A friend posted a video on Facebook recently of medical personnel garbed in surgical clothing standing quietly in a circle with heads bowed listening to the worship song, “Still.”  While announcements play over the loudspeaker in a place where no one stands still, this circle stands solemnly together amidst the music as words rise…

Hide me now under your wings.  Cover me within your mighty hand.  When the oceans rise and thunders roar, I will soar with you above the storm.  Father, you are king over the flood.  I will be still and know you are God.  Find rest my soul in Christ alone.  Know his power in quietness and trust.  When the oceans rise and thunders roar, I will soar with you above the storm.  Father, you are king over the flood.  I will be still and know you are God.

In these recent days, we focus on those who care for the sick and the suffering…those who go to the edge of life and look deeply into the face of death at the bedside of those who so vulnerably fight for their lives. 

I know these people.  I recognized them in the video.  One of them came to get Rob and me from the waiting room late one night in a hurried fashion.  With an upbeat demeanor and a skip in her step, we followed her down winding hallways scurrying to keep up as she walked briskly and talked fast, telling us we were going to the operating room to see Erin before surgery. They were going to attempt a total redo of her 4^th heart surgery.  She couldn’t come off the ECMO machine. Her doctors didn’t know why.

The nurse helped us into paper pants, gowns, hats, masks, gloves, and slippers before taking us right to her.  Many others dressed like us backed away from the table leaving us alone in the room with her.  We stroked her arms and held her hands.  We leaned over the table and kissed her face.  We sang to her.  We prayed aloud for her.  We told her she was strong and begged her to fight.  We told her again and again how much we loved her.  I remember raising my eyes to the lights and equipment above the table.  I saw the microphone just above our heads.  I looked to the left at the window in the wall near the door of the operating room and saw the hallway filled with the masked surgical team standing quietly…watching us through the window.  Next to them I saw the speaker and felt the love pouring from their eyes as I realized they had been listening and watching while waiting to re-enter.  We knew why we were there.  We knew what it meant.  I will never forget the presence of that team standing still as we stopped to face them…reaching out our arms toward them as we left Erin in their hands… asking them to take good care of her and thanking them for trying to save our girl.

I got a glimpse of these people from the bedside.  Faces changed but not their focus on and dedication to Erin.  I watched them all day as they cared for her, listened to stories about her, and learned all about our lives with her.  They learned her code words and phrases and how to joke with her when she was awake.  When they induced sleep to sustain her, they preserved her dignity in every movement or task…verbally cueing her into all they were doing with reassurance whether she was aware or not…telling her she was safe.  They sat at the foot of her bed all night watching her machines to be sure she stayed with us and assuring me I could drift off to sleep.  I’d wake up abruptly in the darkly-lit room and jolt up saying, “Is she ok?” only to see the doctor at the door and the nurse by the bedside watching her.  I’d hear, “We’ve got her” before taking a long breath and falling back down on the bench in exhaustion. They encouraged our family to stay close to her and climbed over us as we hovered around her. They squeezed between us to adjust her, give meds, work on her tubing, while joining in conversations with jovial talk amongst us. They guided my hands and with their words instructed me on how to care for her at home on dialysis in their absence.  They entered my home in the middle of the night or early in the morning over the phone or in person to assess a need and suggest a course of action…whether to stay at home or call the rescue squad.  And on the night Erin left us back in that familiar glassed room, one of them put her arms around our waists, pulled us close to her, and drew us to the bedside without letting go.

When the oceans rise and thunders roar, I will soar with you above the storm.

It wasn’t talking about faith that struck me in the midst of those dark days.  It was realizing we were enveloped within it in a place where all inhibitions are removed and all layers are peeled back exposing the raw realities of the fragility of life…in a place where death lingers and waits.  In this place and in the presence of these people at the bedside, I stopped doing.  I was led to a place of realizing I could do nothing but watch them intervene.  In my powerlessness to control or fix anything at all, I stood still…and quiet…stepping back amongst a flurry of skilled hands…getting out of the way.  I am reminded today of the keen awareness of stepping back into God’s arms at these times of total desperation.  Having no other recourse but to trust. Finding that place of safety in the storm and hanging on…knowing circumstances may or may not change.  Finding a place within myself to hide…and finding Him there with me holding me close.

I pray for those people who are standing by the bedside in sterile clothing caring for the sick and suffering as they are holding cell phones as lifelines between loved ones, voicing messages of hope and comfort to families.  I pray they are safe and are covered within Christ’s mighty hand.  I pray they will sense God with them in moments of stillness and quiet, however brief.  I pray they will find rest, strength, and sustenance within the storm.

“Be still, and know that I am God.”  Psalm 46:10

I’ll never forget the message I received on my phone at 10:29 PM on February 13^th, 2017, the night we lost Erin, from one of those people who is now on the front lines with patients at the bedside…a message I will keep forever that said, “Love you Aunt Karen,”

“Love you, Scott Feathers.”

When was the last time you looked up at the sky…fixed your eyes on the clouds…actually went up there in your mind?  You see the clouds from below as you step outside and notice a shape or blue sky behind them.  Maybe a colorful blend of pinks and wispy strings of white or billowing bunches of fluff.  Children see them and say, “Mom, look at the clouds. Do you see the…?”  They see things we don’t until they name them.  We stare upward and cock our chins sideways to visualize what they see, so we can affirm them saying, “Yes, I see it” to whatever object they identify.

Sometimes, we see the clouds from above through the windows of airplanes.  We are supposed to recognize their beauty while breathing a sigh of relief that we’ve packed enough for our trips, remembered our agenda items, made our flights.  If we pause and look out the window and breathe…and disconnect…just for a minute…we feel the peace of their presence below us and allow their protection to envelope us.

I sing the song by Joni Mitchell, “Both Sides Now” that talks about clouds and their illusions, the feelings they evoke, the meaning we attach in the moment to things that will change from the way we wanted them to be.  Perspectives change after we experience life.  Ultimately, what we saw or thought we understood, what we counted on to be constant in our lives – like people we loved, what we understood would always be there – could change.  We saw it in the clouds.  If our look lingered, we would see the familiar shape change.

Erin watched clouds.  When she got home from school in the afternoons, she would run straight from the car around the house to the backyard to the trampoline without closing the car door.  We had a large trampoline on the backside of our yard that led to an open field and small grove of trees on the neighboring property of our academy house.  It had the protective netting secured around its edges and a step stool beside the opening to hoist the girls easily into the rubber center.  Erin would shed her jacket and shoes regardless of the temperature and jump…flip…literally, flip in the air without hands touching the trampoline…and yell…sing at the top of her lungs…laugh loudly…shredding every bit of pent-up anxiety and stress from her day…all the words she held together inside of herself after looks and verbal reminders to be nice and keep herself in check…released to the sky as she leapt and swung upward with her body knowing…feeling instinctively…how to land on her back or her feet. 

That was Erin.

I would watch through the kitchen window, which offered a beautiful view of the backyard, and witness her process of decompression while I washed dishes and slipped back and forth from the kitchen to the laundry room to throw a load of laundry in the washer or pull out food to fix for dinner taking my eyes off of her for mere seconds before looking back to be sure she was safely contained.  I’d open the window to hear her words and songs and would feel myself begin to relax along with her in the solitude of my home.

Solitude…something Erin needed for pure existence.  Something that her mom needs as well to reset and regroup.  It’s a place of reflection where life doesn’t seem as complicated as it once was or needs to be.  It’s a place where we enter and exit differently.  We enter solitude with weight and exit in freedom.  It’s a place I observed under the clouds with Erin as I’d join her on the trampoline as dinner simmered and the afternoon laundry cycled.  As she wound down and I unpacked my day and transitioned to evenings at home, we found each other side by side lying on the trampoline under the clouds.  I’d join her there. I’d look from the clouds to her eyes focused on them and wonder what she was thinking.  She’d say, “Mom, I don’t like elephants in the sky.”  I’d look up hard trying to find the elephants in the shapes of the clouds.  I’d think about the Sesame Street episode of the elephants in the sky.  I’d look for them and think about her worrying about elephants falling on her.  We’d lie still for a long time until the chill in the air made us shiver and the sun would dip down below the horizon.  We’d listen to the quiet and look up at the clouds.  I’d listen to her breathe until her pattern lengthened and I’d realize she had fallen asleep.  I’d enjoy the brief respite between the day and the night…the time to move the day’s tasks to the left and center my attention on the family’s arrival home and the night’s tasks.  As the clouds crept across the sky, our eyes and hearts crept back toward each other to the place of home where we wound down together and found peace and comfort… A place that made us one…

It’s now a place where I still look for her in quiet walks on weekends with Rob through our neighborhood listening to his “Erin” soundtrack on Spotify of all her favorite songs and ones that brought funny experiences with her.  We walk and quietly talk about her while tearing up every now and then.  We talk of what we remember and what we don’t want to forget.  It’s where we walk and share what has changed in our lives since both changing jobs, changing neighbors, and all that was familiar to us for so many years.  It’s a place where the trees hide the clouds but where we still find each other and a sense of her in that same place of solitude.  It’s a place where we find perspective in the loss that takes a bit of our hearts each day within the life we now have.

