Since my daughter has Crohn's Disease, I've had my fair share of fear and anxiety that one of my sons could develop Crohn's as well. I have read extensively and asked specialists if this was a valid concern. (This is a code word that moms use when they don't want to appear too anxious in the presence of detached professionals.) I learned that the risk was low, perhaps no more than a 5-7% chance. I tried to embrace this number. It was one of my ways of coping with fears. Yet despite this knowledge, gleaned from the finest science, anxiety and fear were never far from my heart. Would one or both of my sons develop Crohn's Disease as well?
I don't think I am that much different than other mothers. When a child is diagnosed with a chronic illness, you'd have to have fallen off the watermelon truck not wonder if your other children are at risk as well. Often, this is a well-founded fear since we know that disease is an interaction of genes and environment. Siblings not only share genes, but also a similar environment.
I never gave much thought to the possibility of one of my three children inheriting a genetic disease. Even though I come from a relatively small family in New Brunswick, all evidence points to exceptional health and longevity. They say it's the good food and fresh maritime air.
My husband's genes are more suspect. He comes from a Founder Effect region in northern Quebec. People from such regions have a higher incidence of some genetic diseases because the gene pool is smaller due to the geographic isolation. Despite this potential, there is no evidence of genetic diseases in his immediate nor enormous extended family.
When my daughter was about two years old, she began having unremitting diarrhea. We were told it was toddlers diarrhea. She had unexplained arthritic events. She was certainly on the small size. Petite, not thin, they said. No investigations were necessary we were told repeatedly. When the toddler diarrhea finally ended when she was 8 years old, we were nearly as relieved as she was.
But by the time she was 14 years old, the fatigue, pain, and other seemingly unrelated symptoms had begun insidiously. She quit swimming, needed rides to school, and spent hours in bed. Another typical teenager.
We went from doctor to doctor with a little of this and a little of that hoping to strike it lucky. There's nothing wrong with you, she was told. Eat more bran and take sitz baths. Perhaps some counselling would be helpful.
Finally when stones were dropping from her kidney, a doctor ordered a test. It allowed us to see what had been there all along. Her small bowel had thickened and narrowed. Beyond a shadow of a doubt, she had Crohn's Disease.
At the time, my daughter's diagnosis was a relief of sorts. She was elevated from the abyss of No Disease to Crohn's Disease. She had places to go and people to see. At last, she had something rather than nothing. Doctors wrote excuse letters and prescriptions.
We were, I remember, almost jubilant, as if our long arduous journey had finally ended.
But by then she was already experiencing moderate to severe disease. Her nails were clubbed indicating long-standing disease. She was worn out from the lengthy period to diagnosis. She was in a full-out raging flare. The drugs thrown at her could hardly pull her back.
The years that followed were difficult and consuming. What can I tell you about this? I'll sum it up: Crohn's sucks. It's a horrid contemptuous disease. We hate Crohn's. We all hate Crohn's. If we never hear the word Crohn's again, it'll be too soon.
I hoped my daughter was anomalous. I hoped it was a girl thing. I hoped it was something special about her. Besides, her younger brothers had not shown any obvious signs of pediatric Crohn's Disease. Maybe it was just her. I hoped.
The risks were still, presumably quite low. The numbers were comforting. They kept me from a state of persistent alarm.
This doesn't mean that I lived entirely without anxiety and fear. The fear was always there. Symptoms that another mother would hardly notice warrant notation around my house. But, really, what's an occasional mouth canker? a small bout of diarrhea? a little stomach ache? a few aches and pains? a little tired? a little thinner? Is anyone of these things alone a symptom of Crohn's Disease?
No. Certainly not. Perfectly normal, I say. Nothing to worry about. You see, around here, we are rational and disciplined. We don't hit the panic button impetuously. We don't make a mountain out of a mole hill. And we certainly don't cry wolf when there isn't one.
Worry is a disciplined undertaking. I had in fact set time limits on my fear of Crohn's. I had decided to stay in high controlled alert until my boys were 25 years old, thus covering the big window for Crohn's onset. Between 25 and 35 years of age, I would move to the more relaxed medium alert. After that, I would mellow down into a perpetual low alert until the day I die.
Of course, if we're lucky enough, I'd be an old lady by then. I wasn't sure though if insidious low-level fear is as compelling when you're an octogenarian. It is possible to become preoccupied by other concerns.
I could end up as a wise old lady though and live out my days in beautiful harmony with the universe. It's more likely, however, that my fear will just slip away along with my memory of it. Like a lost set of keys to a car I no longer own. My coping strategies aside, I think it is clear that I was coping with a chronic illness. Fear is my disease. FD. Fear Disease.
But I`m digressing. I am a sensible person. Besides having a high capacity to rationalize my fears, I had other ways of coping with fears. My house was clean. My heart was pure. Who's afraid of the big bad wolf? Not me.
