Not the Post I Wanted to Write

This is not the post I wanted to write.  It has taken me over two months to even gather myself together to write it.  Given my penchant for allusions to other works of art or literature that are meaningful to me, it follows that the post I wanted to write is called: The Boy Who Lived.  This is not that post.

After 6 weeks in the hospital, Thomas lost the battle against pulmonary hypertension—high blood pressure in the right side of the heart and lungs.  He fought harder and with more bravery than anyone I’ve ever seen.  He came off ECMO after 27 days, and looked ok for a couple days before his pulmonary hypertension, which had been mild, started a downward spiral out of control.

I continued to work in Richland during this time, video conferencing with Thomas’ physicians when I could.  I continued to pray for miracles.  I knew if it was God’s will, Thomas would be healed.  I learned to accept that, like Abraham being willing to sacrifice his son Isaac, I had to be willing to let Thomas return to God, sacrificing my own will to keep him.  Once I offered my will, Thomas started trying to depart mortal life.

I received a phone call from my wife to drop everything and leave for Seattle immediately.  I went as fast as I dared most of the way, only to hit the rush hour slow down outside of Bellevue.  I painfully crept along I-90 and discovered just before the I-405 exit that the 520 bridge was temporarily closed.  Consequently the traffic over the I-90 bridge to I-5 was stop and go at speeds of 10 miles per hour at best.  I constantly prayed that I would make it in time.  My wife later told me that in the hours leading up to my arrival, Thomas’ blood pressure and heart rate began dropping on several different occasions, and each time she told him, “Thomas, you have to wait for Daddy to get here.”  His heart rate would then come back up, and his blood pressure would follow.

Thomas and I had about an hour together.  I held him and sang to him and wept for him.  I kissed his little cheeks and told him it was okay to go.  I placed my hands on his little head, and by the ancient priesthood authority of Melchizedek that I bear, commanded Thomas in the name of Jesus Christ to return home to the Father of our spirits.  Immediately his heart rate and blood pressure dropped precipitously and continued to trend downward.  We turned off the monitors and unhooked him from the ventilator.  He was pronounced dead at 7:29 pm, July 17, 2013.

My wife and I left Seattle that night with heavy hearts.  The weeks that followed were filled with tears for Thomas’ departure from mortality, joy that we were finally able to see our other children who had been staying with grandparents for five weeks, and relief that his suffering was over.

Thomas taught me much about life and love.  Though a small child, he was a giant among men.  He was, as my younger brother so perfectly put, “a little friend to all.”  The week after Thomas’ death, we were at a public pool in Utah where our children were taking swimming lessons, and I saw a man with Down syndrome come into the locker room.  I did something I never would have done before Thomas came into my life.  I smiled at the man and said, “Hi, how are you?”  His response brought me immeasurable joy: “I’m awesome!  And so is everyone else!”  About a month later our family was at a restaurant where we sat near a couple who had an adorable little boy with Down syndrome.  My wife approached their table first, and I followed after helping our four year old with his dinner.  When this couple learned about our loss, the boy’s mother asked my wife, “Do you want to hold my son?”  She passed him to my wife, and I fought back tears.  These complete strangers offered their child to us, for just a moment, to fill a need and void in our lives that nothing else could replace.

I still lie awake most nights thinking about Thomas.  The loss of this little boy born with a hole in his heart has left a large crater in mine.  Today is his first birthday.  I imagined celebrating this day very differently.  I had hoped it would be a party for the boy who lived.  I still feel his spirit near, from time to time.  One day it will be reunited with a perfect body in the resurrection.  Like Christ and because of Christ, the author and finisher of my faith, Thomas will live again.  That glorious day we will have a party for him, the boy who lives.

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.

Changed . . . For Good

Thomas smiled at me as I held him in the ICU, a few weeks into his hospitalization status post open heart surgery, and began singing to him what has become our song:

I've heard it said

That people come into our lives for a reason

Bringing something we must learn

And we are led           

To those who help us most to grow

If we let them

And we help them in return

Well, I don't know if I believe that's true

But I know I'm who I am today

Because I knew you . . .

Like a comet pulled from orbit

As it passes a sun

Like a stream that meets a boulder

Halfway through the wood

Who can say if I've been changed for the better?

But because I knew you

I have been changed for good

I’m the first to admit I always dreaded having a child with Down syndrome (Trisomy 21).  My wife and I promised ourselves we would be done having our family by age 35 because we couldn’t accept the increased risk of aneuploidy that comes with advanced maternal age.  With all my wife’s pregnancies we declined early genetic testing because we told ourselves that we wouldn’t terminate a pregnancy, yet we always hoped and prayed that our child would be normal.  It’s not that I ever had anything against people with disabilities; I just didn’t know how to relate to them.  I didn’t know what to say to them or how to interact with them, so I conveniently ignored them.  I didn’t know how to love them.

