God Bless Who?

The girls spent the night at my house last night. We went shopping in the afternoon. We grilled some hot dogs for dinner and ate on the porch. We eventually had a bonfire and went to bed.

All in all, a rather "normal" day and night. We giggled as Livy told bad jokes after dinner. We giggled at Jim's sexy old man shorts and over-the-calf socks by the fire. We giggled harder when Bella fell out of her lawn chair onto the soft grass, thankfully away from the flame.

Through the course of it all, they got on each other's nerves. They didn't always hear me the first time when I made a request for help. They played songs on their phones too loudly and left a mess on the island.

As I looked at them in the firelight, I couldn't help but marvel at how far we've all come in a year and how long ago that all seemed. I also thought about how good "normal" feels.

About 10 p.m., I sounded the "it's time to get ready for bed" alarm. Off they went to brush teeth, put jams on and start to settle in.

B was in bed first. Our routine, since they were wee babes, is for us to say our bedtime prayers. They used to sleep in the same bed, so it was easy. Now, they each have their own room and the prayers are often separate events, depending on who jumps under the covers first.

Tonight, for whatever reason, we all climbed into Bella's bed for the festivities.

This is how the prayer goes. It's the same one my mom used to say with us when she tucked us in, a lifetime ago. Maybe you say it at your house, too:

"Now I lay me down to sleep. I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take."

(I will admit that there were times in this past 18 months, where my voice cracked during the last line and I was grateful to be in the dark so no one could see the tears streaming down my face.)

The rote memorization of that little prayer is always followed by a question from me: "God Bless who?"

Here, too, the answers can be fairly rote, depending on how tired/uninterested or chatty/wanting to delay sleep they are. "God Bless mom and dad and Livy/Bella, Maya, Gumma, Abuelita ..." Sometimes, if they're feeling particularly Eddie Haskell-ish, Jim and I will rise in the mention order. Occasionally, they'll have a specific reason to add someone to the list, based on something that was going on in school or in the world.

It's on those chatty/wanting to delay sleep nights that we can have some really interesting conversations. It's when they'll talk about someone at school who is having a hard time or something they saw on the news that's bothering them. It can also be a time for questions that lead to more questions that lead to giggles and silly stuff.

Last night, in the middle of all the new-found "normal," it took an interesting turn.

"God Bless who?" I asked.

B, never one to wait to answer, said, "Sophia, Sophia, Ellie ..."

"Who are Sophia and Sophia?" I asked.

"Cancer friends," she replied.

I knew what that meant. They were girls she had connected with through the wonders of the internet. And their role in B's life is very important. They are the ones who REALLY understood what she is going through, the de facto support group. They are the ones who can say the things we couldn't. They are the ones who hold each other up when the rest of us don't know how.

I also knew Ellie was from England and that she and Bella chatted quite a bit. But the other two girls were unfamiliar to me.

"Where do they live?" I asked, cautiously. I wasn't sure how much she'd want to talk about them, nor how I would handle the answers.

"One is from Australia," she said. "She's 15, too."

"What kind of cancer does she have?" And as I asked, I had dozens of conversations like this flash through my mind in a second. Conversations that sound completely "normal" in tone and pace to any other conversation you've ever had about the weather or what's for dinner or plans for Friday night, even though they are a billion light years away from those conversations in actual content. Conversations about what type of port she wanted. Conversations about whether or not she'd ever have kids. Conversations about chemo and fears and dreams.

"Osteo," she replied, meaning osteosarcoma, or cancer in her bones. "She just got some bad news."

The voice in my head says, "DO NOT LET YOUR VOICE WIGGLE."

She let her fingers fly on her phone as she tries to pull up a conversation. Miss O hasn't made a peep this whole time.

"Here, look at this," she says and she shoves the phone at  me.

There in the darkness, I can see this is a huge string of back and forth between Bella and others. The reality of what it is begins to sink in.

I start to read it out loud and she admonishes me. At first I think it's perhaps that she doesn't want the words to have a life of their own, hanging out there in the air. Then I realize she just doesn't want Livy to hear them. Protective big sister.

And my heart breaks a little. DO NOT SHED A TEAR, the voice in my head commands.

"Hey guys," the text reads. "Got some bad news today. While the tumor in my lung is gone, the cancer is spreading from my pelvis."

