As a teacher in public school, I focused hard on helping my students “get it”.  Solving math problems, writing an essay, processing content knowledge, organizing materials, staying on task, learning how to study, getting along with peers. Teachers work at being proactive with the environment, structured in time management, and intentional in use of instructional strategies to facilitate success.  School life is full of keeping pace with productive routines, setting goals, and charting progress on a daily basis.

I feel sure many households operate in the same manner. Organized, built on routines, regularity, focused on measurement.  Not mine. Our measurement was a door frame with marks, dates, names, and heights of five kids as they grew through the years.  Not that I didn’t have good intentions.  I had grocery lists and to-do lists posted everywhere and was a master multi-tasker.  Our measurement of a good evening or weekend was enjoying the boys’ ballgames, eating out on the way, relaxing around the house, getting at least one project accomplished-which sometimes was a lot of laundry, cleaning up the house, or getting school uniforms ready for Monday. We packed up the girls and hauled them everywhere in attempt to keep up with the flow of life with teenagers. I attribute the more relaxed lifestyle in our home to an easy-going husband who set the tone and brought humor, music, and an emphasis on togetherness to our family time.

Erin responded well at school to structure.  I know; I was her teacher in middle school for two years after I moved from teaching English to special education.  In our self-contained class, she followed the lead of other students.  She knew the routine.  She sat up straight, put her chin up in the air, and raised her hand to answer questions while addressing me as “Mrs. Feathers.”  She worked with her previous teacher for months to fix her breakfast at school in the mornings when she arrived at school, which was an Eggo waffle and syrup.  She would repeat, “1-0-0-start” to heat it up for one minute independently. On occasion, I would hear the microwave ding on Saturday mornings.  I’d jump out of bed realizing she was up and wondering what could be in the microwave.  I’d find her sitting at the table eating her breakfast alone.  She remembered.  She got it and would look over at me to see if I noticed.

Once in awhile, she would get a piece of paper and pencil and sit beside me.  She’d ask what we needed at the store.  Erin could only write her name independently.  Some years, she’d drop letters off of her signature, and we’d have to work to get them back in place.  She could copy a word from a piece of paper.  She could write down a letter as we spelled it aloud. She could not write sentences or words independently.  She’d sit up straight and look to see if we were watching her write.  When the grocery list was completed, we’d go shopping.

When she got it…unprompted…when something stuck with her, we responded.

There were those times that she’d learn a word or phrase that we’d have to unlearn.  She probably heard most of them in our house.  I’d remind the boys to not slip and say a curse word, and they were pretty careful.  Thankfully, she never learned one.  If she did learn a word we didn’t want her to say, she’d commit it to memory, say it, and then say, “Erin, don’t say it!”before saying it again.  One of the words we had to undo was “stupid”.  We replaced it with “stupendous”.  I’d hear her yell,“Say stupendous!!” from the back seat in the car to correct me if she ever heard me tell Rob I felt stupid in a situation. She got it…

When we’d get home from school each day, I often watched a rerun of NCIS before I fixed dinner and while Erin rested on the couch beside me.  She’d color or curl up in a blanket. She didn’t watch or comment.  I’d look over and wonder if she noticed on occasion when Gibbs was talking to Ducky in the morgue.  One day, she went upstairs and returned carrying a naked baby doll in her open hands very carefully and stopped in front of me.  The legs and arms of the doll were wound in hair ties.  In a serious tone, she said, “Mom, she’s dead.”  She slowly placed the doll in my arms and returned to the couch to color. 

She got it…

When Erin came home from the hospital, we didn’t know what she understood of what had happened to her and how life had changed.  She didn’t express it.  She didn’t ask.  We focused in the moment and tried to make it an adventure to whatever extent she could handle.  These were always short trips out.  One of the last ones was to the downtown mall in Charlottesville, one of Erin’s favorite places and ours on a trip to town.  It was a Sunday evening in late January of 2017.  It was raining, but she asked; and at this point, when she asked, we went.  Rob pushed her in the wheelchair.  Diana and I held umbrellas over them. We all sang “My Favorite Things” from The Sound of Music as we walked down the mall, which was one of Erin’s favorite movies.  But I did feel sad.        

February 3^rd was a good day.  We were scheduled to go to court in the afternoon at the courthouse in Palmyra to make a case for Erin’s guardianship.  Erin had turned 18 in November.  We had begun the paperwork before this date to file for guardianship.  Erin could not make decisions for her life independently. We needed to continue to make decisions about her medical care.  After a long morning of clinic appointments in the Battle Building of UVA, we drove back to Palmyra to the courthouse. We had previously met with a lawyer who specializes in guardianship and power of attorney cases for individuals with disabilities as they enter adulthood.  He came to the house to talk with us, meet Erin, and go over the details of how we would proceed. 