It’s in that love we share for her and for all of our children and family and the history of having created it together that we voice our assurance that it is all good; and on the other side of loss, as we have experienced both sides now, we will never again look up or within without thinking of her, without feeling her in both small and powerful ways.

“Something’s lost, but something’s gained in living every day.”

Fear is real.  We all have our share.  There are environmental fears, like fear of spiders, fear of barking dogs, fear of the darkness, fear of heights.  I have feared snakes all my life and only ever saw a garter snake outside in the grass in my mom’s front garden growing up.  The night Rob Feathers and I moved to VA Tech for the summer and sublet an apartment for him to finish school, he stopped in the middle of the road in Palmyra to pick up a “beautiful” king snake to take with us.  He was going to hold it in his hand while driving to Tech.  I stood on the side of the road at 9:00 at night refusing to get back in the car with the snake. It was early summer, and an elderly woman in a neighboring house leaned out of her window saying, “Honey, get in the car!” as she listened to us argue about the snake.

Snakes were caught and caged in our house.  My husband and sons brought them in the house.  Sometimes, they escaped.  I saw a corn snake move across the bathroom floor early one morning during the first year of my marriage when my husband forgot to close the cage securely the night before.  A snake got out in the old faculty house we lived in on Route 15.  I’m sure there were many cracks in the house because it never got above 65 degrees in the winter no matter how high we turned up the heat. Rob told me after my parents came to stay overnight to see Kyle sing in a school play that the snake had escaped the week before.  We never found it.  Once, my two oldest sons brought their ball pythons home from college to stay at our house along with their first load of belongings to move home for the summer.  The snakes needed to eat, so they had gone to Charlottesville on that Saturday to buy rats to feed to the snakes.  They put the rats in separate Tupperware totes each with a snake.  One snake ate the rat.  The other one resisted.  So, they left on a Sunday afternoon to go back to school leaving the rat in the Tupperware tote with the snake fully intending to check in with their dad about the status of the other snake’s progress on consuming the rat. 

Daniel and Dylan did not inform me of their plan.  It was parade season, so Rob went up to Fork Union after lunch on that Sunday to help with inspection before the afternoon parade.  Diana went with him to watch the parade.  Erin stayed with me at home and went upstairs to have quiet time in her room.  I realized quiet was not a good sign, so I went upstairs to check on her.  I found her sitting in the upstairs hallway dressed only in her pull-up with a ball python in her hands.  She carefully had the neck resting in one hand and the bulk of the body curled up in the other hand.  She was sitting in the hallway…with the snake in hand…talking to it as if they were deciding what to play next.  I ran to my next-door neighbor’s house for help with getting the snake away from Erin, since I couldn’t bring myself to touch it.  The only neighbor home was a man who was as afraid of the snake as I was.  He followed me back to my house but wouldn’t come upstairs with me.  Instead, he stood at the bottom of the staircase encouraging Erin to put the snake down.  I finally convinced her to put the snake in an empty Tupperware tub and secured it with a top. 

I don’t like snakes.

For many years, Erin would often express a fear of wolves.  She would say, “I don’t like wolves.”  She would calm herself by saying, “Erin, don’t be afraid of wolves.  Wolves live in Alaska (a fact she learned from her teacher, Mrs. Rich).  Wolves don’t live in Fork Union.”  She would say this whenever she felt stressed.  She said it before she went to bed at night and answered her fear with assurances wolves were not near.

We have absolutely no idea of the origin of Erin’s fear of wolves. Once, she petted a wolf (who was someone’s pet) on the Downtown Mall in Charlottesville, never associating it as an animal to be feared. Erin frequently exhibited repetitive speech and directed her thought process to working out issues within herself. It was her way of gathering courage to face a new challenge.

Having Erin was full of facing challenges.  This week in my classes at Longwood, we are talking about parents who face the challenge of raising a child with a disability.  We are talking about how parents grieve in bits and pieces as they process their child’s limitations in life, realize their dreams for their child’s future must change, and work to figure out how to set realistic expectations and project milestones. 

When Erin was a baby, I was determined to do all the exercises with the therapy ball and all the equipment the early interventionist brought to our home.  I studied about children with Down syndrome and learned about developmental milestones. I set a goal that Erin, despite her low tone, would walk by the time she was two years old.  Erin’s babysitter sat me down one day and tried to make me understand I could not make her walk.  Erin had low tone.  I could be a part of the process, but I could not control it.  I worked hard each day to practice all the exercises the physical therapist taught me to do with her.  I was determined but was afraid she wouldn’t catch on.

Erin walked when she was three and a half.

This week, I told my classes about how parents begin to realize what their child’s disability will mean for their lives as well.  We talked about IEP meetings and all the parts of the IEP process.  I told them how I sat around a big table full of therapists, teachers, a psychologist, and an administrator at Erin’s first IEP meeting.  I was told by the psychologist Erin was in the 1^st percentile in whatever score mattered as compared to her same-aged peers.  My heart sank.  I asked how she compared to other children with Down syndrome as a better comparison.  The team committed to finding out that information.  I drove home feeling sad and felt afraid for her and for us in all we didn’t know about what to expect in her future. I let it be a sad day and let myself feel it.  I cried all the way home from the meeting.

I worked with Erin on writing her name.  Her teachers worked on it as well year after year.  I was afraid about her slow progress.  I suggested she use a keyboard as an accommodation in her IEP.  Her occupational therapist gently asked me the question, “What if Erin doesn’t learn that an ‘A’ is an ‘A’?”  That was another sad day realizing that she might not learn how to read.  She did learn simple sight words and to write her name, but I will never forget that day when I had to face her deficits that confirmed my greatest fears.

Life with Erin meant facing fears.  We faced the unknowns about what prompted her outbursts, what disrupted her sensory processing, what triggered her repetitive speech cycles that spun into hours of yelling. We kept trying to figure it out.  We learned that adding some adaptations into many daily life activities provided a segue to a better place which allowed her to better cope with her surroundings and return to her happy self.  One instance of this was when we went to the circus at the coliseum in Richmond with the girls when they were about six years old.  We had to wait in a long line to get through the gates with our tickets.  We were inside the building and the general noise of excited children and occasional high-pitched squeals evoked a negative reaction from Erin.  The look in Erin’s eyes as she gripped Rob’s neck was one of fear and confusion.  She was so excited to be at the circus and knew she was spiraling downward. I remember visibly seeing her body relax as the lights went down and her smile and giggle return as the show began.   We learned from that experience to take headphones with us to similar types of settings…such as concerts where she loved the music but had to adjust to it slowly.

As parents, when Rob and I would fear something of this nature happening with Erin, we’d say to each other, “I don’t like wolves”, which meant that something might happen, but we were going anyway and would tag team to deal with it.  We knew where we were going would be a great experience and one which Erin and the rest of our family would enjoy.  We knew Erin wanted to be a part of it.  We just had to be on top of things and work through the triggers.

Facing fear requires a willingness to adjust to and accept whatever happens.  We learned to scoop Erin up and go into the normal activities of daily life with her in tow.   What I remember most are the times she leveled and settled, allowing herself to feel the joy of the experience and allowing us to feel it with her.     

Facing and overcoming the wolves in our lives is worth the work.                                                                                                                                                                                                                                                                                                                              

I’ve been thinking about the siblings. Not my own siblings, or birth children, or ones joined through long-awaited adoption.  Not even ones who became as close as siblings joined as bands of brothers and sisters through church youth groups and corps of cadet companies at military school. The siblings I’m thinking about are the ones who were taken out of their home and placed in foster care…with us…a family of 3 displaced…within a crowded home during a time we were also transitioning home with Erin after heart surgery soon before Christmas. Everything changed with a visit to court for them and a phone call to us afterwards.

Three siblings lived in our home. They were not small children. They were two teenage boys and an older sister who was in her early 20s. They came with some of their belongings. Overnight we became an extended family. The older sister had been living with us for some months, so the 3 were rejoined. Our sons and daughters had new siblings. We had talked it over and all committed to being a family while respecting the space for the 3 to be a family within ours. I remember evenings we would sit upstairs listening to the 3 siblings sitting at the kitchen table laughing, fixing snacks, talking so fast I couldn’t keep up with their conversation, and hoping they felt safe and loved in the midst of a not-so-ideal situation…living in a place they did not choose but still having each other.

