On the Cusp: further unraveling after my child's death
There are moments in life when we find ourselves on the cusp of change. Occasionally we face tremendous change. Life altering change.
Some changes we know are coming. Some we welcome. Some we deny their approach, kick back or fight. Some come without prediction or warning. Quietly, fiercely they arrive.
Following the death of my son Levi, we have passed through many seasons of change. Wave upon wave, each one altering the landscape of our lives.
Looking back over the past six months, I see these changes in the form of chapters. Pages in the book of our lives that will never come again. Thankfully and regretfully so.
My friends in pediatric palliative care call this great expanse of time and space between a known-place (the familiar) and an unknown-place, a Borderland.
Our summer has been a Borderland season and we are on the cusp of passing into the massive chapter of life where plans with / for/ because of Levi being here on earth no longer happen. This is distinctly different from plans that honor, celebrate, and remember Levi. Within this Borderland we are literally steps away…
Chapter 1: Levi on Earth
For 7 years and 2 months all of the events of my life centered around Levi. (long pause… how can such a statement be past-tense?)
Every calendar decision factored in Levi’s needs and his medical complexities.
Could he go with us? How accessible is the location / event? Would he enjoy doing this? Would participating be a hardship for him? What might the weather be like and how will that impact his health issues? Does the space / event accomodate for our family size being larger due to being joined by a caregiver and/or intervener?
Even if I was planning something that didn’t involve him, his needs were taken into consideration. Is someone available to care for Levi? How long will I be gone? How far away is it? How good / bad has his health been recently?
Levi was the kaleidoscope through which our lives were perceived.
His needs became the loom upon which the fabric of our lives were constructed.
Chapter 2: Levi passes
When Levi passed, the loom broke and our fabric quickly unraveled.
All the caregiver shifts,
therapy appointments,
intervener sessions,
clinic visits,
school days;
all of it unraveled
in one swift motion.
All the tracking of medications,
medical supplies,
oxygen tanks,
equipment;
Stopped.
All the hours
and hours
and hours
coordinating
Levi’s schedule
our schedule
around his schedule
Done.
I no longer needed to make my nightly chart of his medical needs for the day to come, update his journal with the events of the day, or things to watch for in the coming hours.
The centripetal force within my calendar ceased.
Chapter 3: Unraveling
In the three and a half months following Levi’s death, we have experienced a continued unraveling of our life with Levi on earth.
Sorting through a portion of Levi’s belongings
so many layers
Rearranging, adding, subtracting furniture
again and again
Preschool ending for Younger Brother
a rare remaining schedule based on Levi
Birthdays and holidays without Levi
each one a first
Nkuku (grandma) moving away
having moved here to help care for Levi
Each unraveling, another wave of change.
Lord help us.
Chapter 4: Intended for You
In the first two months of summer we intersected with all of the plans designed for the boys to enjoy together. Plans designed around Levi’s needs and now being experienced without him on earth. Plans unique to summertime.
Vacation Bible School
MNRI Bootcamp
Children’s Farm in Stillwater
There were big trips we had arranged to enjoy as a family, now cancelled and leaving gaping holes in our summer plans. Echos of what has been lost.
Faith’s Lodge
Seattle
Unaccounted for
visits to favorite parks
playing in the backyard
walks to a favorite taqueria
afternoons at Nkuku’s house
daily routines, evening rituals
all missing our precious Levi
This chapter was tragically sad and profoundly bittersweet. I didn’t want it to come, I didn’t want it to go.
Chapter 5: Final Borderland
We are currently in a final borderland. A stark territory between Chapters 1 and 6. A stretch of time where the plans we had made with Levi and all his contributing factors, are fading. They have been completed or cancelled.
We are journeying toward a chasm forever without Levi on earth. Where his significant needs and challenges are not factored into our plans.
He is no longer the loom upon which the fabric of our lives is woven in and around.
It is an unknown, unwelcomed territory. Any and every plan we make for our family in the days, months, years, decades ahead will be without the centripetal force of Levi’s presence on earth.
How do we even begin such a chapter?
The cusp of this borderland is emerging. It will arrive within days of releasing Younger Brother into his kindergarten adventure. An enormous moment in and of itself for a parent.
My vision of what follows this moment will again unravel.
Having imagined I would return home from kindergarten drop off, to be home with Levi, where he and I would be able to come full circle, years later, back to the days of just us at home for hours on end. He and I engaging with the many helping hands and hearts of caregivers, therapists, and teachers. He and I navigating his medical cares, therapies, snarfies, emotions, and desires.
He and I…
and I…
I…
unraveling
my final vision of his life on earth
unraveling
By the time Labor Day arrives, our family will have crossed beyond the thin permeable membrane on the edge of this borderland into Chapter 6.
Be still my heart.
I want neither to stay here in the borderland, nor to continue forward.
Both are places, spaces, without Levi on earth.
Yet the moment will still come.
How will I pass through this
thin quiet membrane
into the next chapter?
Heavy hearted
dripping face
again crying out
to the only One who can
embrace me as I
surrender again
into my baptism
dying myself
arising in Christ
alone
Lord lead me through this valley of the shadow of death. I (choose to) fear not for you are with me. Your rod (trustable protection) and staff (support) they comfort me.
Psalm 23
