“We knew the bus was coming and we knew it was going to hit, but we didn’t know how far away it was or how fast it was going.” Michael J. Fox

One morning a few weeks back, I awoke unexpectedly reflecting on Sasha now being twenty-five years old. This birthday, twenty five in particular, has stunned me at various points since it occurred on July 20th. Sasha has been with me, and I with her, for over half of my lifetime. I looked up at the ceiling. In a half slumber state, a flood of adventures and memories streamed past my minds eye. Like rapidly flipping through one of those photo books waiting to see the cumulative image. Sasha’s life was flashing before me; off-roading along the pacific ocean together, playgroups at Gymboree and Synagogues, driving cross country, snacking together out of tiny snack sized raisins boxes, her tiny fingers feeding me. Picking her up from a Los Angeles police station (her exiting their “holding cell” (playroom) stealing a matchbox car on her way out the door. Shattering the back windshield while jumping sand dunes in a pick up truck (oops. Still sorry about that one Mike!). Meeting Alanis Morrissett, who upon laying eyes on Sasha complimented her intensity. Summitting Mount Washington at sunrise (five times!), leaving countless vacations in the middle of manic, sleepless nights. Canceled flights. Breaking down on freeways. Her elopement from apartments, coffee shops, daycares. Seizures on ambulance rides. Our trip to France at just 2 months old (what a cute passport!). Graduating kindergarten in her adorable royal blue cap and gown. Weekends at the Santa Barbara zoo. Tuesday night Jazz Concerts at Los Angeles County Museum of Art. A rattlesnake crossing our path on a solo hike in Pasadena. I could never begin to hope for a life quite as exciting as Sasha’s, however much I tried.

I looked around the room and decided it was time to get up. Undeniably, for some time now, our lives have become quiet. Our days have form but not much outward purpose. Each meal may take forty minutes or it may take an hour and a half each to eat. Physical supports have increasingly entered the home; gait trainers, wheelchairs, ramps, commodes, modified vehicles, shower chairs, special beds. We have an ever growing care team, new physicians on board along with physical and occupational therapists conducting home safety evaluations to help guide and improve these tasks of daily living. Many have entered and stayed in my orbit; friends in the medical field, Sanfilippo Moms and friends from chapters in life so long ago and far away, all painstakingly encouraging me to be open to tools of support. So many individuals have met both Sasha and I where we are at, and for this I am forever grateful.

Last month, I met with our new palliative care doctor, and near the end of our hour together, he asked how I was doing. He told me to consider the emotional components of our visit to be like a little box…it can be taken down from a shelf whenever I’d like, opened, peered inside, or kept closed. It can be put back up on the shelf at any time. And so, when he simply asked “how are you doing?” I explained to him, that this journey with Sanfilippo has been much like a train waiting at the station. Because Sasha’s plateaus tended to last so very long, the syndrome was more like a presence in the corner of a room. It was a train that was parked. I could see it, but it was quiet, not moving, and not threatening to go anywhere. This year, as we have encountered a continuous and steady decline, I know that I have now boarded that train.

I looked up at the ceiling again. What just happened? What had it all meant. (Other than the obvious, which I didn’t really want to look at). But then something dawned on me. I had a yearning. What if I could recreate all of those adventures, the good and the not so good, in one huge, epic season. What if we could retrace our ride cross country, go back to all the old haunts, and after exhausting all the memories from the West Coast of California to Vancouver Canada, jumping on a plane to Provenance, to shop at the French markets once again and have a flaky warm croissant at a boulangerie, and then fly back home.

The quote I shared at the opening of this post by Michael J. Fox says so much. In illness and in health, we really don’t know how fast that train (or bus) is coming. It’s so important to make the most of it all.