DO NOT SHED A TEAR.

"My treatment options are few. It's not what we were hoping for."

DO NOT LET HER NOTICE YOU CHOKING BACK THOSE TEARS.

"My plan is to live as much as I can, travel as much as I can, do as much as I can for as long as I can."

DO NOT LOSE IT.

I look at B. She's calm. She's seemingly comfortable with this conversation, at least on the outside. Though I know her well enough to know she's not remotely comfortable with it on the inside. And then all my thoughts of "normal" go right out the window.
"
While I have been thinking how nice it is to have this "breathing room" with good news from scans and while I have perhaps been a bit impatient with her inability to move forward at school, etc., I have forgotten how this looks from her vantage point.

Hell, I didn't even know that she had these conversations with cancer friends. How many cancer friends has she lost? How terrified must she be when she hears information like this? How dare we expect her to just get over it and move forward?

This is a part of childhood cancer that I hadn't considered. Just when I thought I knew the depths of hell it presented, I learned that there's a whole new hole.

There is no such thing as normal. There never will be again.

And all of a sudden I realize, again, how impossible this is for a 15-year-old child to process. Her friends at school are talking about prom dresses and summer vacation plans and boys. She's talking to other 15-year-olds about what it feels like to know you're dying.

She's also wondering when her turn will come. If her turn will come. Let your head settle on that for a bit. Imagine what that's like ... every minute of every day.

There are days I think she's a little immature. A little impulsive. Occasionally obstinate. (Wonder where she gets that from? Let's just say she comes by it all honestly.) There are days I get frustrated with what I interpret as a lack of desire to move forward.(After all, she's "cancer free!")

But I have to remember that I don't know shit about being her. And I have to remind myself that she's got a whole bunch more working behind those beautiful brown eyes than I can truly understand. She's having conversations and processing realities that I can't get my own 49-year-old head around.

Back in that room, we talk about living every day. We talk about how no one knows when their time will come. I know it's vapid and meaningless as the words come out of my mouth. But we both pretend like it matters.

I eventually kiss them both goodnight, in their respective beds, and tell them how much I love them.

Because, I hope, that does matter somehow.

I lay awake in my own bed for a long time, visualizing that conversation I saw on her phone. I think about her, facing truths and giving pep talks and providing comfort like a woman wise beyond her years.

I'd give anything if she didn't have to do any of those things.

God Bless her.

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If you want to meet Sophia, here is a link to her Facebook page: https://www.facebook.com/sophia.gall.5?fref=nf&pnref=story

It's not easy to watch.

If you know someone who might know someone who can get to Ellen or Ed Sheeran, please pass it on.
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I Wore Fancy Earrings Today

Today was the fourth time that I wore "fashionable" earrings in more than a year. This may not seem like a big deal to you, but it was a very big deal to me.

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Those of you who know me have a good idea why I've been absent from this blog for the past 16 or so months. 

It's not because I gained nearly all of my weight back and sort of feel like a fraud ... though that's true. 

It's not because I grew tired of writing ... I'm not sure I ever get tired of that. 

It's because something much bigger happened in my life. In my family's life. Something so big, so painful and so terrifying that I simply could not put words on paper about it. It was too real. Too raw. And too personal. 

Deep breath. Because the words are still so very hard to produce: 

Just before New Year's Day 2016, my then 14-year-old niece was diagnosed with Rhabdomyosarcoma. 

And our whole world turned upside down. 

I may find the courage to write about it someday. I really think that writing about it may be the only way I will ever actually process is. 

But right now I can't. At least not totally. 

I can, however, tell you that I wore fancy earrings today as a first step to breathing.

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It's funny how rituals start. When my business closed in December 2013 and I was out of a job, I had the very good fortune of receiving nearly a year of severance pay and negotiated an additional stock payout. I landed a great job. I felt kind of invincible. 

Jim and I took some of that extra cash and went to Alaska for two weeks. We got a few house projects done. And I walked into a jewelry store and bought a pair of diamond earrings ... just because. 

Now, they were earrings that were on sale, mind you. (I hadn't completely lost my connection to reality.) But they were the most expensive earrings I'd ever bought. In my head, I called them my "freedom" earrings. To me, they represented the hard work I had put in for the past 20 years. They were a little reminder to myself that I had EARNED the success I had achieved, in some part ... that it hadn't been ALL luck. 

