Recently, George, Rob’s transplant doctor, has been communicating with me about the book that he is writing, about his experience as a lung transplant specialist. Rob and I are both in the book under pseudonyms due to HIPPA regulations and protecting privacy. I contributed a few years back to this large effort as he was getting started.

I think back about the day, every year, and how things unfolded. Now, it’s been a significant period of time and as time has the effect of change, nothing would look or be the same. The procedures have changed. George told me that because Rob had Mycobacterium abscessus (MyA for short), no more did they do this surgery until the prospective patient had completed a treatment protocol that completely clears the bug from the patient’s system.

I guess that was a contribution, but it makes me sad that the due diligence wasn’t in place back then or perhaps this was not as prevalent. So much has changed in CF treatment and the new pharmaceutical products are truly amazing because they are helping so many people today that to put it plainly, would be dead otherwise.

At this point I don’t get weepy. I just feel kind of blah and sort of sad, of course, and think about what it would be like if he was still here and then I tell myself that that is stupid and only hurts so I try to claw that back and think about something else.

Do we ever get over it? That is a stupid expectation. Of course we don’t. Do we “move on”? Nope. That is another stupid expectation. Do we change? Yes. We do change and we try to look for the good in things if we can. Do I have regrets? Not really. We knew (Rob knew) his trajectory. There was not another viable treatment decision besides sitting and waiting to drown in infected secretions and know that his lungs would eventually fail. That was not an option for him, he decided this early on.

We supported him the whole journey. His friends. His family. I did a lions share of supporting him for his physical needs and emotional as well. My mom, once she regained most of her “better self” behaviorally, was immensely supportive of Rob and spent a lot of time with him while I was at work. That was critical and I am eternally grateful.

There was a lot going on in his final years, and for that I am extremely sad and regretful that this happened. It was actually going on about half of his life, but I wasn’t aware and then it snowballed into it’s own event horizon. That was very tragic. But my main focus was keeping him alive until God decided that this was no longer in the plan.

So here we are in the years after. I am getting old(er) and my perspectives change as one would imagine. I am trying to stay in reasonable health. Every time I go into a hospital I think of Rob and how much of his life he spent going to doctor visits, lab work visits, and being treated in the hospital. Not as much as some people with CF have, but more than “normal” kids…

He did have a lot of friends and was very socially engaged with them. They had a good time when they were together, even if they got into some not that bad trouble, they usually came away unscathed. I think of how funny those guys were when they were together. That is a treasured memory. How many hours they spent behind screens playing games with each other and others that they met in their gaming communities.

Rob was a typical Millennial (Gen Y) guy. His brother (a typical Gen X) was always frustrated by this, of course. Had Rob lived to know his nephew who is a Gen Alpha, they probably would have gotten along fabulously, as his nephew observes the same habits, likes and dislikes, and tendencies. At least I imagine that this is how things would be, but this is just a guess.

I will end this writing today. I share with other friends being a member of the Club for Moms Whose Kids Have Left the Planet. We may talk a little about this but every experience is unique. We hug and are grateful to have had our kids in our lives for as long as it was intended to be.

We know we never had control of that timeline. It’s a God thing.