Our Lights Together

12389197_10153859360210802_557676222_o

Melissa and her family taught us about Hanukkah.  They drove several hours with bags full of food and goodies that they used to make us dinner.  Melissa taught me to make Challah, how to knead the bread, the way the whole process was prayer–prayer beneath my fingers–prayer that literally rose.  I marvelled at the way the honey-butter laden bread melted in my mouth with sweetness. We ate Latkes and some of the most amazing steak I have ever eaten.  They taught us how to play Dreidel and my kids declared gelt to be the “Best Chocolate Ever.” I giggled over the fact that she taught my kids to gamble.

 

We lit the Hanukkiah together (Melissa explained to me that a Hanukkiah is a special kind of menorah with 8 candles and a Shamash, rather than a 7 branched menorah) and then, my girls wanted to show them our Advent wreath and how we lit it.  I hesitated… After Melissa shared with me about how someone the week before had outrageously called Hanukkah “Jew Christmas” and ignorantly claimed that the Hanukkiah was a kind of “Advent calendar,” I didn’t want it to feel like we were forcing our faith on them or trying to equate our Advent wreath with the Hanukkiah.  I wanted her to understand that we understood that Hanukkah was different than Christmas even though they happened at similar times of year. My girls were eager and earnest and Melissa assured them and me that of course, she’d love to learn about our traditions too, and was genuinely interested in what Advent was all about.

Then, our families sat together around a table twinkling with the lights of both of our traditions bathing us all in warm light that seemed to have a presence all its own.

Hanukkah candles and an Advent wreath.  Side by side. Miracles. Light in the darkness.

We’ve lit the Hanukkah candles (on the Hanukkiah that Melissa’s family gave to us) every year since.  It’s become a cherished part of our family holiday tradition. To be completely honest, there were moments when the lights of Hanukkah and the holy resistance of the Maccabees were able to light the way through the darkness I was feeling when my own faith traditions couldn’t seem to touch my gloom.  This “minor holiday” still packs a punch. Even so, I asked Melissa several times, “We love celebrating Hanukkah. How do we lean into this in a way that isn’t appropriating a tradition that isn’t ours?” She gave us so much space and so much grace: It’s your story, too, Val. The stories belong to both of us.  This was OUR history. Kindle the lights to remember.

And so we have.  

So many times, the tears have come to my eyes again as I looked at the lights of our traditions together, side by side…  It made me remember our evening together. It made me feel closer to my friend.

 

In the last few years Anti-semitic attacks have increased, and while I could never understand the impact of that on my friends, I have grieved with them.  These attacks aren’t new, though they are increasing in regularity and intensity. I was taken aback when Melissa told me about security measures they take at their temple–I take my relative safety at church for granted….  But Melissa has never had that luxury.

 

Last night I read of the most recent attack–”5 Stabbed during Hanukkah celebration in Rabbi’s Home,” the headline read.  

I thought about my friend.

I thought about our lights sitting side by side together. 

I thought about what it means to stand against the darkness.

I thought about what it means to stand in solidarity with people you care about when they are threatened for their beliefs.

The lights of our traditions push back against the darkness.  Our lights together stand even stronger against the darkness.

Schrodinger’s Cancer

This week I had Schrodinger’s Cancer.  (Don’t worry, and keep reading).

I told a friend this and she did some Googling and couldn’t find it and came back and said, “Dang, Val.  You get all the rare cancers.”

So, I told her it’s not actually cancer.  I meant that it’s like the cat: Schrodinger’s Cat–While he is in the box you don’t know if it is dead or alive.  So does this mean it’s both dead and alive?  

(And I thought I was a bad pet owner for letting my cats go outside when they want).

 

I had scans this week.  A super special one. I mentioned it on Facebook because it’s honestly, pretty freaking cool to be literally radioactive for a while.  I got a super fancy scan that detects super fancy cancers like Neuroendocrine Tumors, which is what I had previously. As usual I geeked out on how the actual test worked–with radioactive half lives and Positrons annihilating electrons and that annihilation actually being what gives you the picture.  All of that I could say out loud without betraying much anxiety.

What I could not say out loud, save for to about two people, was that as I geared up for the scan, had the scan, and waited for the results I felt like I had Schrodinger’s Cancer.  Maybe it was there, maybe it wasn’t. I wouldn’t know until the phone call from my doctor.


When I lay in the scan, my hands pressing into my thighs as hard as I could so that they wouldn’t move, my body got moved up through the donut-shaped tube in 4 minutes increments.  It started at my head and went down to my thighs (“eyes to thighs” is the sing-songy lingo). As the different parts of my body were in the active part of the scanner, I thought about what recurrences and mets could be lurking.  Head and neck–the original site of the tumor… What will the nodule that we think is a lymph node on the other side show? Neck–Scans from NIH indicated I have a spinal hemangioma about which they said, way back then, “metastasis could not be ruled out.”  Would it be ruled out this time? Lungs…. They’ve been kind of touchy lately, could I have mets there? Abdomen/pelvis. Oh good. We’re looking at my Adrenal glands. That’s where Pheos show up. Do I have one there? I had a blood test result come back high for the first time since I’ve been being tested…  Was something hormonal being secreted by a lurking tumor?

I breathed and I told myself it was just a time to practice mindfulness and I counted my breaths and I also counted the portions of my body and imagined all these scenarios…

And then it was done and all that was left was the waiting.  Me and my Schroedinger’s Cancer just hung out for the rest of the week.

