Me, the Big Rock, and Mount Yikes--Movin' Right Along--Again

She Bloggeth!

Ok, so that is a little melodramatic, but subtlety has never been a strength of mine. My loud face gets me in so much trouble at faculty meetings, I legit have to stare at my notes whenever any person is talking—because even if I say NOTHING, my stupid loud face says all the things that one should never say at any meeting. 

But I digress. I haven’t even started, and I am digressing…this does not bode well.

BUT—I am determined. Words are both powerful on their own, and empowering, and my inability to write ANYTHING after telling our family story two or three years ago alarms me.

Our penchant for falling into statistically improbable bad stuff just finally caught up with me, I guess, and I lost all my words.  For the last twelve and a half years I have been pushing a Big Rock around. Sometimes I can really get it rolling. Sometimes I end up squished under it for a bit (ok, for years at a time,  2004-2006, and then for a couple of months in the summers of 2008,9,10, then 2011-2013, then June 2014, then three months of 2016…*cough).

 Recently, I just got stuck. Kind of like this:

Obviously I did not fill the last few years with art lessons.

And by recently, I mean for like, two or three years. Maybe longer.

Last year my Survivor Kid had whooping cough, technically “pertussis-like syndrome” since she had been vaccinated—hers was a “mild case”.

On a couple of occasions last winter/spring we thought we were going to lose her.  Like, in my kitchen. Mild my fat fanny. I can’t imagine how horrifying the full blown version is…

For whatever reason, that particular pitfall on Mount Yikes really derailed me.  We had made it through brain tumor hell AND high water and a stupid regular illness FOR WHICH SHE HAD BEEN VACCINATED could make my kid choke and turn blue in front of us?  The ER doc who finally gave us a diagnosis was remarkably understanding about why the two psycho onco parents in front of her were in full blown HELL NO mode.

mom note: the whooping cough booster seems to last about 5 years, so...you all might want to check on that. And just because one HAS whooping cough does not mean they are now perpetually immune. Fricka Fracka...
Even a year later, Survivor Kid’s little sister still gets twitchy any time Survivor Kid coughs.

This situation put about 4 tons more on the Big Rock, and added 15k elevation to Mount Yikes.  Mount Yikes was already pretty steep, school was tough, work was tough, life was life. Everyone has tough. That is what life is…we certainly have zero monopoly on Mount Yikes…

….And then we lost some of our long time BT and NF friends in the fall. I still don’t have words for that. So I shall just speak that dark moment, that moment that flattened me for a month, and try to keep pushing up the hill.

Since early fall I have been working through things, really focusing on exercise, and yoga (remarkably helpful, even 20 minute “Yoga for The Ridiculously Inflexible” videos that I do at home, by myself, where only the dog can laugh at me.  I talked to a doctor, and got some help getting my personal chemistry back in place.  I am trying to read things that will help or inspire me—even if I haven’t OPENED Full Catastrophe Living, it’s waiting here to be read.  I am talking to God. I am making an effort to connect more with other people, because I kind of moved into a bit of a cave on Mount Yikes during the last few years.

It is a work.

But I will do it.  And – well here I am. Writing something while both of my girls are at their new schools, doing great. My son—at his school, doing great (no random broken bones in January this year, well, not for him, just for third born. But we managed it.)   I am planning a two day getaway with Dave for the summer, it’s been two years and we need to just have a couple of days near the ocean, just being. 

The work is working. The Big Rock is slowly moving.

I still have trouble reading my words about Survivor Kid and all our family went through. We still live with the late effects of that journey every minute of every day. I read things I wrote years ago, in our life “Before Brain Tumors”, and I almost can’t believe that I wrote them.  Nothing like being at a youth group thing and realize folks are acting out a funny skit you wrote 42,000 years ago.  I used to be really sharp and funny, not just scary.   And you know what, I can work back there again. This is a first step.  Not perfect. I am trying (as always!) not to let the perfect be the enemy of the good.  Let's do this.

Big Rock has gotten mossy from sitting in one place for so long.  So let’s get moving.

Normalcy is not a 4 letter Word

So I find it vaguely ironic that when trying to write about normalcy, my computer crashes and the long post is utterly sucked into a cyber void of some kind. Normal life…ergh. My motivation to try and remember what I said also got sucked into said void…alas.

But here, in what may be a final installment of What Not To Say, is a condensed, rewritten note about “Normalcy is not a 4 Letter Word”. It’s a little rough, but I have to post something. So…here goes. And this one is dedicated to all my friends who can hear my yikes and acknowledge that it rots, and then share their lives with me, too….

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So often I have heard, after a friend starts to tell me about a child with the stomach bug or a tough time at work…

“I shouldn’t complain, I know this is nothing compared to what you are going through.”

THIS is a what not to say.

Ok, so in terms of cosmic giganticness, kid with brain tumor might trump kid with ear infection in terms of where each fall on the yikesometer. I know, our reality rots. But that doesn’t mean your tough times don’t count! Please, normalcy is not a 4 letter word.

Seriously, count the letters. There are 8.

But what I mean to say is that everyone has stress. Everyone has tough times, times that challenge us and make us want to hide under the bed. The disclaimer that your yikes isn’t as bad as a parent’s with a catastrophically ill child is kindly meant, but depressing. It’s ok. We KNOW you feel bad. We know that you feel bad about having even a hint of “there but for the grace of God…” thought when you see us. Honestly, at different points in this journey I think most parents have that thought when talking to parents further down the scary road. It’s ok. We understand. Please don’t negate your own challenges just because they seem somehow less yikes than ours…it is so sad and isolating and ugh.

