What happened when I was busy making other plans.

Trapeze Parenting


So here we go again on our journey back to good health. Two and a half years after being diagnosed with ITP at age 6, my daughter, E has now been preliminarily diagnosed with Crohn’s Disease.

With her ITP in remission, this new news is a huge setback to E, who, more than anything, wants to just live her life like a normal nine-year-old, without pausing for things like medications, blood tests, hospital visits, and worrying about whether her stomach will cause undue embarrassment for her at the worst possible moment: in front of her peers at school or camp this summer.

As before with health crisis #1, my parenting m.o. is to return her back to living a full and mostly uninterrupted life as soon as possible—or as soon as her body will allow it. Determined sorts, philosophically we are in accord that she will not be defined by her condition(s). I take her lead on how much (or how little) she wants to talk about it, and with whom, with the caveat that as before, I must tell anyone who is taking care of her (teachers, camp counselors, school principal, school nurse, etc.) what’s happening so we can set up protocols for her care and well-being, and they have a clear sense of what to do if something happens.

Though I’ve never done any time on the trapeze (and probably won’t. I don’t dig heights. Though I did hike Bonticou Crag: http://www.nynjtc.org/hike/bonticou-crag, so I guess anything is possible), parenting a child with a chronic illness seems a lot like what I imagine navigating the high wire would feel like. On the one side, you need to be supportive, empathetic, present. Nothing like a health crisis to remind you about who and what comes first. On the other, there’s the need to keep in place all of the expectations and limits that a high-spirited almost-tween needs. In her less than stellar moments, I often remind her that as her mom, my job is to raise a human being, not a beast. And while she does an admirable  job holding it together for others, she can, at times, be a total pill with her close family.

Some of that was directed toward me yesterday afternoon, and I called her on it. After apologizing begrudgingly, E replied, “But I’m angry. I don’t know what to do with that.”

OK. No one likes being dumped on, but I take a step back from our mother-daughter fracas to appreciate her comment. No, I don’t like the behavior. And no, I don’t deserve it. But I am very grateful that my kid is so in touch with her feelings and able to express them. She’s always had a lot to say, and never had a problem saying it, often incisively. I have faith that her ability to identify and articulate her feelings will help her in this second-round fight back to better health.

Over the past few days, we’ve had an ongoing conversation about other things she can do to help her heal herself. She asked me what I do to stay in good health, so we discussed some of my go-to remedies. We talked about going to a doctor who she can talk about her feelings with. “Can we go Saturday?” she asked me. She’s eager.  Yoga: Bored of downward dogging at age 5, she now says she’s willing to hit the mat again. We talked about acupuncture. E has witnessed me ‘get needled,’ and vehemently opposed it before. She’s now willing to try it. Like me, when faced with an acute health issue, she is game for the kitchen sink approach . . . don’t just do one thing, do many things. Then figure out what works.

So another chapter begins, the one where we learn through trial and error what works best to get her back in balance. In the meantime, I’ll stay up here on the trapeze and do the best job I can to not fail her. There will be no perfection; I expect to fall, maybe often at first. I am counting on those nets beneath me. But every day I’ll get myself back up there and keep trying. I owe her that.

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6 responses

  1. E’s insight and ability to articulate her feelings will serve her well in the long run, and what a *gift* you have given her in giving her permission/allowing her the freedom to express those thoughts, even when they come at you in the form of invectives. You’re an incredible mom, Karen, and I just know you guys will pull through this latest challenge and both come out the other side stronger and wiser. It’s who you are. Please know that you’ve always got a ‘net’ with me–I’m happy to listen anytime. Big hugs, L

    July 5, 2012 at 9:01 am

  2. Judie lande Lieberman

    Karen,

    The super mom award is being sent to you now. You are incredibly strong at how you are dealing with E’s health issues. I love your and E’s approach to the “kitchen sink.” It is amazing how different remedies will help our bodies. I know you both will come through this challenge on the other side stronger, but it sure sucks to have to go through it. I have grown up with epilepsy and there are always challenges that I have had to face. I used to do all sorts of tricks of how I could avoid the medication, blood tests, hospital tests etc. when I was a child and teenager. I wish that I had the same dialogue with my mom and you have with E. My life as a teen would have been so much better! I do recall my neurologist telling my mother to “look around the waiting room and see what the other children are facing. Kids were weating helmets on heads etc….. ” Good luck with your journey, Judie L.

    July 5, 2012 at 9:23 am

  3. Lex Engel

    Hi:

    I’ve lived with Ulcerative Colitis since I was 12 years-old. I’m now (gulp) 50. Very embarrassing when I was younger. Many hospital stays. I was cured around age 23 by Dr. Daniel Present who did the trials on a new drug which changed my life for the better within a couple of months. I don’ think he’s retired yet—he works with other great doctors who will continue his practice/legacy after he does leave the scence. The drug is 6mp and I haven’t looked back since. Maybe it can help your daughter? Good luck!

    July 5, 2012 at 11:40 am

  4. Ruth Gordon

    Kenny and I always want to be your net….we love you and Eliza largely and forever.
    I am proud to be your mom and to be Eliza’s grandma.Thanks to these wonderful folks
    who so elequently reach out to “The Eliza Team”.XOXO

    July 5, 2012 at 4:20 pm

  5. Christy

    Remember, the net is taut with so many friends and family around it for you both, and a taut net is bouncy. 😉

    July 5, 2012 at 6:58 pm

  6. Pam

    Hate to hear this but I know she will rally and so will all of you.. you are one special, wonderful family…..

    July 7, 2012 at 8:26 pm

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