Thomas’ 20 week ultrasound didn’t show anything wrong.  In fact, it didn’t show a clear picture of much at all.  It was on a subsequent ultrasound a month later that our obstetrician saw a possible heart defect that catapulted us into, what is for many expectant parents, the nightmare world of perinatology, high level ultrasounds and fetal echocardiograms, genetic testing, and prenatal cardiology.  “Yes,” we were told, Thomas had a heart defect—a significant one.  The one most commonly associated with Trisomy 21.  Lucky for us, a new genetic test was available with nearly 98% accuracy and no risk to the fetus, unlike with amniocentesis or chorionic villus sampling.  “Yes, lucky us,” I thought sardonically.

I vainly wished and hoped and prayed for all the wrong things.  I pleaded that Thomas would be normal and that his heart would spontaneously mend and be all better by the next ultrasound.  I begged God that Thomas wouldn’t have Down syndrome or Edward or Patau syndrome or any other syndrome.  I didn’t want this to happen to me.  I wanted all my children to be brilliant—erudite scholars of great renown who would one day change the world.  What parent doesn’t want his or her kid to be smart? 

When our obstetrician delivered the test results, he added that it was ok (even in the context of our shared faith) to think about terminating the pregnancy given the serious physical defects.  I’m now ashamed to say that after this physician gave us the option to mentally go down that road, I wondered if we were doing the best for this soul allowing him to be born with such defects.  In truth, I wasn’t worried as much about how the condition would affect the child as I was about how it would affect me.  I am eternally gratefully that my wife insisted on keeping this child without any hesitation or reservation. 

I called my mother after receiving the test results, and I will never forget her response when I told her that our little boy tested positive for Down syndrome: “Lucky you,” she said, not a hint of sarcasm in her voice.  She proceeded to tell me about one of her clients, someone with whom I went to high school but have not kept in contact, who adopted a child with Down syndrome.  “This child has been a huge blessing to their family,” she said, “In fact, anyone who has one of these special children will tell you what a blessing they are.  So yeah, lucky you.”  I used to think that people who said that were giving themselves the equivalent of a participation trophy, but something in that moment that I can only describe as an act of God made my heart begin to soften.  I really did begin to feel lucky.

Through several other personal, sacred experiences I began to see Thomas coming to our family as a divine blessing.  I looked forward to meeting this special child when he came, as I imagined he would be, “trailing clouds of glory.”  His actual birth was something a little more harrowing.  He was born by emergency cesarean section after a few dangerous heart decelerations during routine monitoring and an ultrasound that showed no amniotic fluid.  As a medical professional I remained calm—summoning the same clinical detachment I’ve needed on multiple occasions watching patients die—but was inwardly horrified when my tiny, cyanotic infant failed to cry or to move or to pink up during bag mask ventilation.  I pleaded with God for his life while he was suctioned and intubated.  I wanted every possible intervention for Thomas.  My heart had been changed and I felt nothing but love for him.

I now write this in Thomas’ hospital room on the surgical floor at Seattle Children’s where he is sleeping peacefully.  He has endured three surgeries and over two months of hospitalization during his five and a half months of life.  Yet, I never wonder now if we did the right thing keeping him, despite all he has endured.  This refiner’s fire is not for him, but for me.  I hope that in the end I will be as good a person as he already is.

At the risk of sounding cliché, my family and I have been blessed beyond measure through all of this.  We have received kind notes, monetary gifts in excess of thousands of dollars to defray travel expenses and medical bills, and offers to watch our three other children.  People we had met only briefly opened their homes to us when we needed a place to stay.  Many of these individuals gave not of their abundance, but the widow’s mite.  We all have been touched by a spirit of love and compassion that Thomas has brought to the world and that seems to radiate from him.  Our friendships are richer.  Our older children have become more caring.  Our desire to help others is stronger.  Our lives are fuller because of him.

I now come to my point.  I don’t know the latest statistics on how many fetuses with Trisomy 21 are aborted (at one time I know anecdotally it was quite high), but I must say in the strongest terms of which I am capable that this practice must cease.  Perhaps not every expectant mother is ready to raise a child, much less a child with extraordinary needs.  There is a solution: adoption.  I recently learned that there is a waiting list to adopt a child with Down syndrome.  Some couples wait upwards of three years for one of these children because they, unlike me before having Thomas, already know just how truly awesome these children are.  To any expectant parents who are struggling to decide whether or not to abort a fetus with Trisomy 21, I plead with you not to shortchange yourselves.  If we do not stop aborting these children, we collectively rob ourselves of the noblest, best, and brightest members of society—the ones who really have the power to change us and the world for better.

My eyes filled with tears as I quietly sang the following verse from Stephen Schwartz’s For Good to Thomas before telling him goodbye as I prepared to leave Seattle to go back home to resume work a couple weeks ago.  As I left the hospital I played the words over in my mind, knowing I have been changed for the better.  I have been changed for good.

It well may be

That we will never meet again

In this lifetime

So let me say before we part

So much of me

Is made of what I learned from you

You'll be with me

Like a handprint on my heart

And now whatever way our stories end

I know you have re-written mine

By being my friend . . .

Like a ship blown from its mooring

By a wind off the sea

Like a seed dropped by a skybird

In a distant wood

Who can say if I've been changed for the better?

I do believe I have been changed for the better

And because I knew you

I have been changed for good