Waking up early the next morning, we began what would be a daily routine.  We faced it with uncertainty, not knowing how long this road would be, but knowing it must be traveled.  For ten long and terrifying days, our routine was much the same.  We would wake fairly early in the morning, approximately 6:00 a.m.  Then we would throw on clothes, run to the CVICU, and look in on our sleeping daughter.  To see her rhythmic breathing and watch the steady monitors gave us the strength we needed to begin our day.  We would receive a report from the nurse telling us how the night was for her.  Only then would we go back to our room and shower and dress. We would gulp a hurried breakfast before returning to the ICU to face another day of battle.  Squeezing every possible minute out of the day, we would stay until past the last visiting time, and go in to see her one last time.  Our last words to the nurse every night were “If she asks for us, call us and we will be here in less than ten minutes”.  Then we would drag ourselves down the darkening hallways, and off to our room. 

The waiting room outside of the CVICU was our home away from home.   Every detail in the paintings on the textured walls, every hard chair, and every shiny board in the wooden floor we got to know intimately.  That is where visitors found us, and Doctors consulted with us.  We jumped every time the phone rang out shrilly, answering in both dread and anticipation.  We would snag the Dr whenever he walked through, begging for a report. The other families that shared this small room became our confidantes.  Their loved ones became familiar names to us, and we listened eagerly when they received updates from their Doctor.  We sat together and shared stories of our loved ones, and compared medical procedures and conditions.  We grieved together when bad news was delivered, and celebrated victories together.  We shared in birthday celebrations, and we restrained ourselves from giving huge hugs to them when they made the big move from the CVICU to “the floor”.   Gifts of snacks were shared with anyone there.  Small children were played with and admired by the whole room.  We were one big temporary family.

That first morning, we were able get a room at the Ronald McDonald House directly across the street from the hospital.  This little slice of heaven on earth was a perfect place.  Thoughtful, considerate, angels on earth had anticipated every physical and emotional need and provided it there.  For the small price of only $10 per night, we were able to stay within walking distance, and be at her side at a moments notice.  Since all meals were provided for, and a laundry room was in the building, we never had to leave the area if we didn’t want to.  Internet access was available, so we were able to send and receive e-mails.  I would post hopeful updates on my Mommies Board every few days.  This connection helped keep me from drowning in fear and terror. 

Our daily reports from the Doctor were usually very frightening. Sometimes the best news he could give was “She is still alive today”.  There was a constant threat of immanent death hanging over her.  She had a tear in her heart, and we were told that if it tore any further, she would die instantly and nothing could be done to save her.  There was an aneurysm that would kill her instantly if it burst.  There was a huge blood clot sitting in the section of her heart that was no longer working.  If any portion of that blood clot were to break free, it could cause instant death, a stroke, or any number of other complications.  During this time, the Doctors were conferring daily, trying to figure out what had happened, and coming up with new hypothesis about it.  Twice Dr. Baldwin told us that a heart had been offered and turned down.  We had no choice but to trust the life of our beautiful daughter to this huge soft-spoken, kindly man.  I begged him, “Please choose a heart for her like you would for your own daughter.”  He looked at me with a sad smile and said with great conviction, “There is no question about that”.    He ordered daily echocardiograms, and many, many tests.  She was hovered over by a team of Doctors watching for the slightest sign that she was in danger.   Her other organs were carefully monitored for any problems.  There was a left ventricular assist device (LVAD) held in reserve for her to place inside her at the smallest indication of further deterioration.  Essentially, it was an artificial heart that would keep her heart beating temporarily.  Every day was a waiting game.  The Doctors were hoping to hold out and keep her alive long enough for a heart to become available without having to rely on the LVAD. 

One of the tests that she received daily was an echocardiogram.  After seeing the same technicians over and over again, they became familiar faces and names to us.  They were part of the team.  The days that Jerry worked, he was the tech that gave her echocardiogram.  Sometimes I was present, more often, I was not.  One day, I stood and watched as Jerry took the pre-warmed gel, and spread it on her chest.  Then he gently applied the wand and swooped it over her chest.  Jerry, Dr. Baldwin and I watched the screen.  I could see the moving green blob that I assumed was her heart.  Dr. Baldwin pointed to different spots and said, “There is the tear, there is the clot, right here is the aorta, and this area here is not functioning”.  I could see some movement on the screen and must have appeared confused.  Dr. Baldwin turned and left the room, and I stared over the bed at Jerry.  Jerry looked at me, and motioned me over to him.  He said, “Give me your hand”.  So I placed my hand in his, in a handshake position.  He put his other hand over mine and said, “This is what her heart is doing”, as he barely moved his hand – much like a very limp handshake.  Then he said, “This is what her heart is supposed to be doing” as he squeezed my hand very tightly almost like a handshake that is so hearty it is on the verge of hurting.  Now Dr. Baldwin’s words were very clear and frightening to me.

