Tag Archives: Crohn’s Disease

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.

My Son and My Swollen Heart

11 Dec

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This year has not been easy.

At the end of last year’s school year, my son was trying to select courses for his first year at middle school. He wanted to take chorus but was reluctant.

“Do you like to sing?”

“Yes.”

“You should take chorus.”

“I like singing but I’m not sure about chorus.”

“Are you worried you will be teased about it because you’re a boy?”

“Yes.”

“You should take chorus.”

He was already dealing with more than any 11 year old child should have to deal with: a Crohn’s Disease diagnosis and the attempt to get it under control. He was also being followed for rapidly progressing Scoliosis and only 4 degrees away from getting a brace he would have to wear 23 hours a day for at least 3 years. He selected chorus.

Recently, I was involved in a fundraiser for Crohn’s, Colitis, and Celiac (which another son of mine happens to have). It was successful in that we raised money, awareness, and spirits, particularly those of my sons. The following day, my son had his follow up appointment with the orthopedist to determine if his Scoliosis would finally require a restrictive brace. Eight months elapsed since his last X-ray and I spent most of the day alternating between holding my breath and praying for good news. Miraculously, his Scoliosis did not worsen; if anything, it may have slightly improved.

Perhaps good deeds beget goodness. Perhaps that fundraiser made a large karmic dent in our tiny world. Perhaps my son was just entitled to finally receive some good news. Perhaps.

Last night was his first chorus concert. He stood, clad in a bow tie, next to the only other boy in chorus, amid a sea of 35 girls. He was also chosen with three other children to sing parts of “Do You Want to Build a Snowman.” As I crouched in the aisle of the auditorium, taking pictures and watching this boy, with his unique and immutable spirit, I cried. He has survived so much in so little time and he is doing what he wants and living his life. Good for you, Eli, good for you. Don’t let anything keep you down, my baby boy. You are unstoppable.

I am so thankful for this current lull in the great and unwanted upheaval of life. It may be temporary but that is no different than the life belonging to anyone else. There are good days and bad days and days in between. The hope is that the good days outweigh the bad and that we are lucky enough to find them and know them and love them.

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