Before and after, we consider the pivotal event to be Rob’s transplant or as we think of it “opportunity for physical transformation to an extension of life” or in his diligent charting, “avoiding the event horizon at “0%” pulmonary function” with the old lungs that were becoming something like shredded tissue paper in consistency and function… Historically, for the family, this was the only focus for us — keeping Rob alive until the beeper went off, which it did, just one month after receiving the beeper, on June 24, 2005, close to midnight.
What we did was gather everything we could think of, drink some coffee (me), and get in the car, heading for the Hardy Toll Road, the well-worn path to Texas Children’s Hospital, where we would meet the doctors and nurses who would take Rob through the journey of transplant, step by step. We made an attempt to alert his dad who had shut off his phones and would not answer his door at the late hour. We enlisted the help of Rob’s best friend, Eric, to follow up with the communication trail, and eventually, he was able to get Rob’s dad awake enough to explain such that he could come to the hospital to be with Rob, too, before the surgery. It was a surreal night and wee hours leading to the surgery time which was to be about 8:00 AM. From that point on, there was a stream of nurses and doctors administering the preparatory medications through IV, and doing constant checks to make certain all was ready both with Rob, physically, and mentally.
From that point on, there was a “no going back” feeling about it all. It was what it was. As I reflected later on, what else was there to do? We knew the certainty of not going on that journey. What we saw ahead was opportunity to have more life on this earth for Rob. He thought long and hard and coped with much anxiety in making that decision to go forward — and it was his decision to go forward, no one could have talked him out of it. He saw graduation, college, and engineering in his future as a possibility this way, or nothing with the non-action. Extremely frightening, but also to him, exciting with possibility. Never in his life did I see him take the kind of control and responsibility for something — he was very obviously serious about making this work if it was within his control, pain and all.
And pain there was. At the end of the surgery, Rob was left with a spinal-IV with anesthetic that failed after surgery. His pain level was unbelievable. Morphine turned him into a raving maniac. There were not many options that did not interfere with the transplant medications. It was a grueling number of weeks before Rob was able to be relatively pain-free, but nonetheless, he progressed to a July 13th discharge to go home. Little did we know about the underlying “monster” left inside, that within a month, reared its ugly head by sending a sign up through Rob’s suture area from surgery, which Rob discovered one morning after showering (at this point, the staples and stitches were out). After a quick digital photo emailed to his doctor, we got the directive to come to the ER at Texas Children’s for a closer look. Rob never came home. That was August 12th. Through a series of creative attempts by the surgeons and infectious disease people, Rob died of this infection on September 20, 2005 in the wee hours of the morning after he had a cardiopulmonary arrest which deprived his brain and systems of oxygen – later on we learned it was a blown blood vessel in his adrenal cortex that “blew” and he essentially bled to his “event horizon”. Life support was discontinued and he died a few short minutes afterward in a room in the ICU, surrounded by his closest family members and best friends, and his primary doctor, George Mallory. Rob’s Aunt Kit, an Episcopal minister, softly said last rites as Rob slipped over into the Arms of God.
As we all stood, stunned, shocked, and saddened by the end of possibilities, we moved to embark on the journey of grief that would take each of us down paths that would endure our lifetimes. This is part of the tapestry of our lives, this grieving journey, and as I move along that path, I find that the earliest part is the most intense, and that what remains are the daily thoughts about what was, not that it can be changed, but for whatever reason, just thinking about what was and reconciling it is a lifelong journey in and of itself.
May Rob always rest in peace, and actually, I pray that he is enjoying a pain free existence, finding the air where he is, easy to consume and exhale, and that forevermore he will be fine. May he have wings.
Footnotes and Updates To Remembering Rob’s Final Days:
Easter is this Sunday, once again. Every Easter, I think of Rob on his life journey, and his final earthly days. I pray that Rob was resurrected on that early morning of September 20, 2005… He endured the physical and spiritual pain and sought something greater in life – another level – however expressed, it was something that I believe that he believed – that there was something beyond the pain.
When I am running long enough, I reach a place where I can understand better where Rob is and why he is there. As I have said in the past, it is that the humans on the earth were no longer capable of taking care of Rob and God took over, sent Jesus to be by Rob’s side, and he was escorted in his ascent to the place we know and believe exists, where there is no pain, and only love and light…
I am not a fundamentalist by any stretch of the imagination, but I do believe that Christ exists and serves to shepherd our spiritual nature. We exist at different levels and earth is one of those, where hell is chaos and reasonable happiness is where God speaks to us through the spaces where we are avoiding the chaos.
I truly believe that Rob walked across steps to move out of chaos and was assisted by a higher power (God) and Christ to move up and away from the really crazy situation that had become Rob’s life.
Rob began detaching weeks ahead of that day where it all ended here on earth for him. That his “white comforter” took off the same day leads me to believe in some spiritual mystery that can only be explained symbolically – that article comforted him on his journey. It was not to be left here for others. I have thought long and hard about this, remembering that the housekeeping staff and laundry people could not find it – why would they lie? If they did, just imagine the ramifications of that lie… Hopefully, they were telling the truth.
Many times in my life I become uncomfortable with moments whereby I have to change the scene in order to center and re-balance. It takes me awhile to do that sometimes, and that is where running helps.
