Full of hope, we were awaiting “better”. Better than before. Better takes on many dimensions. Immediate and real. Strategic and future hopes and dreams. We walked in the front door of the Texas Children’s Hospital ER entrance, anxious and anticipating, but knowing that we would not leave unchanged, any of us. We sat and waited for everything to happen, going from relative peace to chaotic within twenty-four hours. Pictures of the chaos do not exist in my library, as I did not want to remember those hours of large swings, up and down, the noises of the machines, monitoring every aspect of Rob’s physical processes post-surgery. He likely would never have remembered any of it.
The chief issue was pain throughout, as not much worked to help him with this. He had adverse reactions to drugs that were available that would not interfere with the transplant medications. This was present and problematic throughout both hospitalizations the one with hope, and the one where he met his event horizon — the one that he had hoped to put off for some years…
Despite it all – the ups and downs of the complex solution – we really were not able to circumvent the inevitable, the time of which we could not know.
This boy who loved roller-coasters, sorbet Chantilly, WOW, to travel, and explore – who had so much to offer the world with his intellect, his wit, and his fierce determination to bring justice to the down-trodden and stand up for his beliefs – we were gut punched the day that he moved on. Just a few weeks after we had such hope. 
It is so very hard to believe that it has been ten years ago + one day that he stood waiting to walk out the door of the hospital and take responsibility for the gift of life most generously donated by someone who left ahead of Rob.
Rob was always a strategist – thinking about how he could solve problems – I expected he would become a software engineer as likely, it was his calling.
While playing online games, he devised new characters using UML, he sold them on e-bay, he made maps to strategize his escapes and advance in the games he played; he “coded” to shortcut and build points to win – no doubt, this was early coding that he would likely shift into some sort of engineering. We only can imagine and it could have been that he might have done something entirely different.
Nonetheless, on August 13th, 2005, Rob returned to the hospital with a small infected place in his surgical wound – as it turned out, literally the tip of the iceberg that would eventually lay him to rest over a period of weeks. Nothing that doctors tried worked – it was just more pain, no healing, and a lot of chaotic confusion. Rob’s reaction was to disengage gradually, and eventually, as if he was a capsule on a space station, move off into the wide universe amongst the bright stars in the galaxies beyond.
In the early days afterward, my grieving led me to running long distances where I would reach a place of better clarity and understanding to calm my panic of the totality of loss of contact with my son. I had cared for him so long and watched every detail.
One parent had literally abandoned being by his side on a regular basis, and I was left with the responsibility of day-to-day assisting Rob to care for himself, as he transitioned to do in his teens. We had a tight bond that I never really recognized was appreciated or important to him until he passed on.
It took his best friend to tell me this a few weeks after Rob moved on.
Rob was strong, and held his hand close to his chest, always, except in the middle of the night – sometimes he would call out, and we would discuss what was on his mind. At these times, it wasn’t the practical day to day stuff, but the crises of spirit and questions of understanding what I thought about God, heaven, death, the universe, and what happened if… The “if’s” were always something different and something he was worried about or needed to understand better.
I still have times where I struggle to take it all in, what’s happened. Time has an effect on our thoughts and memories, and the interpretations of the meaning of life and death. One thing that I know is true: our physical form and our energy at some point divide and no matter what anyone says, it isn’t just blackness that ensues when the physical form expires.
I believe that the place called “heaven” by some of us does exist. I also believe that it is within no person’s capability who exists on this earth in the human form to be able to fully understand it.
Rob would have told you this, and probably would tell you this today.
Rob, we’ll see you later, Buddy… Okay?
