By Lorelei Hill
31 Oct

The Terrible, Horrible, No Good, Very Bad Day

Friday, October 31, 2014

Venturing out into the chilly October weather has been more difficult this year than in the past. The hustle and bustle of the world outside seems simply unnecessary, and I find myself feeling really content to stay inside, remain quiet, spend time with my family, and just be happy with life. Yes, I still have “bad” days, yet they seem to fall into a stride of sorts, becoming part and parcel of my life journey.

On the topic of bad days, I would like to introduce to you a children’s book by Judith Viorst. Many of you may have heard of it, particularly since the recent release of a motion picture by the same name—Alexander and the Terrible, Horrible, No Good, Very Bad Day. Throughout my children’s childhood, I often found myself reaching for this book.

Told from the view point of a young boy who struggles to fit in, the book is a wittily funny story that gives anyone who reads it permission to have a bad day. In my experience, both as a CHD patient and a teacher, these days happen. In my family, where CHD, transplant, fetal alcohol, and medication are household words, this book is a way of confirming that we all experience horrible, no good days. It’s what we do with them that truly tells the world who we are.

Early last month, for instance, a letter arrived from my son Riley’s cardiologist. In it, Riley’s doctor explained his decision, after 13 years, to leave the hospital. I felt immediately disheartened and I had to reread it a few times before my mind could fully grasp the notion of bringing my son to see anyone other than him.

Riley is 12 years old; he has known this man all his life. Prior to my transplant, he had been my cardiologist as well as my children’s doctor. I found it hard saying goodbye to him when I transferred to the transplant team, and even harder last year when my daughter was discharged from his service after her VSD had closed. Now, it was Riley’s turn. My heart sank.

More than a doctor, he had become a friend. I trusted his judgment as well as his advice about what was best for me and my children. Saying goodbye seemed somehow unnatural. Given everything that had transpired with me and my own health over this past winter, I was determined not to let this bad news turn into something horrible.

This was also true when I arrived home after my brain infection and consequent surgery in March. Apparently bouts of depression are “normal” after such surgery, and I was no exception. Still, I told myself, this was not going to get the best of me. Knowing these periodic spells were a result of the medication, I immediately fell into step with quieting my life down. Meditation and designated reading periods during the day while the kids were at school helped incredibly, but it wasn’t until I faced my own medical team with open honesty that my healing really began.

“I need a break from you,” I told them. “I simply cannot crawl out of this misery while you have me running each week from appointment to appointment.” Being the intuitive team they are, my nurse practitioner and transplant doctor agreed. Most of my appointments, with the exception of a few critical ones, were postponed until the New Year. Immediately, I felt a burden lift from my shoulders. My old self began to resurface, and those bad days dissipated.

Terrible, Horrible, No Good, Very Bad Days happen to us all. When living with chronic disease, they can very often evolve into weeks, and even months. What my family and I have discovered throughout our journey in life is it’s not the day—or series of bad days—that make us who we are. Rather, it’s acknowledging them, moving through them, what we take from them, as well as what we choose to leave behind that in the end that define who we are. Knowing that I am more than my disease allows my family and I to see the terrible, horrible, no good, very bad days for what they are, and spend the ones to follow in peace.

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