Maybe that seems silly to you, but they were important to me. I wanted them to be a symbol of power and positivity in a new, sort of scary, future. I convinced myself that they would bring me good luck as I stepped out into a new world. 

Well, that first new job quickly led to a second new job, even more exciting. But that second new job fizzled shortly after almost 7 months. And then I was out of work for 6 months, trying to find my footing. 

I held onto the feeling behind those earrings, wearing them for job interviews and whenever I needed a boost.

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When Bella was diagnosed, I was so scared I didn't know what to do. I couldn't stop crying. I couldn't catch my breath. I couldn't allow myself to consider all of the alternatives. I prayed every moment of every day. I started looking for signs that things were going to be OK. 

I started wearing those earrings as a shield. I needed that boost every morning as I tried to drag myself to work. I put them on, every day, in hopes that they really were some sort of good luck charm. 

I wore them. Every. Single. Day. I ritualized the way I put them on. First, I took them both out of my little jewelry box and set them on the dresser. Then, and only then, could I pick one up and put it on. 

The left one had to go in first. Every time. 

It didn't matter what the outfit. It didn't matter what the season. I wore those earrings with them all. They were my badge of courage on days when I had none. The certainty of "streak" of wearing them became a way to face the uncertainty of every moment in the chaos that consumed all of us.

Then, one day last summer, as I was popping them in my ears, I dropped one of the little silver backs onto my bedroom carpet.My eyes darted around, quickly, looking for that sparkle. When I couldn't find it, I dropped to my knees, assuming I'd find it in a second. But I couldn't find it. I could feel the bubble of panic starting in the pit of my stomach. The more I looked, the more panicked I got. My breaths got shorter and faster. I needed to find it ... and I couldn't find it. 

By the time Jim walked in to see why it was taking me so long to get ready, I was in full meltdown. I was raking my fingers across the pile, pressing my face down in it to look sideways across, hoping for a glimmer of metal. With tears streaming down my face, I screamed, "I can't find the back of my earring! Help me find it. I can't lose it! I have to wear them!" Bewildered, because he had no idea what I was talking about, but sensing my urgency and making no judgement on my come-apart, he hit the floor, eventually going to find a flashlight. 

We were unsuccessful and I was nearly hyperventilating. After I explained the whole story, he quietly convinced me that I could still wear that earring with another back. I wasn't a 100% convinced, but I had no other option. 

The new back was yellow gold, not white gold. And it became part of the ritual, too. The "original" back went on my left ear. The new back went on the right ear. 

Those earrings became my security blanket. Nothing bad could happen as long as I wore them. 

So I wore them. Every day. Every outfit. Whether they "matched" or not.

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My niece's treatment ended at the end of November. Her scans showed "no visible signs of cancer." But still I wore those earrings. I couldn't tempt fate. I couldn't change the luck. 

When it was time for her February scans, we all held our collective breath. Hallelujah! The news was good again. Still no visible signs of cancer. 

Last week I got to go on her Make-A-Wish trip. We lived like kings for a week at Disney. We ate too much, slept too little, fought a bit like sisters do ... and had a blast. She took on every roller coaster with sheer joy. (I joined her on all but one with sheer terror, much to her delight.) We celebrated the end of treatment and the end of a year in hell. It felt for a while, like things were finally back to normal. 

So the time seemed right to take another deep breath and allow myself to take the leap of faith that everything was going to be OK. Without the earrings. 

I've got three days at work with three different pairs of earrings under my belt. It feels strange. And I'd be lying if I said it wasn't a bit unnerving. 

But she is ready to take on her new life. So I have to be, too. 

We are a couple of weeks out from her next scans. That day, I will wear them. 

The Secret Pine Cone Picker Upper

I went to say goodbye to a friend today.

A real goodbye. We're leaving for a week of vacation and I suspect that she won't be here when we return. By then, the cancer that's spreading within her will have won ...

... and the world will have lost this beautiful, kind, smiling woman.

It's a strange thing ... saying goodbye for the last time. Jim and I were nervous as we drove to the tidy, little house where my friend lives with her darling husband, next door to our first house. We knew she was sick and that things weren't going well, but neither one of us had any idea what we were going to say when we walked through her door.

"We're going to be cheerful and not cry," I said, when Jim asked what we were supposed to do once we got there, his bewilderment matching my own. It was the only reasonable way I could think to approach it.

