CHAPTER 1
The Letter
Christmas was approaching. I was in graduate school earning myMSW at the University of Georgia. My parents asked what I wantedfor Christmas. I didn't want another sweater or shirt or pair of jeans.And then, after a pause, this idea came to me:
I'd like you to each write a letter to me. Write it as if it isthe last letter you would ever send to me. The rule is thatyou can't consult each other on it. That's all I want forChristmas; each of you writes me letters as if it was the lastI would ever hear from you. What would you want to say?
My mom, not surprisingly, wrote in her letter about finding Jesusand staying close to the Lord. But this is part of what my fatherwrote, which has stayed with me ever since:
Christmas, 1983
Dear Tom,
Well, this is a most unusual request; for your Christmaspresent, you wanted me to write you a letter (withouttalking to your mother about it) and write it as if it wasthe last letter I ever wrote to you. What would I say to myson if this was it? I'm 62 years old as I sit down to writethis; let's hope there are many more years ahead before thistruly is the case! Geez, where do I begin?
Actually, I've got to tell you that I have been ponderingthis for some time ever since you made the request overa month ago. Where would I start.... I've started thisa dozen times and hardly get beyond "Dear Tom" beforeI find myself crumpling up another sheet of paper. Eachtime I sit down to write, I draw a blank. How do I tellyou something I've never told you before? I've got so manythings to say but how do I say it? Where do I begin? MaybeI'll start at the beginning ... your birth.
I know, you hear about your birth story as each oneof your birthdays pass, by because your mother replays thewhole ordeal in "living color" to "celebrate" the occasion inthe re-telling of the tale. Since your mother is such a greatstory teller, I always let her take the lead as she regales uswith the annual story of your birth. God knows I've neverbeen much of a story teller! I'm not sure why I never toldyou my side of the story; perhaps I was always waiting forthe "right time" or when you became a man. But now youare 25 years old, in graduate school, and for some reason,now seems like the right time to tell you, so here goes.
When your mother's time was due we called the ambulanceand in 3 minutes flat they were at the door. Soon wewere racing down the freeway toward Chicago and LittleCompany of Mary Hospital at 85 mph when I heard theattendant say, "Her water broke!" Minutes later, as theybacked into the emergency entrance of the hospital, andpeeled back the blanket that covered your mother, I heardthe attendant then say, "Like hell that's water, its blood!"Apparently your mother's placenta had burst on the ridein. Soon your mother was whisked away in a stretcher asI was directed in to the Expectant Father's Room.
I paced back and forth in that room for about an hourwhen the doctor came in to apprise me of the situation."Your wife was touch and go for a while but I think wecan save her; I think she's going to make it. But your sonis another story; I'm not sure he is going to make it." Hepaused and then added, "It may not be a bad idea to justlet him go; he has a birth defect hand (none of the digitsare fully formed) and his face is all deformed. It would notsurprise me if he has extensive brain damage as well. I'mthinking it might be better for his quality of life and yoursif we just let him go and concentrate on saving your wife."
I paused for a moment as the reality of his words sunkin ... "brain damaged," "birth defect," "deformity"....My head began to spin with all kinds of thoughts, and thenI felt a rage well up inside of me, like I was watching ascene from a movie unfold before me; I found the wordspouring out of my mouth coming from a place deep withinme, a place I was not familiar with; I shouted "He hasevery right to live and you will do everything you can tosave him. I want to see him right now!" Later I foundmyself looking through a glass box at you with all kindsof tubes connected to you to keep you alive and I thoughthow easy it would have been to turn the oxygen flow offthe respirator and let you die. For some reason in thatmoment of standing over you, it must have been the handof God, I all of a sudden felt great peace, I knew you wouldmake it....
I never heard my father's side of the story until that momentalmost 30 years ago when I first read those words. It shook me to thecore. It dawned on me that I owe my life to the decision my fathermade in that moment, in that waiting room long ago. This man, whowas always in the background, always a mystery to me, a man whonever said much, never shared much, when it came time to step up,he did, he said yes to my life. And for that I am grateful.
I have often pondered what that moment must have been like forhim. Bringing a crippled baby into the world in the 1950s was verydifferent from today. It was not unusual at that time for parents anddoctors to collude and let kids born with disabilities die rather than tolive a life destined for multiple hospitalizations and institutionalization.The United States, and for that matter the world, wasn't a veryaccepting place for disabilities. The quality of life was not very goodat all for the disabled at that time. People with disabilities werefrequently segregated in institutions away from the public, and theidea of educating and employing them wasn't a part of our collectiveimagination back then.
And then I think about the desperation my father surely musthave felt as the sole breadwinner of our family. He was working twofull-time jobs to put food on the table and pay the mortgage, livingpaycheck to paycheck, with three kids under 5 years old. He almostloses the mother of his children and the love of his life and then heis told that his fourth child, his youngest, is severely handicappedand may be brain damaged. I often wonder if I would have made thesame choice if I were in his shoes. Would I have followed the doctor'sadvice and pulled the plug? Was the tougher choice to let me live?
Thus began the story of my life.
CHAPTER 2
A World of Difference
THE STARE
I've seen that look if not
a million times before.
Oh, it's changed over the years ~
people seem to hide it better as they
grow older, The Stare.
It's a stare that boxes me
into a fate
I cannot change.
A box that seems forever
to remain the same.
Please tell me if this really is
some kind of a game.
I may look different but
our hearts beat the same ~
I may need more assistance
but I'm not immune to pain.
Oh, please, once, just show me
that you care ~ I care.
My questions of why echo on
inside,
the answer seems ever distant
as I wait for a reply.
Don't get too close, don't spend too
much time.
Don't touch, don't share, no one
ever dares.
The stare comes back ~ it always
does, but seldom does
it care.
It follows me wherever I roam,
a stare that does not dare ask
me "why"?
A stare I see forever, inside.-- Thomas A. Reis, 1982
Amazing how decisions made in the moment, decisions made withlittle thought of consequence, can have effects that last a lifetime.
The last words my mother heard before losing consciousness thatnight were, "If we can't save both of them, then we go for...
