Please just don’t

If you come here for the good vibes, and the sentimental journey of the little family that could, you may want to skip this post. It’s a vent. A rare occurrence here, but still, you’ve been warned . . . . .

I tend to think we are pretty optimistic people. For the most part, we tend to focus on how lucky we are, what we have instead of what we don’t, and celebrating the good stuff. But sometimes the negative comes out, because COME ON, this sort of sucks. So on behalf of caregivers everywhere can I just say, when we finally do vent, just don’t.

Don’t tell us to look on the bright side. Dont tell us to be grateful. Don’t tell us to cherish every moment - we are the grandmasters of that business. We don’t spend our time swearing at cars who cut us off, or harassing waitresses because the restaurant only has Pepsi products. We are pretty accepting people. We KNOW that the little things are little things. We don’t need the lectures, the pep talks, the words of sage advice from people who haven’t lived it. We are the damn Bobby Fischers of non-judgement and gratitude. 

Cancer - thank good we’re close to Mayo -check. 

Home care - at least we’re all together - check.

Massive anxiety caused by this situation - this ain’t our first rodeo - check.

Recurrence of Sarcoma- at least it’s just in the leg - check.

Surgery during what is arguably the “happiest time of the year” - at least they kept his leg - check.

Cold food - whoa we’re eating a vegetable this week - check.

Your kid looks a hot mess in the grocery store - at least you know where your kid is - check.

Crappy parking job - maybe you’re running in for antibiotics or pain meds and had other things on your mind - check.

The list goes on.

So when something goes wrong, when the proverbial straw breaks the camel’s back and we just snap, and you feel like showering us with platitudes of optimism. Just don’t. Please.

Whatever it is we’re struggling with or bitching about may seem completely insignificant to anyone else, but we are already balancing so much that it may not take much to tip the scales.

For example:

Christmas Eve is sacred to me, to our kids. Nothing happens on that day except church, searching the skies for Santa and family time. It’s the one day of the year that nothing has been able to take from us - yet.

So when a procedure was scheduled for Rico on the 24th, I took a deep breath and said, “It’s no big deal, it’s close by. Just an hour out of the day.”

But when the procedure didn’t go as planned, and Rico said we may have to go to Mayo, I lost it.  Not in the shouting, freaking out, batshit angry sort of way, and not in front of anyone. No, this was a curled-in-the-fetal-position in the back of my closet with all of the doors shut so my kids couldn’t hear the hysterical sobbing kind of way. And I wasn’t the only one.

When I finally pulled it together enough to mention to the kids that we may need to spend the evening apart, two of the kids were visibly shaken, and one nearly passed out. That is not an exaggeration. The color drained from this kid’s face, eyes went out of focus, and said kid had to remain on the floor while I brought cheese, crackers and juice until the feeling passed. These kids are not wimps. They’ve decorated and hosted Christmas Eve on the ward of the VA hospital one year just so our whole family could be together with grandparents. They've managed to split Christmas Eve and Christmas Day between two different families in two different states, with relative ease. They know how to be flexible, but this year has been brutal and this was the one day they’d managed to salvage and keep beautiful.

In the end, Dr. Mark from across the street was able to rescue us, and we didn’t need to go to the hospital. But to say there was no collateral damage would be a lie. We were happy, but spent. Emotionally exhausted. We all fell asleep early.

We went back to Mayo today. Just for a routine checkup. Kooka had a rehearsal around noon, so we made an early appointment in Rochester, which meant leaving the house a bit after six am, so we could get back on time. 

No.

No that’s not happening. Because when we arrived, we had to wait 90 minutes past our appointment time, and then were told he needed an ultrasound and day surgery to put in a new drain. See that sign up there that says “arrived” with his patient number. I just took it. We “arrived” four hours ago. Our hour long appointment has turned into seven hours of kids fending for themselves, us driving on four hours of sleep, fast food, and a missed party for Tiny. It is what it is. 

But still.

I get it. 

Some things are more important.

It’s true.

My love for him is the most important thing. He is my world.

But it doesn’t make the curveballs easy. We plan as best we can: medicine, appointments, school, wound care, constant medical errands, work - we manage it pretty well. But when a curveball is thrown something has to give - sometimes it is homework, sometimes it is healthy meals, sometimes it is a clean house, often it is sleep, sometimes it is sanity. 

I don’t often speak for anyone else, but this one time I will. 

If we say it’s hard, if we say our day sucks, please don’t tell us tomorrow will be better. We know you mean well, we know your intentions are good, but we also know all too well what tomorrow will likely look like. 

And we will probably decide to face it the way we usually do, with smiles and strong hearts, but if you could just give us a minute, that would be great.

P.S. The 80-something couple next to me is arguing about who Beyoncé’s husband is. He is right, but she insists on googling it. I hope I’m that lucky someday.