Sebastian

There are no highs without the lows.

I felt my phone vibrating, sitting in the theater facing the big “TED” sign. Then that hot spark of true fear. My heartbeat fluctuated wildly. My eyes blurred as I read the message: “call me NOW.” The TED Talk speaker's words became a foreign language I was incapable of comprehending.

My wife bought me the event ticket. She knew where I was. Why would she be calling?

“Every time his head touches his mattress or I touch his head, he cries,” she exclaimed. My second child. My only son. Six days old.

I raced home. Then to urgent care. Then to the Children’s Hospital. They saw us immediately. Never a good sign. 

They began a litany of tests. He was not allowed to nurse. The veins in his arms were too small to insert a tube, so they ran it into his head. The world spun out of control. Brie and I were lost and broken. It felt unnatural and cruel. From the sofa in his hospital room we laid together, facing him in his rectangular clear plastic bed, wires spilling over the sides, embracing each other in silence as the tears fell. We were alone. 

Seven years have passed and I stand at the peak of the next summit. The valley of despair and sorrow are now in the past. And my two feet, firmly grounded into the rich black soil, pointed directly at the path traveled. My gray green eyes tracing so many of the switchbacks. They remain bright and clear, but new wrinkles mark the toll this journey has taken. I remember what it took to reach this point. It was a cruel path. 

Yet, from this height I do not weep. 

Nor, do I say thanks for the pain, nor for the anxiety the unknown wrought.

I would still change everything.

Maybe, gratitude will come after the next summit. Maybe then I will thank God for the suffering. Or more likely, I never will. 

But what I do acknowledge is that without this journey, the depth of my love for my son, my two daughters and my wife, would not be what it is now.

Towards the end of this season I read The Prophet, by Kahlil Gibran. He wrote, “Your pain is the breaking of the shell that encloses your understanding. Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.”

Seven years have passed since that fateful day. 

Year one was the blood clot that led to the stroke. Cerebral palsy and the terrifying unknown. We just needed to survive every day. 

In year two and three we found our footing, somewhat. Weekly physical and occupational therapy. Neurology checkups twice a year. A left foot brace helped him walk at 20 months. The worst of my heart palpitations had ceased. We both returned to work. 

He is going to be ok. 

By year four he was running, jumping and flying his spiderman kite on windy Oregon beaches. I hovered, but maybe less so. He only wanted to eat PB&J sandwiches. He hated broccoli. Normalcy. When he fled his chasing sisters down the playground slide, his laugh was so carefree. 

Year five was the next season of grief. COVID. Seizures and epilepsy. I was lying next to him in the hospital bed, which was three times as long as him. Five year old boys are not supposed to be in hospital beds. Wires were spilling over the sides and connected to machines that would not stop beeping. It is impossible to rest.

The anxiety and depression I thought had withdrawn returned. Instead, sleep escaped me and counting sheep simply led to a lion that devoured the young. 

Tingling and numbness in my left arm led to an emergency room visit. It was not a heart attack, just a panic attack. Every future day was filled with unknown fears. My faith was shaken. Where is God? 

Yet, my son was ok. He is happy. He loves his sisters and his mom. He is a daddy’s boy. 

Another seizure and visit to the emergency room. Increase the dosage of Keppra, his anti-seizure medication. 

Again, he’s ok. He still wanted PB&J sandwiches. He yelled at his sister because she would not let him watch Lion King for the third day in a row. He must have all his dinosaur toys in the bathtub or else he would not wash his hair. 

I too was ok. I hugged him more tightly when I dropped him off at school, but only missed one day of work. I met a friend for a Jaminson on the rocks and only cried during the first minute of conversation. Our family went back to church.

Year six and seven were triumphant. We left Portland, Oregon, sold much of our belongings and took a long rejuvinating sabbatical. All five of us, together, exploring the marvels of the world. Abundance and delight. 

The road trip began in my dad’s hometown of Muskogee, Oklahoma. We saw alligators in New Orleans and chased seagulls on Florida beaches. 

Can we visit 100 Irish castles? In Galway I heard Wild Rover performed live, with the best beer in the world, Guinness, in hand. After searching every lough, river and bay for over seven weeks, we finally found the baby swans. The time together was precious. There were no seizures. 

Year two of our sabbatical was in Mexico. Our rooftop condo had a pool steps from our door. We swam every day. Tacos de chorizo y quesadillas sencillas. Let’s try the octopus. Delicious. A culture that loves and embraces children. Nearly every restaurant had a playground, trampoline or kids’ play area. 

He learned to fence. He’s the youngest but in his second competition, he finished in third place,  out of four. And that surpassed all expectations of what I thought possible on day seven of his life. 

If not for what took place on day six of his life, would we have taken this sabbatical? Would we have weakened our financial future? And would every moment be this sacred? 

Would we know that life is a vapor, a mist, a puff of wind? Life is hebel.

From this summit over the Colorado Rockies, the sun is beginning its brilliant descent behind me. The gray hairs at my temples have multiplied exponentially. I can no longer sleep through the nights as the faintest sounds remind me of seizures past. Guilt appears rapidly if I do not spend at least 15 minutes daily reading with him. Too often the yoke is heavy. 

And now at 6,035’ elevation I wrestle with the unforeseen outcomes and competing convictions that have emerged. Again from Gibran, “The deeper that sorrow carves into your being, the more joy you can contain.”

We are committed to living an intentional and adventurous life. We will forsake more wealth for quests to find Irish baby swans. We will leave work early to watch our daughter, on her Appaloosa horse, leap over the hurdles; even the magnificent snow capped Rockies that tower above the equestrian center cannot compete with her smile.

Francis Weller said that, “The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them.” 

I am not yet mature, because I would still change everything. 

I think. 

I would not recoil at the sight of the TED logo. Day six of my son’s life would consist of taking newborn photos and inviting family and friends to gaze into his hazel eyes and ask whether he looked more like Brie or I. And these past seven years would be devoid of therapists, neurologists and the growing expertise in cerebral palsy and epilepsy. Maybe, I could sleep through the night.

And yet, I wrestle. Absent the sorrow, devoid of the pain, this asteroid-sized love for my son, my daughters, and my wife would not be possible. Nor the insatiable desire to embrace every precious breath. Life would not be as beautiful. It is because of these troubles that I live in this manner today.

So how can so much beauty and goodness have emerged from such tragedy? How can we spend two years far from therapists and neurologists and not let the seizures stop our vagabonding? How can so many of the dull routine moments be filled with laughter and hope when they could be interrupted at any time? 

I don’t know. 

The early morning sun rises over our new home at the Front Range of the Rockies. It illuminates again, the paths traversed these last seven years. Its rays are seeking to pierce my bright, yet vulnerable eyes. Now I am facing the opposite direction, calm, back straight and eyes fixed on the next summit, even higher, with the trail at my feet. 

It is certain to be treacherous. And certain to be filled with more castles, baby swans and tacos de chorizo. I may want to change everything that took place on day six of Sebastian’s life; but I would not change anything about today or tomorrow.