The respiratory therapist that came in daily became another very familiar face to us.  John took a special interest in Charis, as he had a daughter that was almost the same age.  He would spend time in the waiting room visiting with us, and getting to know us.  With tears brimming in his eyes, and a choked voice he told us, “I will be at that girl’s graduation, and will dance at her wedding”.  His daughter heard all about Charis, and asked to visit.  When John brought her for a visit, she brought an orange curtain to hang in place of the institutional boring striped print.  She had spent her own time and money sewing it and putting the curtain rings in.  She also gave Charis an orange bag.  After that day, she demanded daily reports from her Dad.  The days that John was assigned to another department, he would always take time to come check on his favorite patient.

Charis was conscious and communicating with us during her hospital stay.   She was kept about halfway sedated so she wouldn’t fight the respirator, to control her pain, and keep her quiet and still.  She would do her best to use some rudimentary sign language, and usually I was the one that understood it best.  When the sign language failed, she would write notes.  This would tire her out quickly, so she would use as few words as possible.  Often in the morning, I would look over the notes she had written to the nurses at night to get an idea what went on during our hours apart.  Laying flat on her back, with a tube down her throat, she couldn’t raise her head, so she wrote blindly with the tablet lying on her stomach.  Though barely readable sometimes, the notes became a precious connection to the Charis inside the pale, thin body lying there.  Grandpa could see her struggle and the repetition of certain phrases.  With his typical “I’ll fix it” attitude, he produced a laminated card of those often repeated phrases so she could point to what she wanted without having to write it out over and over.  One day she wrote “Ur my fav g’pa” (you’re my favorite, grandpa), he took the piece of paper and placed it in a frame.  That framed note, scribbled in orange marker is still displayed in a prominent place in Grandpa’s office.  She wanted a bath very badly, and complained that her hair was dirty.  Drew went out and found a beauty supply store, and bought a bottle of “rinse less shampoo”, simply lather it in, and then use a towel on it.  Every few days, I would “wash” her hair, then using spray in conditioner; I would comb it out for her.  One of her night nurses French braided her hair one night, and we came in to the sight of a beautiful smiling princess the next morning.  I tried to keep it French braided after that to keep her hair as neat as possible while being confined to bed.  She would request her makeup and I would try my best to apply it for her.  She would gaze in a mirror and smile and feebly nod, meaning, “You did fine, Mom”.

            The Doctors would gather around her bed, watching the echocardiogram together, and then discuss her case, including her in their discussions, and explaining her condition to her.  She had been told that she needed a transplant, and would frequently ask us when she would get it.  Those moments were difficult for me to face and formulate an honest answer for her.  I would look her in the eye and say “Honey, you know where the heart comes from, don’t you?”  She would nod, and I would continue with, “then you know what has to happen first.”  She would again nod.  I had my personal struggle with that, too.  I knew that in order for my precious child to live, someone else was going to loose their equally precious child.  It was too horrifying and sad to even think of that, so I couldn’t bring myself to pray for a heart for her.  I knew I needed to pray, so I prayed that God would be with “a family somewhere that was living their last days and hours together”.  I would cry with despair thinking of that family.  I ached for another Mother somewhere that would loose her child and then give a loving gift to an unknown child. 

Charis hated the ventilator in her throat.  She continually watched what percentage of oxygen she was on, and would proudly report to us when it was lowered.  Every day she would beg her respiratory therapist to remove it, and then she would tackle the pulmonary Doctor and ask him.  He was such a compassionate man that he couldn’t bring himself to tell her that the tube couldn’t be removed until after her transplant.  He would try every day to keep putting off the decision, and would say, “Maybe tomorrow, we can remove it”, and then the next day, would tell her the same thing.  She got quite upset with this tactic, and one day wrote “Dr. Evil keeps saying ‘yes, no - yes, no”.  To this day, we still refer to him affectionately as “Dr. Evil”. 