We had Christmas and worked hard to be fully inclusive among us…to get to know new siblings and meet each others’ friends and relatives that could be together in these early days of our new living arrangement.  We focused on fitting everyone into smaller spaces, finding places for everyone to sleep and gather, watching movies, playing games, talking, cooking lots of food while learning preferences.  There was lots of grace and patience extended by the 3 who joined our family and our 5 also who had every reason to love them as siblings.

We had a history. Rob and I had a connection with the boys through the youth group as volunteer youth leaders.  I had taught the sister in middle school.  We knew them and cared very much about them.  They were so talented, brilliant; yet, also broken.  They loved each other dearly and could also trigger their deepest pain within each other.   

There were lots of directions, directives, and new pathways to navigate within the foster care system.  There were appointments, an influx of support personnel that could change frequently, mountains of paperwork, and our share of challenges as we began to unpack both life behind us and how we were going to do life before us.  Rob and I became advocates and facilitators of what would be needed to move forward while we were learning the processes, timetables, and expectations within our roles as foster parents and with respect to differences in belief systems of how families operate.

Our grown sons went home after Christmas.  We were adjusting to life with teenagers who were active in sports, had bass and drum lessons, needed rides to early morning practices, needed to find work, needed supervision with relationships, stayed up late doing schoolwork and social media, and needed reasonable limitations placed on their daily lives.  They were adjusting to Erin and Diana being in their world.  Diana stayed to herself, but Erin pushed herself into their world and their space demanding they answer her when listening to music with earbuds in their ears while on their tablets or watching TV.  I worried all the time they would not understand her and how she communicated.  Erin was close to the sister sibling who engaged with her very well.  Erin would stop in her room daily after school to tell her about her day.  The boys amazed me in that they never flinched if Erin had a rough night and yelled more than usual. They never acted impatient with her or told her to stop.  As time went on, Erin called back and forth to them to tell them she loved them.  They would answer back with the same, “I love you, too, Erin.”

Erin got sick within a month after Christmas and had to return to the hospital for 3 months.  I stayed with her. Rob drove back and forth daily to the hospital 50 minutes away after working unless Erin was in a very vulnerable place.  Sometimes, we switched places. We made sure there was a parent in the house at night.  The community responded to our need with meals delivered nightly for 87 days.  Our dear friend met Diana from the bus and stayed at our house until Rob returned home.  Other friends took shifts.  Still others picked up the foster sons from practices after school and took them where they needed to go. I organized the daily plan from Erin’s hospital room. The boys never complained.  We tried to shield them, even after Erin came home on dialysis, from the seriousness of her condition and our pain.  They had their own pain.  This was not an ideal situation for them, but they were able to focus within themselves as long as their routines were not disrupted. 

It was different for the sister.  She had been closer to Erin and to me.  Every time Erin was in a really bad place where she was having surgery or hope was waning, Rob and I would look up to find her coming into the PICU to be with us after her shift at work.  She’d sit with us along with some other dear friends and Rob’s dad most of the night until Erin stabilized.  On the night Erin crashed for the last time, she showed up as the team was organizing in the PICU to respond to the code.  She stood beside the two of us while Erin passed.  Our sons and daughter, our close friends, and our foster sons joined us soon afterwards to say goodbye to Erin.

No foster child should have to go through this with a family, but they did.  They took on our pain and trauma along with theirs.  We took on their pain and trauma along with ours. This is not the whole story, but it is what I think about now.  These 3 siblings are a part of our story and witnessed our deepest pain.  We didn’t plan it that way.  We tried to be strong and present for them in the midst of their pain.  We had ten months after Erin returned home to be together as a family.  During that time the sister moved forward in her life and the youngest son moved to another family we knew in our community as we realized Erin might die while he was living with us. He was especially volatile, and we feared the impact her death might have on him.  The oldest son chose to stay with us until the summer after he graduated and prepared to go to college.

I have carried much hurt in my heart over trying to be strong as a foster parent to young men who needed and deserved so much more while also being a caregiver to a child with intense medical needs.  I wasn’t there for Diana at home during all that time. She had our friends taking care of her instead of me.  Time was taken from all of us. The togetherness and blending we intended to create as a family for the 3 siblings was disrupted for a long time.  The extra care we intended to surround our girls with as we moved them in a bedroom together close to ours when the siblings moved in became a close haven of precious memories as we’d hang out together watching their favorite movies while Erin was on dialysis.

I have mourned over having exposed the 3 siblings to these intense circumstances beyond our control. I have also mourned that we had to share the months, weeks, and days so close to the end of Erin’s life with the siblings when we really needed to have space, freedom, and privacy to just be with our family. We were prepared to take on the trauma of another family when we were asked to do emergency foster care. It became apparent there was no other place for the boys to go. The foster care system left them with us when Erin became so ill. I was still pacing the floors talking to social workers on the phone trying to get counseling set up for them while Erin was in surgery or while I was sitting beside her bed in the PICU. We still had all of the same responsibilities on top of the trauma we encountered in our family due to Erin’s illness. There were no offers to help us from the system and only once did social workers agree to have a required family support meeting in the waiting room of the PICU instead of the Dept. of Social Services office to accommodate our needs. Those we encountered in the system were fine people, just overworked with huge caseloads. It’s been an extra layer of trauma to peel back and expose. Our lives became vulnerable beyond our control in front of kids who didn’t choose to have their lives exposed to that world through the foster care system.

I’ve softened over this situation during these past few years and only recently toward the sons.  I have remained close to the sister and am someone she reaches out to for support and a listening ear. I am a phone call away, and I love when I’m able to see her around her busy schedule of nursing school. I am breathing easier when I think of the effects this experience had on me and have tried to shed the heaviness in my heart I have felt over our experience as foster parents during the time (over a year) we were in the midst of our own despair. When Erin became so ill, the oldest foster son told Rob that when his family was falling apart, we were there for them; and now that our family was falling apart, they could be there for us.  The statement holds some wisdom that gives me hope that maybe the siblings took away something positive and sustainable from their time with our family. We did also have happy times and laughter, nights out seeing movies and going to town, two Christmases, and a family beach trip.  There were lots and lots of talks just about their thoughts as they processed all that was happening in their lives. There were very intense times as well as they relaxed in a safe place and the pain of their past would surface.

We tried our best, and when the pressure was on; sometimes the unexpected happened to take the edge off of the stress we were under.  I remember one such instance was the time the youngest son and I were coming home from his therapy session in Charlottesville on a Friday night. We hit a traffic jam due to a wreck on I64 ahead of us.  He was a drummer in the band at school and had his drumsticks in his bookbag. After about 30 minutes of sitting in the car at a standstill, he turned up his music, rolled down the windows, and started drumming on the dashboard of the car with his drumsticks for the next hour.  I took small bottles of hand sanitizer and joined in the jam on the steering wheel.  We laughed and talked a little more than usual. 

Part of the lesson of being a foster parent was mine to learn… to clear my head of set expectations…to just be there and go with the flow. To not judge by typical outcomes…to be flexible…to appreciate the small openings in conversations and humorous interactions where connections were made.

Today, I would just want the siblings to know that I love them.

It’s too easy to feel guilty, to feel defeated, to question how much you invested in time and attention.  When people so close to you are gone, you mindlessly calculate all the time you will live without them in your presence as opposed to the time you spent in life under the same roof engaging with them.  You think about the evenings you were on your phone or watching TV, doing school work or class work, doing absolutely nothing…worrying about things that don’t matter, just being tired and dozing on the couch, replaying a troubling interaction at work over and over in your mind, having a glass of wine and knowing just that one would help you fall asleep, sitting beside the person who is now gone but not talking to him/her as if it was the last day you’d spend together.  Not telling them again and again how much you love them, not planning that last big trip or surprise of a lifetime.  Just sitting in the same room.  Just being together.  Nothing special.  Sharing space in a familiar place…together.

Was it wasted?  On a daily basis, did you not make the most of time…together?

We now have these conversations in our home with our family.  I hear these words spoken.  I hear sadness in the voices of those I love. In these moments, we share our guilt.  We didn’t sit on the couch with her enough.  We didn’t read to her enough.  We didn’t color with her enough.  We did ALL of these things. But…what’s the measure of enough?

“Enough” is searching within for the memories of the moments that mattered that you will remember forever.  At each recollection of a special occasion, a season, a significant event, a particular age during childhood, an evening on the couch, something unexpected, even an illness that spread through the family and how you cared for one another…a memory in life that marked a shared experience.  Anything mentioned with an introduction like, “Remember the day when…?” or “I can’t believe that…” that prompts a shared point of recognition, a mention of people inside and outside the family who were involved in the encounter…neighbors, childhood friends, pets, anything in and out of the ordinary.

