Fragments of a Routine: what remains after the death of a medically fragile child
I have lost my son.
I have lost his community.
I have lost the rhythms and routines of my day.
I have lost my job.
Only fragments remain.
I have lost my son.
After loving, parenting, and caregiving for my son, who for seven years lived with medical complexities, I am faced with his death and the ripple effect into every aspect of my life. The death of him, as my son, is enormous. All by itself it is enormous. As a parent of a medically complex child, I am simultaneously confronted with multiple deaths.
I have lost his community.
My firstborn son, Levi, was very medically complex from day one. Our home became an ICU to support his needs. It also became a therapy center, his school classroom, and our social outlet. At all hours of the day people would come in and out of our home, teams of people, to help us care for Levi: physically, medically, developmentally, emotionally, socially, spiritually. Nurses, PCAs, Therapists, Interveners, Teachers, Specialists, and the list goes on and on. Even the guy who delivered the oxygen tanks or the one who showed up to replace malfunctioning medical equipment, or the jolly one who came annually to fit his orthotics; my son’s community included all of them.
I made it a point to offer the gift of hospitality to everyone who came. I created a “Cheers” environment Where everybody knows your name, and they’re always glad you came. I couldn’t care for Levi alone, I needed the whole team. I choose to value them as people in recognition that their humanity was what transformed the “purpose” of their being in my home into something meaningful to my son and our family (and hopefully meaningful for them too.) Some I saw monthly, others as often as five times a week. All of whom I shared time with more than the people I knew previous to my son’s birth. Most opened up their lives and hearts to me. As a result many became friends.
When my son died, the comings and goings of this community into my home ended. My once active home is now still. Before my front door would open 6-8 times a day. Today it opens because I get the mail from the mailbox. I had a three-color coding system within my calendar to track just my son’s needs and the people who came to support him. Our / his life was scheduled for many months in advance. Today all three colors go unused. Day by day I am faced with deleting each of these events on my calendar. Several within a single day. I can only manage to delete “only this instance” as the days roll forward. I can’t bring myself to delete “all following.” I would rather remember and be confronted with these losses than to simply erase it all.
Maybe once a week someone from this community comes to visit. Nearly all come because I intentionally invite them over. Very few reach out to me and ask to come. I recognize they are grieving too and grief is unique to each person. I recognize they came previously because I coordinated the schedules. In this way, things are similar. Every time they do come and leave, I wonder, will I see them again? What if…?
The loss of each person coming in/out of my home, for the purpose of caring for my son, is an additional death in my life. It is simply not possible for anyone to come over and do what they once did. I recognize this is another death for them as well. A death of routine, pattern, and intimacy.
For some, the nearness of our friendship will remain as it transforms. Although I don’t yet know which they will be. All of us will continue to be bonded through the shared experiences of caring for my son. There will be a deep familiarity for having once been a community together in my home. We will all carry with us some aspect of grief and loss as a result of my son’s death and this ending.
I have lost the rhythms and routines of my day.
Every routine of every moment of the day was structured around my son’s needs.
His schedule was created first and everyone else’s fit around it. His schedule of caregivers, therapies, homebound school, clinic visits, and visitors. Who was caring for my son when determined the preschool options I could consider for my younger son. I had to have someone who was skilled enough to be left alone with my son while I took younger brother to/from preschool. This was so for going to the grocery story, stopping by the pharmacy to pick up medications, and any reason that required me to leave our home.
While I was away from the home I was always on call. I could receive a text or call about a shift in his health and questions on how to handle it. A call that a therapist wasn’t able to come as planned. A text requesting to reschedule a shift from one of his caregivers. Additionally, in times when my son’s health was in question, I would call home to check in on how he was doing. Proactively helping to navigate the illness he was wrestling. After these conversations I would navigate if it was best to run one more errand, or better for me to return home and be more available to my son and his caregiver? In the last several months of his life, I most often left the additional errand undone and headed home.
The immediacy of his medical needs often interrupted the most basic of rhythms of life. His feeding pump would beep at the end of a dose and require attention. His airway would get obstructed and we would need to assist him in clearing out the congestion. A medication would need to be given. The oxygen tank would empty and need to be replaced. These moments happened while in the middle of cooking a meal, just as we sat down to say grace before eating, right after turning on the water to take a shower, in the middle of brushing my teeth, as I laid my head down next to his to sleep, and when standing before my closet determining what to wear that day. These basic rhythms were interrupted daily.
Today my basic rhythms are interrupted by silence. I still pause, like the parent of a toddler, and wonder why have things been silent for so long? (Usually a sign that the toddler is into mischief) But I ask, shouldn’t something have beeped by now? How come _____ hasn’t arrived yet, they are always on time? And then I remember…
Our larger rhythms don’t exist, they have shattered.
