possess a strength, a fierceness and a sense of self-sacrifice that is stronger than any other.  


For my mom, for my grandmas, for my children's grandmas and all the "moms" (aunts, babysitters, friends, teachers) they know- I am grateful.


For the opportunity to be my babies' tradition maker and memory keeper and warrior-ess-- I am grateful.  

For the love of these amazing boys-- my cup runneth over.

Much like many things in life, the older I get the more I realize I have little to no control as to how the story goes.  


About six to eight months ago we saw a presentation by a woman who has a son with Down syndrome.  She talked about how he didn't say "mama" until he was four years old.  "Four years old!" I thought to myself.  Impossible.  Even as I thought it I shamed myself for judging and refusing to believe it could be me in her shoes. 


I have given Joey false deadline after false deadline.  By Christmas, by Valentine's Day, by Easter, by Mother's Day-- surely he would say "mama" by now?  He has said "dada" so clearly and so consistently for months now.  


And yet, why does it even matter?  Surely he would not require me to perform some trick or skill by a deadline.  Putting these false deadlines on him is the equivalent of him not wanting to give me hugs or kisses until I lose another 10 pounds.  It's so meaningless in the big scheme of things.  As he has shown us over and over, he will do his best in his own time.  For that, I love and respect him-- always and forever.


This Mother's Day I am grateful for the love of my family.  I am grateful for the opportunity to be brave for them, to help create traditions with them and to be the keeper of their childhood memories.

Tears . . . of Joy

April hit Super Joe hard.  He started out with pink eye.  Then he had to undergo general anesthesia for the Auditory Brain Stem Response.  Then he got croup.  Then an ear infection.  Then an upper respiratory infection.  The list seemed to go on and on.  


It seems he has a different plan for May.  A few months ago he finally started going from sitting to down on his tummy all by himself.  That was a HUGE milestone for him.  One of our next goals has been for him to go from being on the floor on his back or tummy to a sitting position. We knew it would happen at some point. We just didn't know when. I knew deep in my heart that one morning we would walk into his crib and he would be sitting up all by himself. 


Today was the day.  At 20 months old, our little man can now sit up on his own and we could not be prouder of him.  I can't even begin to explain what these milestones mean.  All good things come in their own time.  That is the lesson Joey teaches us every day.

I don't know why, but Tommy, Tom and I all went in together this morning to get Joey up and so we all were able to witness this together.  It was awesome!  We wooped, clapped and cheered for Super Joe.  He is starting to look much better except for the shiner under his right eye, which was courtesy of his older brother accidentally dropping the IPad on Super Joe.

What? This?  No big deal.  Just sitting here being awesome.

It's been a heck of a weekend.  Maryanne and the amazing folks at the Akron Bar Association sold all 100 tickets for the jukebox giveaway and raised $2,000 for the Up Side of Downs 2012 Buddy Walk.  They said really kind things about Joey and we spent the night jamming to some phenomenal bands.  We are grateful, humble and in awe of the kindness of the community.  We are also in awe of our own little Super Joe who surprises us every day.


Also!  Before I forget!  For the April giveaway-- Kelly Hoyt was the winner of the Wrecking Ball CD.  Congratulations Kelly!  I'll get the CD to you this week.


Have you had any tears of joy lately?  I hope so.  They are the best kind.

A Father's Birthday Tribute: "Jon Will's Gift"

Thank you to everyone who shared this wonderfully written piece by George Will with me about his son Jon's 40th birthday.  I read every single article people send me that is related to Down syndrome and I appreciate you sending me or telling me about them so very much.  I hope you will enjoy Mr. Will's article as much as we did.   

George F. Will

Opinion Writer

Jon Will’s gift

View Photo Gallery — Jon Will, who turns 40 this week, demonstrates how it’s possible to live with Down syndrome and live well.

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By George F. Will, Published: May 2

When Jonathan Frederick Will was born 40 years ago — on May 4, 1972, his father’s 31st birthday — the life expectancy for people with Down syndrome was about 20 years. That is understandable.

The day after Jon was born, a doctor told Jon’s parents that the first question for them was whether they intended to take Jon home from the hospital. Nonplussed, they said they thought that is what parents do with newborns. Not doing so was, however, still considered an acceptable choice for parents who might prefer to institutionalize or put up for adoption children thought to have necessarily bleak futures. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.

Down syndrome is a congenital condition resulting from a chromosomal defect — an extra 21st chromosome. It causes varying degrees of mental retardation and some physical abnormalities, including small stature, a single crease across the center of the palms, flatness of the back of the head, a configuration of the tongue that impedes articulation, and a slight upward slant of the eyes. In 1972, people with Down syndrome were still commonly called Mongoloids.

Now they are called American citizens, about 400,000 of them, and their life expectancy is 60. Much has improved. There has, however, been moral regression as well.

Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.

This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing.

Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society’s complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in “A Streetcar Named Desire,” always depend on the kindness of strangers. Judging by Jon’s experience, they almost always receive it.

Two things that have enhanced Jon’s life are the Washington subway system, whichopened in 1976, and the Washington Nationals baseball team, which arrived in 2005. He navigates the subway expertly, riding it to the Nationals ballpark, where he enters the clubhouse a few hours before game time and does a chore or two. The players, who have climbed to the pinnacle of a steep athletic pyramid, know that although hard work got them there, they have extraordinary aptitudes because they are winners of life’s lottery. Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming to Jon, who is not.

Except he is, in a way. He has the gift of serenity, in this sense:

The eldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life’s sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.

This year Jon will spend his birthday where every year he spends 81 spring, summer and autumn days and evenings, at Nationals Park, in his seat behind the home team’s dugout. The Phillies will be in town, and Jon will be wishing them ruination, just another man, beer in hand, among equals in the republic of baseball.

georgewill@washpost.com