The week before the court date, a guardian ad litem came to our house to meet Erin and talk with me.  She had a busy schedule and was only available in the morning before Erin had finished her dialysis cycle.  She had to actually see and talk to Erin, so we went upstairs to Erin and Diana’s bedroom, squeezed around the medical equipment, and sat on Diana’s bed.  Erin was awake and clutching her stuffed kitties, Beum and Hardy.  She always watched Frozen in the mornings while I took her off the cycler and we waited for her vitals to get stronger before trying to move downstairs.  Erin was ignoring the strange woman sitting on her sister’s bed but occasionally cut her eyes angrily at her.  I was saying to myself, “Don’t say it.  Don’t say, ‘Get out of my room.’”  The woman asked me several questions.  One was, “What’s the plan for long-term care?”  I was silent for a minute but looked over at Erin’s dresser at the picture frame that had a flash drive of pictures of Erin’s healthy life.  I had asked family, friends, and teachers to send me pictures of Erin when she first woke up and came off intubation for good at the hospital.  I loaded them on the frame, so Erin could see all the people who loved her and were waiting for her to return home.  I had realized in recent weeks the pictures of Erin jumping on the trampoline and attending school were not things she would experience again.  I had turned the picture frame around.  I don’t know if it was so I couldn’t see it during hours of setting up, monitoring, or breaking down all the plastic tubing and bags associated with dialysis.  Maybe it was so Erin wouldn’t see it.  I didn’t look at the frame when I handed it to the guardian ad litem.  While she looked at it, I said, “There isn’t going to be any long-term care.”  I didn’t plan to say it.  I just said it.  It was an empty statement but full of obvious truth.  The woman didn’t say anything or look up or at me, but I felt her sadness in that moment as she breathed in.  She left quietly soon after she read a statement to Erin that was full of language about giving up her personal rights.  Erin only glared at the woman for talking during her show.  That was that.

The visit to the courthouse was much different and something I will cherish forever.  In my mind I had imagined the lawyer going up to the judge to present a document when her case was called while we sat in the audience. There was no one else in the courtroom.  Rob and I were instructed to sit with the lawyer between us at the table that was in directly in front of the judge.  Erin was in her wheelchair facing his stand.  The judge entered.  The conversation turned to the lengthy file on Erin.  Erin sat quietly.  The judge talked to the lawyer about the file, which he indicated he had read in its entirety. Erin began to realize the conversation was about her.  She had no understanding about why we were there.  She knew that man in the robe was talking about her, so she sat up straight and looked up at him with a big grin and giggle.  She put her hand close to her face and waved a flirty wave.  The judge smiled and waved back at her. While the talking continued, they continued to wave back and forth. When asked by the judge if she had anything that she wanted to say, Erin said confidently and loudly, “My dad takes care of me.” Everyone stopped and looked at her. Then she added, “I love my dad.  I love my mom.  My mom and dad take care of me.”  She looked at us to see if we were listening to her say it.  She got it…she knew.  We loved hearing her say it.  She left us ten days later.  We’ve talked about that day many times since. Of those last days, it’s the one we choose to remember. It was priceless.  I won’t say she knew how much we would need it after she left and as we have processed the fact that we couldn’t save her no matter how hard we tried.  What matters now is knowing that she knew she was loved.  Unprompted, she told us she knew.  She got it.  She gave us that knowledge…a final gift.

Donna, my mother-in-law, and I talked a lot about what Erin was thinking.   When she was younger and was quiet upstairs, I might settle into relaxing on the couch to watch a show, pick up a stack of papers to grade, or start working on an assignment for my classes…until the thought crossed my mind that it was quiet upstairs-really quiet.  I’d jump up off the couch to run upstairs to see what Erin was doing.  I might find all of the covers and sheets from all the beds upstairs in the corner of one of the bedrooms.  I would think, “Why? What was she thinking?”  Erin loved to make beds.  I used to think that in my years of retirement, I’d be assisting her with making beds in a hotel part-time. 

Erin also loved to hang up clothes in the closet and would work on it for hours.  She would hang up the dirty clothes from her clothes hamper with the clean clothes in her closet. It was not acceptable to her to have them in the hamper or lying in the bathroom or her bedroom floor. She would take all the clothes hanging in the closet, put them on her bed, just to hang them up again.  I’d have to grab the dirty ones while she was not looking. 

