Gabriel

This family lived in a small trailer park. A trailer park that most people drive right by without even noticing. Tucked up in a small piece of land off the frontage road along highway 82, it’s maybe 15 trailers built practically on top of the other.

The window above the kitchen sink shows the side of the neighboring trailer appearing less than a foot away. That’s how close these homes are to one another. No yards, a steep dirt lane, rutted and gnarled from runoff and being driven on by cars going up between the two rows of single-wide trailers to a dead end. There are too many cars, some that look as though they have not moved in years. An abundance of feral cats scatter under cars and trailers as I walk up from the frontage road where I felt it was safest to park. 

The road is icy. There is no way snow removal can happen, it’s simply too tight. The snow gets packed and repacked by those who drive and walk up and down this narrow lane.

It is easy and admittedly embarrassing to reach conclusions, make judgments and form opinions about the people who live here. There are discarded and functioning refrigerators living outside homes and there are makeshift shelters that look as though they probably house additional members of a community that lives pretty much under the radar screen of the rest of us.

I knock on the door of a brightly painted trailer. I am greeted by a young woman with a sad smile. She is on the phone speaking in rapid Spanish and I wait while she finishes. I have stepped just inside in order to be able to close the door to the Winter cold. The trailer is narrow with bare plywood floors, but it is warm and neat and tidy. There is a small table against a wall in the open kitchen with three straight-back chairs. Mary, the young woman who opened the door is the mother of our new patient. Mary’s mom, who speaks no English, is in front of the gas stove roasting green chilies over an open flame. A large pot of boiling beans on the back burner, she is also frying tortillas over the flame as she roasts the chilis. The smells are mesmerizing. Watching the skill with which she manages all of this with bare hands is also mesmerizing. 

She turns away from the stove, wipes her hands on the front of her apron and takes both my hands in hers. She is very small, weathered and gentle. She looks me in the eye with intensity and without speaking a word, she says through those eyes, “Thank you so much for coming. We are lost and scared. We welcome you and we hope you can help us.” And then she turns back to her work. Mary’s two older boys who are 3 and 5 come running making lots of noise, trying to get her attention while being very shy about a stranger in the house.

Impressions from that first meeting include the memory of how difficult it was to find words to describe the agony this beautiful young mom was experiencing around the idea of having to say “good-bye” to her youngest son, an angelic 18 month old. Once we were able to settle the two older boys, she spoke to me in perfect English while trying to express the disconnect she was feeling between herself and the rest of the adults in their home around what was happening with this youngest child, who I will call Gabriel. She knew she needed permission to “be sad” without having someone take that away from her. Her husband who was not in the home on that first visit, was not comfortable with Mary's sorrow and would chide her and sometimes become angry with her when she cried. She said even her mother did not know how to allow her to just be sad. 

I told her she could be sad with me as often and as deeply as she needed to be and hopefully I was able as well to help her understand why her mom and her husband were so reluctant, even though I didn't know for sure. So, she cried with me that first day. She trusted, for whatever reason, that I would be true to my word. That I would not try to take away any of her sadness. Through her tears she described her thoughts about the moment of death and how the anticipation of it terrified her, that the idea of someone taking her son from her arms and removing him from their home terrified her. We sat with that one for a bit, my silence and soft murmurings of understanding seemed to be all she needed. She described wrestling with her faith, challenging a God who would do this. She told me how she knew a decision had to be made about burial vs cremation and that her struggle was in not being able to think about putting him in the cold ground after he died. 

She couldn't imagine doing that and yet her religious background did not bless cremations. Which made her even angrier at a God she was already at odds with. And then she said she agonized with the question every parent of a terminally ill child asks themselves, “Is there something else we should be doing, some stone we have left unturned in our search for a cure?” 

This young mom of three boys was being forced to face life issues and to wrestle with age old questions far too soon in her own life. And yet, here we were, sitting together, two women weeping over the injustices life sometimes brings our way.

Mary's son was suffering a very rare and seldom seen form of Tsaysachs disease, a neurological condition for which there is no cure. Another of the really cruel and difficult things about this disease is that it doesn’t present immediately. It comes out of the blue into the lives of children who appear to be completely normal and healthy. Gabriel was a normally developing baby until he was about 10months old, when he started exhibiting balance issues, like falling over to the side when sitting up, as though he couldn't hold himself in a sitting position. And then it took a very long time and many trips to Children's hospital in Denver, a 3 hour drive away, for the diagnosis to finally be made. Their last trip there was the one when they were told there was nothing more that could be done for him and they should go home and call hospice. Gabriel had never learned to speak, he was blind by that time and had no motor control at all. He was fed through a feeding tube and was on oxygen 24/7. And, he was always in someones arms.

I don't remember exactly the date we first met them. I remember that it was cold. I'm guessing it was December but might have been January or even November. In August he would have turned 2. 

But, instead, he died quietly, peacefully and hopefully in no pain, in his mother’s arms a little before 5AM on a Sunday morning in late February.

Present in the home when I arrived around 7AM were both his parents, all 4 grandparents, one great-grand father, one aunt, 2 uncles, his two older brothers and 2 other individuals who were renting a small makeshift room in the back of the trailer and who were now part of this journey as a result. I was led to the back of the home where I found Mary and the other women in the family all gathered around Gabriel's tiny lifeless body. He had been bathed and dressed by them in a little tuxedo. His tiny hands were bound by white satin ribbon as though in prayer and were on his chest.

The women were mostly kneeling alongside the cot Mary and Gabriel had shared for the weeks he had been home. All of them praying in their native Spanish. The two older boys shared a bed in the same room and Mary and her husband shared another bed in that room. But a cot had been brought in and set up and that is where Mary had been every night since coming home the last time. There were IV poles and oxygen concentrators, there was evidence of disease everywhere you looked in that room, but if you just looked at Gabriel, all you saw was love in glorious radiance. And the pain of loss.