Monday was Monday because of who came when into our home. Same with Tuesday, Wednesday, Thursday, Friday, Saturday and Sunday. The rhythm of each day was different. This was true in late fall, winter, and spring. For summer it expanded to include ‘where’ we went. Sometimes it was somewhere lovely like a park, many times the ‘where’ was a clinic visit to check in with one of my son’s many medical providers.
Every rhythm was saturated by my son’s presence and his needs, particularly the medical ones. When he died the meaning and reasons for our daily rhythms emptied out like a deflated balloon. Only fragments of routine remain. What was once secondary to my son’s needs is now the remnant. Everything else is different, changed, and unfamiliar.
I have lost my job.
I was so much more than a parent to my son with medical complexities. I was his nurse, chief medical expert, advocate, lead educator, scheduler, HR department, backup staff, financial coordinator, administrator, responsible party, doorway to friendships, planner, dreamer of what might be possible… My identity as a person was also woven through all of these jobs. This was a 24/7 job, and not just in the way parenting is 24/7, but in the way an ICU is 24/7. Relentless, non-stop, and with shifts so long they would be considered illegal if I were working in a hospital.
The moment my son died, I lost all of these jobs, one of which I was also paid 40 hours a week. There are deep holes in my heart, my home, and my budget.
The job I now have is clean up crew. Cleaning out his unneeded medical supplies, equipment, and therapeutic toys. Gathering and returning educational materials to the school. Closing out his payroll, invoices, budget, bank account, and medical files. Washing and storing his clothes, bibs, jacket, blankets and beloved “snarfie cloths.” Determining what to keep, what to share and give away. I am so thankful he had friends we can generously share what was once his. It makes a portion of this process easier.
The word carcass keeps coming to mind. The medical supplies, therapeutic toys, storage systems, medical equipment, even the arrangement of our living room (where he spent most of his time) have all become carcasses to me. Vacant, empty, lacking purpose and full of the weight of loss of my precious son. They are underlying structures and remnants of my son’s complex medical needs and the modifications we made to run an ICU in our home. I struggle with how soon to clear out these things because I fear forgetting. And yet I can’t live among such weighted emptiness. So I clean one drawer, one shelf, one corner at a time. Lighting a candle each time as a reminder to myself that I can and will remember.
What remains
At best, what remains are fragments of this life I once lived with my son. The shattering of our routines and loss of his community are profound. They are deaths on top of his death. My disorientation is continuous. I feel lost within my own home. I am overwhelmed by how few of our routines remain the same. Silence has become loud and invasive.
To be able to brush my teeth without interruption is new. To cook dinner without greeting a caregiver as they arrive for their shift, is new. To hear younger brother say repeatedly throughout the day ‘I wish someone would play with me’ is new. To have the opportunity to sleep through the night (not that I do), is new. To be able to run all my errands in a single outing, is new. To not have to be checking my phone all the time, is new.
Each person in my family: myself, husband, and younger son; each of us has our own version of these fragments. What remains for me is different than what remains for my younger son. He still goes off to preschool three times a week. He engages with his teachers and friends. What I do while he is at preschool has changed.
My younger son was born into an ICU home. A home full of the comings and goings of many adults, many of whom took the time to engage and play with him too. His developmental growth has benefited from these interactions and the many perspectives of the therapists. He has no other references to “home” and family life without his brother and teams of people. Soon the school year will end and so too will his preschool rhythm. What fragments of life with Levi remain for him will soon be lost. His disorientation is continuously earth shaking.
How we sleep, get up in the morning, eat our meals, interact, how we get out the door, where we go, who we see during the day, when we see them, what happens after dinner, during bedtime, how we fall asleep, what wakes us in the middle of the night… all of it has changed.
What remains today are
days and times when my husband goes to work
when my younger son goes to preschool
that we three live together
the home I live in
the car I drive
the clothes I wear
sometimes what food we eat.
At best these are fragments of the life we have known for seven years. Everything else, every routine, every aspect of life has changed, permanently.
I know in my heart, somewhere in this void, little moments of opportunity will arise like a phoenix, to transform our fragments into something anew. I trust the Lord is faithful to transform my ashes into beauty. My fragments into a mosaic. Somewhere, somehow, sometime.
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Be merciful to me, Lord, for I am in distress; my eyes grow weak with sorrow, my soul and body with grief. My life is consumed by anguish and my years by groaning; my strength fails because of my affliction, and my bones grow weak. Psalm 31:9-10
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the Lord. Jeremiah 29:11-14