She loved to pack things.  If anyone mentioned the “B” word (the beach), she would disappear upstairs. Later, I might find several duffle bags full of clothing and soft blankets and a pillow packed on her bed.  She would bring them downstairs by the front door saying she was “packing-her-stuff” for the beach, even though we kept telling her we were not going to the beach for another 3 months.  She packed purple and neon-colored bookbags full of brushes, “hair-ups” (hairbands), lip gloss and make up for little girls, art supplies, books, and “Stripes” the stuffed cat she took everywhere.  She took the bookbags with her to school, on family outings, to church, along with a soft pillow and blanket in the car.  On the first trip we took without Erin after she died, Rob stopped the car on our way out of Fork Union, went back to the house and got a bookbag to put in the backseat.  It just didn’t feel right leaving without it.  Erin needed her things with her and the weight of them against her body to keep her centered and feeling secure.  I think now of her walking into my school each morning loaded down with her bookbags or seeing her singing right in front of the praise band on Sunday mornings in church getting as close to the music as she could with her backpack and loaded-down purse in tow.

I think of these things when I pass the backpacks in Walmart late at night while shopping for supplies for daily living skills class the night before Longwood LIFE.  I can take a quick peek down those aisles along with the “hair-up” and make-up aisles that have the flavored girly pink lip glosses that made great stocking stuffers for so many years.  It wasn’t just at Christmas that Erin wanted them.  We seldom went through a store that Erin didn’t ask for the hair-ups expressing how much she needed them.  I can stop on those aisles for just a minute, look, and feel something comforting inside to see those items.  A quick look is just fine.  It doesn’t trigger anything sad.  I can control it, choose it, for the sake of a memory and move on. 

Not all situations are like that, though.  Some situations bring on triggers that I can’t yet shake. Like hearing “I See the Light” from the Disney movie Tangled.  Or church. What happens when church is a trigger?  A place I have always loved is a reminder of the loss of a child who loved every minute being there.  It literally takes my breath away.  Erin loved being in church and would ask to go constantly.  It was a place where she was accepted.  People did not make us feel as if she was a disruption to the service…though, she could be at times.  Her enthusiasm and unique way of communicating was embraced by people who asked questions about what she meant to say or do.  Erin had a connection with people in our church…and God, I choose to believe.  Somehow, when a long and challenging Saturday afternoon would wear me down, Erin would take my face in her hands and command, “Sing, Mom,” and then start singing “Awesome God” or “How Great is Our God” with simple joy.

I believe it’s important to know what you know.  I think deeply about many things and read to learn.  I question and reflect, fester on issues related to my life’s work, and think some more.  But, where God is concerned, I don’t overthink anything. I trust.  I feel.  I accept a truth that makes sense to me. It’s not a conscious decision; it is, often in hindsight, just how my faith works for me.  Perhaps I should question more and dig deeper. I remember in middle school I had a young teen devotional book.  There was an entry I will never forget that described a man who was looking for God.  He researched spiritual things; he talked with theologians, he read, he questioned.  He was not satisfied with answers and walked away shaking his head-not finding God.  The next lone sentence stated, “God’s just not that hard to find.”  I always remember that and choose to accept simple scriptures I committed to my heart as a child that guide me.  “Love the Lord your God with all your heart, mind, and soul.  Love your neighbor as yourself.”  Love ALL people.  Love yourself.  Put others first.  What would Jesus do? With whom did he walk and talk?  I learned as a child to pay close attention to the red-letter words in my Bible.  Parables make sense to me.  Listening to that still small voice.  Coming to the end of myself.  Believing mountains can be moved with the faith of a mustard seed. It’s all there.  It’s how I come to the table with God and my life. 

He’s got my girl.  I am sure of it. I grew up in a church with stained glass windows.  When we moved to Farmville two years ago, I went to the Catholic Church one afternoon and asked the secretary if I could just sit in the sanctuary and look at the windows. She said she was working 9-3 everyday, so I could come whenever I wanted.  I sat in the quiet and looked at Jesus with his hands out to his side.  I went to the Methodist church and looked at the window of Jesus holding a child in His arms.  Months after Erin died, I went to a service in a dark auditorium.  The preacher told the story in his message about the history of the hymn, “It is Well with My Soul”.  Horatio Spafford (1828-1888) lost his four daughters in the middle of the ocean when the ship carrying his wife and girls was struck by an English vessel and sank. He went at once over the ocean to meet his wife, and when the ship was passing over the location where the ship sank, the captain called him to his quarters to tell him.  Horatio wrote, “When sorrows like sea billows roll.”  As I heard that story in the dark room, I heard the sea crashing in my mind and quietly wept sitting in my chair well after the service ended and the crowd left.  It was well with my soul.  I thought about how God is good all the time.  I’ve never doubted it. 

