Sailing

21 Sep

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We are drifting aimlessly on the sea. The water is so placid even our boat does not create a ripple. We stretch back and let the salty air wash over our sun-kissed faces. We are good.

And in an instant, the sky turns dark and stormy and our boat is upended. We are swallowing the sea water that protected us just seconds earlier. We are desperate to right our boat, to climb back into its safety, to escape this disastrous storm. But it takes time.

This is what it is like to live with a chronic illness. One minute you are navigating innocent waters and the next minute you are laying with your son on the cold tile of the bathroom floor, struggling to find stillness.

Last week, out of nowhere, our boat was toppled. My son experienced what can only be described as “labor pains” for nearly a week. He winced, he cried, he dug his nails into the flesh of his wrists to feel something other than agony. And with each tear that traveled down his cheek, the vise around my heart tightened its grip. I tried to act casual, I cried and told him I wish it was happening to me instead, I tried everything. There is literally nothing I could do to soothe my son, to make it better, to be his mommy.

“Can’t you just hug me and make it go away?” He cried.

Oh, how I wish.

On Friday morning, after a long and very sad week, my son woke up feeling no pain. He later called me from the nurse’s office at school:

“I have good news and I have bad news. The good news is that my stomach feels fine. The bad news is that my wrist bent back in recess and then I fell on it and it hurts a lot.”

“So you have good news. I love you.”

Later that day, my son managed to take his iPhone for a night swim. He called me from his friend’s house in such distress that it was difficult to hear actual words.

“I’m an idiot. I did the dumbest thing. You’re going to kill me. I’m sorry. I’m sorry. I’m so sorry.”

“Are you ok? How do you feel?”

“I feel fine.”

“So you’re ok.”

I told him I don’t care. I told him it’s just money. I told him I’m just happy he feels good. I told him to hang up with me and go be a kid.

When I picked him up that night, he again cried, saying he made a mistake.

“I’m glad you did. That’s how you learn. You will never go swimming with your phone again. I make mistakes, Dad makes mistakes, we all make mistakes. It is part of life and no one gets out of here without making some along the way. And by the way, you mean way more to me than a phone.”

The following day was spent going to Urgent Care and getting X-rays for his wrist. As we drove to the clinic, my son reflected on the broken phone and the possibly broken wrist.

“Yesterday was the worst day, Mom.”

“Yesterday was the best day.”

“No, I mean because of my phone and my wrist. So it was a really bad day.”

“Yes, but you woke up feeling fine and your stomach no longer bothers you. Your phone can be replaced. Your wrist, even if broken, will heal.  These are things that happen to everyone. But you feel good. So it was a great day.”

When the dark clouds gather and the storm rolls in, I worry that my son’s whole life will be like those moments on the bathroom floor: a tiny ship tossed around helplessly in a maelstrom. I remind myself of the things I must believe in: medicine, Hope, and my son. I remind myself that this disease should be the worst thing that ever happens to him. I remind myself of the serene seas in which we have been fortunate enough to sail. And then I look out for those starry nights, the traditional harbingers of the promise of beautiful weather ahead.

The phone was irretrievably broken.

The wrist was not.

And neither was my heart.

And our ship is again floating under a beautiful, cloudless sky, hoping for endless starry nights.

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