What happened when I was busy making other plans.

Keeping it at Bay (or trying)


I’m long overdue for this catharsis, so hopefully this won’t be too arduous or too heavy-handed, but as the saying goes, here goes nothin’.

Our last hospital visit, nearly three weeks ago, brought good news and the promise of bad. First, the good: E’s platelets were once again at a very healthy level, leading us further toward the conclusion that her ITP may, in fact, be in remission. Two and a half years after diagnosis, this should have been cause to celebrate. But at its heels was the not-so-good news: Despite the fact that the past round of bloodwork testing for intestinal disorders such as colitis, Crohn’s and Celiac’s all came up negative in March, the pediatric gastroenterologist, Dr. S., believed that E does, in fact, have Crohn’s. (Apparently a fair number of her Crohn’s patients also tested negative on the bloodwork but still had it. In the wide world of medicine, they call that a false negative.) We were sent off to do more at-home tests and, depending on those results, the high likelihood of an impending colonoscopy.

This happiness was followed by our looping back to E’s hematologist, Dr. B. After she left the room I asked him, point blank, “Is this going to suck as much as ITP?” to which he replied, “It’s probably going to suck even more.”

Gasp. 

The last at-home tests confirmed the need for a colonscopy. But the doctor’s first available morning appointment isn’t for another three weeks. And so we wait. And, as I have for the past two and a half years–since December 5, 2009, to be exact–I try to keep things as normal as possible.

The good part is, this time of year we’re almost too busy, it being high season with my work (mostly conferences) and E involved in an upcoming variety show, her ice skating show, and B just getting elected to the board of education and now gearing up for that. It seems like spring and fall explode with activities and not enough time to do them all–and I welcome all the distractions.

But in those quiet moments, in between A and B, I’m left with my thoughts. And though I fight every day not to live there, I feel like worry is my undercurrent–always there beneath the surface, ready to bubble up.

The rational mind says, “There’s no point in worrying. Worry when you have to.”

Dr. B. says, “Promise me one thing. DO NOT go online to research this until you know exactly what you’re dealing with.”

My friends ask, “How are you doing?” They want to know what it feels like.

I try to keep the worry at bay. I know—having been on both sides of it, the jinxing side and the optimist’s side—that you’re much better off saving the worry until you absolutely need it. But the truth is, it’s there. It can be diverted, but it cannot be denied.

My child is beautiful and full of life. And we have many happy moments full of laughter. And we try to make the best of things and enjoy the good moments. But at least two times a week, she complains of crippling stomach aches that stop her in her tracks. She’s had worse symptoms, too. There’s something to it—I fear the diagnosis of another chronic condition, promising more hospital visits, pain, and suffering; more to take her away from just being a kid. It feels unfair: Couldn’t she just get a break and be able to say she’s healthy, and know it’s the truth?

I’ve told her the basic facts, without embellishment. But knowing the contagion of moods, I have tried very hard to keep my worry as far away from her as possible. Perceptive and inquisitive, she probably senses in part what’s going on, though. I am not that good an actress, and she’s too good an investigative reporter.

And so we wait. And will face whatever it is with realism and, yes, a good dose of hopefulness. Because that’s just how we roll.

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8 responses

  1. Jill R.

    K- you ROCK! I mean it. Of course it is the parent’s job to worry. That is what parents do. And of course you do your best to shield E of your worry. It is so difficult to see the ones we love in pain. You have lots of love and support around you and all over the world, including in Baltimore. So, if you need a diversion and want to take a weekend road trip to Baltimore, you and E and B are welcome to stay here. Lots of love to you all. xoxo
    -Jill R.

    June 5, 2012 at 8:12 pm

    • Thank you, Jill! We may take you up on that offer! Xoxo

      June 6, 2012 at 7:28 am

  2. ruth

    “But in those quiet moments, in between A and B, I’m left with my thoughts. ”

    Beautifully written. And.. Yes, the underlying worry is not something you can control. I wish you much strength!

    June 5, 2012 at 8:43 pm

  3. Thanks, Ruth! Appreciate your comments. And I know you know about worry, too. It’s what we do, right?

    June 6, 2012 at 7:29 am

  4. My dear friend….I was so sorry to read this post this morning and see that E might be faced with more challenges. But she’s got the best person in the world in her corner, of that I am certain. I know it must be incredibly difficult not to let the worry overwhelm you, but I think this statement says it all: “My child is beautiful and full of life. And we have many happy moments full of laughter.” You guys *will* get through this, whatever it is. Keeping you both close to my heart….

    June 6, 2012 at 7:41 am

    • Thank you, Lori! It helps, having wonderful friends like you. Xoxo

      June 6, 2012 at 8:20 am

  5. Andrea Murray

    Full heart here. To some extent I do understand. Sometimes the worry can overwhelm, and I know writing it down and sharing can be healing for you too. Eliza chose you for a reason, and I know she made the right choice. I’m here. Hugs.

    June 6, 2012 at 10:08 am

  6. Christy

    Strength and love to you, Bubi.

    June 7, 2012 at 9:06 pm

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