But in 2011, all my ways of coping with the fear of having another child diagnosed with Crohn's Disease came to an abrupt end. There was no statistic, no story, nor any discipline strong enough to stand up to the wolf when he came a-knockin at our door.
You see, numbers are only numbers. Siblings are more alike than different. Fear and anxiety are not as amenable to discipline as one might hope. When the wolf huffs and puffs, as it turns out, your door does blow down.
My 14-year-old son brewed some symptoms, which I managed one after the other with the calm of a Buddhist. Besides, it's normal to be a little under the weather in the winter in Canada, isn't it? Perfectly normal.
But then one day my son became suddenly and dramatically ill. With his presenting symptoms and family history, he was diagnosed for all intents and purposes before we even left the Emergency Department for the hospital ward. My van, parked in the lot below, was still warm.
I avow that the weeks preceding my son's diagnosis were intolerable for me. No rationalization could suppress my fear and anxiety. No number gave me comfort. Nothing could unfear me.
I sensed the growing presence of the dark figure waiting to touch us with his razor-sharp claws. At night, I was restless. I'd look out the window to the street below. I'd scrutinize the shadows falling to my lawn. I'd examine prints left in the snow.
I was, I think, beginning to believe in the horror of fairy tales.
It might sound absurd, but what I experienced upon my son's diagnosis can only describe as cathartic. Perhaps this is only the story I tell myself now to buffer this brutal blow.
But perhaps I am truly freed from the potential for decades of insidious debilitating worry. Over time, it would surely have worn away at my health and happiness, and this in turn on my children. And, if I live, is it not for them?
My son is my saviour. He delivered to me a most potent therapy for my disease, fear. Fear Disease.
I was released from the story I created. Of course my son would get Crohn's Disease. The dealt hand cannot be undealt. It was inevitable.
I had to surrender my false belief that my daughter was somehow unique from her brothers, separated by a protective bubble of time and gender. And she too had to abandon her uniqueness. Crohn's has a way of making us rethink all of our stories.
This must sound odd, but, in the end, diagnosing Crohn's disese so easily at the ripe old age of 14 years counts as a blessing in my life. It is rare to get a Crohn's diagnosis in a matter of minutes. Typically, it is a question of years. Initially I liked to tell myself that were it not for this rapid diagnosis, my glass might have dipped below half empty. With so much energy spared, I have that much more to give. To these diseases of Crohn`s and Fear. Phew. I am lucky.
But my story is not finished. There is still the 12-year-old brother of the Crohnsy sister and Crohnsy brother. My son.
He thinks that we are on the verge three strikes in this family. Now he wants to be different. He doesn't want to do everything his brother does. He likes unique.
But this wish does not comfort him. He frets frequently about his fate. Am I going to get it too, he asks. I don't want Crohn's, he says. I don't want to be like them. I don't want Crohn's. No Crohn's. No.
But surprisingly, I'm not sure that I even fear Crohn's Disease for him anymore. Perhaps time will test me on what I believe of myself.
I'm pretty sure that the wolf is already prowling. He's peaking in our closets. He's sitting at our dinner table. A stealthy and bold little bugger. I know him well enough to expect this.
You see, in my mind, he already has the disease. I am resigned. Most anything I see can be a soft sign of Crohn's Disease. There is no disciplined fear anymore. There is no story of his uniqueness. He is not protected by youth nor by curly hair. All my children have Crohn's Disease. They are both clever and Crohnsy.Now what it really boils down to is a question of time. Will it be now or will it be later? But there is no agony in the wait and no blessing to be garnered from an earlier diagnosis. That story that I told myself is behind me too. But I'm not afraid. I ask you: who is afraid of the big bad wolf?
So this is how I am living with Crohn's Disease, the disease of my children. I don't imagine my octogenarian self anymore, the devotee of disciplined low level worry and sensible housekeeping. The key to longevity.
Now I imagine myself as the mother of three children with Crohn's Disease. Some wise people will tell you that you should visualize yourself only where you want to be. The wish is the father of the thought. I don't really want this, do I?
Yet I can't help but see myself. I'll put one foot in front of the other as I always do. I'll put on my brave mommy face. I'll think of ways to amuse. I'll buy treats. I'll make healthy cakes. I'll make things normal.
For fun, we'll imitate some of the kooky characters we meet along the way. Like the doctor who looks like a woman and talks with the voice of a man. Or the moody doctor who throws temper tantrums and then smokes in the parking lot.
We'll go all out and add another bathroom. We'll vote on the toilet. We'll buy toilet paper and supplements on sale and brag about our deals. We'll tally the number of supplements and medications taken per day. We'll compete with ourselves for the highest daily flush score.
Then we'll get another ill-mannered dog. Appliances and cars will continue to break down. And then we'll laugh some more about how absolutely crazy things are at our house.
This is how we'll be living with Crohn's. I hope they'll remember this. I know I will.
My children have Crohn's. Period. Regardless of anything, for me, the wolf will never leave my home. The door has been closed.
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