Someone mentions it, we remember, it gains significance in the sharing…reminding us there are many unimportant and seemingly insignificant interactions that occurred that now matter more than ever. 

That’s what makes us family.

“Don’t beat yourself up,” I say. You were there.  You drove in the middle of the night to the hospital when we were afraid she would leave us.  You flew across the country.  You held her hand.  You helped her walk and regain strength.   You carried her up the stairs.  You cheered her on in small things knowing she would not be with us much longer.  You found a smile and encouraging word when you were dying inside…

The everydayness of home cannot be replaced by any Disney trip that never happened or any extended goodbye.  It’s the colored pictures to “Amanda” or “Dad” she taped to the wall behind the couch or that are still hanging on the side of the refrigerator that matter.  It’s her picture that we blow a kiss to on the way out of the house on a workday.

It’s how we continue to operate in the Now… It’s the colorful family group text messages during each Hokie football game from different sides of the country. 

It’s the texted picture of grandson, Wyatt, dressed in a hospital gown early in the morning as he goes in for an MRI holding his “lovey” sent to everyone in our family asking for prayer for good news (Wyatt’s OK, by the way), and words of love circulated in “tings” as we all respond immediately. (Such a brave boy! Love you dearly! Praying!)

It’s that we are there for each other from wherever we are at a moment’s notice.  When it counts.  When it’s requested.  When it matters.  Never doubted.  Never did.

Guilt has no place here.  Not in family.

“It’s Christmas!”  These are the words we’d hear from the front seat of the car while driving at Christmastime.  We’d lean into Erin’s reaction to our prompting of where to look while tilting our heads and shoulders back to catch a quick glimpse of her mouth open and hard breathing against the window.  We’d follow her wide-eyed gaze looking out the window at the Christmas lights on nearly every house and business we passed shining in the dark.  It didn’t matter if the display was elaborately colored with a dumpy Santa and reindeer in the yard or more simply adorned with white lights and Christmas plaid ribbons.  From the backseat of the car the words “Look at that one!” erupted with joy and were followed by a Christmas carol or traditional Christmas song.  She’d start singing “The first Noel, the angels did say was a certain poor shepherd in a field of a hay!” or “Have a jolly, jolly Christmas!”  “Sing it, Mom!”  We especially loved hearing her sing, “Yellow Snow, Yellow Snow, Yellow Snow!” when it was spitting snow.

Caroling…Each year while our kids were growing up, we’d go caroling in our small town of Fork Union with the church youth group.  Sometimes we would pile into cars, and some years we’d walk down sidewalks.  We’d even walk down side streets as far as we could go or until our hands and feet were numb with cold.  With flashlights, battery-operated candles, and song sheets, we’d warm up with singing carols to all the houses on our street.  We’d turn down Route 15 and Route 6 in search of our seasoned neighbors who would grab a shawl or jacket and huddle on the porch. They came to anticipate our coming each year and would open their door and come out on the porch with a nod, a smile, and eventually start singing along with us.  We knew the visit had ended when Erin and youth spun into “We wish you a Merry Christmas!” We loved these wise folks who had watched Rob, his brothers, and then our boys grow up on Fork Union Military Academy’s campus.  They encountered the Feathers second generation in classrooms, ball fields, and in the dining hall.  They were privy to the daily life of day student cadets playing in backyards and watching them through kitchen windows as our sons walked up and down our street each day in grey sweats carrying lacrosse sticks and bookbags stuffed with practice gear, uniform items, and school books. 

As the youth carolers would venture down to the next home, Rob would go up to these sweet friends and mentors to offer a personal greeting with Erin in tow skipping to her “Merry Christmas!”  A special stop was a small house near the post office where a sweet lady we seldom saw and did not know personally would come out to her porch.  The students always wanted to remember to stop by to sing to “the lady who cries”.  She always wiped away tears as we sang.  Sometimes, we baked cookies to drop off at each house, or we would just gather early to eat pizza.  It was a highlight of Christmas and an event my boys hoped would fall within the days of their visits home during their college days.  It often ended with a bonfire in the backyard. Erin captured the beauty of caroling in our home throughout the year–all year long– in that with each passing thought of Christmas, there was a seemingly appropriate carol or Christmas song she would sing with the expectation for all to join in with her.

Stockings… were “Christmas socks”, as Erin called them.  They were frequently taken down from the stairwell or mantle where they hung throughout the holiday season to be worn by the girls (as instigated by Erin) until they no longer fit.  The Christmas creche on the foyer table was an interactive meeting station for Little People and farm animal figures.  They all came to visit the stable for Christmas.  An occasional Marvel super hero might flip off of the stable roof before the crowd to rescue the baby Jesus (a Diana twist to the story).  The first Christmas after Erin died, I agonized over hanging up stockings or bringing them out at all.  I wasn’t sure I’d ever be able to use them again, and I couldn’t look at hers.  I would always pause and reflect at Christmas when seeing the stockings hanging together, usually aligned across a stairwell landing or positioned down the staircase in view from the foyer, on the blessing of having my children together, on their well-being, and on their happiness.  If there were stockings hanging, they were with us during the holidays.  We would see them.  I didn’t know what to do with Erin’s stocking.  A good friend shared a tradition in their family of putting special messages and memories in her son’s stocking at Christmas in the years after his passing.  I got from that conversation that it was important to find something visible to put into our existing traditions to remember Erin at Christmas.  Our family stockings had special meaning.  I would always wrap everything inside, even the little things like gum and life savers. I’d wrap special snacks that I didn’t normally buy except at Christmas.  It made the unwrapping process last longer, and as the kids got older, they’d make a big deal in a humorous way about finding a candy bar or nail clippers wrapped up in their stockings. I kept the stockings and decided to bring them out late on Christmas Eve after Erin passed…no longer hanging across a mantle or down a stairway, but placed lovingly under the tree.

Christmas cookies…were nothing more than slice and bake chocolate chip cookies.  Erin and Diana helped bake them, or what was left of the dough after Rob and the boys found it in the refrigerator.  The cookies and milk were and still are a highlight of Christmas while watching the “Home Alone” marathon on Christmas Eve.  Erin’s Christmas movies and shows were not just a seasonal activity.  We watched all the old Christmas cartoons in summer months as much as during the Christmas season…from “Rudolph, the Red-Nosed Reindeer” to “Frosty the Snowman” to “Charlie Brown’s Christmas”.  The actual season began with watching “Curious George Christmas” and “Alvin and the Chipmunks” Christmas movies.  Erin loved them along with shows like “Sesame Street’s Christmas” with the episode of “Christmas Every Day”, which was so typical of her.  What if Christmas could be every day?  To her, the thought was never exhausted.  I can still see and hear the friends of Sesame Street standing in the snow under the street lamp singing, “Keep Christmas with you all through the year.”  Erin did just that dressed in her fleece Christmas pajama pants sitting on her spot on the couch, coloring and watching her Christmas shows. We got to experience the magic of Christmas with Erin through the eyes of a child continuously for 18 years.

The Tree…Christmas was always about the Christmas tree for Erin and will always be what I think of first when I think of her during this season.  She was not focused on the presents or opening them Christmas morning.  It wasn’t especially Santa or his coming, though it was especially exciting after her fourth heart surgery at age 17 when the FUMA dining hall director brought Santa down our lane for a house call to Erin and Diana at the end of the annual faculty kids’ Christmas party.  Erin loved everything about going to church, so the traditions of Advent held as much meaning and excitement as every Sunday with VBS, a respite party, or Mega Camp events trumping all!  The Christmas tree meant everything to her.  My brother, Chris, had two large Christmas trees in his house, one with just lights that stood tall in the foyer against the staircase and the other in the family room.  Erin would sit at the base of this tree during our visits to my brother’s home at Christmastime and look up to the top of it saying, “Wow!!  It’s Christmas!!”.  One year when the girls were small, I caught them sitting opposite of each other at the base of our Christmas tree pulling on the garland which made the tree seesaw back and forth between them.  Erin loved the tree and would perch on the couch in our living room as Rob was decorating our tree as if she was witnessing a miracle in the making as the tree lit up the room.  She’d “ooo” and “aah” with each ornament that was placed on the tree and would draw her arms back and hide her face as “the bird” was put on the tree.  The bird is an ornament, replete with feathers, that holds a special place close to the top of our Christmas tree each year.  Erin was always afraid of the bird…specifically of the feathers on the bird. We are not sure why, but it was a fear that never left her.  I’m thinking it may have started when she was younger, and we’d all go to Kaybee Toys in Fashion Square Mall in Charlottesville on weekend trips to town.  My boys and Rob would push the buttons on all the toys that made noise as we’d walk down the aisles, and they’d wind up the toys that would move across the floor, setting them free from their hoolahoop constraint.  Some of these wind-up toys were small animals with feathered tails that would slap up and down on the floor as they rolled away.  I have a memory of Erin clinging to my neck and hiding her face in my shoulder on one of those visits.  So, when the bird went on the Christmas tree limb, she would first shudder before gathering her courage, sitting up straight, and announcing, “Erin, don’t be afraid of feathers!!  IT’S YOUR NAME!!!”  Whenever the tree lights came on, there was the same shudder of acknowledgement and verbal review in affirmation.

