Tag Archives: celiac

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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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.