Miracles Remix

Miracles Remix

Today’s Gospel at our Church was the story of Jesus healing the blind man—this story always grossed me out a little (spit and mud? Ew), but at the same time moved me, especially once I had a child who was going blind day by day in front of me.  As the deacon spoke during his homily today, my mind wandered back to when G’s vision was failing at a rapid pace.  Back then, if Jesus had offered some spit and mud for G’s eyes, we would have added that to the chemo regimen and showed the Pharisees some Jersey style onco-mom attitude if they had a problem with G getting healed on the Sabbath.

You wanna piece of ME?

Obviously, that did not happen.

But still—G’s vision improved. We aren’t sure why. Anecdotally, I think it had to do with changing chemos. Her tumors never got smaller after that first chemo fail, or the second chemo fail, or the third chemo stability/bone marrow burn out.  But her vision improved.

We gave BACK the Brailler.

A Brailler. G used to cheat and look at the dots to read things.

The only time I ever celebrated cheating. ;)

That was a miracle.

It wasn’t the miracle we prayed for. It wasn’t a clear cut miracle of complete healing or woohoo. But the day G told me she could see stars… “ you know, those tiny white things!”…that was a miracle.

She still has no peripheral vision in any direction. Her left eye still is weak (to her sense, she can’t see out of it, but she actually can). Within a narrow field of her right eye, she is correctable to 20/30. That is a miracle, based on the “counting fingers” report of 2004.

Making peace with miracles remixed is an ongoing work.  We’ve had other Miracle Remix kinds of days—March of ’06, when we found out the weird tumor thing G had going on after 18 months of chemo had NOT become stage four gliomatosis cerebri (a game changer, prognosis wise). We got to restart chemo #3. That was a miracle. The next 6 months AFTER that miracle day were brutal (Transfusionfest 2006, neutropenia-induced hospitalization, allergy to one of the chemo drugs), but it WAS a miracle.

My girls, with neurosurgeon Dr. Storm (the only guy

allowed in G's brain) and Research

genius Dr. Resnick(and his daughter), at Camp Sunshine.

Miracle Monday, 2012 – the day we found out the Avastin/Irinotecan/Temodar mix had dramatically reduced the tumor mass that had explosive growth while G was on the clinical trial.  I literally almost unraveled that day. That was a LEGIT miracle, we had never seen that kind of shrinkage EVER. We got to do nearly another year of that chemo, and it kept working (and has continued, after the fact to keep G’s tumors stable). Miracles.

Scientific progress—miraculous. Inspired. Fought for. I will take any kind of miracle that comes, even if it is ultimately in IV form in a day hospital, or in the skilled hands of a neurosurgeon. 

For me, one miracle--being able to talk to God again without using colorful language. And I don't mean red, orange, yellow, green, blue, purple. Or chartreuse. THAT was a different kind of healing miracle. Not the one I prayed for, but a gift that helped me keep on going in the face of extreme medical yikes back in '05 and '06.

yeah, not so much. I had no issue with

Jesus, just God. This is why I don't teach theology.

That guy with the muddy and healed eyeballs? He was grateful.

I am grateful.

Not going to lie, I would be totally cool with the complete healing kind of miracle. That just isn’t the kind we are going to get, and I have made peace with that, really.

But I do wonder, some days, if I am doing enough with the miracle of time we have been given.  Having more time is truly the greatest miracle of all.

As I type this, G is pondering what classes she should take at Community College (“Mom, what is “Aperture in Photography?”).

Time is the greatest miracle.

I don’t want to waste it.

The Sparkly Unicorn Killed My Alarm Clock

Ok, that’s a lie.

My alarm clock was old, really, really old, like older than any student I have taught in the last 5 years. But I promised I would reference a sparkly unicorn this time around, and it makes for a Much Better Story if I say that the alarm clock was slain by a mighty Unicorn that shot sparkles from its horn.



Yeah, it LOOKS sweet. Watch out!

Right?

Go figure, I promise you a sparkly unicorn and the only one I come up with is a violent destroyer of innocent alarm clocks. Meh.*


But when I started the last post, I actually MEANT to talk about my broken alarm clock. I didn’t mean to alarm people, somehow the flash flood of yikes that accompanies post-scan day attempts at zen carried me well downstream of my initial point.

And THAT, my friends, is reality for many an onco/nf parent.

My alarm clock was a gift for my high school graduation. Remember, when I graduated from high school we didn’t have Target or Walmart, I figure my neighbors who got me the clock had to go down to Ye Olde Clocke Shoppe and ask a wizened old man to craft me a clock. Er, a clocke.

