Moments to Grow

If life were made of moments—

Even now and then a bad one—

If life were made of moments—

Then you’d never know you had one.

                                Stephen Sondheim, Into the Woods

              As much as that song gets stuck in my head on a regular basis—life IS made of moments woven together. Trying to be IN the moment, trying to remember all the moments—this has long been my work. I fear forgetting.

                This weekend held moments that made me stop, and think, and reflect, and weirdly NOT get emotionally overwhelmed by the racing torrent of time and loss that for so long has hijacked my response to most things.

                On Saturday morning some of my former students came to help us with yard work. They are fundraising for a trip, and I know they are great kids, so we got ourselves a little crew to help with the branchpocalypse our willow trees left in our yard after one too many windy winter storms.  I haven’t seen many of my students since I left my old job, so having a few come to my house was lovely.

Spring willow (last year--no leaves yet this year!)--one of 4 in the yard.

We had pros come take down the storm-damaged branches,

don't be alarmed. 

                I looked out my kitchen window as the boys arrived—did they have a new kid in the class? I did not recognize one of the young men bundled up against the cold. I went outside to say hello and realized the unrecognizable young man WAS one of my former students, who apparently grew 6 inches since last June.  Like, now he is taller than I am—which was NOT the case before.  And yes, I went out and said “OH MY GOSH DID YOU GROW LIKE 6 INCHES SINCE LAST YEAR???”

                He did, as did the classmate next to him, which I only realized when standing next to both of them.

                AGOG!

                Ok, so I know this happens, I have a son who grew through clothes before I even took the tags off, and even my formerly tiny child has finally grown to be a short teen—but in context of all, seeing this young man so tall and grown up gave me a moment of joy.

                I know, I know, me leaving would not stunt students’ physical growth—I just felt so happy to see these young people doing so well, growing, working together, chatting about silly things. It was a good moment that reminded me of a lot of good moments in my old job with these great kids.

                Once the yard was cleared, my husband started a job we have long discussed—taking down the swingset. We had put off this moment quite a while since my youngest was loath to part with the swingset, but the steps and rails were rotting despite our repair efforts, and with little cousins who come to play, I did not want anyone to get injured out there. Also, my youngest will be 17 in a few months.

The time had come.

I feared my response to this. I have often written about how hard it is for me to part with pretty much any part of our family history, especially in light of my daughter’s catastrophic illness. The Furby she received after very high stakes brain surgery in 2006 still stands as a creepy sentinel in the top of a closet. I can’t get rid of it. So I figured getting rid of the swingset would be excruciating.

Furby is Listening...always listening...

I remember agonizing over which one we could get on our very limited budget, spending hours looking online in the early internet days.  I remember getting it set up while my firstborn was away at camp, surprising him and his little sister when he got home. I remember the baby swing we had on there for my now almost 17 year old, and all the fun my kids have had out there over the years. So much remembering. So many good moments.

the last swing

But somehow, in this moment, I could remember all those moments and NOT get trapped there. Grace? Progress? Healing? No clue why. Just – it was ok. And I had to stop and say, whoa. This IS OK.

I didn’t see THAT coming. I fully expected angst galore!

Taking down the swingset, ending this era of my parenting is ok.

Letting go of a reminder of when my kids were young is ok—because we made it through. For so long I have been terrified to let go of ANYTHING, lest someday that be all we have left.

But our past can be better honored by taking DOWN the rotting cedar, and putting up something new. We will create a new lovely space out there for new rememberings, new moments of joy.

I am grateful for these moments, for zen flowing where normally anxiety and uncertainty rule.

Growth is good. Outgrowing a job, a swingset, heck, even a pair of jeans—ok, maybe less that one—celebrate those moments of growth. Know that you have them. And keep movin’ right along.

Um, officially outgrew the swing. 

Zen and the Present Moment

Shoes on? Shoes off?

In the moment of tackling my fear of flying and my fear of flying alone (no offense, other 149 people on the plane), the security line shoe thing plagued my brain. I kept trying to see what other people around me were doing…the line wasn’t moving, so nobody was really doing anything except listening to incoming passengers talk about how they would need to leave time for this security line when they went back to the airport for their return flight.

My anxiety rose, and I figured ok, let me text somebody or something.

My phone wasn’t in the outside pocket of my bag.

It wasn’t in the pouch with my bullet journal.

It wasn’t in the bag with the extra charger and cords.

I searched my bag about 8 times (while scooching ahead a few inches every few minutes). I could feel my pulse in my head, my panic rising, my mind racing.

In a moment of revelation, I remembered. Right before I walked out the door, I put my bag down on the futon to check to make sure I had my boarding pass for the 87^th time—my phone had been in my hand, and I placed it on the seat of the stationary bike (2 feet from my back door) so I could check my paperwork.

And there it stayed.

Now, admittedly, the first 2/3 of my life, I did not have a cell phone. Until 2.5 years ago I did not have a smart phone. I know that civilizations have risen and fallen without such technology.

