Outage

We lost internet connectivity during the entire day before, and during most of, Christmas Eve. And, our home was the designated collection point for Christmas Eve dinner and initial gifting! What to do?

Well, we and our grown children had conversations, about many subjects. We took stock of stored DVD’s. We watched movies from yesteryear. I found a deck of cards and figured out that all family members, young and old, could play and enjoy Black Jack (or 21 as I used to call it). And, with the help of natural gas, we enjoyed a fine meal prepared by the two chefs in my life, my oldest daughter Ashlee and life companion Mimi. I actually read (but did not sing) verses to famous Christmas carols, especially the old ones from hundreds of years ago. Those historic songwriters really mastered the old English language.

How does this circle back to DMD? The parallelism.

Looking back on the last nearly four years since Hayes’ DMD diagnosis, the countless conversations we have had with other DMD parents and grandparents, medical providers, non-profit sources, lab supporters, and each other as to how best we should tackle the dream killer have always been quite informative, even to the point of being encouraging because everyone on the arena has a story or update to share.

We have intentionally embarked on adventure after adventure, recreating at fun venues, enjoying the outdoors, and feeding Hayes’ high intellectual curiosity. He will always have those memories as an emotional anchor and source of joy in the future when things are not going as well. Furthermore, we enjoy each other’s company around the dinner table more often.

I find my prayers for hope to be a bit more mature, not just asking for some result but rather seeking the strength to maintain a consistent and calming faithfulness that helps my anxiety and occasionally seems to rub off on the rest of my family.

DMD creates outages, some expected, some not so much. This year’s Christmas Eve internet outage has reminded me of the importance of enjoying the simple joys of life, finding strength in family and faith, and planning or looking for the next adventure together. Tis a time of the year to focus on what is truly important in Life, indeed.

Kindly yours,

Papa in Franklin