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We'd gotten a call early this morning from the gentleman who bought our first house. He said that our friends had come home early from their annual California trip and that there had been a lot of activity since they returned.

We knew what that meant.

So Jim called that tidy little house. I was upstairs and he was down in his office, but I could hear him on the phone. While I couldn't make out the words, I could tell the conversation didn't take very long. Then I heard Jim climbing the steps.

I knew what he was going to say before he opened his mouth. His tears had already started and mine quickly followed.

"He said we should come see her today or tomorrow," Jim said.

I'm pretty sure there was a string of expletives. And more tears. We both stood there and hugged and cried. I wanted to throw things and hit things and kick things. But I did none of that. I just sobbed.
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I was expecting her to be in bed. I was happily surprised when I heard her call out as we walked in the back door.

We had a quick exchange with her husband as we kicked off our shoes and could tell what the situation was, though no words were said. Cheerful and no crying. Cheerful and no crying. Cheerful and no crying. I just kept repeating it in my head as I rounded the corner.

There she was, fully made up, sitting in her cheerful, sunny front room, on the new furniture I'd only seen once before. She had her feet up on the ottoman, a pretty light blue fleece hoodie on and a cozy blanket tossed over her legs and feet.

All of the nervousness quickly dissipated. We sat down, like we had a hundred times before, and had us a visit. A good, old fashioned chat.

They told us about their trip to California to see their son. They updated us on their grandson's progress as a professional umpire. She quickly filled us in on their rather hurried departure from the San Diego area as soon as they knew that things had taken a turn and of her short stay at the hospital here.

We told her a few funny stories. I showed off some pictures of Bella's new hair and Jim talked about Kati's new puppy.

She said hospice was now coming to the house. She didn't have to say that the hospital sent her home because there was nothing more they could do.

But we all understood that loud and clear.

I could see her getting tired, so it was time to go. I gave her a hug and told her I loved her. She said it back. Jim did the same.

We gave her husband another squeeze at the back door, We said all the things you're supposed to say ... "if you need anything, let us know ... "don't be afraid to call" ... "love you" ...

And we left.

A goodbye without a goodbye uttered.

Cheerful and no crying has left the building. My heart is heavy, and the tears are still flowing.

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THE STORY OF THE SECRET PINE CONE PICKER UPPER
There once was a young woman who bought her first house in a cute, well-kept neighborhood on the west side of town. She didn't know much about running a household of her own, but managed to get the lawn mowed every week and the dishes done on a relatively regular basis.

One day, she came home from work and noticed that the front hedges had been trimmed. Other strange things also happened. Sometimes the leaves seemed to rake themselves. Occasionally, the sidewalks would be miraculously clear after a daytime snowfall.

The young woman began to suspect the retired man who lived next door was secretly taking care of her house. And she began to thank him profusely. She brought him gifts. She made sure he knew how much she appreciated him.

In the front yard of this house was a very, very tall pine tree. To be honest, it was a bit out of proportion for the small yard and tiny little ranch house. Its lower branches easily created a 20' diameter canopy. When the young woman would mow her lawn, she was able to stand up under the pine tree's bottom branches ... because the kindly neighbor man would keep them trimmed.

Again, she made sure he knew how much she appreciated his help.

But there was something very strange about this pine tree.

Never did it drop a pine cone. Not one. Was it some sort of mutant hybrid pine tree, the young woman wondered? It dropped a zillion brown pine needles, to be sure, but never a pine cone.

Little did she know, the kindly retired neighbor man had a secret accomplice.

Her name was Margaret and she collected pine cones from that big pine tree daily. Just to be nice.

She never mentioned it. She never did it when the young woman was home to see it. She let the young woman think her husband did all the work.

That's how she is.

And so is this:
She makes sun tea in a big jug on her patio table by the back door. She also likes to have a happy hour cocktail out there when the weather is nice. She walks miles and miles around the neighborhood, enjoys lemon desserts and prefers the color blue. She adores her grandson Sean and always refers to her kids as "My Jean" and "My Jim." Her Christmas Village graces her bay window in her front room every year, complete with angel hair snow. She nursed her husband Dick back to strength after a few heart-related scares and she loves to tell their love story. (It is one for the ages!)

I wish you could know her.