When Erin was really sick and in the PICU for those months, I stayed with her.  I got up really early–about 4:45 and went to my car in the parking garage, got my overnight bag, went to the one shower that would lock on the 7^th floor of UVA, and took a shower early in order be back before early rounds with Erin’s doctors.  I would close my eyes in the shower and imagine I was at home.  The terror of possibly losing Erin would wash over me.  I would whisper words I learned as a child, “The Lord is my shepherd, I shall not want.  He maketh me lie down in green pastures. He restoreth my soul.  Yea, thou I walk through the valley of the shadow of death…Thy rod and thy staff…they comfort me.”  When our pastor would come to see Erin, she would ask her to sing a particular scripture song called, “Great I Am”.  I remember one day when the nurses were changing bandages while she was singing.  Erin’s wounds from the catheters were deep.  She looked into the eyes of the pastor who sang these words to her, “I want to be near, near to your side, where Heaven is real, and death is a lie.  I want to see dry bones living again, singing as one, Hallelujah. Holy, Holy, God Almighty, Great I Am.”  I don’t know that Erin cognitively understood everything about those words, eternity, or God.  Maybe I choose to believe now she knew more than I thought about during that time.  Maybe it makes me feel more OK with where she is now.  Though the worst part of this loss is her absence, believing she is “present with God” helps me accept that she is safe and whole now.  Thinking through all of this while I am in church is exhausting.  It takes me awhile to recover.  It will not always be that way.  I also tell myself that loss is loss.  Everyone feels it at one point or another in some way.  I tell myself people die all the time. It’s a part of life.  I guard all these thoughts and feelings, so I can live and keep living fully.  Church will always be a part of my life.  Maybe going will not always hurt. Maybe I don’t need to figure out why swimming an easy breaststroke at the YMCA with the smell of chlorine is more stabilizing and brings more comfort than sitting in church.  Maybe being in church will not always be a trigger of the pain of my loss.  For now, I’ll keep swimming.

My family….  Rob and I met at Va. Tech and married soon after I graduated.  He had another semester and summer to finish college, and we spent the summer after we got married in Blacksburg tubing down the New River in Blacksburg on weekends while he finished school. I remember him as a skinny guy with thick dark hair in a flannel shirt and jeans.  A favorite early memory is the time we were stranded on a mountain road when my car broke down on the way to a weekend trip to Lynchburg.  I have this picture in my mind of Rob sitting on the hood of my car playing the guitar; enjoying the scenery with no worries in the moment.  I loved him.  We got married.  I started teaching sixth grade in Fluvanna.  He was the school social worker in the county while going to grad school at UVA to become a middle school guidance counselor.  He got a job as a guidance counselor at the same middle school where I worked as an 8^th grade English teacher.  We started a family soon after college and eventually found ourselves running after 3 rambunctious boys who loved building tree houses, forts in the woods, digging muddy pits in the backyard, and playing Little League sports.  I spent summers pitching to my sons in the corn field by our home and running them to Little League games, not to mention getting them to VBS weeks at local churches.  We lived in the country, and I’ll never forget the nights I spent teaching the neighborhood boys how to make a quilt at a sleepover during VBS week as a project after a campfire in the backyard.

Did I mention snakes?  Yes, I did not realize when I married Rob that his stories of loving snakes and going to nature camp growing up might transfer to acquiring one or more in OUR household.  He loved snakes and looked for them in the woods growing up while digging for old bottles as a teenager.  So, as my 3 boys were growing up, we had snakes… a boa constrictor, “Spike” the ball python, and several other snakes, like the “beautiful” king snake, rat snake, hognose snake, black snake, corn snake, all in cages in the basement.  The rule was the snakes had to be in the cages when Dad was at work.  I remember the day my son, Dylan, was riding a bike outside with “Spike” around his neck.  He ran inside the house while I was vacuuming, put “Spike” on the couch, picked up his left-handed glove, and ran out to play baseball with his brothers and the Chamberlain twins across the road.  I turned off the vacuum cleaner and looked at “Spike”.  Rob was at work.  I didn’t touch the snakes.  Was our house normal?  With a snake on the couch?  What’s normal?

