An Unexpected Journey

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 5^th, and returned to the operating room on the 13^th 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 15^th 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.