One morning we received a phone call at 4:00, saying that she had pulled her tube out in her sleep.  The nurse told us Charis was agitated and wanted to see us.  We jumped up and ran across the street.  She could barely whisper, and was frightened and upset.  She had realized how much she had relied on the respirator and was asking for it to be put back in.  Not wanting to put her through any unnecessary procedures, they were trying to help her breathe by herself using an oxygen mask.  When that didn’t help enough, they also tried a C-PAP machine, and that still didn’t work.  They planned to put her tube back in later that morning.  So I sat beside her bed, holding her hand and trying to comfort her.  She was in pain, frightened, having trouble breathing, and was constantly commanding the nurses to do it now.  I leaned close to her and asked her if there was anything she wanted to talk about while she could still talk.  In her tortured, raspy voice, she whispered to me “Momma, I love you so much”.  I choked back tears as I whispered back “I know, hon. I love you too”.  Then she took a breath and said, “Momma, I’m afraid to die.”  No Mother is ever prepared to have a wise and comforting answer to a statement like that from their child.  I prayed a silent prayer for the right answer, paused and said, “I’m afraid to die, too.  But I’m not afraid of what happens after that.  You do know where you’re going when you die?  Don’t you?”  She shook her head and said, “I’ve done bad things, Mom”.  A tear escaped my eye and silently rolled down my cheek.  I tried to smile, I tried to be brave and strong, I tried to be wise, and I tried to let God give me the right answers.  My head was resting on the side of her bed, our faces only 6 inches apart as we whispered like two schoolgirls telling secrets.  I whispered to her “Honey, we’ve all done bad things.  To God, all sins are equal.  Someone that has stolen something is just as bad as someone that has murdered.  Sin is sin and that is what keeps us from God.”  She nodded and said, “I know Momma.”  I stayed by her bedside, sometimes whispering with her, but mostly just holding her hand and comforting her until they came to re-tube her. 

Visitors were an important part of our days.  They provided a time where we could reconnect with our real lives.  It gave us the encouragement to keep going, and assured us that many people cared and were praying.   Our minister, Scott came several times, and we always clung to him for support.  Each person that came to see us holds a special place in my heart.  I would look up and see a familiar face standing there, and I would jump up and throw my arms around them.  More than one person walked away with a wet shoulder from me crying in their arms.  I had visits from co-workers bearing presents of more phone cards, snacks, drinks, money and gift certificates.  The physical education department brought her a huge bucket of various games and things to keep her occupied. Rhonda tried to bring Grandpa, the baby, and Hannah up every few days.  Jared came with Leeah whenever he could, full of concern for his sister.  Cody was there as often as possible, almost every day.  He even spent several nights with us.  Almost everyone that came knew of her love for monkeys and anything orange.  Soon her room filled up with all sorts of monkeys and various orange things.  I called her closest friends from school and asked them to come see her.  When they would arrive, I would sit down with them and give them a complete and honest report on her condition.  I told them honestly that she was in very grave condition and may not make it.  Then I would describe all the machines to them, and warn them that she couldn’t talk, but that she could write notes.  I tried to allow them as much time as possible to visit with her.  My own friends came to see me whenever possible.  One friend took Drew and I out to dinner, and we sat in the restaurant with our cell phones on the table, and talked about Charis the entire time.  We weren’t the best company, but we needed the time away.  Distant family members that I usually only see once a year at the family reunion showed up to offer their support.   The online Mommies group that I belong to called me twice a day and kept an online update going.  The concern shown by that group of caring women was indescribable.  They sent cards, money, and gifts.  One that lived in the area even came to visit.  The entire group of women organized an email and letter writing campaign to my cell phone carrier, successfully convincing them to give me a month of free service.  Caring and concerned people surrounded us, yet we felt so terribly alone.

            When Drew and I got married, he told me he was marrying a family.  He insisted that the three children that I was bringing into our marriage be involved in the wedding.  He even presented each of the children with an engraved gold bracelet.  He took on the kids as his own.  His face would light up with a smile when one of them would call him Dad, and he would bristle when he was referred to as stepfather.  He never introduced the children as his stepchildren; they were always “my daughter” or “my son”.   He cried many tears over Charis, and was devastated with her grim prognosis.  She wasn’t part of his flesh and blood, but more importantly was a part of his soul.  The kids were accepted into the Rutkowski family as genuine members of the family, receiving birthday cards and Christmas gifts from them.    Two of Drew’s brothers made trips on the weekends to come be with us, one of them came every weekend.  Each of his six brothers’ and sister’s called several times during the hospital stay.   Drew’s Mom called almost every day.  The love and support from the entire family proved unequivocally that there is no such thing as stepchildren in the Rutkowski family.

            Beginning with that first night, many people were praying earnestly for her.  As the days passed, I would receive phone calls and emails, with more reports of prayer given to me.  People would tell me that they had passed on the prayer request to a parent’s church, or a friend’s church.  Soon we began to realize that people from the east coast to the west coast, from the south to the north were praying for her.  Then before long, we received reports of people in other countries that were praying for her.  A brother in-law of grandpa’s in Hawaii, a son-in-law in a Middle Eastern country, people on my Mommies board from Australia, someone in France.  The reports poured in.   I thought of how often I had offered to people “I will pray for you, or your child”, and how very little thought I gave to that as I would offer up a prayer in their behalf.  Each time I received a report of people praying, I would answer with a very genuine, “Thank you SO much, and please don’t stop!”  We strongly believed that the hand of God was holding our daughter and keeping her alive.  We relied on those prayers, and had complete faith that God was listening to them.  Personally, the prayers kept us going, giving us the strength to face another long and uncertain day.  People often mentioned to me that they were impressed with how strong I seemed to be.  God was what was holding me up and helping me to be strong.  Inside, I was numb and going through the motions of trekking from hospital to Ronald McDonald House and back to the hospital again. 

