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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