Rob passed on, eleven years ago, just before 3 AM. I remember being at home later in the morning, with the phone starting to ring – people were learning about Rob and asking, “was it true?” The school counselor asked, “What do I tell all of these children lined up at my door?”
I had not slept much, once I got into my house – it was hard to know what to do. Sleeping did not feel right, but nothing felt right. I spent several hours waiting on dawn, after the dark drive back from the hospital in the wee hours, with all of our belongings, accumulated over the nearly six-week period over which he was hospitalized the final time.
Clothes, a PlayStation, the utensils we kept for preparing foods and snacks, books, cards, flowers, and just precious things that he had wanted from home – all had to be loaded up in my SUV and taken away. Suddenly. By me.
The Burt’s Bees anti-dandruff shampoo that was used the last time we washed Rob’s hair – I still have it in our shower. Will I ever be able to throw it away? Probably not. When will I ever be able to open the plastic containers and give away the clothes? I probably will not. It is too much to face, and too hard to do that.
As I have likely written before, what went missing was Rob’s “comforter” that was with him, nearly from birth, constantly through every time he was anywhere where he needed comfort and familiarity. Although it sounds strange for a 17 year old boy to have such a thing, his friends were amazingly tolerant of his having this and never teased him. He named it “Shred” because it had become shredded over time. Although, we urgently asked for staff to search, they came up with nothing. I think it went with him when he left.
On that dark drive back, I was in shock, but very aware of the darkness that I felt, both inside and experiencing in a sensory way as I drove back to our house. My mind was going from fast to slow motion. I was so numb that I could not cry or feel. Yet, I knew that I was feeling something at some level. I was feeling a hole coming on. I was not quite sure yet, but I suspected that the hole would be large and that I had to be careful not to fall into it.
The focus of most of my daily efforts had been Rob, for nearly eighteen years – that is nearly two decades of effort that fluctuated from intense to minimal like a sine curve, in the end, being the most intense with having experiences that many people cannot imagine. Towards the end, I was essentially living in a hospital immersed in daily dramas – hopes and despair – anticipation for news of improvement, shock and sadness at news of there being little hope at all.
As I sat waiting during his last surgery, I remember the news that the surgeon presented to us, after it was over – “We are in unprecedented territory, here.” I replied to him about Rob’s state, “We can’t abandon hope – if we do, he has nothing to keep him going…” It was in the days after this that Rob began to change from how he was before that surgery in ways that puzzled us. I look back and think that Rob was beginning to shut down and prepare to let go of life on earth.
Little did any of us know, except maybe Rob, himself. Now I understand more about approaching death and recognize that he was showing the signs of preparing.
I only wish that we had been discouraged from that last very painful surgery from which he never healed. He shut down after that – initially, he was screaming with pain, afterwards, then he later went into a listless state, then he began sleeping all the time, and finally, with the episode of cardiac failure, it was time – he had reached his event horizon.
Today, as I move through the eleventh anniversary of when Rob received his wings, I will try to summon up hope and reflect that he is now where the pain of his final condition is no longer troubling him – and that he is pure light without the burden of his body that worked only as well as it could, with great efforts to help it function despite the full scale warfare that Cystic Fibrosis wages every day on its host.
CF is inherited, it is inherent, it is indigenous, it is ubiquitous within the person whose genes are broken – it is just there, no matter what. Beyond a genetic transplant, holistically changing the person who has it, it is there to be . It is there to do battle with – to try to ignore – to try not to feel sad about – to try not to resent – to try to not regard as a burden – to try to live despite of – it is how we survived through the time, managing to a normal that we could handle. Especially Rob could not handle every day being a crisis. We created the standards that were slightly different only at the times when they had to be.
CF, like other genetic diseases, I suppose, has been around since the dawn of the variant of the homo sapiens when it first emerged, whenever that was.
In researching our family – I feel that I can see certain infant deaths more prevalent in certain lines, which gives me indication as to where it traveled. What is the point? I suppose the point is to understand and to let it go. This is the hard work – letting go.
From the early days in Rob’s childhood, he loved having friends. He had many throughout his life. His friends accepted Rob for who he was. He had good relationships and bad ones, and we hope that no one’s reasons for being friends with him were that they felt sorry for him. That he could not abide. He was strongly insisted that he would not be a pitied person. Ever.
So much could have been better for Rob in his life. One parent who remains nameless, hurt rather than helped, reacted rather than truly being a supportive and responsible adult. This made things harder at every juncture. Acting like a child, when Rob was more acting like an adult – introducing tension into situations that needed to be diffused…
This major person in Rob’s life who didn’t even respond to a phone call, the night that Rob was going in for transplant until someone came and banged on his door in the middle of the night – at nearly 3 AM…
Forgive? That’s hard. Forbear? Maybe. Let go? I have to do this at some point, but the feelings of anger and regret – those still come back up even if I think that I have let them go. They are big and old, and they have duration of occurrences over years – sine curves and cross-plots – multiple variables – and they branch and fork and extend into more that are difficult to untangle. As my Mom used to say, “What a mess.”
But, it is hard, as letting go might take a little longer than eleven years, when it was almost 18 years in the making. I cannot let anyone off the hook too soon – too much damage was done. But I can forbear. I can say that it was what it was. I can pray that Rob has forgiven everyone who wronged him, including me, because I know that I probably was frustrated at times and did not know what to do, so I said things and did things as I reacted. I am as imperfect as they come. One of God’s children wandering in the wilderness, waiting to be redeemed.
Let’s just say that we live, and we learn, and we strive to be better – and this is hard work for lots of us – every day.
Maybe this is the year that I can work harder at letting go. Maybe…
One thing is for sure, I miss you, Rob, and all of what we might have had. Right now, especially… In thinking about you, I still learn a lot of stuff. I still realize how well you lived your life despite what you were given at the beginning. I am very proud of you and always will be.
Love you… Always and forever.
-Mom
September 20, 2016
