Little Ra

Last week we celebrated the one year anniversary of Gabriel's second open heart surgery to repair the supravalvular pulmonary stenosis he developed as a result of the Arterial Switch. I wish I knew the words to describe what a significant moment this is for myself, my family, and of course, WonderGabe. At 22 months old, this is the longest my babe has gone without surgical intervention and that realization is a bittersweet one, but one that gives more sugar, much like Gabe himself, with each passing day.

The miracles of modern medicine have saved Gabe's life twice.

The first time I could tell that Gabe was at the mercy of science. His skin was pale and slightly blue; his breathing became fast and labored; he stopped nursing and lay beside me utterly exhausted as oxygen began to escape him. I had no doubt that he needed a savior. Or a few.

The second time I couldn't believe that my thriving, asymptomatic, pink baby with his wide smile, sparkling eyes, and bubbly laughter was ill...ill in any way. I needed proof before I could let another hand hold his heart again.

And proof I did receive.

This would be Gabe's Pulmonary Artery behaving very badly.

By the time he was admitted for surgery (as asymptomatic as ever), the pressure gradient on the right side of his heart was between 90-100. A normal gradient is 0-10.

He definitely needed a savior again.

And again he found one in his surgeons, who I like to think of as the Dynamic Duo. They will never know just how much I idealize them, but I hope they know, truly understand the enormity of the gift they gave us.

One of our surgeons (whom we happen to share with the Portas) was featured in Michael Ruhlman's Walk on Water: The Miracle of Saving Children's Lives long before our paths crossed. These are his words.

"A surgeon's quest is not for perfection but rather for grace" he said without hesitation.

"Define grace".

"A moment of clarity. You're not yourself, you're an instrument of something else. When I was in thoracic surgery, doing a pneumonectomy, taking out part of a lung, I had to sew the pulmonary artery back together with one hand because I was holding the trunk of it with my other hand. I didn't even think. Forehand, boom, boom, boom, boom, four backhand, and it was done. The guy I was training under said, 'Frank, that was a moment of grace. Never forget it.' I hadn't realized, I was surprised, but he was right, and to this day it delights me to think about it...that's what I strive for.

Larry Bird was once asked about Michael Jordan after a game between Boston and Chicago when Jordan was on--really on, even for Jordan--and Bird replied, 'That wasn't Michael Jordan, that was God.' That's when you know you're there--when it's not even you."

This was who Gabe was then.



And this is whom he has become.



I will never be able to express my grattitude for the grace of the gods, the power of the universe, the strength of my son's little body, the advancements in medicine, the prowess of the hands that held his heart, the randomness of luck or any of the hundreds of moments and actions that have brought us to today. Whether it was fate or a random occurance that allowed my baby to grow into a little boy is regardless because today I have an after picture. Today is after.

There are no words strong enough or big enough to convey the beauty of after...even when the future is unsaid.

And on the day when I woke up knowing it wasn't just another day, but it was the day; on the day that WonderLove called me at work to share stories of Gabe's deft ability to derobe and run amok in his naked, diaperless, glory while coaching tales of his misbehavior in the stern admonishment that this day Gabe would be free from punishment no matter what or who he climbed, however much his long distance calls would cost us; on this day Pinko Grammy, feeling the same tenderness we all felt, sent me this poem about her beloved grandson. The one she calls her Little Ra.

Little RA

Little RA burst into life,
demanding clearly“Fix me first”
and we shall see if you can be
the kind of folks to handle me.
If you can do that, possibly,
I’ll let you take a shot at me.

So much to see and learn and feel,
so hard to balance on the wheel
of life in time; Impatience reigns
when wants must play through weeks and days.

So quick to shoot his blinding rays
to tender mountaintops and glee,
to sharper edges beckoning
as well to flow right over.

He will reach his arms to these
the edges, smiling, joyful haste
in light we’ll teach him not to waste
and then stand back and watch him – pulsing –
Shine.

A father’s dream, a rooster fine
with mind enough to walk
the line his mother teaches – possibly,
probably in fact. If we are
just as quick and strong as he,
Little Ra will grow to be the sun.

May the light of grace and the sun's rays keep shining...