With chronic illness, you have good and bad days, and you never know how you’ll feel when. It puts a damper on being reliable.

As a type A++ personality, this is a huge struggle for me. I’m a super punctual, likes everything just so, don’t flake kinda girl… or at least, I was.

This weekend tested me. We had a special date night planned with Ellie. She’s an exceptional little person and deserves every good thing. After staying home for the greater part of a year, all she wanted to do was visit a bookstore, have a root beer float, and lay in bed and read together. That’s what I wanted too!!

We’d been excited about this all week and sure enough, as Friday approached, my body was becoming weaker with tremors and tachycardia. Since I could stay fairly stable as long as I sat down, we loaded up the wheelchair and pushed through.

There’s something alluring about shelves filled with books: the stories and thoughts, the millions of things you don’t know yet but could.

El was elated to be back in the world again.  She scanned the shelves of books and petted each stuffed animal. She said it was like a dream.

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I was the opposite of content. It turns out that I don’t like being pushed in a wheelchair. I like to start and stop when I want, go at my own pace, turn when I want to, face the direction I want… I had no idea how frustrating giving up control would be and how unkind it would make me feel. John patiently adhered to my directions but I’m pretty sure it took all of his strength not to park me in the corner.

I eventually asked to be left in an aisle. I was tired of feeling like luggage. Nights in general are harder for me physically, so that probably added to my irritability. Next time, we’re making daytime plans.

Sometimes, I think giving up control is one of the biggest lessons in being ill. It’s not one that I’m doing well with yet, not by a long shot. I can’t control how my body feels, when I’ll be strong enough for an outing, or whether or not I’ll be able to walk independently or need a mobility aid on any given day. So I need to work on controlling how I respond. Ironically, I know this comes through surrender. That’s where I will find patience and a deeper gratitude for the moment. If I keep trying to control the uncontrolable, I’ll go mad.

I was irritable and not feeling well, but we pushed through and had a beautiful night. I would snap and I’d apologize. I’d forgive myself and try again.

John handed me this book as a joke when I was being especially evil. It actually hit the mark so it came home with me.

My book picks:

I love, love, love reading anything about near death experiences. Imagine Heaven pairs near death experiences with biblical promises. I think I’ll read Suffer Strong first though. I’m just finishing up Katherine and Jay Wolf’s first book, Hope Heals. It details how they leaned on God when Katherine underwent a massive brainstem stroke as a young mother at age 26. I’ve found myself repeatedly drawing from their strength over the past few weeks. Reading their story has put beautiful thoughts in my mind and and in my heart.

Ellie’s book picks:

She’s a huge fan of the Wings of Fire series. She likes to read the books first, then the graphic novels. I love it when she can’t put down a book. White Fox is the first in a series of books that has been translated from Chinese to English. It’s a bit of a dark fairy tale. We’ll see how she likes it.

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Most importantly, Ellie had a great night and that’s all we really wanted.

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Here’s a little more about my story and how I’m coping with chronic illness.

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