But the phone was meant to be my lifeline on this trip. I had carefully chosen soothing music and uplifting podcasts to get me through my crazy brain on the flight.  YoYoMa and Oprah were going to fly with me! I had Candy Crush. I had the directions to the hotel in my phone (I had gone to print them out and then decided not to).

Panic.

And worst of all, I could not call anyone to say help!

Side note, there are no payphones ANYWHERE any more. Even at gigantic international airports.

I knew Dave was flying down on a later flight, and that he would see my bright pink phone as soon as he walked in the door. I knew that another cheer mom would be on my flight, I could at least call Dave before we left. But all of my plans of zen were sitting on a bike seat at my house.

The best laid plans…

But weirdly, my massive panic/anxiety about forgetting my phone helped me. Stay with me here—in not having my phone, I had to regroup, focus my energy on getting through the present moment without a panic attack, and Do The Thing. I knew this was going to be work, but I was all in now.

By the time we got on the plane, I focused on breathing. I watched the flight attendants (who are so together) and all the relaxed people. I got my gum—I never chew gum, so the novelty factor of that was distracting. And then I took my bullet journal and started to draw. As we sat, I drew. As we taxied, I drew.  As we sped up I thought of the cheer mom who told me that at the moment of acceleration (when I tend to see my life flash before my eyes) she wants to say BEEP BEEP!! In celebration.  I wrote motivational words and drew clouds and the dragon that I was going to befriend. I had to be in the moment.

And it was ok.

I am still a little shocked, but it was ok.

Like, really ok. Not the 3 hour panic attack of my last flight.

The clouds were beautiful. The flight did not feel as loud or crazy as my last flight 8 years ago. JetBlue has Dunkin Donuts coffee. And I kept drawing. For about the first 90 minutes of the flight I doodled and drew and focused on befriending the dragon. It was ok. It was all ok. Planes are safe. I am brave. It is all ok.

And in the words of the Little Red Hen, cluck cluck, so it was.

I was relaxed. Not asleep or anything (SUPER AWAKE), but relaxed. And you know what? People at the airport helped me. The rental car guy wrote directions for me on the back of the receipt—old school!, and I got safely to my hotel driving a car that looked like a shiny red box of candy (Dave was not amused when he saw the car I was willing to take, but it actually drove pretty well , and we never ever could lose it in a parking lot).  It was ok.

In the last few weeks (especially as I’ve gotten into the season of Lent), a lot of my reading/listening has referenced the importance of present moment awareness, of authentically and fully being in the moment you are in. For me, the lost phone forced me to be in the present moment in a way that was ultimately helpful for me. I had to work through my fears in a way that was NOT the way I planned…but I did it.

So much of my life in the last many, many years has been spent in a struggle over fear of the future, fear of the present, fear of the past coming back.  This is the reality of life with a chronic catastrophic illness.  I make lists and calendars to help me feel in control of life, but at the same time these distract me from being in the moment I am in. Over the years, the present moment has sometimes been really dark, and clinging to future hope is challenging.

Escaping the current version of me by looking ahead/back/around is not a recipe for becoming the best version of me today. I have to be present in each moment to do that. I have to be in the moments, uncomfortable, challenging, and great, to really figure out how to live most authentically.

So while I do not plan to become a jet-setter anytime soon, I can see myself getting on a plane again. At the end of the day (literally, late that night) Dave brought me my phone, and I had it for the ride home—but I did not really use any of the stuff I had planned. I didn’t need it (and I had used up all my nervousness on my flight getting cancelled and then having to spend 10 hours in the airport, but that is another story for another time). While I am on the ground now, I am trying to find more ways to be in each moment—something I thought about months ago, noticing the little things, fits into this—and I will write about that more another time.

Increasingly, I know that zen and being in the present moment is something I have to work towards—there are a lot more dragons I need to befriend.

Storm in the Playroom

I almost forgot to post today...
This one is a little discombobulated, but it is so late, I just want to get something up...and as I mention below, THIS ptsd fest is still fresh.  I just don't have the energy to dig out pictures, but I will tomorrow.

May 26


As we entered summer 2011, we made another med switch for Genna in a desperate attempt to help her with her anxiety, we realized Rosie needed to wear an earplug in her bad ear while swimming, and we tried to get my son to survive sophomore year of high school.

July of 2011 was full of fun, a trip to Lake George with friends, a wondrous trip to Camp Sunshine with our bt friends, and then birthdays for Andrew (16!) and Genna (13!)…I officially had TWO teens in the house.

In all the haze of frosting and festivity, I almost forgot a double scan day was on the horizon.

Ok, that’s a total bold-faced lie. I didn’t forget.  Scan day is always like an elephant on my head.

July 26 was scan day. It went like this. (this PTSD is much fresher, so…yeah).

TUESDAY, JULY 26

just a short note...

Rosie's scan was rock solid stable. They did an extra series of ear pictures, her bones & nerves are intact. She didn't need contrast, (ergo no iv), the scan was shorter, she was triumphant and happy.