Ok, maybe that’s overstating things, but I know my neighbors put time and effort into finding this clock for me, because it has GIGANTIC NUMBERS. Exceedingly large numbers. Comically large digital numbers. My neighbors (who knew I am ridiculously near-sighted) thought it was hilarious, the funniest gift ever. I kind of thought it was awesome, as evidenced by the fact that I’ve had it (gulp) 23+ years.

Comically Large Clock next to regular travel clock. Yeah, um, it wasn't 12:12 when I took the picture. Sigh.

The funny thing is, in high school I NEVER used an alarm clock. Ever. My mom always woke us up. She is a crazy early riser, so she would just come tell us to get up at the right time and we would. I am a light sleeper, so…yeah. It worked.

I now have two children who require a cattle prod to remove from bed, (unless it is Saturday), I am daily flabbergasted by this.

Even now, if I have to get up crazy early for something, I set my alarm, but I ALWAYS wake up before it. On scan day I knew I had to be up by 4:35 a.m. I woke up at 4:30.

It’s awkward when THIS is your party trick, but hey, what can I say, my internal Stressometer is better than even my Comically Large Numbered clock.

I realized on our most recent scan day that my alarm clock (which had been freakishly blinking for a month or so, maybe trying to send out some kind of final Morse Code-ian message of farewell) would not let me set the alarm. In fact, it stopped bearing any resemblance to the actual correct time. My internal Stressometer needs the setting of an alarm to make it work (even if I know I’m going to turn off the alarm before it goes off—that only works, I think, if I SET the alarm, then my Stressometer kicks in). Alas!

So I used my little LL Bean travel clock instead. My dead alarm clock is now turned sideways on my night stand, still blinking.

I feel bad pulling the plug.

See, it looms, a comically large number peeking over Our Lady of Czestochowa.  . And yes, my nightstand is always a tidy asssortment of icon, G giraffe drawing, Lisa Brown art, and a painted rock I bought from a kid at a craft show. And a little card with an inspirational verse. And a paper heart my 10 year old made me.
Ok, so I moved the random sock & the 3 necklaces (missed one!) and a pair of earrings and the 3 lip balms rolling about. But the clock is looming. And do you KNOW how hard it is to get a picture of a blinking clock mid-blink?

And while I am not going to draw any cumbersome metaphors about Time Passes And Passes Away Like My Ancient Comically Large Numbered Clock while humming “90 years without slumbering..tick tock tick tock…life’s seconds numbering…tick tock tick tock”, I have been thinking about time. (See! This is where that other scary post started! Hah!).

This clock was a gift from someone I now only see at funerals, a family I spent a lot of time with as a kid. I always think of them when I actually THINK about this Comically Large Numbered clock. When I got this clock I was 17 years old, just graduated from high school. I now have a line item in my teeny tiny budget notebook for “saving up for graduation gift” for MY OWN CHILD. Yeegads. Where the heck did that time GO??

So I know I have to actually get rid of my gigantic number clock and get a real clock (my travel clock has to be bopped to light up, and I am so dreadfully nearsighted I need to have a clock I can SEE without flailing about, so I don’t keep flinging my glasses off the nightstand every time I try to check the time when I am up in the night pondering life). But this is a little bittersweet, because this silly clock outlasted SO MANY THINGS in my life.

Yes, in my cedar chest I still have the teddy bear shirt that I had that matched my high school best friends’ teddy bear shirts (you know it!), I still have my dusty yearbook with my awful picture (which I knew was awful then. Yes, I have always been Susie Sunshine), my sparkly unicorn stickers are still in a box, although I’ve given most of those to my kids. I have some things tucked away, but this clock, I used it EVERY DAY. I got it when life was large and promising and full of possibility. The clock went to college with me and my first apartment and then to my married apartment and then to this home. Years and years and years of my life have been measured by this Comically Large Numbered clock.

You thought I was kidding, didn't you. I do not kid about hoarding sentimental items.

I have had this clock longer than I have been married. Longer than I’ve had children. Heck, longer than I’ve had glasses smaller than dinner plates. Long time.

So I guess I need to go shopping this weekend and find a replacement clock. But I will remember the kind neighbors who gave the original Comically Large Numbered clock to me, the good times and hard times it has measured, and how getting to own a clock for 23+ years is a blessing – we know so many folks who don’t get that many years on this planet—so once again I am left thinking, How Can I best Use This Time Given Me?

Even if it’s no longer measured by a Comically Large Numbered clock.

And you know, since my soon-to-be-graduating child is one of my cattle prod morning kids, with the money I’ve saved maybe I can get him the Mother Of All Alarm Clocks for graduation…

Heheheheh.



*no sparkly unicorns were injured in the writing of this post.