Friday, February 24, 2012

silly silly silly silly silly RITUALS.

Life is crazy.

I know, I should warn everyone to sit down before I unload profound and original insights like that.

But seriously, life is so crazy these days, I frequently feel utterly disconnected from everything except my color coded calendar. Neon yellow for kid 1, Pink for kid 2, Blue for kid 3…I used to write school stuff in green but then I lost my green pen. Hospital days are circled, the one medicine day I tend to forget now has B written on it…my calendar is a dictator waiting to be overthrown.

If only I had the energy to stage some kind of coup…

I’ve realized over the last few weeks kind of a funny thing amidst the crazy disconnectedness that defines my average mental state. There are these tiny moments, these silly rituals, that tether me to my kids. Even when they are not with me, I find myself mentally doing things that only make sense WITH my kids. This oddity intrigues me.

When kid #2 started her all too frequent hospital trips back in 2004, she was only 6 years old…aka High Maintenance on Long Car Rides to Out of State Hospital. She NEVER slept in the car. Not ever. We had to come up with some interesting things to get through the last few miles of the trip when we inevitably hit massive traffic. So we started counting bridges. Not big bridges like the Walt Whitman or the Ben Franklin. We count overpasses.

When you get on 676 in Philly, heading from 95 to 76, the road goes down into this weird canal like trench. I have often thought that in an apocalyptic movie this would be flooded in dramatic fashion. (Yes, too many hours have been spent on this stretch of road). Anyway, back in ’04 we started counting bridges. Bridges 1-12 are normal, although bridge 8 has a metal sculpture of Ben Franklin that I originally mistook for Whoopi Goldberg. I know, I teach US History. We were a little shell shocked the first few (like, 27) times we made the drive, what can I say? Bridges 10-12 are closer together. 13 is a larger overpass, and thus must be said “Thirteeeeeeeeeeeeen”. Right after that come a quick 14 & 15 and then we are on 76. Technically there’s an overpass right off the exit, but that one doesn’t count….get on 76 and take a deep breath, here comes a massive “Sixteeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeen” which you can only get through on one breath if we are able to drive at 50 miles per hour.

Nearly 8 years later, we still do this. But the crazy thing is that now, sometimes, kid #2 is asleep when we get to the bridges…and in my head, I still count. In my head, the weird sing-song counting continues. Even without her voice Actually coming from the back seat, I hear her.
This weirdly comforts me, even as I am slightly bugged that I am compelled to count.

On any interstate trip we also have to say the name of the state we are leaving really fast and repeatedly right before the state line…then you finish with the new state. So on our trips to the hospital that plays out as NewJerseyNewJerseyNewJerseyNewJerseyNewJerseyNewJersey PENNSYLVANIA! …and then in reverse on the way back. This is more challenging in New England, the state names are so long and full of consonants (try Connecticut to Massachusetts or reversed. Eek!). But again, even if the kids are sleeping, I find myself doing this ridiculous thing.

Finally, my kid #3 recently brought home a new car ritual, the “FEDEX I SEE THE ARROW!” contest. If you see a Fed Ex truck, you have to be the first person to spot the arrow in the logo (did you know there is one? I never knew until kid #3 showed me)…and then YELL “FEDEXISEETHEARROW!” as fast as you can. For the visually impaired kid in the car, the rules are adjusted, she can yell “FedEx I see the truck!” since I am not sure she has EVER figured out where the arrow is.

Now, even when I drive alone, I mentally keep track of all the FedEx trucks I see. Note to all, somewhere in the middle of Massachusetts there must be a FedEx facility near 495, because we saw about 10 in 4 minutes. To be more accurate, Momma saw about 10 in 4 minutes (oh yeah!).

For some reason, this mental monologue that happens whenever I drive is a comfort to me. Somehow I know, that even in the crazy disconnectedness that is so plaguing me right now, I AM deeply connected to my kids. This silly little thing isn’t the most meaningful moment ever, obviously, but it ‘s kind of like that little smile across the room that brightens your day…a little connection that reminds me that even as I flounder through my days, I am so blessed to have these children who are so deeply engraved on my heart.

Do you have any silly rituals like these? Not like I need to add more (I am so going to add more) , but…we’re not the only ones who do these things, right? Right? Bueller? ; )

Sunday, February 12, 2012

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….


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.