The emotional stress was beginning to take a toll on us.  People remarked how drawn and tired we looked.  I would usually have one good cry every day.  The Tuesday morning following her admission to St. Paul, I was struggling to maintain my composure as I left her sleeping in her room.  One of her favorite nurses, Jackie, was assigned to her that day, and she noticed my glimmering eyes.  Placing her hand on my arm gently, she asked “Are you ok?”  I tried to be brave, smile and shake it off, but it only caused the tears to well up and spill over.  Jackie kindly took my upper arm and steered me behind the nurse’s station, pulled a rolling chair over and motioned for me to sit.   Pulling up a similar chair, she sat facing me, leaned over and said, “Tell me what is wrong”.  Like a small child, I shrugged and whispered, “I’m just so scared.”  “Robyn, what are you scared about?”  I stared at her, not believing that she didn’t know why I was frightened.  I swallowed the lump in my throat, and mumbled, “Well, I’m afraid she will die.”  She smiled a comforting smile and said, “Robyn, this is one of the best transplant units in the Country.  Every single one of us is doing all we can to save her life.  We all want to see her live.  We are doing our best.”  Nodding, I said, “I know that.”  Jackie continued with, “You need some time for yourself; you need to get away from here for a few hours.  Go to Wal-Mart and buy her a CD player and a CD”.  I realized that Jackie knew exactly what I was frightened of, and was expertly leading me, and encouraging me to trust the care of my daughter to them.  She was an angel in disguise that day.   

     One day, Leeah and Rich pulled Drew and me off to a private corner.  They proceeded to inform us that they had seen a paper where Charis had written to a nurse “Am I going to die?”  I immediately had a mental picture of my poor, frail daughter lying in her hospital bed.  She is fighting for her life, trying so hard to communicate with those around her, in pain and drugged up, only half understanding what kind of condition she is in.  I could imagine the terror she was feeling, the emptiness and loneliness.  The thought that kept rising to the surface of her mind was “Am I going to die?”  I collapsed against Drew, my whole body grieving for my daughter’s state of mind.  I curled up on the cold, hard tile floor and sobbed.  My husband knelt beside me with his hand on my back, knowing I needed this.  Once I started crying, I couldn’t stop.  I sat curled on the floor sobbing and crying in misery.  The only thing that stopped me was Rhonda walking over and saying, “Charis is asking for her Mom.”  I looked up in horror; “I can’t go see her like this!”   Drew hugged me and said, “Go wash your face, get hold of yourself, and go see her.  She needs you.” 

            Doctor Baldwin had told us that most hearts become available on weekends. We looked forward to the weekends, yet dreaded them for that reason.  The first weekend that we were perched outside the CVICU in the waiting room, we were filled with hope and anticipation.  The second week dragged on, and each day her grip on life seemed more tenuous.  Charis was getting so weak that she would ask us to move her head for her.  When I helped bathe her, it took a conscious effort not to gasp and grimace when we rolled her over and I could see every bone in her back, shoulders and hips poking at the tight, pale skin. Heading into a second weekend, we were hopeful that something would happen.  We made sure our cell phones were charged and on at all times and even carried them into the bathroom with us.  Saturday was passing into evening, and we were feeling quite frustrated and defeated.  No call had come in, and she was growing thinner and weaker every day.  She continually asked the nurses for more sedation so she could sleep.  Drew and I wondered out loud how long she could live like that.  We made plans to have a serious talk with the Doctor on Monday and press for some hard answers.  We needed to know what to expect with her, the waiting and uncertainty was tearing us up inside.  I was becoming more and more convinced that she was not going to make it.  A sense of hopelessness was becoming imbedded in my heart.  In a hushed and ashamed voice, I whispered to Drew “I shouldn’t say this, because I’m afraid that saying it will make it happen.  But, I think we could handle ‘it’ better than a lot of the families here” He set his mouth in a grim line and said “I know baby, I’ve thought that too.”   We prayed together that God would please take over and move things along in whichever direction He was going to take.   Realizing that the act of uttering a prayer like that could be the act of asking God to take her; we were as prepared for that as a parent can be.  We were tired of seeing her suffer, tired of waiting and tired of fighting this battle.  We were giving her to God.  We went to bed on Saturday night with heavy hearts, feeling certain that we only had a few days left with our daughter.