What matters in the moment…

My daughter, Erin, was hospitalized with endocarditis after her 4^th heart surgery for almost 3 months in the PICU.  She was 17 and had Down syndrome.  She had many complications and surgeries during her hospital stay and survived due to the collective care of her team of numerous doctors, surgeons, and nurses who cared for her while in the hospital and through outpatient support provided for the following ten months at home before her passing.   What mattered most to our family concerning the medical professionals in the midst of trauma and uncertainty was how they were fully present in the moment with our family and our daughter…

To relive details of the last year of my daughter’s life is something I have replayed in small scenes as I wake up in the morning.  At one time it was every morning, but now it is more occasional during each month. It has been a process to move from remembering Erin sick and suffering to her silly and happy self-full of life and mischief- before her illness.  It happens in that moment of semi-consciousness when I am just becoming aware it’s morning.  I lie still not wanting to disrupt that sense of her that allows me to notice just for a moment a feature of her face, hair, hands, or stature.  I can focus hard on the sound of her voice not wanting to forget it or the way she moved and uniquely expressed herself.  It brings joy in the memory quickly followed by the despair and renewed realization of her absence.

For many months after Erin died, the early morning was a time I replayed whole episodes of traumatic nights during almost 3 months in the PICU that revolved around blood pressure, heart rates, CRRT dialysis, ECMO, or the flow of doctors and nurses in and out of Erin’s glass-enclosed room all night.  Sometimes, I awoke during the night with my heart racing as I heard the agony of a parent losing a child in a neighboring cubicle.  One night, I l was lying on the bench in Erin’s room in the middle of the night just several feet away from a sobbing mother sitting with her sister in the hall after her 3-year-old son had died minutes before.  I looked up before turning over in attempt to give them privacy to see the child’s doctor filling out a chart behind them with tears streaming down his face.  I remember another family gathered outside the PICU after a teen boy passed with a nurse sitting on the floor beside them hours beyond her shift quietly offering support by being present in the moment.

If asked, I can recall with dates and details the progression of Erin’s illness: all the incidents, the surgeries, the infections, the tubes, the medications, the procedures.  I can recall in great detail the “events” that were surrounded by numerous doctors and nurses streaming into her room, the severe drops in blood pressure, the interventions, the unanswered questions about why it was happening, the talks with doctors sitting in a conference room asking if we wanted to intubate, operate, or just make Erin comfortable and let her pass. Something that mattered in the moment was to be heard-to be able to say what my daughter’s life meant to me, to my family, to my community.  It mattered to have the undivided attention of the doctors, to ask questions, to hear answers in language and illustrations of how body systems “felt” or “got along together” or reacted to “insults.”  These personifications made sense in the moment and were consistent explanations among attendings, interns, residents, and fellows.  It mattered in those horrifically candid conversations to hear from a doctor he or she felt I was a good advocate, to be heard, to feel I did something by telling him or her how much my daughter’s life mattered.  It matters most now that Erin is gone that I stood up for her with all the strength I had in me and that I was assured my opinion made a difference in that moment.

The details about the labs, the complications, the regiments, the medications, and the protocols are ingrained in my mind.  I remember sitting with 3 doctors in the PICU waiting room telling them I would do anything if I could only take Erin home.  She was off ECMO and had slowly come off intubation.  She woke up after weeks and weeks of  serious issues warranting putting her back on the ventilator soon after its removal.  She looked at the walls of her PICU cubicle.  I had changed seasons and holidays on the big window that once had displayed Valentines, snowflakes, shamrocks, and Easter bunnies.  She looked at the pictures of our family that still covered the walls around her.  She looked at me and said, “Mom, I missed you.”  She told her sister on the phone, “Diana, I’m here now.  I’m right here now”.  I absorbed every detail of those moments seeing Erin remember who she was and her connection to those she loved.

