Bilbo: Can
you promise that I will come back?
Gandalf: No. And if you do . . . you will not be the same.
I have never prayed more fervently, ached more
longingly, or cried more emotionally than June 15, 2013. I have never felt both closer to God and
farther from Him at the same time. My
heart reverberated with the poet:
It
darkens. I have lost the ford.
There
is a change on all things made.
The
rocks have evil faces, Lord,
And I am awfully
afraid.
Thomas had his colostomy taken down June 5th,
and returned to the operating room on the 13th for an exploratory
laparotomy because his abdomen was distended, he was in pain, and an x-ray
showed free air under his diaphragm. His
surgeon found a leak at the anastomosis, and Thomas’ peritoneum was filled with
colon contents. Despite antibiotics,
Thomas developed a bloodstream infection, and by Saturday morning the 15th
he was in septic shock and multi-organ failure.
His heart, lungs, kidneys, and liver all took a big hit.
My wife and I had been awakened early that morning by a nurse who said, “Thomas isn’t doing well, and we need you to be here to make decisions.” We watched as several attending physicians discussed what to do while residents, nurses, and respiratory therapists scurried about checking labs, adjusting ventilator settings, and providing input on Thomas’ condition. The team was waiting to hear back from a cardiologist when it happened: Thomas coded.
I watched detachedly as nurses and RT’s took turns
pumping on Thomas’ chest for 39 long minutes while his heart surgeon prepared
to cannulate the carotid artery and jugular vein. With each compression he bounced up off the
bed from the aggressive recoil. The
whole experience was surreal. The ordeal
stopped after the heart surgeon connected the lines in Thomas’ neck to an extracorporeal
membrane oxygenation (ECMO) circuit. This lifesaving machine does the work of Thomas’
heart and lungs for him, although it is not without potential complications of
its own. We sat down with the critical
care medicine attending who told us that there was a 40-50% chance of mortality
even on ECMO, to say nothing of brain function.
We enrolled Thomas in a large study investigating the potential brain-sparing
benefit of therapeutic hypothermia after cardiac arrest in children. It was only after all these heart-rending
discussions and subsequent phone calls to family members that I took an
opportunity to shower, eat, and take care of myself. In the shower the reality of the situation
caught up with me and I allowed myself to cry.
As the hot water washed over me I bawled, pleading for comfort and
asking God to spare the little life that has changed mine.
It has now been two weeks since the event. Thomas is still on ECMO. He is still on CRRT (a form of
dialysis). He is still fighting. He occasionally opens his eyes, which are
deep and expressive, and looks miserable with his cheeks squished and taped to
hold his endotracheal tube.
The toll this event has taken on our family is
immense. My wife has been at the
hospital the entire time with exception of a brief respite—less than 24
hours—to return home to pack up our three oldest, ages seven, five and three,
to send to Utah to stay with her parents.
I have continued to work during the week, making the three and a half
hour drive each way on weekends. Despite
the hardship, we have been blessed beyond measure. We have felt the love and generosity of
scores of friends, relatives, neighbors, and even strangers. An entire community of beautiful, wonderful,
giving people, separated by geography but joined in the cyberspace cloud, has
rallied behind our family. I have wept
for joy because I am once again witness to love exemplified.
I previously described Thomas’ entry into the world
as “harrowing.” That remains true; his
birth certainly did not happen as serenely and majestically as what Wordsworth
intimates, yet Thomas nevertheless even still trails “clouds of glory.” I believe he came to the earth from the realm
of God with a special mission to teach others to love, to unite them, and to
increase our faith in the Almighty. Anyone
who knows a child with Down syndrome knows that this is not unique to Thomas,
but he certainly is fulfilling his divine commission.
I leave you, the reader, with a quote from The Hobbit: An Unexpected Journey. Thomas has certainly taken us on an
unexpected journey, and he like a hobbit, the least estimable of creatures, the
most unlikely of heroes in Middle Earth, is causing a great tide of change in
the hearts of men.
Galadriel: Mithrandir, why the halfling?
Gandalf:
I don't know. Saruman believes it is only great power that can hold evil in
check, but that is not what I have found. I've found it is the small everyday deeds of
ordinary folk that keep the darkness at bay . . . small acts of kindness, and
love. Why Bilbo Baggins? Perhaps it is because I am afraid . . . and he
gives me courage.
Thomas certainly gives me courage. When I see the love that he inspires, when I
feel the power of the prayers to God in his behalf, and when I see the
generosity of many, it gives me courage because I see the evil that besmirches the
evening news held in check.