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Thursday, September 17, 2015

A Birthday Gift

Three years ago today, I stared into a pair of murky blue eyes and kissed a nose that was an exact replica of my own. Six pounds is tiny, but in my son's eyes I could see the deepest recesses of the sea and the entire galaxy all at once. He had a way about him that was magnetic and transformative and though I didn't know then what our lives had in store, I instinctively understood that we could manage it together. 


We were told that our second child would be born with Down syndrome and a congenital heart defect, but that was really all we knew. What could be more than that, anyway? Those two facts had so intensely rocked my world that it would take seventeen days before I could manage to ebb the tide of tears. So utterly shattered was I by the (mis)understanding of what my son's future held, it was all I could do to live with the stranger in my belly. I grew increasingly frustrated that I had to use our shared oxygen to keep from suffocating under the weight of the pain. 

In the end it didn't matter - he was already too deeply embedded in my heart and womb, busying himself to teach me lessons I didn't know I needed to learn. 

In that hour after he was born, he would be taken from me for an exhausting and challenging stay in the NICU. Those long days and nights would prepare us for future hours and weeks and months and years of medical intervention. For a relentless influx of poking and prodding and prescriptions and surgeries and hospital stays and surly medical professionals who referred to our child as a "down's baby" instead of by his God-given name. 

In those early days I didn't know much about PT or OT or SLT. I was so worried about him holding up his head that I could not be rational about the fact that he would eventually and walk and run and dance. I'd never heard of an expressive-receptive language gap and couldn't have known that such a thing would be directly attributable to his frustration as he attempted but failed to say the words that lived on the tip of his little tongue.

I certainly didn't know that my hands would feel the phantom weight of his 11-week old body after I handed him over for open heart surgery, or that my heart would irreparably crack while I waited the eight excruciating hours for his return. I was clueless about intubation and isolation and Intensive Care Units and sanitizing protocols. I had no idea that white coat syndrome is an actual thing and that it's possible to hear drips and beeps and alarms in your sleep for years after the fact. 

Oh, and cancer. I didn't know a single thing about cancer. 

Leukemia. I could write about it for hours without stopping. The months that we spent away from our home and our friends and our family. The chemotherapies and the side effects and the beautiful, blonde, silken baby hair that fell out in my hands as I caressed and comforted my son each night. Nights were so impossibly long and scary - full of unspeakable thoughts and what-ifs and dread over the number of hours we might have left. How could I have possibly known about that?

Before my son came into the world, I foolishly thought that the things I wanted would be guaranteed and granted. I thought that my best laid plans were actually the best laid plans. I never thought Down syndrome or cancer would become chapters in the story of my life.

But words and diagnoses are not people - they do not define who a person is or how much they can accomplish or what they can offer to others. The reality is that planning and preparing and predicting for a particular outcome is futile. The only thing that is really certain is uncertainty, and while that can be scary when it comes in the form of cancer, it can also offer clarity and contentment in the gift of a plucky, towheaded little boy. 

A little boy who came perfectly into our world just to save us from getting stuck in it. A little boy who so courageously fought his own battles that we had no choice but to follow his lead. A little boy who slept peacefully in my belly and afterward in my arms knowing all along that we would overcome the countless unknowns together.

Today I celebrate the birth of a child who is so unique, capable and downright edible that I wouldn't trade one sleepless night for the endless days of joy that he has brought me. I didn't know much three years ago, but those almond-shaped eyes held the secret all along: he is everything I never knew I needed. And I could not live without him.





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