A Marathon Season

My daughter’s cremains are in a bag, in a box, in a box, in a bag, in my living room, mostly because no one explained how hard it would be to gather up the gumption to scatter them, even though Phyllis and I had already decided where it would happen. So for now, they sit, slightly hidden in the tote bag I brought them home in from the crematorium.

Who knew?

A marathon is run one step at a time.

An excursion of 1,000 miles begins with a single step.

A long haul trucker runs his route one mile at a time.

I know all the clichés, most of which only scratch the surface in explain how hard all of those journeys truly are.

Or that there are gaps in the journey, empty spots filled with nothing but blank stares and open wounds.

I’m still behind, still trying to catch up, still grateful for understanding clients and friends. My lapses have put more than one project’s schedule at risk, and I’m hoping when all is said and done they want to hire me for future projects. I certainly wouldn’t blame them if they didn’t.

I’ve put my own writing on hold, and I’ve sometimes edited far longer during the day and into the night than I should. But of the six projects desperately behind schedule, three have been turned in, one is slightly on hold, and another is close. One more will be tackled in short order along with two new ones waiting in the wings.

I most certainly didn’t have time to take six weeks to stare at the wall…or the floor…or a blank page. But even if I tried to work, my brain did not cooperate. Reading the same page five times, unaware of anything there, does no one good.

I couldn’t read. I couldn’t even pray. There were just no words in my life.

Then…one day…I realized my brain was coming back to life. Adjusting to its new reality.

It’s odd, this new place. I no longer have regularly scheduled trips to Phyllis’s house. I tried at first, until we both realized that our coming together to talk about Rachel was delaying our healing. Our day-to-day had slipped into a kind of normality…until we talked or saw each other. Then the pain came rushing back because we both loved her so deeply and knew the other did as well.

We had lunch this week. We’re better. But the edge is still there, and it’ll take more time to dull.

It’s odd, this new place. I don’t know who I am anymore. Oh, my personality hasn’t changed much…still Ramona…and I have close friends who love and support me. But when you’re the parent of a special needs child, your identity is more completely wrapped up in being “Rachel’s mom” than many parents can grasp. From the time average children can rollover and babble, their journey is toward independence. They move away from their parents, then join them in the regular world. School, sports, ballet, music, jobs, grandchildren.

With Rachel, her very existence depended on our care. She couldn’t eat, drink, talk, walk, or do anything for herself. For almost 29 years, we groomed her, fed her, changed her diaper. (Over her life, she went through about 53,000 diapers. No typo. 53 thousand diapers.) She could not be left unattended at any time. She was too fragile to be more than a room away, in case she choked, scratched herself, or went into a grand mal seizure.

I took great joy in clipping her nails, massaging her legs, even cleaning the jam from between her toes. Even the gritty parts—such as cleaning out her nose or manual bowel extractions—built into our intimacy with each other.

When we changed her clothes, we had to take care to smooth out all wrinkles in the sheets, towels, shirts. We kept a watch on every inch of skin, on guard for pressure sores. Serious vigilance that paid off. Until the day she died, nurses and doctors complimented us on how great her skin looked, remarkable for someone who lay on their back 24 hours a day.

I sometimes wondered if she fussed because something itched or tickled. The next time you have the urge to scratch or flick away a bug or a tickling hair, stop before you do, and consider what it would be like NOT to be able to do those things…or tell anyone about them.

We were her advocates—and she was ours. Adding as much to our lives as we did to hers.

And, oh, that smile! That laugh! She brought into our world the purest of all joys.

It’s odd, this new place. Where none of that exists. And this marathon isn’t just about “getting over” her or “getting through” the pain. Truth is, neither of those things will happen anytime soon. That’s just a reality I’ve a

ccepted.

Instead, this marathon is about finding a center in this new place, a new identity, a new grounding. Work is part of that. And friends. Releasing myself to do things I’ve not be able to do for many years, such as long trips, maybe even overseas. Maybe even a new job in a new city.

 Who knows? Once my world was Rachel…and work.

In this odd, new place, the unknown awaits.

And tackling it is a marathon in and unto itself.