Then we had Erin who had Down syndrome…a Feathers girl born into a long line of boys.  She was medically fragile at birth with a two-chambered heart that would need surgery as soon as she was 10 pounds and could go on the heart-lung machine.  She reached 10 pounds and had the big heart surgery…survived RSV…thrived and was adored by parents and brothers.  She walked at age 3.  When she found her voice, she grew in volume as she gained strength.  Meaning, when she found her voice, she expressed herself loudly and with great repetition.  She had no filter and figured things out in self-talk with whatever volume was required to work through frustration or solve a problem.  I frequently woke up in the middle of the night with Erin pressing her nose against mine saying, “Erin, be nice to friends,” after a day when she yelled at a classmate, or “Be nice to Mrs. Scarborough,” after an incident of sensory overload where she hit the classroom aide and added, “Erin, we love Mrs. Scarborough,” with deep conviction.  Erin never went to sleep easily and seldom stayed asleep all night.  She wrestled with being both exhausted and overstimulated.   Getting her to go to sleep would take hours and she woke up early.  We laughed with our grown kids at the beach this past summer as we remembered the days waking up to Erin staring intently at the sleeping person from the doorway trying to keep herself from blurting out, “Erin, be quiet!  Daniel’s sleeping!” before slamming the door.  When she was in your doorway, you felt her presence before you opened your eyes and heard her voice.  Her presence day or night commanded our attention.

Erin was developmentally about 3 years old with the determination of a 15-year-old when it came to independence.  Having a child who was tall enough to open the front door to get out of the house and walk down the road but who could not identify this action as dangerous was a constant concern.  We had older sons who had friends coming in and out of the house.   We had a chain lock near the top of the door with a sign that said, “Please lock the door.” If she ever got out without us with her, which was not often, she might go in a neighbor’s house and sit in a bedroom or closet. Once I had to go inside a neighbor’s house when they were not home to find Erin sitting beside their Great Dane on the couch.   Whatever she had experienced, she would repeat. If a neighbor invited Erin inside to visit, she might return to that location unannounced or when they were not home.  It became a new pattern, so we had to be careful not to create new pathways we could not supervise.  We lived on the property of Fork Union Military Academy during her life in academy housing.  (God bless our neighbors!)   We lived across the street from a pond, which was beautiful in the early morning light with a cup of coffee in hand sitting on our deck.  There was never a concern Erin would go to the pond, as anything that was not introduced to her did not become a routine or repetitive pathway.

Anyone who knew us got used to Erin saying, “Shut up!”  “Stop yelling, Erin!”  “You need help tying your shoes, Erin.  Ask Mom.  Great idea, Erin.”  I loved hearing, “I love you, Erin”, as she went to sleep at night, or “Aww!  I love you, too, Erin!”  in response to herself.  Rob’s mom often said Erin would never be lonely because she always had Erin.  The important lesson about living with Erin was knowing that normalcy was defined by the statement, “It is what it is.” Our lives were both predictable and cluttered with new issues with Erin that frequently surfaced.   Without a big discussion, we adjusted to what was required and worked together to do our best to help make daily function and coping (mostly with the sensory environment) easier for Erin.  A sense of normalcy would plateau until the next issue would present, which would mean we would adjust around what she needed and continue with life as usual.

Our sons’ friends learned how to interact with Erin.  Kyle bantered back and forth with her with strings of nonsensical syllables.  The big boys with lax equipment sitting by the front door and smelly shoes after practice became the dress up clothes of Erin and Diana.  The boys who grew up with my boys over the years at Fork Union-and having brothers- all had a hand in scaffolding developmental milestones for my girls.  I smile remembering the Berizka Basketball Bashes to raise money for therapy equipment in Ukraine with area youth groups after we adopted Diana and the evenings spent in our living room with a certain FUMA basketball player and our sons walking in a circle with a hula-hoop attached to Erin to teach her to stand and walk.  And…seeing her finally walk!  Diana, who also has Down syndrome coupled with a caring heart, was always close beside her to provide reminders or encouragement.  I remember the day Diana said, “Erin is older than me, but I am the older sister.” 

So, was life normal?  No… Yes.  We learned to go out to eat at sports bars that were loud, so it didn’t matter if Erin yelled.  We learned to ignore occasional looks in public when she was struggling and to just relax with what we could not control.  The times between episodes where Erin was “in sync” were filled with giggles and finding enjoyment in the small things in life.  Though there were times through the years when Rob and I looked at each other and said in jest, “Our household is not normal,” looking back today, we would not change a thing.  For our family, the daily life experience has left its mark on our hearts and minds and is now woven into our perspectives on many things.  Maybe we have a bit more tolerance and apply a broader lens to people and issues.  Rob and I have lived life richly with family that we gave birth to and others we claimed as ours -loud, honest, and real. So, for today, I am grateful.

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.