Day 15: Life after loss...

This has been a really tough week for me; lots of tears, lots of self-prescribed alone time, lots of “sitting in the suck.” I’ve mentioned before that a part of grief is that sometimes, ya just gotta sit in it. No amount of running, eating or sleeping can make it better. In fact, the longer you avoid it, the longer it takes for the wave to pass. 

We are coming up on the two year anniversary of my husband, Kenny, passing away at the age of thirty-five, from a Glioblastoma, and lurking milestones can be tough. It’s probably better this year than it was last, but yesterday was one of those days I just had to sit in it…and it sucked. Not just because the anniversary is coming (although I’m sure that would have been enough), but also because a perfect storm of “suck” was brewing. Yes, it’s a whole lotta “suck,” and now I’ll explain why.

Tomorrow, my sweet daughter is receiving the Terrific Kid award at school (for having a positive attitude). It’s her third consecutive school year receiving it, and last year was the first I had to go it alone. It was a rough “first,” but I managed. Two years ago, today, was the first time she won one. This morning, the picture came up on my “memories” on social media.

It was was the most soul sucking period of my life. Kenny was on hospice care. His symptoms grew worse, as the GBM in his head became more aggressive than anyone could have imagined. He’d had surgery the second week of February to remove the bulk of the tumor, and by the first week in March, it’d already regrown. Yes. That fast. We’d exercised all options, and it was now up to me to make these, God, I don’t even think there is a word in existence for how terrible, but we’ll go with “shitty,”  decisions. I had help from the people around me (Ken’s parents, gratefully, moved in with us to help out), but ultimately, as his wife and his “healthcare proxy” it was up to me to choose: continue treating, or let him find peace. Even now, the weight of those decisions sucks the air from my lungs. 

The day Kenny was diagnosed, four and a half years earlier, after the doctor stuttered the word “tumor,” we all sat and cried. I couldn’t even look his way that first minute. I was in such shock…I mean, ya’ll, I was still bleeding from giving birth to our son the week before! He was thirty years old, we had a family, we were young, we were healthy…it made no sense. In retrospect, the symptoms were there, but even still, no one expects a fucking brain tumor. 

Finally, after what felt like forever, I got up and sat at his bed, with he and his parents, all of us with tears streaming. He pulled me in close at one point, and said to me “Don’t you ever let me be a vegetable. You hear me? I don’t ever want to be a vegetable.”

We had so many roller coasters from there onward; clean scans, new growth scans, “it’s working!” days, and “It’s not helping,” days. I never forgot that moment. The person that “was” at this point two years ago, was not my person. I don’t mean just that his personality was different (although it was), He’d also become inept; he really couldn’t do much of anything except watch TV, and even that seemed to become troublesome for him sometimes. His memory was faulty, his attention span nil, amongst other things. He may have been able to walk and talk, but to my husband, the man I’d known my whole life who loved to be productive, he was a vegetable. He may not have been in a vegetative state (until that last week of his life), but our Kenny would never have wanted to remain in that state. All of the doctor’s I’d spoken with, from Levine Cancer Institute over to Duke, world renowned in the brain tumor field (where I’d had his records sent for another opinion), confirmed one thing: no amount of treatment would reverse the damage already done. Kenny was never coming back. 

This didn’t make it easier. I feel like I sacrificed a piece of my soul making the decision to let him go, but I did what I thought he’d want me to do, and I have to live with that. 

Looking at that picture this morning, so many things about it effected me. For starters, it was the last of our life together. It was the last photo ever taken of us as a family. It was the last time his face ever appeared on social media in a new photo. I see my face, and it’s smiling, but all I see is agony. I see it on his mom’s face, too. We were in Hell. 

I’d made another executive decision that week, to take him back to New Jersey to say goodbye to people who loved him. He didn’t want to go; he made it known every day. He also didn’t know he was dying (there were moments he understood his limited time, but as things progressed, he forgot), and he had a severely diminished mental capacity by then. I didn’t know if I was doing the right thing…but his friends and grandparents, in my mind, deserved the chance to give him love, to give him hugs, and say their farewell. Once we got back, he kept asking when we were going home. I had to lie, every day, and say we were just staying a few weeks. It pained me something fierce, and still does when I remember it. He was gone less than a month after this picture was taken. 

I’ve never spoken about this specifically before. I’ve made a lot of reference the past couple of years that, if you love someone, love them hard, and if you’re in a relationship, make sure it’s “worth it.” This is what I meant by making sure it’s worth it…I don’t mean worth the fun, or the fighting, or the worry about finances, or child rearing. I didn’t mean the risk that they might “hurt” you or leave you for someone else. I meant this. Make sure it’s worth the nearly dehumanizing pain of having to choose if your spouse lives longer or not, praying every day of your life that you made the right choices for them, and that your choices brought them peace. THAT is what marriage is, what loving someone means; and if you’re wondering if I thought it was worth it…damn skippy, ya’ll. 

So, for sure, I’ll feel sad sitting there alone tomorrow, while I smile at my daughter, feeling so grateful that she’s doing so well considering what life has thrown her way. I’ll look around and feel that suck for a moment, but then I’ll give her flowers, tell her I’m proud, and how proud her family is, and how proud her Dad is, and we’ll go about our day…

Because that’s life after loss, friends. I can have weeks like this; sad days and mad days. I can look back and be filled with the pain of yesterday…and then the moment passes. Life moves forward, time goes on, and happiness resumes. It’s not as uncomplicated, but it’s still beautiful.