One Year

It’s been one year.

One birthday.

One summer vacation.

One first day of school.

One Thanksgiving.

One year ago today I put on my brave face and kissed my son goodbye, then watched as they wheeled him away to the operating room.

To take out his heart.

Fifteen weeks earlier, with a sparkle in his eye and a bounce in his step, Spencer walked up the school steps and into his classroom for his first day of kindergarten.

Four weeks later, our faces etched with worry, we cradled him in our arms as we passed through the doors of the Emergency Room.

“What could be causing this stomach pain?” We asked them. “He just hasn’t been well for days.”

An ambulance ride to the Children’s Hospital two hours away and then the diagnosis.

I was alone when the doctor dropped the bomb that shattered my world, “It’s his heart. Your son is a very, very sick little boy.”

Fifteen long minutes later, Matt arrived and we tried desperately to comprehend what they were telling us but it was just impossible to believe.

“His heart is failing and we don’t know why.”

“He needs a new heart.”

“He might die waiting for a heart.”

No. Those words are impossible. He’s only five years old--the blink of an eye to my mother heart.  Just last week he was riding his bike and so…ALIVE.

But impossible or not, this was real. And this was our life now, so we took up residence in the cardiac ICU of that beloved hospital.

We lived minute to minute. Operations were performed to buy him some time. The Berlin heart, not yet FDA approved, was attached to his dying heart to buy him even more time. 

After weeks of holding our breath, we finally dared to breathe. Doctors and nurses began to smile for the first time.  He was critical, but stable.  No more ECMO. No more ventilator. The Berlin was a miraculous gift of time. Time that we so desperately needed.

Because we were waiting.

Waiting for something that had no schedule. Waiting for something that had no guarantee. Waiting for something—the only thing—that would allow us to take our only son home.

A new heart.

The wait was excruciating. I had to put it out of my mind so as not to lose my mind. Don’t think about when or if, just be grateful for today.

Days became weeks became months. We celebrated Halloween and Thanksgiving in the hospital and now Christmas is coming.

But he’s still with us, so we’ll be grateful for the chance to wait.

The wait became more frightening as his own heart grew closer and closer to its own final beat. We were in a race against time, with no control over the outcome.

What do you pray for in a time like this? Certainly not for the death of a child! Not mine. Not theirs. But we need that heart.

So I pray for peace.

Peace for us while we wait.

And peace for a mother and father who will face the unimaginable grief of losing a child.

Peace for them in that horrible moment when a doctor gently asks, “Have you thought about donating your child’s organs?”

Oh, if they could only see him! Would it make their decision easier?

And still, we wait.

And pray.

And then, the call.

“We’ve found a heart for Spencer!”

Joy and fear! Relief and worry! The longest of long days.

And as they wheeled him away I thought my heart would break.

~ ~ ~

Today is beautiful. It’s finally snowing outside. It will be a white Christmas after all. He’s building a snowman and teasing his sisters and drinking hot chocolate. And smiling.

And he gives me a hug and I think my heart might burst.

One year.

And we have been grateful every day for every beat of his beautiful new heart.

 I love you forever and ever, my little man!

~ ~ ~

Spencer's transplant was one year ago yesterday. 

In honor of this very special anniversary a dear friend Shelly, at La Tejana, asked me if I would be willing to do a guest post on her blog, about Spencer's story. Written above is what I sent her. The link to her blog is here.

She has a wonderful blog and her writing skills are exceeded only by her goodness.  I'm grateful to her for her efforts to educate others on the importance of organ donation.