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Living the Dream

24 Mar

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Exactly a year ago, my son was diagnosed with Crohn’s Disease. When you receive a diagnosis like that, as a mother, you want all the information you can get and yet simultaneously, you want none of it. You want a crystal ball to know what your child’s future will be like and at the same time, you do not want that kind of knowledge. You imagine the next year of your life and you fear it. You envision terrible pitfalls and tears, and still you cross your fingers and hope you will be one of the lucky ones.

My son is one of the lucky ones.

My boy has wanted to perform for as long as I can remember. Prior to this year, the two shows in which he acted have been mere displays of adorable children as opposed to any type of pageantry of talent. About two years ago, my then 9 year old son, while spending his free time in school scouring Backstage.com and Variety for notices for open calls for children, seized on an audition being held in the city for a Broadway show. He prepared his own resume, which included gems like:

Dancing Training: None (I’m still good though)

Acting Training: None (I can cry on the spot)

Vocal Training: None (I can sing in the shower)

He also included a mandatory school performance among his acting credits. He pasted a Photo Booth picture to this paper and fearlessly dragged my unsuspecting father into Manhattan.

About three hours later, my father called me:

“You and your mother are crazy! We are in way over our heads! There are kids tap dancing up and down the hallways. Some are wearing jackets from the shows they have been in. Others are here with their agents and managers.”

I was more than reluctant to let him go and get his heart shattered but I also thought, maybe this level of competition would be eye opening for him. Needless to say, he did not get any part in that Broadway show but he was nevertheless encouraged by the supportive words given by the panel who auditioned him.  I reminded him that if he truly wants to be involved with theater, there are multiple behind the scenes ways in which to do so: writing, directing, producing. He not only did not want to hear it, he turned to me and shouted:

“YOU’RE A DREAM KILLER!”

And with that, we shelved the conversation.

Last weekend he performed in his first middle school show, 42nd Street. He was cast as Bert, a role to which he brought humor, joy, and, to be honest, talent. He tap danced circles around my heart. He made me laugh. He made me cry. He made me downright giddy. And most of all, he made me so very proud.

Who am I to kill anyone’s dreams? Especially those belonging to my sons. How can they dream at all if their own mother is constantly whispering threads of reality to them? They can’t. Part of being a child is dreaming dreams that are our own. Hopefully, those dreams will guide us along the paths we want to pursue, and in some cases, maybe even come true. Maybe not the dream of another son of mine who wants to play for the NBA. But it is not my job to extinguish it.

Sometimes we learn the most important lessons from our children. Yes, we learn the importance of dreaming. But we also learn the importance of living our lives without limitations: without diseases which may confine us, societal notions which may hinder us, and parents which may hold us back.

A diagnosis of exactly one year ago has just become a tiny part of who my son is: a multi-dimensional, sweet, talented, driven, loving, realistic dreamer. It is a luxury to be on the other side of this year, to have this knowledge, to see our future become our past, to have looked at that crystal ball and know everything is going to be all right. And most important, to know that we all are, indeed, the lucky ones.

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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.