The singing Christmas tree…Erin’s attraction to a battery-operated singing Christmas tree began in her preschool special education classroom at Cunningham Elementary with her teacher, Janice LeSueur, who loves Christmas, Elmo, and Sesame Street as much as Erin.  There was always a singing Christmas tree in Erin’s life that prompted her to dance and sing with delight in the moment.  People with her in that moment, whether they were teachers, kids, or principals would stop to dance and sing along with her.  There was a singing Christmas tree in the PICU during the Christmas season in December of 2015 when Erin had what we thought would be her last big heart surgery and soon before the onset of endocarditis.  I decorated her full-length glass window in her PICU room for Christmas and lined snowmen and Santa figures, globes filled with water and lit up with snowflakes, swirling in the darkness across the window sill.  “Christmas” provided verbal and visual prompting to work toward getting stronger…for getting out of bed to walk….to lap around the circular PICU hallways to find the singing Christmas tree on the counter of the nurses’ station.  It became “Erin’s tree” in the minds of those who met her and for those who frequently stopped with stethoscopes around their necks and with charts in their hands to sing a Christmas song with Erin while doing a dance step in their scrubs and white coats.  That singing tree was replaced after Christmas with a teddy bear singing “Lean on Me” on Erin’s lengthy return to the PICU and 7^th Floor West wing of UVA after Christmas.  Doctors, nurses, technicians, and orderlies would pause as they passed us to join in the singing of a verse or chorus of “Lean on Me” with Erin as we’d wheel up and down the hallway in her wheelchair for a break from her hospital room.

Christmas….was about the lights and the music for Erin and the togetherness of people who stopped in the moment to share a connection of a common heart and spirit that lies within us all.  She had a way of getting your attention and drawing you into her world.  She had no doubt you would not want to miss whatever she had to share with you.  She would watch for it to capture you in the way it did her. My joy was watching Christmas evolve around her and in looking deep into her eyes to see the glimmer of happiness she shared with others in the moment she mentioned what she saw to someone around her.  It was much the same in our home on a daily basis when Erin had something to share.  She set the expectation–demanding that we stop, get on a level of her choosing, and connect to an experience with her in the moment with no apology.  She did not naturally consider that the activity in which we were previously engaged could be more valuable than sharing a special moment.  She imposed Christmas on those around her with common spirit and a feeling of heartfelt warmth amongst other people who dropped their guard for a just a moment to do the same.

This Christmas…as I look at Erin’s little fir tree in my yard lit in the dark night of this season with her favorite Disney characters dancing in the branches, I am warmed by the spirit of this child’s memory that I hold close to my heart.  It was her connection to the world that I worked hard each day to see clearly, to understand, and to be near.  And, as I drop my guard a bit more in this third Christmas without her with us, I’m realizing the music of Christmas in carols and tender songs opens my heart and renews a memory that–even in loss– I love this music and that hearing it rekindles joy inside.

 I’m remembering that I love Christmas.

I’ve always loved Christmas…I love the joy in gathering with family but know it now comes with an acute awareness of Erin’s absence clearly marked among them. This was especially true the first Christmas without Erin.  We were getting ready to sit down for Christmas dinner.  With a large family, we’ve always had a card table connected to the larger table, so we could all eat together in one room.  Erin would always sit at the end of a card table to give her more elbow room and some space from the noisy crowd.  It gave the person sitting with her a pathway to a quick exit if she got agitated and needed a break.  Rob caught my eye as I was bringing a plate of food to the table and nodded toward the card table pulling a chair up to the end and taking the seat next to it.  I joined him on the other side of the table.  Our eyes locked every now and then during that meal that was filled with hearty conversation as it should.  He whispered once that he didn’t want her to be left out, and I found comfort in that knowing look.

The Old and The New…There will be joy that grows stronger with each year and that will be met with both old and new traditions and new people in our lives who do not remember Erin or have never met her, like my grandsons and people we’ve met in our new home community of Farmville.  I’ll linger looking at the old pictures and feel that dull stab in my heart in realizing once again that there will never be new photos of Erin and wishing I had taken so many more.  Last Christmas, I asked my grandson, Wyatt, what he wanted for Christmas.  He was then, and still is, enamored with Batman and wanted Batman toys and pajamas.  I started thinking about my boys wearing super hero costumes at Halloween and how they played and slept in them through the years.  I went through many shoeboxes of photos looking for pictures of these costumes to show Wyatt of his dad and uncles.  I found many that pictured the boys in stages of togetherness at a variety of ages and thought about how, even though they don’t live together anymore, they have remained so close, talk often on the phone, and coordinate their schedules to be together at Christmas and for vacation weeks at the beach.  It means everything to have our children together through the circles of their lives, as Joni Mitchell sings in “The Circle Game”.  I made a video of the boys’ circles in pictures and song as a final gift last Christmas.  I cried a little looking at pictures of all of boys and Diana with Erin and probably would have been in tears even if Erin was still with us.  I ended with a grateful heart for having this special collection of photos, a collection that reflects our lives through the years and that allows me to remember so much of their childhoods.

Yet, there will be new pictures made of all I hold close to my heart in the here and now.  I’ll take and post even more pictures than I used to do.  Because in everything I have learned in these past few years, I value the very most time spent together making new memories.  I know what it means to capture experiences in pictures and have told my kids to get used to it.  I know what it means to be truly grateful, to make the most of now and what lies ahead.  I value connectivity—being connected to what is really important. 

The Erin tree…I need that little lit fir tree in the yard at Christmas.  I stand in the cold and look at it when I arrive home after work before going in the house.  I peer through the curtains at the window as I pass through the living room before I go to bed at night and when I think of her.  I think about all the stories behind the ornaments and how those characters added to Erin’s character and became a part of who she was in life.  They provided scaffolding for her communication with others…her different voices, temperaments, and attitudes.  She was sweet and sour, kind and obstinate. She made her presence known boldly and sometimes shockingly.  Erin was a light in our lives; and in this season, I remember the constant Christmas joy she offered others in ways only she could uniquely communicate— ways that let you know just how much she loved you. 

Merry Christmas, Erin.

They met on a Sunday afternoon the day before Erin’s third birthday.

We had left for Ukraine two weeks earlier leaving all of our children for the first time ever for that length of time.  Family friends kept our kids in pairs between two households.  They gathered at our home on occasion during the two weeks we were gone with their grandparents (Rob’s parents) for our children to be together and to feel a sense of normalcy.  Rob’s parents were ever present in their lives and lived two minutes from our house in the same community.  They were frequent visitors for evening coffee breaks on the front porch after work a few times a week.  Rob’s parents worked at Fork Union Military Academy and also ran rescue squad in Fluvanna County for many years.  We’d gather on the porch of our 100-year-old faculty house on route 15 in Fork Union where we lived.  While the eighteen wheelers roared down the highway in front of our house, we’d sit on the porch swing and listen to my mother-in-law tell stories she heard on campus and the Motor Lodge restaurant. We’d lean into her words while watching her pause to exhale between smokes.  I’d keep a close watch on keeping her cup of black coffee filled.

We loved her and hung onto every word.  She was probably the smartest woman I’ve ever known.  She never went to college.  She was the first woman fireman in the county.  She could read people.  You knew if she liked you or if she didn’t.  She didn’t mince words.  My mother-in-law was my best friend and constant companion during the formative years of my children’s lives.  She’d call after supper and say, “Got any coffee?”  I’d stop everything and make a pot.  She’d come over.  She didn’t judge me…or, if she did, she didn’t tell me.   She taught me how to be a mom to a brood of boys after raising four boys of her own.  My boys loved her and knew her phone number before they learned their own.  She played video games and knew the codes of all the games they played before they did.  She’d bate them to go to the next level. She told me that’s how she kept her boys reading as they grew up.  She’d read the books they read and tell just enough of what was coming next to keep them interested.  I didn’t play video games or read everything my boys read, but I did learn from her how to stay really connected to what was important to them.  Later in life, she, my father-in-law, and Rob watched the girls one night a week for more years than I care to admit so I could go to class at Longwood to get my master’s degree one class at a time, which was my leisure and a night I didn’t have to fix dinner or give anyone a bath.  I could eat at Arby’s or Pizza Hut with two of my older sons, who were also students at Longwood.  We’d eat dinner and then I’d go to class.  She and my father-in-law helped me stay connected as a parent to an older group of boys while they cared for my little girls.  I graduated with my master’s degree the same day as my middle son and my daughter-in-law graduated with their bachelor’s degrees from Longwood.

