What happened when I was busy making other plans.

Three years ago today . . .


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. . . my daughter, E, then age six, was diagnosed with ITP, a rare blood disorder. This photo was taken that night, as she was wheeled from our local ER into an ambulance that would take us to Westchester Medical Hospital, our home away from home for the next seven months. Three years, dozens of hospital visits and overnights, a plethora of medications, and several doctors later, her ITP has stabilized. But before we had a chance to fully celebrate this news, this past spring, an underlying condition, Crohn’s Disease, has emerged as the bigger threat to her return to good health.

Before December 5, 2009, I never understood how people who experienced a life-threatening illness—either having it themselves or being caregiver to an afflicted loved one—would say they were grateful for what it did to them. Now I do.The hope is that when something really bad happens to you, you learn from it, and hopefully evolve into a better form of you. I think we both have.

Here’s what I’ve learned from all of this:
1) Life has lots of good and bad. Life is not about fairness. Or God, for that matter. God didn’t do this to E. Sorry, I just don’t buy it. If there is a God, she doesn’t micromanage. Shit really does just happen.
2) If you get stuck in the “Why?” you can never get to the “What do we do?” That said, it’s important to take the time to grieve and process. But not live there; move on.
3) The Caregiver’s Guilt–why couldn’t I take the hit instead of her?–serves no one. The caregiver’s job is to be strong.
4) You can’t dig yourself out of a hole if you can’t get past the hopelessness. If that’s where you are, get help. As my doctor said to me,”The mind is not equipped to handle this much stress for this long.” And yeah, sometimes that means meds.
5) Caregivers need to do whatever it takes to heal themselves, sans guilt. In my case, it was a few months of happy pills, followed by continued practices like therapy, acupuncture, hiking, deep breathing/yoga, blogging/other venting via social media, and time with family, friends, and B, my partner in love and life.
6) Celebrate the good moments. Nothing like a health crisis to teach you that you can’t take life for granted, and that every pain-free day, every joyful new experience, is a reminder that life is about the now. You get through the bad days so you can have better ones. And then relish them.
7) It’s an honor to be the caregiver. Having someone trust you with their life, their well-being. I wouldn’t want it any other way.
8) Love is everything.

Xoxo

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10 responses

  1. What a beautiful paean to the power of the human spirit, Karen! Yours is a bright light and I am in no way surprised that you have ferreted out the positives in this experience. It’s who you are. You set a formidable example, my dear. Blessings to you and E and Brian this holiday season…. Xoxo, L

    December 6, 2012 at 5:18 am

    • Thank you, Lori! Thanks for being you and for being my friend. Xoxo

      December 6, 2012 at 11:56 am

  2. becki

    plainly and simply, perfectly said karen. how fortunate you are to have gained such wisdom from a situation so extrordinary.

    December 6, 2012 at 7:28 am

    • Thank you, Becki! Means a lot, coming from you!

      December 6, 2012 at 11:55 am

  3. Judie lande Lieberman

    This is exactly what I needed today as I opened up some new medications for my own daughter. I am so thankful for your strength and understanding of being such an incredible mom. I already started the guilt thing last night and decided that it is just not worth it. Thanks for your inspiration this morning. Now, I am off to yoga!

    December 6, 2012 at 9:03 am

    • ❤ to you both–I sent you a separate message on this. Hope you had a good yoga class!

      December 6, 2012 at 11:56 am

  4. Geoff Loftus

    Great post. My only slightly negative comment: No mention of the healing power of caffeine and chocolate. I live on that stuff. But never mind me. Lots of good things in here. Thanks for sharing them.

    December 6, 2012 at 11:18 am

    • Good point! As you know, we are in accord there–I, too, believe they both are healing! In hindsight, I also wish I wrote something about how almost everything can be funny. Not that this is some sort of comedy show–it’s not–but E and I share the ability to laugh at many things, even at very serious times. And I think it’s helped us.

      December 6, 2012 at 11:47 am

  5. Christy

    Inspiring. Truly. Love to you both.

    December 6, 2012 at 10:13 pm

  6. Les

    Beautifully said and very brave (how like you). Thanks Karen.

    December 11, 2012 at 8:45 am

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