“How are you?” It’s a question we hear several times each day and mostly it’s answered without too much thought. “Good.”, “Fine.”, “Great!” — all acceptable options.

Are you ever tempted to REALLY answer the question? Have you ever met someone who really wants the truth?

The last couple of weeks I’ve been teetering between two extremes. Whiteboarding has been remarkable. Jack is clearly reading and able to answer most questions. It’s great until he gets bored — then he just looks at us and circles everything (I’m pretty sure it’s his way of saying FU). The inconsistency has me a little discouraged. As much as I prepared myself for it not being a miracle, part of me hoped that it would be the beginning of true communication. And, maybe it will, but for now I’m left feeling proud/excited/grateful AND frustrated/bummed/cranky — depending on the minute.

I also finally finished the book, Smiles and Duct Tape — Journaling to a New Normal,  last week and sent it off to it’s next step. The relief of having completed the project, and the anticipation to see where/if/how it lands, has me fired up. But, it’s also left me wondering what’s next.  So much of the last couple of years has been spent at my computer reliving the first 1000 days of our journey and reflecting on how our family adapted. Suddenly, I’m feeling a whole lot less secure than I claim to be in my book – like the writing was keeping me grounded.

I’ve felt so off that I’ve avoided much social time, but yesterday my manic mood and I met up with a new friend. I’m not much of a believer in fate, but it was a series of rather unusual circumstances that brought us together. Initially a mutual friend, then Listen to Your Mother, then a disease. Ours ALD/his AMN – same gene, different details, but something that links us and had us eager to meet in person. So we met and “How are you?” was answered easily and very honestly.

This new friend is much more than a man with a “complicated” gene. He’s a father, a husband, a friend, a motivational speaker and a life coach. We shared our stories of ALD/AMN and quickly felt like old friends. When I asked about his career as a life coach, he briefly explained and then offered to show me some techniques.  I wasn’t really sure what to expect, but with his kind eyes and clear questions, I was quickly spilling details of my history and goals for the future. I hadn’t realized how much I had spinning around my brain. I walked away with a new friend (or a guy who will soon block me on Facebook) and so many ideas.

I got home juggling all the possibilities, excited about starting a new chapter. Then, life got in the way – dinner, diapers, dogs. My mood quickly swung back in the other direction. At least I got a peek of where I might be headed. I’m hoping my mood will stabilize soon. Hopefully Jack will come home from school today ready to answer some questions and I may need some more conversations with my new friend. But for now, don’t ask me, “How are you?” unless you want the real answer.

Love, Jess