“You may be able to take a break from writing, but you won’t be able to take a break from being a writer.” – Stephen Leigh
It has been almost two years since I wrote in this blog. I realized that with astonishment today as I looked back at my last post dated July of 2019. When I started this blog, I couldn’t imagine even going a week without writing in it. And yet, here we are. (Funny how life likes to make liars of us, right?)
So, why the absence?
Wow. Where do I even begin? I guess we’ll start here:
In October 2020, I lost my ex-husband.
(Ok, I know that’s a strange thing to say. How can I lose my ex-husband? Yes, Kevin passed away – but is that allowed to be my loss? Trust me, I struggled with that almost more than the grief itself. Was I even allowed to be grieving? What right did I have?)
But I digress. A little back story:
For the last five years or so of Kevin’s life, his health started taking a drastic turn downhill. In his late teens, he was diagnosed with Becker muscular dystrophy, a progressive disease that causes a slow deterioration of his muscles over time. He had trouble walking for his entire adult life, but those last five years found him in a wheelchair. Our son Jeff, now 22, spent his older teen and early 20 years taking care of his father. While watching his younger sister move away and go to college, Jeff stayed behind in their little small town with his dad. It was just the two of them – father and son; caregiver and patient; roommates; friends. His dad and I had been divorced since the kids were very young, but I still lived close by. I had remarried my wonderful husband Richard and we all got along just fine. My husband and I even rode over and played cards with Jeff and Kevin occasionally if you can believe that.
Then 2020 struck.
I know we all have our 2020 stories. But man. Ours was a doozy.
The year started with my son getting drastically sick. We took him to the local hospital where he was promptly admitted, diagnosed with ulcerative colitis, and, after a 20-day hospital stay (complete with a transfer to a larger hospital four hours away that specialized in his condition), had his entire colon removed. A seemingly healthy 21 year old kid now had an ostomy bag. Needless to say, this put a bit of a damper on his caregiving for his father. Suddenly, Jeff was the one needing care himself. After some heartfelt conversations with my husband, we decided I needed to go stay with them to help.
I began living part-time with my ex-husband and son.
To outsiders, this was quite the strange situation. But to us? I don’t know – it just worked. My son needed me. And, even more than that, he needed to know that his father was being taken care of. Now, at this point, his father only needed small things. A little help with household chores and things like that. But that was soon to change.
In June 2020, the very day that my son and I returned home from his second week-long hospital stay for a second surgery, his father was attempting to walk down the hall to greet us at the door, and fell. He broke his femur.
He was whisked away in an ambulance and, like his son, was transferred to a larger hospital where he would stay for close to a month. When he came home, his need for care drastically increased. He was no longer able to take care of his basic needs. Already suffering from muscular dystrophy, there was no way his other muscles could work in place of the leg that he had so badly broken. With little to no upper body strength, he couldn’t even transfer himself to a sitting position – meaning he needed help with pretty much everything he did to care for himself.
And then, he started getting worse.
At first, we thought maybe the fall and subsequent break had just weakened his muscles to the point that he had lost all energy. But soon, he began getting sick to his stomach. And then, the tell-tale sign – his skin starting turning yellow. After some bloodwork, it was determined that his liver was not functioning properly and he was, once again, shipped off to another hospital for more tests. Meanwhile, our son had his third surgery (the second of a two-surgery series that involved removing his ostomy bag and placing a surgically engineered “replacement” called a j-pouch) and was not healing as well as we had expected. So, with our son recuperating at home, and Kevin’s mother and I taking turns between caring for Jeff and visiting Kevin in the hospital (during the small windows of time we were allowed given the COVID situation), life became a bit hectic, to say the least. And, within a few days, we were given the diagnosis for Jeff’s dad – it was cirrhosis of the liver.
At first, there was a hope. Even though his cirrhosis was extremely advanced and treatment was probably not an option – there was always the chance of a transplant. Even with Kevin’s preexisting muscular condition, there was a possibility he was a surgical candidate. So off he went to another hospital – where we were soon to receive the devastating news: the cirrhosis was too far advanced. He would not survive the transplant surgery.
Kevin was told there was nothing that could be done, and he was sent home to live out his last days.
We were hoping to have 6 months to a year with him but, sadly, that was not to be. Less than a month from being sent home, he passed away early one Sunday morning while the rest of the family was sleeping and I sat by his bedside, holding his hand.
There’s so much more I want to say about his passing – and I’m sure I will one day when I find the words – but that’s not what this blog is about. What it is about, I’m not sure really. I just know that somehow I need to vomit this last year out onto a screen. As I read over this, it seems to be reading as a news report, and I’m sorry for that. But I’m still, even all these months later, trying to learn to feel what has happened to our family. I’m just not there yet.
After Kevin’s passing, Jeff’s condition proceeded to go downhill. At first, we all assumed that it was just emotional. Of course he was mourning his father – his best friend – so he’d need a little time to be able to concentrate on healing and adjusting to life without his ostomy bag. But soon, we began to realize the problem went deeper than that. He continued to lose weight and could not eat without immediately rushing to the bathroom to lose it all, one way or the other. When the kid who had just the year before weighed 182 pounds hit his lowest weight of 110, it was obvious that he was not thriving.
So back to the hospital he went.
Which brings us to now.
After a two-week hospital stay that ended at the end of January, my son is now on a PICC line where he receives his nutrients in liquid form that go from a tube in his upper arm that extends directly into an artery in his heart. Just since being placed on this line, though, he has gained over 30 pounds. It’s working!
After the year we’ve had, I’m almost hesitant to start to feel any hope; but yet, I do. A small part of me is truly hoping that maybe this time, the worst is behind us and there’s an end in sight to all of this disaster. Maybe that’s why I feel drawn back to this blog? Maybe a small part of me is ready to start processing what has happened to all of us? What has happened to me?
I don’t know.
I recently started therapy. (Zoom therapy of course as COVID still looms over us. Ironically, this whole story has existed amidst a pandemic and I’ve barely mentioned it…) I’ve only had one session so far and I found myself sitting there at first wondering what I was even doing. Why was I there? But as is the case with good therapy, the answer suddenly presented itself.
I have forgotten how to feel.
When there was so much requiring my attention – requiring my participation – I had no time to stop and process anything. No time to decide how I felt about it because it wasn’t about me. It was about my son. It was about my ex-husband. It was about my grieving daughter. It was about everything and everyone around me that needed me. They needed my presence. My action. My feelings would just have to take a backseat for the time being.
I don’t know. Maybe now it’s time to try to get out of my head, and see what’s going on in my heart. I haven’t checked in with that fella for a while. Maybe I better make sure he’s still there.
Thanks for listening. Maybe I’ll see ya again soon as I start the journey back to figuring out what’s in this jumbled head of mine.