respite

 

Two days ago Rico left the house on a stretcher, headed to a five-day respite program at the local hospital.

Seeing someone you love leave the house in an ambulance never feels good - even if we'd planned for it - even if the hospital is less than three minutes from our house.  

We decided to use these days of respite to help Neeks get to and from her first days at a new school and help support Kaia as she finishes her reign with the Royal Ambassador program and begins her first real college experience.

We should have him back home by Tuesday.

I am able to visit him in the hospital. Nika is not. 

While I am mostly a "live and let live person", and while I also recognize that there are valid reasons for people who aren't vaccinated, or who are unable to wear masks, I will also say this: If you don't care about social distance, if you did not do what you are able for the greater good, - you are the reason my 11 year old cannot visit her dying father. You are the reason they are missing out on snuggles. You are the reason that health care workers can't trust me to bring her in to his room, or to even share a snack outside. You are the reason she had to stay masked during their entire outside interaction - and the reason they will only let him outside once during his whole stay, no matter how nice the weather is. You're the reason he didn't recognize her at first, and the reason she will have to remember the day that her dad didn't know who she was. Everyone has their own beliefs and I really can respect that - but there are also consequences for various actions, and this is one of them. 

And as long as I'm venting:

We attended a cancer benefit the other day. It was an entertainment/fundraising event that Rico typically enjoyed attending while the rest of us humored him. But after last night - ug, no. 

The announcer asked all of the cancer survivors to stand up. Then he thanked them for having the "guts and the willpower to beat cancer."

The guts and the willpower.

Can we not?

Can we stop acting like all we have to do to beat cancer is just want it badly enough? can we stop using the word beat like it's something we have control over? Evade might be a better word.

Can we stop dishonoring people like Rico and Alisa and my mom, both my Grandmas, my aunts, and so many other people I love who had the collective willpower to harness the wind, but still end up with a losing hand? Can we stop telling people that emotional fortitude is what keeps us alive?

It's not.

It's Doxorubicin, radiation,  Keppra, Vimpat,  surgeons, nurses, rehab,  Dexamethasone, PET scans, Carvedilol, science - and guess what? Even that doesn't work half the time. 

To all of you who struggled with this or are currently struggling - we know how brave you are. We know how much willpower it takes just to get through a cycle of chemo and radiation. We know the kind of guts you need to tell your family that you are going into hospice care. You are strong and tenacious, fierce and courageous. If you have managed to evade this monster, we are here to cheer you on. If you're still in its' grasp, we're here for that too. You are all our heroes.

On a lighter note:

Jodi came to visit this week. Jodi of flip-flop necklace fame. We've been friends since 5th grade and she brought the yearbooks to prove it. She visited with Rico, taught Neeks and I to make beaded bracelets, wrangled Piper more times than I care to count and spent hours making us laugh. 

Rico is struggling cognitively but not emotionally right now. He is in no pain and spends time thinking about his next great meal and when we'll get to go to Paris. Kaia and her royal ambassadors were able to make a quick stop to say hi to him during the weekend celebration. He felt a little like a celebrity.