I started assembling a doll house for Erin’s birthday before we left for Ukraine to find a sister.  We didn’t preselect a child.  I had in my heart that this new little daughter needed to be about Erin’s age and needed to have a name that her birth mother gave her that could translate easily to an English name.  We had a daughter with Down syndrome.  She was eight years younger than her youngest brother.  Our three boys had each other.  It’s important for siblings to have each other in life.  Our three boys would be grown and off to college by the time Erin was ten.  Erin needed a sibling that was closer in age to grow up with her.  Rob and I felt like that was somewhat of a selfish reason to adopt a child, but then Erin needed a sister as much as the new sister would need a family.  Daniel and Dylan were in high school.  Daniel said Erin needed to have a sister to see the world as she saw it.  Kyle was in elementary school and said we were getting a sister for Erin and he’d never even had a dog.  We got a Jack Russell for Kyle before we went to Ukraine to get a sister.  Boy, was it complicated to figure out what all the kids needed, but we tried!  The Jack Russell was not the best choice of a dog for a family who lived on route 15, which was a busy highway.  The dog was adopted by another family we knew soon after we adopted our new daughter, Diana.

We left instructions with Jack, my father-in-law, to put together the doll house for Erin, so she would have a great present for her birthday.  I had ordered it two weeks earlier.  I wanted Erin’s third birthday to be perfect upon our return with her new sister. Maybe I was preparing Erin to share us with another little girl.   Jack spent the two weeks putting together a doll house for Erin that was much more complicated to assemble than we first thought.  The kit arrived in the mail with tiny wooden Williamsburg blue shingles and white trim that had to be glued on piece by piece just days before we left for Ukraine. 

Everything about that first trip to Ukraine is now a whirlwind in my memory, and especially the last full day of the adoption process.  We left the courtroom in Kyiv with Diana in a pink snowsuit on a snowy Thursday afternoon.  We went to the medical center and received a medical release in a sealed envelope that could not be opened.  We hurried to the American Embassy in Kyiv to get the final paperwork to leave with Diana.  It was two months after 9/11, and armed guards rushed to our taxi when we arrived because no vehicle was allowed to stop in front of the building.  We left later that night with another family who also had adopted a child with Down syndrome in a van with a driver who spoke only Ukrainian and Polish.  We had no translator at that point.  We headed for Warsaw, Poland, for a 15-hour van ride that would last through the night.  We had an 11 o’clock appointment the next morning at the American Embassy in Warsaw to get Diana’s visa to come to the United States.  I remember there were no seatbelts in the van, so I leaned my shoulder against Rob with Diana on my lap to keep from bouncing around on the seat.  I clung to Diana in her slick snowsuit that squeaked as it slid across my coat when the van hit potholes in the road. 

We were stopped along with all vehicles on the border of Poland.  It was dark and spitting snow.  Armed guards were opening trunks of cars to search luggage at checkpoints before crossing the border.  We were instructed to exit the van and stand in the snow.  Our adoption documents were to be reviewed.  We had some medical envelopes that were sealed with gold seals.  We had been told we would not get the visa in Warsaw if the seals were broken.  So, with no time to think, the other mother and I looked at each other and quickly hid those envelopes in the pocket under our seats.  We handed over the larger packet of adoption documents along with our passports upon exiting the van.  The military presence was extensive on the borders and in airports as we travelled home so soon after 9/11.  I held the new little girl in the snowsuit I had just met with the sprig of hair on the top of her head that Rob referred to as his “Ukrainian pixie” close to my chest as we arrived at the American Embassy in Warsaw early on that Friday morning.  We arrived in the Baltimore airport late Saturday night and went immediately to the immigration office where Diana was given dual citizenship that she still maintains today as both a citizen of the United States of America and Ukraine. 

I had been completely out of the routine that was second nature to me.  I had been in a foreign country for two weeks and had barely communicated with my children at home.  The past 72 hours had included sitting in a courtroom where a judge asked to see my pictures in a pink notebook of Erin at school in her early intervention classroom at a primary school in Fluvanna County where children in wheel chairs attended school and had physical therapy and went on field trips to apple orchards and pumpkin patches with typically developing children.  The orphanage administrator in the courtroom asked for the notebook looking directly into my eyes instead of at the adoption facilitator and took it to show the judge.  Oles, our adoption facilitator, sat between Rob and me translating the conversation between the judge and the orphanage director while looking at the pictures of Erin at school with her classmates in a preschool classroom as if they had never entertained the idea of children with disabilities going to school.  They returned the notebook and asked me to return with “people who could train their people” on how to educate children with disabilities. 

I was mom and a school teacher.  I had five kids, two with Down syndrome.  Rob and I had borrowed all the money required for an international adoption.  I told them I’d raise money for therapy equipment.  I’d wake up in the night when we returned home thinking about the request.  Our sons loved to play basketball.  I fixed hamburgers one night for dinner and talked with my sons and a PG basketball player who was my oldest son’s best friend about how to raise money for therapy equipment to send to Diana’s orphanage.  They talked while we sat around the table about having a basketball tournament at FUMA with community church youth groups.  We set a goal of $1000 for therapy equipment.  We raised $5000.  One of the students in my church youth group reminded me the Ukrainian judge asked for people who could train their people.  I asked an early intervention team from Cunningham Elementary School in Fluvanna County (a physical therapist, an occupational therapist, and an early intervention teacher) to go to Ukraine to set up a therapy room in Diana’s orphanage in 2001 and train their caregivers.  I pledged to earn their travel expenses with a second basketball tournament a month later.  Others in our community rallied their teams.  We raised another $5000.  We shipped the therapy equipment and pediatric wheelchairs and a standing table to the Berizka Orphanage in Kyiv region to Diana’s orphanage in June of 2001. 

When I talk about Ukraine, I say “we” and “our,” but anyone who has ever been a small part of something big knows that it’s not about the “we,” the “our,” and especially not the “one”.  It’s all about the cause that gains strength with the building of relationships…relationships within a network that connect people who need with those who serve and have been wanting their whole lives for that “something big” to find them, much like the same reference in The Dream Giver by Bruce Wilkinson about wanting to find what you were made to do.  The Ukraine network is a part of Erin and Diana’s story. What was my hook?  I started as the messenger—a mom of a Ukrainian adopted daughter and an American birth daughter—a parent of children with Down syndrome that linked me to two societies that perceived the fate of these children very differently at the time my daughters met.  As a public school educator, I knew the power of information and had the thirst for knowledge about how children with disabilities can learn and be more productive in life if given the chance to be cultivated during their early developmental years.  I walked through that life and talked simultaneously—to anyone who would listen.  I became one of many fundraisers.  The story of my girls had an impact that went beyond our family both to American and Ukrainian audiences.  Sisters Erin and Diana have never known that having that extra chromosome provided others the opportunity to change attitude, perspective, and belief in a population of people who could be more productive than originally expected within their communities—a story that is not unique to my girls, but in Rivne, Ukraine, it has its place.  And for me and many others who find Ukraine to be a second home in their hearts, it has been a humbling privilege to be a part of the network.  I have witnessed something Divine at work that has changed me.

After that first trip, we began to form relationships with orphanage directors on yearly summer trips.  We went to serve and embrace all of the children.  We bought shoes and school supplies.  We fixed stoves and refrigerators in the kitchens where only one burner was working.  We insulated windows in the baby house.  We provided vacation Bible schools with groups of volunteers who shared with children who had no parents there was a father in Heaven who loved them.  We built ramps with care and repair teams and talked to parent groups who had children with disabilities.  We began to build collaborative partnerships with already established Ukrainian-American Omni Centers that were like the beginning of the March of Dimes in America.  We translated the “Small Steps” Early Intervention curriculum that framed early development for children with disabilities into Ukrainian and published copies that were distributed to early intervention centers across Ukraine through our Ukraine Special Needs Orphanages Fund. We began to find professors and therapists who could train and present at conferences in our Rivne region from local universities and raised money for their travel.  Our corner was education and advocacy in public schools for children with disabilities.

We went to Lutsk, Ukraine, on one of our trips to talk to a parent group of children with disabilities.  I will never ever forget a conversation I had with a mother in a parent group who was bitter and angry, because she could only get limited services for her child who had a disability. She was skeptical and kept searching my eyes during a parent presentation where I was talking about being a parent advocate.  She raised her hand and asked me if I would still be there if I had not had Erin.  I was presenting with two professionals who had chosen to teach children with severe disabilities and had been doing so for 30 years.  I was a general educator who had seldom crossed paths, much less engaged, with children with more significant disabilities and their families.  I said, “No…I would not be here if it were not for Erin.  I would not have considered adoption.  I would not have gone to school to learn how to parent a child with a disability.”  I added, “Oh, what I would have missed in life had I not had Erin and had not found Diana.”  Her eyes softened. 

