Tangible Moments/ Intangible Beliefs

If you hate the taste of wine

Why do you drink it ’till you’re blind?

And if you swear that there’s no truth and who cares

How come you say it like you’re right?

Why are you scared to dream of God?

When it’s salvation that you want?

See, stars that clear have been dead for years

But the idea just lives on..

And my friend comes after work

When the features start to blur

She said, “These bars are filled with things that kill”

By now you probably should’ve learned

Did you forget that yellow bird?

How could you forget your yellow bird?

And she took a small silver wreath and pinned it on to me

And she said “this one will bring you love.”

And I don’t know if it’s true

But I keep it for good luck.

Bright Eyes, “We are Nowhere and it’s Now”

Whist dropping my middle child off at middle school orientation this morning, I had one of those moments. If you are a parent, you know what I am talking about. It’s one of those moments that you wish you could freeze, but you can’t, so you just try to commit as much of it to memory as possible.

In this moment I am in overcome with just how much I love I have for this creature sitting beside me. I stroke her arm and feel her “guns.” She is strong and athletic from dance classes. Sunglasses atop her head, spirals of blond curls, and dimples that usually frame a mischievous smile. My confident child, always ready to take on the world. But she seems a little less confident this morning. Today, there are nerves.

This child sitting next to me is on the verge of crossing the threshold into full-fledged teenager. I am not ready yet, and I don’t think that she is either.

“I don’t know what I’m supposed to do”.

She wants me to go in with her. She gives me a hug. I know that by the time I pick her back up in two hours that she will already be completely back in her element. She will have seen all of her friends, had a chance to walk her schedule, and stability will be restored. But I soak in the hug anyway. I soak in being needed.

These moments are the magic of motherhood. Of my three children, this one is the least like me. A huge grin is her default state. She knew how to play to a camera before she spoke her first word. She naturally knows how to navigate social networks. And she has the biggest sense of humor. Always a joke waiting in the wings. And her laugh? It fills the entire room. Life, for her, has always been a fun adventure that she can’t wait to take on.

I hope that she never changes.

When you are a parent, it’s never about making your kids be more like you. It’s about seeing the natural beauty of who they are and who they are becoming. It’s about guiding them towards being the absolute best version of those unique selves as possible.

I’m so disappointed that I don’t get to see who this child will be in full bloom. But I have today. And today is beautiful.

I am now living in the world of these moments. Greeting my husband when he gets home from work. Kissing him in the morning. Moments are the stuff of life made more vibrant by the knowledge that they are fleeting. And limited.

My first tumor marker reading after switching treatments? Not good. Not good at all. I spiked back up to where I was at the start of my last regimen before it started failing. I haven’t spoken to my oncologist yet, but I hope that he will tell me something like, “the new treatment will take some time to build up and become effective. Give it time”. I hope that that is what he says, at least, because the other answer is that this treatment is already not working and that I am at a “clinical trials or bust” position, not even a year into my diagnosis. This, my friends, is some scary shit to ponder.

And then there is the annoying physical shit (literally and figuratively) of the effects of the disease and treatments themselves. I am tired of the nephrostomy tube. I am tired of the bag. I went in Tuesday to get a stent to replace it, only to be told that stents often fail when a tumor is the source of the blockage, so they want me to have both until they are confident that the stent won’t fail. So now I have both a constant sense of having to pee (from the stent), a pain in my side from the nephrostomy tube jutting out, and a bag that I still have to carry. Oh, and they forgot to give me a script that day for antibiotics, causing me to spike another 103 degree fever resulting in an emergency after-hours call to the on-call physician to phone one in, but I digress..

Yes, minor annoyances, but not especially fun when already dealing with chemo and an ileostomy and the game of psychological Russian roulette that is late stage cancer playing it’s way in my head on a 24/7 basis.

The moments, these precious moments are the life raft keeping me afloat in this river of uncertainty and uncertain turns.

In times like these, people speak about turning things over to a higher power. If there is a higher power, I highly doubt that this this sentient entity is sitting around keeping score on the day to day minutiae of human lives based on who prays the hardest. I don’t think that God has a stake in whether your favorite sports team wins. Or whether a certain contestant wins this season of survivor. I wish that I could reduce everything to such a simple if/then equation. It would sure as hell make the randomness and complexity of life a lot easier, but I can’t.

But I am finding a version of this philosophy that I can live with. It’s the age-old concept of simple acceptance. I will do what I can, but I can’t let this consume me. I accept that a lot of this has just plain been the result of shit luck. I accept the blessings I have been given. I accept the curses that I cannot fix or change.

But if you want to pray for me? I will still gladly accept your well-wishes. I won’t turn you down. This comes with one exception. Don’t tell me that my diagnosis and final prognosis are part of “God’s plan.” If you do, I may have to refer you to my husband who will swiftly punch you in the face 😀. Saying this tells me all that I need to know. That I am not a full person to you; merely an abstract upon which you wish to project your own selfish moral fables.

Aside from that, I will accept all of the genuine positivity you are willing to send. It’s the deliberate act of not walking under a ladder before a job interview. It’s the four-leaf clover that you got years ago falling apart in Saran Wrap in your glove box.

It’s not exactly about believing in fate. But it IS about the human desire to not tempt it.

There is a lovely (and extremely extroverted) woman, who volunteers to walk around the infusion center every day talking to the patients. She knows that I am young, and that my cancer is advanced. Last week she brought me a bracelet with a locket. Inside the locket is 3 angels.

Although I am not religious, I strongly appreciate the sentiment and now have it hanging from the dashboard in my car. I don’t presume to believe that it will cure me in any way, but it reminds me that people are good. And that there is never any harm in a little bit of hope.

Fate. Belief. Hope. This is the river. The good moments are the raft. We should all be embracing them as tightly as we can. And learning how, when the time comes, to let them go.

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