I knelt by Mary and she wept in my arms. I whispered to her that we had talked often about this moment and wondered what she and her husband felt they needed right now. And she answered me, with “Time”. She said, “We need more time.” I said very quietly that I would step outside and call the funeral director to find out how much time would be ok. Thomas Walton was who answered. I was relieved because Thomas and I had worked side by side on many occasions and had a great deal of mutual respect for one another. Thomas told me that 12 hours was about all he felt comfortable with. That seemed to satisfy the family and we agreed that I would return with the funeral director at 7PM.

When I arrived, 12 hours later, there were cars everywhere along the frontage road and well over 50 people inside the trailer and many more crowded around outside. 

Thomas waited outside after making his way through the throngs with the funeral van and I made my way to the back where I knew I would find Mary and Gabriel. 

I asked Mary gently who would carry Gabriel from the home and a hand tapped my shoulder and a man said, “I. I will carry my son.” 

I had never met Mary's husband but as I watched him tenderly scoop his baby off the cot and then wrap his wife in his free arm my heart melted.

This young father carried his son's small body through the trailer to the waiting van, and as we navigated our way through the home and then through the crowd outside almost every single person he passed, kissed the forehead of that precious baby.

When we reached the van, Thomas had removed the gurney from the back and had it ready to place Gabriel on but his father said “No. I will hold him.” Thomas looked at me and I looked back at him, pleading with my eyes to grant the request. He said, “Well, it not usually done but it's OK. You can sit up front with me and hold your baby.” He helped them in and buckled the seatbelt Gabriel and his father and put the gurney back in the van. I walked to my car to follow and as I did I saw a stream of cars following, like a proper funeral procession, on this cold February night all the way to town and then through town to the funeral home. When I arrived, behind Thomas, he had to open the garage to back the van into the morgue area of the funeral home. In hindsight I believe we both wish we would have opened the main doors, allowing all of them entry to the nice lobby and taken Gabriel from them there. But as it was we were in the garage where the doors to the morgue are. Doors Thomas was not about to open while family were still present. When Gabriel's father walked back to the back of the van where the gurney was, one of Gabriel's brothers, the 5 year old, had spread his own fleece Spiderman blanket on the gurney, explaining that Gabriel had always liked it. One of the grandmothers had a crucifix that she placed in Gabriel's hands as his father laid him down with his head on a small white satin pillow.

Thomas quietly confided in me that he could not allow the family to go any further than this with the gurney and could I possibly help them understand that it was time to say goodbye. I don't believe I even need to try to describe the gut wrench that was but somehow they managed to understand and I walked out to the waiting procession of cars to see them off. 

Our involvement with this family was intense on all levels. There were many people who made arrangements for all the equipment necessary for him to come home that final time. It was our first, and for the tenure of my years with hospice, our only, pediatric hospice case. And their nurse and myself were the only ones to meet them.

The following Monday I sat with the family and a wide community of friends for the viewing in the chapel of that same funeral home. Mary sat beside me. She had finally made a decision and after the viewing, Gabriel would be cremated. She said she had made that decision because if she did not always live here, she would have to leave him if he was buried here. This way, she would always have his ashes and anywhere they lived, Gabriel would live there too. She had made peace with God after the priest assured her Gabriel's ashes would be blessed by the church and they were. 

We sat in silence for awhile then she turned to me and said she needed me to know what our presence in their lives had meant to them. She expressed the deepest appreciation for the arms that had held her while she cried, for the medicines that arrived in time to control any discomfort or suffering, for the encouragement and support to make the difficult decisions around what to do or not to do next and for the truthful assurance that we would honor and respect whatever her decisions were. She said that she knew once we came on board that she would not have to do this alone, that as much as no woman can ever be ready to release their child, we helped her see that she did have the strength to both be there for him while he lived and then to release him once he died. She spoke of the experience being the most amazing thing she had ever done because of our presence; and that she was able to see the richness in his end of life because we gave her the safe space from which to view it. That conversation alone was enough for me to know that we did the good work on this case, we walked the talk, we spoke the truth and we lived the mission of excellent hospice care. I know Kathleen, Gabriel's hospice nurse, gave everything she had to this small boy child and his family. We both wanted desperately to feel we were doing, and had done, everything we could to help educate them on what to expect, and on how to handle it when it came. 

Thank God for her experience and expertise in the field of pediatric care giving before she had come to this valley. And for her gracious willingness to share the care in this case.

When I wrote the note in his chart after my initial visit I wrote about how humbled I was from having seen what I saw in that home. I later said I couldn't imagine doing any other work than this. The feeling of fulfillment, when we know we have helped a family through the most difficult thing they will ever do, companioning them with a gentle, loving presence, offering them that proverbial lap from which they can face what they have to face and not feel alone, is one I would not trade for anything. The final sentence of that first chart note was, It is such an honor to be present for the unfolding of the miracle we call dying.

I look back on that now. After so many years. And I wouldn't change a thing. I still feel that way but now I feel it about those who are still active in doing the work of companioning those who die. Those individuals who have taken the torch from those of us who have stepped away and those who carry the torch for great EOL work in new and creative ways. 

It's kind of hard to do anything else once you know what it can look like which was that first amazing gift my mom laid the groundwork for in her own dying.

That's enough for now. As always, I am greatly moved by your presence for these podcasts and hugely grateful for the pots of coffee coming my way through the website! 

Keeps me up some night, but that's not a bad thing. Thank you to each one of you who have made that contribution to my work.

This is Sean Jeung, and I hope you'll join me again WTVGT