Diana sat on the floor next to Erin the Sunday afternoon we arrived home watching her intently.  She was 19 pounds at age 2 ½ and was wearing 12-month clothing.  She didn’t talk and didn’t take steps independently.  Erin was much heartier, and would scoot across the floor on her bottom, moving fast among her toys in the family room, singing in a low voice, and talking to herself.  What each girl lacked in early skills, the other one had acquired.  Within a few months, Diana had receptive and expressive language and was walking.  She had fine motor skills and could help Erin manipulate toys better…until she took them from her and ran, which was something Erin had never before experienced.  We handed her a plastic shopping cart and said, “Go get her,” which prompted her to pull herself up while holding onto the cart.  Frequently, Diana was behind Erin pushing a riding toy with Erin sitting on it.  Within six months, Erin took her first steps independently.  This pattern continued, yet it become evident in their first year together that the gaps between them in their skill progression would quickly widen.  Diana could process more complex informational messages and reciprocate with a response that demonstrated her ability to reason—and with determination!  She was opinionated and bossy.   Erin had words but did not connect them to more than simple conversational exchanges that were often one-sided. Therefore, though the girls were always together with us and often shared a room through the years, their preferred activities at home were very different and their ability to connect to each other in play remained parallel most of the time. 

Like many children with cognitive disabilities, there are scattered strengths among the wide gaps of delays.  Erin had an incredible memory for recalling words to familiar songs and experiences she shared with familiar people.  Whatever was the “last” experience that stuck in her memory was your mark for life and what directed each next conversation.  Every once in awhile we’d walk into an experience in the making she had created with intent and purpose, such as the night we went to check on her after putting her to bed.  As we neared the child safety gate in the doorway, we heard her saying, “PUSH!”  She had lined up her dolls and stuffed animals against the gate and was sitting on the floor behind them calling out their charge.  We’d hear her at other times in her room rearranging the furniture.  She had a plan for how to move them and could move most everything by pushing against it.  Erin would practice baton and cheerleading by watching short videos coaches made for her on an Ipad in the kitchen for hours in the evening until her lag time behind the other girls shortened.  She had a plan for clothing combinations for costumes and daily outfits and spent hours applying make-up and nail polish and fixing her hair to then take multiple pictures of herself on the Ipad.

Diana has always been inherently social.  She has made friends with all school personnel and any student who would interact with her over the years.  She would often slip out to visit the neighbors on our block in Fork Union as they arrived home from school or work.  The same is true now wherever we go including grocery stores, sporting events, neighbors when outside in their yards, and even airports the few times we’ve flown with her.  Diana has always had an area of a room in our house with her special belongings stashed underneath a coffee table or on a shelf beside a couch where she is huddled in a particular spot that is her space of her own choosing.  For many years, she spent her time at home coloring using multi-colored gel pens that she would use to fill small blocks with color that were drawn throughout the figures like a mosaic of super heroes on a coloring page.  She played with dominoes and Little People and organized them lining them up in different ways.  She loved to practice writing words in print neatly with certain black gel ink pens and can do so beautifully in all capital letters with small print.  One year she wrote the names of every person in several elementary yearbooks multiple times in a notebook.  Another year she copied an upper elementary science textbook into her notebook working on it each night while she watched her shows on TV as her preferred activity.  In recent years, Diana has become technology savvy.  She taught me how to send emojis on my text messages and can change the TV from Netflix to prime time to find any show or movie.  When a small question is asked in conversation about a person on the news or in a show, like, “How old is Simon Cowell?” she is right on it looking it up on her phone and announcing the answer.  She loves to be in the midst of sports conversations where she can track the final scores of games or stats of individual players and report them to the group.  She switches from playing a coloring game on her phone and looking up information to watching videos on her computer exactly at 9:00 P.M.  We ask her, “Why 9:00?” and she lets us know the answer is obvious but does not provide it.  Diana has several special people in her world, but one of her favorites is Jenny Payne, our next- door neighbor when she was little and a lifelong friend.  They are sidekicks and call themselves Thelma and Louise when they hang out together and have made road trips through the years. 

Erin and Diana lived life alongside each other and constantly commented on what the other one was doing in ways that each alerted the other she was noticed and was being watched carefully.  To Erin, these comments were comical and delivered often knowing a haphazard phrase or statement about something in the present didn’t have to be accurate to provoke a correction from Diana in response.  Diana was always a caregiver and was mostly patient in delivering reminders to Erin of what she should be doing or saying in a situation.  She was always amazingly patient with Erin during tantrums in the car rides home after school through the years where a day of sensory overload could provoke Erin and where that 8-minute ride was the longest ever!   We sometimes had to put blankets or even an object like a suitcase between them as a barrier during some seasons where Erin would cycle into flailing a leg or arm in her direction.  Diana would help soothe her with kind words and reminders that she was OK and would be home soon as I found a song on the radio or searched for her favorite song on a CD while driving.

Erin knew how much Diana loved her.   If Diana went somewhere without her, Erin asked when she was coming home until she did finally come through the door.  I would explain to Diana on the phone when Erin was really sick in the hospital that she could not talk back to her but to tell Erin about what was going on at school and about what she was doing.  I’d put the phone by Erin’s ear and wait.  Every once in awhile I’d think she was finished talking and move the phone back to my ear only to hear her telling Erin about choir class or about a friend at school.  After returning home, Diana was the one who would hold Erin’s hand and say, “Look at my eyes, Erin,” and get close to her face when I had to give Erin a shot. And in the final evening of her life and not realizing at the time what was about to happen, I wondered why Erin asked twice, “Where’s Diana?” soon before she passed.

There are many more details in this story of two sisters that are recounted with a giggle and sometimes a tear from the one left behind.  Our parenting of them has been far from perfect and has not always involved preplanning before pioneering the waters of facing new challenges.  Yet, the lives of two complex girls whose histories connected them because of their genetics were woven together under our roof in a home where every shingle was attached as we figured out something new about them.  Those “somethings” strengthened our foundation as a family, impacted us, and glued us more tightly together as we raised young women who grew into themselves by their own choosing with support and direction as they (and we) needed it from those in our village.

For the sisters and to the village, we will forever be grateful.

My mother still sends handwritten notes in cursive to me, my siblings, and my children about the day we were born and circumstances surrounding our births.  Details serve as reminders of the extent of anticipation, such as the night my children’s grandparents were watching Cheers at 9:00 P.M. in the waiting room of Martha Jefferson Hospital when our firstborn, Daniel, who was the first grandchild in both of our families, was born on Valentine’s Day in 1985.  My mom includes in the note how my father-in-law, Jack, was nonchalantly reading the newspaper while she paced the floor.  She stopped to shake the paper and say, “How can you just sit there and read the paper?”  I am reminded in phone calls the morning of my birthday that the day I was born was a significant day engrained in her memory.  It was all about me.  I’ve heard the details many times along with accounts in the same conversation about the births of my brother and sister.  For instance, on the day my brother was born the Redskins were playing, and she had to wait to go to the hospital until my dad had the final score.

I wonder if celebrating “THE DAY” we were born is even more significant for the mom (and dad) than for the child.  For you, THE CHILD, it is about the party, the presents, the activity of the event, and the thrill of having a day to celebrate “you” in the present.  For the mom (and dad), it’s about the day life changed forever because of your entrance.   

Life changed the day Erin was born.

Like my mother, I remember the details about the births of each of my four children as well as the day we stood in a Ukrainian courtroom to become Diana’s parents.  I remember the circumstances surrounding labor and delivery.  They were different each time.  I remember the weights of my babies (not the heights), and the times they were born.  I call my boys and tell them the details.  I say, like my mom, “I remember the day you were born.”  I remind them of the exact time that day they will turn the next year older.  I remind them life is better because of their entrance and all that they mean and bring to our lives and to the lives of others.  I remind them of their significance.  I always tear up a bit thinking about who they are now and am overwhelmed in the moment by how dearly I love them.

The day Erin was born was all that and more. 

We went to the Martha Jefferson Hospital in Charlottesville early on November 12, 1998. We passed the school buses unloading at Fluvanna Middle School, where I worked, on Route 15. As with two of her older brothers, Erin was born within a few of hours after our arrival to the hospital. She looked like our other children (who look like Rob) but had a significant tongue thrust that was not at all like our other children. We held her briefly but she needed help breathing. The doctor took her away and did not return for what seemed like a long time. When he did, he took my hand and shared with us his unofficial diagnosis of Down syndrome. He also said a cardiologist was coming to evaluate her.

