What happened when I was busy making other plans.

Summer of my Discontent

Today is the first day of fall, and I’ve been looking forward to the change of season for a while now. Summer is usually my favorite season: I love all of the opportunities to swim, hike, be outdoors for hours on end and wear dresses without feeling cold. But this summer—I guess the best I can say is we got through it OK. Overall, it was a rough go.

It started off badly and got worse, then somewhat better. By June, my daughter, E, was having acute stomach pains, and despite two rounds of tests that said she was negative for IBD, her inflammation marker was very high. The last two weeks of school were torture. I called the doctor and moved the colonoscopy/endoscopy up a week. E got through the tests like a trooper but the news wasn’t good: Widespread inflammation indicative of Crohn’s disease. She was put on a host of meds; for several weeks, she only marginally improved. After fighting to avoid steroids but seeing little improvement, I relented. It was back to the pred again–a four-week stint, less than she’d had in the past for ITP, but the last thing I wanted. Friends in-the-know told me not to fear it this time. They were right: E started feeling better after a few days, and was virtually symptom-free for the last weeks before school. Our last visit to her GI in early September brought more good news: Nine days after going off steroids, the inflammation dropped to normal levels. All was looking up. We took her off another medication.

But in the past few weeks, the pain has returned. So we’ve added another medication. And completing a new round of tests. And she’ll be having an MRI on Columbus Day. And she may still need to see this world-renowned immunologist to rule out anything worse (as if two chronic autoimmune diseases, one of the blood, the other of the intestines, weren’t enough). I feel like a stranger in a strange land: GI-Ville, where little is known but much is tested. I wish I knew how to get us to a better place, but right now it feels like we’re walking down an unfamiliar road in a place we’ve never been—in darkness.

It’s not all gloom and doom, though. When I step back, I can see we’re holding our own, able to enjoy the good days without globalizing the not-so-good. We’re still having fun. We still laugh a lot. But I’m finding it exceedingly difficult to maintain a state of calm. The worry is incessant, like the ocean tides. Sometimes it’s low, sometimes high–but always there, reminding me that something just isn’t right. My child is sick. Again. And being like this for so long now, I’m starting to question whether I’m able to see things straight anymore. The rawness of it makes me question my ability to get a good read on things; I question how my emotions are skewing the picture. Am I overreacting too much? Am I turning what used to be minor annoyances into small-scale catastrophes? Am I fighting to be right instead of leading with kindness (my mantra to E)? I hate the drama of it all.

I’m hoping the change of season will reveal whatever our new normal is. Maybe then we will enter a new chapter of understanding, acceptance and peace.

6 responses

  1. Ruth Gordon

    You are so brave;awesome in your ongoing effort and devotion. We love you and Eliza so much.XOXO

    September 23, 2012 at 8:26 am

  2. Oh Karen, I am so sorry. I cannot imagine the strain you must be under. I’m not going to trot out any platitudes–I know they would ring hollow. Just know that you and E are in my heart and I am sending TONS of good juju your way. Keep the faith, honey, you’re both strong women and I know you’re going to get through this…. xoxo, L

    September 24, 2012 at 12:26 pm

  3. Reblogged this on Running in Crocs and commented:
    In case you missed it, my latest blog. Thanks for reading and commenting!

    September 24, 2012 at 1:39 pm

  4. Andrea Murray

    It’s amazing you are able to articulate all of this. Eliza is SOOOO lucky to have you.

    September 24, 2012 at 7:19 pm

  5. Christy

    Allow your instincts to guide you, and it’s okay to think with your heart. Toss in a good dose of level-headedness, and hang in there. All have gotten you and E this far.

    September 24, 2012 at 8:41 pm

  6. Thanks, Lori, Christy, Andy, Mom! Hearing your take on it–and just feeling the support from you–makes all the difference. We love you.

    September 26, 2012 at 7:10 pm

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