G's scan...not stable. The nurses took 4 sticks to get her iv...she needed extra meds to fall asleep, then was nearly inconsolable when she woke up (a side effect of the meds). Thanks to Joan Kerpan and Kyle's Peace G did recover from that with a new tie-dye shirt, a blanket, and coloring pages. But in the middle of her activity the neurosurgeon came into the playroom...

and time stood still.

My insides just curled up like the feet of the Wicked Witch of the East after the house fell on her.

He asked us some questions about how G has been feeling, palpated her shunt (which was working ok), said her ventricles were a little funky (my word)...and left.

Well, it doesn't take a brain surgeon to figure out WHY the ventricles might look compromised....

In some ways it was better, I had near cardiac arrest THEN, so when Dr. B cheerfully talked to the girls without the normal "stable!" at the start, I was prepared.

G has another area of growth, again in her hypothalamus, this time across from the area that scared the crap out of us last summer. So we have a blob on one side and Halley's comet on the other (that's last year's yikes, so 2010).

Sigh.

We rescan in 6 weeks. Then, if it's still bad...

Good thing we learned so much at Camp. We might need that info sooner rather than later.

I am going to go collapse (or, more likely, wander the house in a kind of wired dismay, I was too calm at CHOP) , and I will likely hide a few days...thank you for praying for us, and please pray for my G. She's ok right now, but I don't know how she'll feel once she thinks about this with a clear head tomorrow.

thank you, and peace,

k

Brain tumor note: if a neurosurgeon comes to find you in a playroom, you are totally, epically, thoroughly screwed. SCREWED.

Monday, August 1, 2011 1:04 PM CDT

Hey again.

So…here we go again.

I should be researching, I should be reading up on things, I have not started that yet. I feel the inexorable passage of time acutely, but I am finding it hard to get ahead.

For those who have asked, Genna is doing ok right now. She really hasn’t said ANYTHING about the scan. I mentioned at Costco the other day that we were going to stock up on snacks and such (pretzels, granola bars, the staple foods of our house) before September, and she put her hands to her head…I hastened to remind her that we did this last year, too, and just ended up with months’ worth of peanut butter.

We can always hope, right? It’s just that last year’s Yikes was NOT introduced by a neurosurgeon in a playroom. Mega Eek.

G did ask me, oh so quietly last night, if she had to start chemo again would she get another port.
The 4 Stick Yikes of last week’s scan has been bothering her.

So she IS thinking about it, and I expect I’ll be fielding more questions with uncertainties and crappy answers over the next 5 and a half weeks.

She had an odd moment the other day, her eyes felt blurry…but she passed the maternal shunt check, and after a little rest felt better. Ugh.

Personally, I kind of don’t know what to do with myself. So…did I call a therapist finally? Did I go and spend time at church? Did I find a quiet spot to think and regroup?

Um, not exactly.

I signed up for a half marathon.

It seemed like a reasonable idea. I was so angry. So upset. So determined to run. To pound every last cellular yikes out of NF. So angry. Any time I went out to run I muttered "f-you, NF, F-you, NF" as a cadence to keep me going.

Anger is a powerful motivator.

Of course I was also terrified. So I asked Rosie to cheer a lot for me, but really, what was the worst that could happen?

“Well,” she said, “you could collapse. Or there could be a tiny rock on the ground and you don’t see it and you fall down and don’t finish the race.”

Yes.

So once again we were waiting, waiting to see what would happen…and you know, This time, G was scared. For the first time ever, she asked me if she would die.

HOW THE HELL DO YOU ANSWER THAT?

She still wanted to celebrate 5 years off chemo. Sigh. Hard to be festive when disaster is lurking.

And then we were back to scan day, August 31, 2011…

Wednesday, August 31, 2011 7:59 AM CDT

quick word:

stable.

no chemo now.

I am road kill, but so relieved. This roller coaster is killing me, but we are so grateful and relieved.

Longest day ever (left home at 5:17 a.m, home at 8:20 pm), clinic was insane, drive home was awful, but G is stable. The @^#&(@umors stopped again. They did not shrink, they did not do ANYTHING...and you only treat low grade tumors if they are causing symptoms or growing (since chemo is mostly intended to stop them...G had gallons of chemo and it never shrank ANYTHING). So the good news of STABLE...which is awesome beyond all...is still in the context of holy @^#@That's a pile of tumor in my kid's head.

But tonight, I will sleep and hopefully not dream of oncology, and G will hopefully sleep (she is a train wreck right now, who can blame her?)...we live to fight another day.

I asked our doc how many bullets can we dodge? A lot, she said. So we keep dodging...

thank you all. thank you God, and thank you all for pulling for us. This round has been hard, it's so hard. It means so much to G to know you are in her corner...

Another reprieve. G could start 8th grade, she could just be a kid again for a little while…but this scare knocked us down, badly. And dang, I still had that half marathon to run!