There was more to report to our families than our 8 lb. baby girl had arrived at 10:20 A.M. on November 12, 1998.

These were the days when babies didn’t room-in full-time with the moms.  So, late that first night when the hallway was quiet, Rob and I heard the metal wheels of the basinets rolling past our room without stopping to deliver Erin.  We got up and went to see her in an isolated part of the nursery where she was hooked up to monitors.  She turned her head toward us when she heard our voices and looked in our eyes when we sang a John Denver song to her as if she’d heard it before.  She knew us.  She was ours. 

We’d had a consult earlier that day with a cardiologist who talked about heart surgery.  She explained Erin would leave the hospital on heart meds and used terms like, “medically fragile”.  Rob left the hospital for awhile to walk and process the news we were given.  He ended up on Charlottesville’s Downtown Mall in the Mud House coffee shop where there was one computer with internet on a back table for public use.  He spent part of the afternoon researching Down syndrome and returned a few hours later full of facts to share with me about what to expect at each phase of Erin’s life.  Throughout Erin’s life, I’ve often thought about the advice my doctor told me that day about parenting a child with Down syndrome.  He simply said, “Just be her mother.”  I’ve understood that to mean to just care for her, learn about her, grow with her, and love her more with each passing day, month, year in the same way I do with my other children.

Each passing year has been marked by a birthday carefully calculated weeks in advance.  Each year was very much the same and often had the same types of gifts, including tents…tents that attached to beds, pup tents in the yard, tents filled with blankets in bedrooms and family rooms, a “must have” purple tent (found my MeeMaw after an exhaustive search), tents to sleep in and tents in which to retreat for cuddling and calming down.  Along with tents came Disney sleeping bags and princess blankets, pink and purple flashlights, disco balls and other night lights that would shine stars on the ceiling of her room, microphones attached to karaoke machines, CDs, and CD players. She would tape pictures of young teen idols on her bedroom walls from magazines and perform their songs with the rolling lights of the disco balls circulating across her ceiling to the tunes of Hannah Montana and One Direction.

 The most special part of Erin’s birthday was the reveal of the chocolate cake lit with candles burning and lights turned out for “the birthday song”, which was sung slowly and often twice just because she loved it so much and we loved feeling her joy as we sang to her.

As challenging as life could be with Erin, and honestly, as challenging as life could be in general, the joy Erin felt and exuded in the most typical experiences of everyday life equaled and often exceeded any measure of frustration we attached to the same typical experiences that we carried into our home.  She had a convincing way of diverting our attention to something worth celebrating in the moment…a cartoon clip, a picture she colored and proudly waved in our faces, just waving in our faces and laughing, pressing a funny face close to ours, singing, or sharing an Erin “joke”.  Being ridiculous for a few minutes with Erin in the moment always lightened the angst in our load.

And in the ways Erin stayed the same year after year, we found ourselves changing.  Instead of Erin finding us as we wandered home each day and rallying for our attention with her jokes or silly songs, we looked for her and prompted her to tell them and to sing to us and with us.  Without even realizing it, we sought out her levity of spirit, would snicker at something she’d say, and go find another family member to share it with.  We still do that now when we get together as a family seeking the part of her that added something special to each of us and made us more able to keep perspective.  Those silly times we talk about bring laughter and the same super special feeling she brought to our hearts in the moment.

So, today, I’ve thought about the things Erin loved about birthdays–the cake, the candles, the song, the lights dancing on the ceiling—and I’ve felt that special feeling for the girl who brought joy into our lives and reminded us to laugh at the ordinary.

The best part of Erin’s birthday was to be a part of it. 

 I am really grateful to be in a job I love.  As probably the oldest junior faculty member on campus, I am awarded the opportunity to step out of my comfort zone and grow alongside younger, older, and more experienced colleagues I truly respect for their knowledge and rigor.  I am slowly finding my place as well within my corner office where I have listened daily over the past two years to new construction erected from frameworks of sturdy metal that are continuing to evolve into restored dormitories next to our education building.  This is a place where my old soul has been under construction as well.  I’ve always told my students — whether they were 8^th graders or college students — that they can choose to use whatever happens to them in life to make them stronger and better.  In some way, life will prepare them for what they are meant to do next.  This includes every job, organization, position held, service opportunity, personal experience, and special interest.

I learned to play guitar when I was 13. I attended youth group Sunday evening fellowships at my church where there were college students leading music. I’d watch them play and ask them to show me different picks and chord progressions. I’d go home and practice. Music of the 60s/70s moved me and has returned to comfort me. My signature song these past few years has been “Here Comes the Sun”. When Erin was sick and we lived on campus at Fork Union, I’d fill trash bags each morning with plastic and break down medical supply boxes, taking them outside before the maintenance truck came down our lane to pick up the trash. I would watch the sun rise. The night she died, I asked my close friends who came to the hospital to bring Diana to go to my house and get some of the medical equipment out of Erin and Diana’s room. I didn’t want to see it. The first and foremost objective I had was to get everything returned to the proper company and service provider. It was methodical. I made calls and calm requests informing them she had passed. Trucks came quickly within days to pick up boxes and equipment without conversation. Drivers, pharmacists outside our community, and company reps with whom I’d converse on the phone on a regular basis and who were lifelines for my daughter became people I would never see or talk to again. I was numb. I combed Belk stores in Farmville and Charlottesville for a pink sweater to wear to the memorial service, because Rob said we would all wear something pink. I briefly stopped in a jewelry store in Fashion Square Mall and bought a heart necklace in sinus rhythm — a sign of life that I had watched on hospital monitors through the years. I told the sales clerk I didn’t need a box and put it around my neck. It was always about her heart, and I’ve since continued to feel her near my heart as I put it on each morning. Rob planned the service, which was what he needed to do and would do in ways we all knew would perfectly capture all we cherished about our girl while I drove back and forth to Longwood to teach my classes. I clung to my routine and drove through the empty space of Buckingham between Farmville and Fork Union. And, for months afterwards, I’d still go out in the early mornings in Fork Union to watch the sun rise.

I saw some beautiful sunrises.  At that moment when the sun would first appear, I’d imagine it as a wink from Erin.  In life, Erin’s winks were not always sweet ones.  They were hard bats of the eyes together — showing her disapproval or obstinance.  I look for signs in small things in life that shed light on a greater meaning.  There was never any doubt about the meaning of a hard wink from Erin.  It meant she was stuck and was determined to stay stuck.  She dared you with her eyes to challenge her and would look at you twice to see if you’d try.  I’d sit in IEP meetings and hear about Erin being stuck.  It meant teachers and therapists were also stuck and were looking to me for answers.  My suggestions were not ones they were expecting.  I once read a book about children with Down syndrome getting stuck in a repetitive behavior/speech cycle like a broken record and needing to break the chain or hit the reset button.  I’d suggest changing their personas to talk like Curious George, a cat, or Alvin the Chipmunk.  It worked at home like a reset button.  Rob was frequently “Dave” calling Erin to the next location or activity of the evening.  Erin’s fixed gaze would immediately soften.  She would perk up and call back as “Alvin” would in one of multiple episodes she had watched many times. Erin cycled through different characters of her favorite cartoons.  Our boys were masters of “Curious George” monkey impersonations they inserted in conversation with Erin.  Diana was always the literal thinker saying, “Oh, Erin!” shaking her head and sighing.

“The cat” was usually a last resort. It was not a cartoon cat character.  It was just Erin.  One year I included Erin’s self-contained class in my Robin Hood musical with 8^th grade English students.  I loved that play because I could literally bring the woods behind Fluvanna Middle School to the stage along with barrels, ropes, and cow bells from “The Barn” in Palmyra, which sold all sorts of odds and ends.  I’d jump on rocks in the “river” with large sticks chewed clean of bark by beavers on the riverbed teaching students how to joust in mock battles without hurting each other.  Even my students understood how to get Erin unstuck and moving behind stage.  I’ll never forget one of my J.V. football players reminding another student to “Be the cat” to get her to move forward and sing with the group.  They knew it worked every time.  For months and years after that play, Erin would, on occasion, put on her peasant costume from the closet, insert her CD in her CD player, sing all the songs from the musical, and run to the stairwell and yell with passion, “Run, Robin, Run!”  as the grand finale.

The wink of the sun and the display of color that follows in the sky has always been a warm and wonderful reminder of my daughter.  “Here Comes the Sun”, a reminder of hope and a promise of a smile that is returning, ice that is slowly melting, feeling like myself again…it’s alright.  It’s about what I’m doing now that gives me purpose, that brings light to my life, and that reminds me there is more to do.

There is a “next”. Here comes the sun.

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.