Today is my birthday. I tell you this because I woke up with two wishes; one, to not listen to Eye of the Tiger even one single time today, and two, that you will light a candle for Tuesday, tomorrow, on her birthday, and email me the picture.
*picture me closing my eyes and making my wish.
Oregon
On the 101 from Cape Lookout State Park to Astoria.
I could stop now-stay in Oregon for a good while. Bend was our first stop and we pulled in to town after dark and after 10 plus hours on the road. Woke up, and love at first sight. Definitely #1 on our “Hell yeah, I’d move here!” list. Next stop was Portland, followed by the coast, which are currently tied for second place. Oregon
seems to be fitting us quite nicely. Conversely, #1 on the “I hope to never be forced to live here” list is Rawlins, Wy, where we spent our first night at the KOA by the prison.
But let’s talk about Portland. I love Portland.
Since we couldn’t fit the RV and tow car down the streets of the funky Hawthorne neighborhood where Charley’s sister Wintry, bother-in-law Paul, and not-so-wee-anymore, cousin Aoife (eee-fa) live, we parked the Rig south of town and stayed with them for a few days. (Like how I throw the word ‘Rig’ around like that? I’m a professional now.) Hawthorne neighborhood was a great break from sitting for miles and miles and hours as you can walk everywhere you want to go, and where you want to go, is to food shacks. It is littered with these, on the sidewalk, yummy, ethnic food shacks. This works out beautifully for those of us with small children that don’t want to sit still at a restaurant and who love yummy, ethnic food. *disclaimer: These are most likely not referred to as “food shacks” by those in the know.
The kids had a ball playing with their cousin at Aunt Winnie’s, at home, Tumbleweeds Playschool, and playing some bean bag game with Uncle Paul, that, like it or not, was called Corn Hole.
From there we packed up and all of us headed to the coast, Cape Lookout State Park to be exact, where Paul led a 3 day kayak trip. On day two, while Charley worked from his office-a-go-go, Paul led me and the boys on a sea kayak outing that involved passing through a family of harbor seals, huge flocks of pelicans, and a stop to hunt for sand dollars. It was spectacular. It’s useless for me to even try and explain. For a land locked girl, I feel very at home near the water.
This is what I needed.
Last night, Charley and I were the only two, on a huge beach, at low tide, under the harvest moon, and I felt that tininess that always resets me. That, in your face, reminder for me that I will never figure this cancer mess out because I’m not designed to figure it out. I am tiny. I am just another tiny, yet invaluable, part of this beautiful and painful world and it is ok to let go and be pulled by the tide. I like that. It is freeing.
This trip is freeing. It is freeing to walk to the video store in some oversized, unflattering outfit while my clothes are in the wash and not care who sees me and thinks, Oh God, she must be a mess, I saw her at the video store and you should have seen her….
It’s freeing to come and go as we please. To not even know where we are going next, but knowing that we are going there together. It’s freeing. It’s freeing to be able to talk about Tuesday to the guy at the running store in Bend and know that is one more person that heard the word Neuroblastoma, and yet, know that I won’t have to see him again; to pass him on the street, knowing that he’s thinking, “There’s that lady who’s kid died.”
It’s freeing to still be in pajama’s at 10 in the morning, even thought you are in one of the most spectacular places on earth, because that is what you feel like doing and no one has to be anywhere at any time. Time is no longer a matter of life and death.
She get’s her chemo in 7 minutes.
We have to flush her lines in an hour.
We need to be to be at radiation oncology by 8 am.
It’s freeing.
We can just be.
Right now I’m good with that.
It’s official. We live in a motor home. I know it’s only been for 23 hours, but after a night at the KOA in Rawlins, WY, I feel I can claim it. The kids are living up to the old ‘give em an inch, they’ll take a mile’ thing. Pumping their arms at every Semi we pass, building forts, (yes, in the RV) and using the fridge and toilet with higher than average frequency. (rules?) The dog is eating string cheese and turkey, since we forgot his food. We are eating snacks, since I forgot the crock pot and some key ingredients for actual meal making. Heading to Walmart. (I know, I know) But such is the life of the RV’r, or so I’m told.
Music is good. Scenery is not as good, but getting better. Company is perfect.
Well, almost.
If you want to follow us in a photo journal, go here.
When I get tired of knitting baby doll panties, I’m going to try and spiff this blog up. Who knows what you might find.
I know. I haven’t come here in while. It’s such a loaded task. I want to say everything and yet fear it might be saying too much. I feel as though my mind is talking my ear off and i want it to stop. I want a break from the unrelenting, what if’s and what should be’s that flood my mind. And then I’ll find that moment of quiet and it only causes me to realize that I’ve stopped thinking about it, about her, about Tuesday for a bit, and there is pain in that too.
I feel I come here at my lowest times, and when I say I’m still broken, still a spacey, anxious mess, I feel like I need to back it up with, “but other than that, I’m doing ok” because, really, I am stil finding joy and laughter.
And when I come here and share that joy and laughter, I feel remiss in not saying, “yes, today was good, but Tuesday is still dead and I am still crushed and lots of this is faking it for your sake.”
Today set out to be a faking it day. In attempts to re-enter the land of the living, I signed Piper and myself up for a MOPS group. I was cool until we got out of the car and I watched Piper put on Tuesday’s hospital backpack.
She’s supposed to be here.
They are supposed to be running in together. Piper shouldn’t be nervous to leave my side, because she should have her twin by her side. They are supposed to be together.
Twins are supposed to be together.
So today there was no faking it for me. I’m not that good.
I walked in to a room of strangers, with my tear stained face. A few knew I was “that girl”. But what about the others? I wonder what they thought when they saw me crying in the parking lot, and then again as I dropped off Piper and someone innocently said, “she sure looks familiar, she must have a twin”, and then again when I saw the knowing eyes of my friend. I bet they didn’t assume ‘dead kid.’
Anyway, I made it through. I even made it through the paper work requesting Children’s Names and Ages.
Ouch
(I’ve taken to writing an * next to Tuesady’s name but I have no idea what it’s supposed to mean to any one.)
When I picked up Piper, she told me she cried. I told her I cried too.
She asked if it was because I needed her. I told her, Yes, because I needed you.
“Hey! We both needed each other!”
Piper, not a truer statement has even been said.
Beautiful