Throughout her illness, the doctors and nurses talked to her as if she was awake even when she was not and encouraged us to do the same.  I watched as they modeled interactions with her respectfully and preserved her dignity each time they moved her body, cleaned her, or changed her dressings or her bed covers.  The moment we returned from eating a meal to find Erin’s hair brushed and freshly braided by the beautiful nurse with long braided hair is one that frequently comes to mind and warms my heart.  Erin was all about the hair and would flip hers upside down to put it up in a hairbow to follow the model of a classmate doing the same thing during the years she was in my self-contained special education classroom at school.  What mattered in that moment was the sweet nature of the nurse who just smiled when we told her how much we loved Erin’s hair.  I now sit sometimes and think about how she took time to detangle and make Erin beautiful in a moment shared only between them.  I now think of what that moment meant to Erin as she watched that long braid of her nurse.

I now remember the early morning lab results that the dialysis nurse brought up on the computer in Erin’s room.  I learned what they meant and asked questions about how they impacted Erin’s progress all day long.  I remember many dismal days where I learned to read the faces of nurses and doctors who knew Erin’s condition was declining and weeks they did not expect her to survive.  I remember the conversations with doctors and nurses while leaning on the railings of her hospital bed where the explanations were clear she may not improve or worse.  I also remember the dialysis nurse who met me each morning at 6:30 A.M. to report the labs results and help me find one positive change, however small and insignificant, just because I asked her to look for it and give me a number to give me hope.  I would report that number from the lab each day and hang onto it during the more difficult reports.  I knew it might be insignificant to the bigger picture, but it kept me standing beside her bed, singing in her ear, and holding her hand.  Understanding the fluctuating numbers and learning about the pathways of her condition gave me a focus in the present as well as the ability to refocus and revamp my expectations of her future.  I committed to being positive in the moment for whatever that meant, which gave me strength and perseverance to ready myself for what would be required of me in the next steps of her care.

Staying in the moment and having a bit of hope gave me the courage to tell the doctors I would do anything or learn anything about her care that would allow us to take Erin home.  That would mean learning to be her caregiver, which included administering peritoneal dialysis for 10-12 hours daily, filling 50 syringes with medications and vitamins to insert in her G-tube, filling her kangaroo feeding pump with various formulas, giving shots, taking vitals, and recording data.  It mattered most when she would wake up in the night at home in her own bed, look up at me as I drew back the covers to insert the final round of medications into her G-tube, and say, “Mom, you take care of me?”  I would answer, “Yes, Erin, I take care of you.”  It mattered in the moment, which lingered into many moments over the last ten months of Erin’s life, and into my memory after her passing how grateful I am that my pleas to doctors to let me participate in her care and bring her home mattered in the moment.  I was encouraged and pushed to overcome my fears about certain aspects of her care and was expected to practice and review each step of what I would be expected to do at home with the careful guidance of Erin’s dialysis nurse until I felt confident I could do it without her being right there with me.  Still, this nurse and a dear friend who was a nurse were always a phone call away day or night.

Those moments that mattered the most are the ones that stay in my heart each day now that Erin is gone.  I call them up in my memory each time I relive a cycle of dialysis and doubt my decisions as a caregiver at home.  They give me assurance each time I think through those episodes of the series of surgeries, long sleepless nights, and events.  They wrap around my heart as the numbness created by months of trauma now eases, and as I feel the hurt of my loss and the longing to hold my child again.

Of all the moments of that last year of Erin’s life that race through my mind in the quiet early mornings or on the drives home after long days at work, the ones that matter most are those that connected me deeply to my very soul as a mother.  I am able now to find a channel that leads me to live and love with deeper passion because of the moments shared with others in the midst of suffering.  Those who walked with me through my sorrow everyday in the hospital and in those last months as a caregiver taught me how to listen and believe more about myself by being present with me in the moment.  I know the value of being there in the moment because I was granted precious extra time to be with my daughter and share that deep connection in our final months and days together. That is not something that changes the reality of what has happened to me and my family, but it is something very real and present that gives me courage in each and every day of my life. I work within myself to recognize the importance of my own presence in the moment in the lives of others around me, to make the most of it, and to make it matter most of all.