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Thankful for Human Kindness

26 Nov

— and Stephanie Robinson of Oxford

 

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Reservoirs of Hope

6 Oct

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I posted optimism in haste. I understand, I am optimistic by nature. I am also superstitious, however, and that should have given me pause. Regardless, I was hasty and we have seen immeasurable sadness.

My son returned to a fetal position on the floor, unable to contort himself enough to not feel pain. He winced, he punched pillows, he cried. I did too. “It’s not fair!” He screamed. I told him he was right. It was not fair. Life often is not. He is only 12. I wish I could know the pain he is feeling. I wish I could experience it so I could commiserate with him. I fear the pain I feel as a mother might be worse. I hope it is because I am abler to weather it than he.

He rearranges himself constantly, twisting around within and atop the quilt, like a giant stress ball but regrettably ineffective. Another very sad week to enter into the calendar.

“Tomorrow will be a better day” I tell him, just like my mother used to tell me when my day ran afoul. Each night I go to sleep an empty pot left beneath a leaky ceiling, allowing hope to collect in time for morning. Each morning I wake with expectation, yet it is always the same, if not worse. The pain still there, the agony unbearable for a young boy, and too much for this mother to witness. At what point do my empty promises reveal me to be an optimistic liar to my child. I cannot keep telling him that “tomorrow will be a better day” when it just does not come to fruition. Perhaps he should be more like his father: an over-prepared realist. Ready for and expecting the worst and anything less will be tolerable and even welcome. Then again, I’m not sure I could live like that either.

“Just sit here and look out the window” my mother used to tell me when I had a nightmare. It was also what her mother used to tell her to remedy the same situation. Inevitably, I would stare out the window and become distracted enough with whatever I may have noticed to have lost track of my nightmare. I wish I could stare out the window long enough right now.

“Just sit here and look out the window” my mother tells my son. But he cannot sit upright long enough without pain to complete this task. He again curls himself into a ball and weeps.

I wonder if this little boy knows how much he is loved. How much the lives of those who love him are thrown off by this spell. That his mother goes to sleep waiting to refill a reservoir of hope by dawn. That his brothers might be a little bit nicer to him. That his grandmother does not sound like herself when she answers the phone. That his grandfather makes frequent unannounced visits just to see how he is doing, just to look at his face, just to kiss the top of his head and rub his back. He is so loved.

Yesterday was the type of day you just do not expect when you wake up, even with a full supply of hope. When you confront a disease, especially one that afflicts your child, and you must contemplate therapies, sometimes none of the choices are good. All medications are accompanied by unfathomable risks and you find yourself asking doctors “is it at least a treatable Lymphoma?” as if that is an acceptable outcome. Simultaneously, compromising your child’s current health is not an option. Pile on the relentless pain and decisions are suddenly made amidst a pressure cooker of love and concern and the need for a young child to simply find some rest.

I refused to allow the nurse to provide a detailed consent, particularly in front of my son. I do not want to know the risks they are required to tell me by law. I do not want to know about minuscule possibilities of terrible things that may await us. I do not want to know about something that might have happened to a lab rat that received 1,000,000 times the allowable dose. I want to see my son well. I want to see his smile again. I want to see him be a 12 year old boy.

Several hours later, following his first IV infusion therapy, I did just that. Now he is at school. He is sleepy, he is concerned, but he is smiling. Today is a better day.

My pot is full.

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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.

Not Perfect, But All Right

30 Oct

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2014 has not been kind.

On a cold, snowy day in January, when my husband was in Tokyo, my 10 year old son received a lifelong sentence. It began with a sick visit to the pediatrician followed by another sick visit to a gastroenterologist. As I sat across from this woman, who I disliked as soon as she entered the room, I could not imagine that my son’s world was going to permanently change. After a brief examination and a denial of all symptoms from which she was sure he was suffering, she stoically pronounced “he has Crohn’s,” which only made me hate her more than I already did. She prescribed antibiotics and advised that he would need to be examined under general anesthesia.

That night, my son slept in my bed. I spent most of the night feeling his forehead, making sure he was still asleep, plotting the death of that emotionless doctor. By the time it was morning,  we were on our way to the emergency room. A morphine drip was administered and my son finally relaxed.

An MRI revealed that my son had an abscess which required draining. He remained on the morphine as well as IV antibiotics and by the time the surgery was performed, the abscess was already gone. We were there for several days, during which time every physician assured me that they did not think my son had Crohn’s. I assured myself of this as well, right up until the time we were leaving when the discharging doctor looked over his forms and said “I don’t see what else it could be aside from Crohn’s.” And just like that, the rug on which I was solidly standing, was pulled out from under me. Again.

A few weeks later a blood test revealed no inflammation. That horrible doctor was wrong. I knew it. A week after that my son started to complain of stomach pain. A week after that, a stool sample was three times the normal level and I had to offer some begrudging respect to this woman who so casually spoke the words that would change my son’s life. By April, a colonoscopy/endoscopy confirmed that she was, in fact, right. She was always right. My son had Crohn’s Disease and the tiny thread attached to my heart that came loose in January, started to fully unravel.

I did not want an education about fancy medication, about the physiology of the colon, about colostomies, about therapies offering ways my child can “live with Crohn’s.” I wanted him to be the person I thought he was, physically, on the morning of that snowy day in January. I wanted to circle the equator over and over like Superman until I reversed time enough to unearth Lois Lane from her car and free my son from a diagnosis I did not want attached to him. I wanted to find a new doctor, one that was a human being, one that would not tell me, when I asked if my child would be ok, that she “can’t predict the future.” I wanted someone to hold my hand and my heart.

I know that there are worse things in life than Crohn’s Disease and that my son will be all right. But we mothers don’t want our children to be just “all right.” We want them to be perfect. Being a parent is so hard. From skinned knees to bruised egos to diseases about which we want to know nothing. I would love it if I could just kiss this terrible boo boo or apply ice to it, or simply make a wish and watch it fade away until there is nothing left but the perfect body into which he was born. He’s learning too much too soon and I hate it. He has a sophisticated medical vocabulary, refers to his pills as “my meds” and is overly concerned about his height and weight. On the other hand, right before a second operation, he gamely dressed up in his gown, sterile shower cap, and held up a book, pretending to be the Statue of Liberty.

So maybe he’s doing all right already. And maybe 2014 has been kinder than I thought.