Years ago we had a really difficult season here. I was at the doctor’s office with my baby every single week for about 4 months. I had to juggle various distasteful medicines (well, juggle them into a reluctant 18 month old), learn how to use unfamiliar medical equipment on said kid multiple times a day, manage food shopping and cleaning and laundry (said 18 month old generated a lot of laundry) and generally still do everything even though my baby went from one sickness to the next all winter long. It was brutal. I felt beaten down, discouraged, and exhausted.

And this was the only child in this house who does NOT have a brain tumor. Go figure. And at that point he was still an only child! Still, this yikes flattened me. Every life has stress, and we do what we have to do. Getting to be there for each other is part of what makes OUR horror more bearable.

Let me explain…

Sharing your normalcy with me makes me feel …better? Useful? I’m not even sure the right word. But just as parents in our position hope that at the end of the day we still have friends around who can support us (and alas, so many are gone now, which is more my fault than anyone else’s)…we hope to be able to BE supportive friends. Part of that is being able to support you in your normalcy. Sharing the normal ups and downs of life with us helps, it really does…

I used to have a friend who would occasionally call when my daughter was in the worst parts of her treatment, this friend would call just to share some funny story or weird anecdote…because he understood that while the pain was always with us, a funny story bridged the gap between pain and hope. Normalcy was healing.

At the end of the day, we all HOPE to get back to normalcy. I am starting to accept that we never will get back to normal normalcy (ok, I am not accepting that WELL, but I am starting to choke it down. Hey, it’s only been 7.5 years, give me time!) , but we do hope for that. Hearing about normal life stuff is almost refreshing.

Speaking for me, I feel like a friend trusts me if they can say, “Sally will only eat pasta and I am losing my mind”. Is that a huge deal? YES! It certainly was for me years ago, in our time B.T. (before tumors)…my picky eaters and my strong willed child drove me to distraction. Even today, the travails of my teen often cause me massively more anxiety than dealing with my child’s horrible illness. And maybe I know a way to help Sally eat more than pasta (ok, I don’t, but really, is pasta that bad?). I can be useful as well as ornamental, and that is so refreshing and delicious and almost empowering.

Normalcy can bring us together. Sharing normal moments builds relationships, and helps friendships survive the catastrophe that threatens any friendship in its path.

Now, I know…there are days where certain kinds of normalcy just kill me, and I have heard this echoed among my bt & nf friends. Days where we are at the store, or a child’s activity, and we hear other parents going on and on about the travesty of little Joey not getting the Lead in the school play, he was DEVASTATED,how can he be Newt # 4 instead of The King of Spring, I am calling the administration, how dare people blah blah blah, especially since Joey is lactose intolerant, how could anyone NOT see that he is so fabulous.

Ok, so my normal response to that is visualization of ninja moves, or some kind of 80s movie-style meltdown with Journey playing in the background. But this is DIFFERENT. I promise, it is.

Overhearing people kvetch about trivialities hurts when you are thinking, gee, I hope we don’t flunk chemo the first week of spring and then have to think about risky neurosurgery or a new more horrifying chemotherapy. I once lost it in a restaurant when I heard a nice family cheerfully talking about a planned trip to Disney…we had been pondering contacting Make a Wish for the same thing, and that just crushed me, the context crushed me. But sharing normal conversation with a friend is DIFFERENT.

This happens a lot when I talk to pregnant people. I ALWAYS ask how a pregnant lady is feeling, pregnancy for me was kind of super not fun. Often I find that people somehow KNOW that my pregnancies were train wrecks of hyper-emesis. With Kid #2 I ended up in the hospital when I hit 102 lbs. Yikes. But my babies are OLD. I am over it. Really. I really care a lot about pregnant ladies, I have great empathy for anyone carrying a new life within them…but so often, I hear, “I feel queasy a lot, but I KNOW that is nothing compared to what you went through…”. BUT I AM NOT COMPARING! Really. It’s not a contest, asking how YOUR life is becomes a way to connect, to express solidarity.

True, some days even bland normalcy makes me bite people’s heads off, which is totally unfair. I hate that I am the wicked witch of the east sans stripy socks. I just don’t care about political primaries in other states, or how green beans might save the universe if we only believe hard enough, or that reality TV makes you a sociopath. While it’s normal to have an opinion about those things, I just don’t give a flying wahoozie. I wish I could. Right now, I can’t. I have come to realize that turning Grown Up Age in combination with Kid #2 Relapse has made me a serious menace…sigh. I am sorry.

But again, these are impersonal normalcies. Except the reality TV thing, Project Runway IS my happy place, that is so personal. ; ) Sharing your life means something, it means a lot. So thank you for taking the leap.

In sharing normalcy, there is trust, and back and forth, and an implicit belief that maybe, just maybe the smote will not be in this parallel universe forever. Maybe there will be a day when an ear infection is the worst thing we have to deal with. Gosh, I hope so. And I don’t mean for that hope to disrespect people in the throes of yikes. I hope to support those friends, too.

When we can support each other, life makes more sense. And that is why normalcy is NOT a 4 letter word.