This time of year in 2005 was just when Rob was going through the evaluations and decision making process for transplant. It was unbeknownst to us at the time the beginning of the last months of his life. He prepared for the journey in ways that we do not know. His consciousness was on high alert. He was anxious about the decision. He was very concerned about the outcome, but he had faith that it would turn out better than the alternatives. In this, he was fairly much on target. One way or the other, he was leaving, it was just a matter of when.
To be honest, this is the case with all of us. We just do not think of it like that because our existence would change meaning – we would always be living in the moment… Hmmm… That really strikes me as not being such a bad idea, sometimes. The what-if’s can really take you places. When you think of it – people who are suddenly taken by disaster or disease – if they did not live in the moment and were always living for the future… well, just think of that.
Those of us who have near misses or are given second chances are not guaranteed of the future, despite our delusions that this is indeed what is going on. Rob’s decision to undergo transplant was essentially a second chance, but as we saw, it came with no guarantees.
We know of three friends who are still with us who were lucky enough to survive more than a short time, and with survival there is some work involved to sustain it. Some are faring better than others. Some who were with Rob in his “transplant class” did not do so well either. It was months or a small number of years after that they have too, moved on. But they are angels in heaven and they risked a great deal with difficult decisions and some resulting pain and suffering – never 100%, but some better days than with CF and the former life of dealing with not being able to breathe and it getting worse and worse – suffocating, one day at a time. That was their grim reality for the foreseeable future.
Rob did not want that. He breathed well his last breath. Not clogged, not wheezy, but clear and unobstructed. The last few weeks of his life, those months of transplant, he always said were worth it. A life was not wasted. A gift was not wasted.
-EWN – April 14, 2014-
We crossed over into the 10th year just September 21st, the 20th marking the 9th anniversary of that day, when on the 19th, I drove furiously down the Hardy Toll Road, praying out loud, begging God to help us – but, as you know, God does help us, just not as we envision, necessarily… I arrived to a chaotic Pedi-ICU at Texas Children’s Hospital, not knowing what I would hear or see when I arrived. As best as I can remember, I was rushed into a family room, where my ex-husband, my mom, my son, Will, and then Rob’s doctor congregated to tell us what was going on with Rob. Later, my Aunt Kit and uncle, John Rufus, arrived, and close friends of Rob’s, Rob’s dad’s wife, and a neighbor of mine.
The news was not good. Rob’s blood gasses essentially were showing a lack of oxygen – he was bleeding out somewhere in his body, and they weren’t quite sure where – they thought it was his lack of platelets, shown in labs recently, that might have caused this – the day before, he was standing up in his bed, half out of his mind… a possible stroke? Not sure. Didn’t matter…he was unconscious at this point, next step would be an EEG to determine any brain activity… or not. What did we want them to do? That was the question.
My answer was pray hard, ask God to help us understand what to do. This wasn’t easy. I was more driven by conversations that Rob and I had over months (years?) driven by the ongoing news stories of Terri Schaivo and being kept alive by her parents who refused to let her go…after years of being in a coma…on life support…no reasonable signs that she would ever regain consciousness, and then what – brain damage, a life of being kept alive by machines? Rob would have none of that. He ranted about it – how could they do this? I agreed it was unfair to everyone, Terri, her husband, and it was playing with God’s hand to keep her on life support when she was essentially “brain dead”. Now it was in our lap to grapple with this type of decision. What would God have us do?
And the words that Rob had said to me just nights before, “Mom, I want you to be with me when I die.” Oh my God. Did he know somehow that he was leaving to go to the next life? Later, our parish priest, Doug Travis, would help me understand that these mysteries do seem to occur where children who are terminally ill might hang on for their parents to be “ready” to let them go… I will not ever know, but Rob had a spiritual bond and a bond with me that was so very strong that we were of one brain, at times – I was his advocate always, and he knew it. Was he afraid? He did not seem anxious. He was only in great pain. Being in great pain over an extended period does change how you relate to the world… Substantially.
I will think of this for the rest of my life here on earth, to try to understand it. I do know that in times of pain, it does re-arrange your thoughts and priorities = and when you have been fighting a disease for years, as I witnessed Rob doing, always at his side, you understand that this is your reality, as he did. He was valiant. He worked to save himself, as best as he could, by going to a radical solution… OK, it did not work out as planned, by us, but I still maintain that God took total control when the humans were unable to manage this beautiful spirit’s earthly body any longer. God wanted Rob out of pain and into the realm of love that only He could move Rob into at that time…
Nine years ago, it is a long time… Every day, I pray to understand it. I am no longer deep in depression about it – that passed fairly quickly at the time – but I am still in grief and always will be. Mothers who lose adolescent children are in a special category… you really knew this child as a person, fully developing, with their opinions and a personality that was set. You had interesting conversations with them and you grew to value his opinion. He was going to help you buy a car… And I am still driving that car that he would have helped me buy. It was one of the three that we narrowed down in our research… His research… Thank you, Rob, it has been a very good car… I might even keep it ten years or longer. Love you, Darling Boy… Thank-you for letting me into your life and enabling me to be a part of it… Actually, I thank God for this – the gift of Rob….
-EWN – September 22, 2014