 

At different times throughout my days I wondered, what would next week look like?  Would it be life as normal… or life where I am scrambling with appointments and making plans and dealing with “the C word” again?  Would I be facing another holiday season with the shadow of cancer in my body? Would I be trying to find ways to be straight with my kids about what was going on in Mom’s body without scaring them too much?  

I tried really hard to be “chill” about it all.  And I was… except for in the inbox of my best friend in the world.  That’s where it felt the most ok to whisper out loud that, even with the likelihood being that no tumors were lurking, during this time of uncertainty while I waited to know for sure, I. Was. Scared.

 

Today the Patient Portal notes dropped and I went over them with a fine tooth comb.  I had some questions, I always do. That nodule on my left carotid is still hanging out and uptakes slightly, but hasn’t grown any in 8 years and reactive nodes DO uptake slightly and it’s considered “within normal ranges”.  So I won’t freak out, I won’t freak out.

Then Doctor D’s nurse called, the same one that I literally went to battle with to try to get this darned scan even authorized and she said, “It all looks great!”

And that was it.  Schrodinger’s Cancer wasn’t there anymore.  

 

I won’t have a scan again for three more years.  I am grateful I don’t do this every year. Scan time is the time when I really actually feel again like someone who went through what I did 9 years ago.  It was this time of year 9 years ago that we were going to weekly appointments at UW with the incredible High Risk OB doctor who delivered Alaine without me pushing.  It was this time 9 years ago that we waited to hear when I would be scheduled for testing and surgery at the NIH. It was this time 9 years ago when I held my breath. When I went to sleep every night knowing I had a tumor and being grateful, but scared, that we couldn’t do anything with it until my baby was on scene.

I didn’t have chemo or radiation after my surgical resection which makes the whole thing feel less cancery, both for me and for others that hear about it.  But for 9 long months I had a rare tumor on my carotid artery that was wild enough to merit a trip to Maryland and the NIH to be dealt with surgically.

 

The times I sit again with the fear and uncertainty again the most are scan times.  “Scanxiety” times. The waiting to see if all is still well times. It’s supposed to be well.  There is a low incidence of recurrence. But there is recurrence nonetheless–sometimes decades after the initial tumor. 

So we scan, and we test, and surrounding the season of scans I have Schrodinger’s cancer.  

I hold my breath until I get the phone call saying that I can breathe out again knowing that until next time….  I can rest in the words, “Things look good.”

 

Thank you God.  Things look good.

Good Friday

“NO!   Death FIRST!”

It doesn’t even phase my family anymore when we drive by the Christian school in our town, and I shout those words.  Their marquee has read, “He is risen!” for weeks.

 

Today, I’m scrolling through my Facebook feed today musing that somehow or another even Good Friday has become a Meme.  How can the event that caused such a totality of darkness become Meme fodder?  “Sunday’s coming,” so say the memes.

And it’s true.  It is….

But first.  First….

 

The Death of Jesus

(Psalm 22:1-31; Mark 15:33-41; Luke 23:44-49; John 19:28-30)

45From the sixth hour until the ninth hour darkness came over all the land. 46About the ninth hour, Jesus cried out in a loud voice, “Eli, Eli,f lema sabachthani?” which means, “My God, My God, why have you forsaken Me?”g

47When some of those standing there heard this, they said, “He is calling Elijah.” 48One of them quickly ran and brought a sponge. He filled it with vinegar, put it on a reed, and held it up for Jesus to drink.

49But the others said, “Leave Him alone. Let us see if Elijah comes to save Him.”

50When Jesus had cried out again in a loud voice, He yielded up His spirit.

 

First there was death.  First the light of the world was extinguished.  There was darkness.

I have always struggled with what I was taught growing up–that “God turned his back on Jesus.”  I was comforted by other theologians who believed otherwise.  They explained that “My God, my God why have you forsaken Me?” was simply the first line of Psalm 22 and in a very Jewish way, Jesus was invoking those words…  Words that spoke prophetically about what he was experiencing in that moment and a Psalm that ultimately ended in hope.

 

This year what strikes me as important is this:  Perhaps Jesus felt like he had been forsaken. I don’t want to turn my back on Him in that by reassuring myself.

 

At 38 years old faith has been a full out wrestle for a long time.  I am not sure how to approach these events of Holy Week except to know that they are Holy.

But still, I yell, “Death First,” when I see “He is Risen,” during Lent before Easter has arrived…

Because the darkness needs a minute. 

 

We are a people who rush people to their happy endings.  We can’t rush this story.

God died.  The creator incarnate breathed His last.

The world quaked.  Darkness covered the land.

The people standing there scoffed at his ending

Or despaired

Because

Hope Himself…

Died.

 

For 3 days that was the end of the story.

 

Yes, Sunday is coming.

But it’s not here yet.

 

On my “Fridays,” on the darkest days…  On the days when hope seems to have breathed Her last, I don’t need people rushing me to a happy ending.  I don’t want people asking me to “see the bright side.” I can’t stand people telling me that “It all happened for a reason.”

I need people who pull up a chair next to me

And simply…

Feel the darkness.

 

More than a Meme….  More than a hastily issued, “Sunday’s coming,” Good Friday to me is that.

May you be brave enough today and on the Fridays you encounter (whether your own or someone else’s) to pull up a chair and feel the Darkness.

To Hell and Back

 

Remember the movie What Dreams May Come?  I was always struck by the power of Chris journeying through Hell to bring someone he loves back.  That has been an image of the highest form of love for me since I first saw the movie.

I never thought I’d have the chance to make such a journey myself.

If you ask the parent of a kid with OCD what they said when they first got the diagnosis, almost to a person the answer will be, “Have you seen my kid’s room?  They CAN’T have OCD!”

This is because OCD is so terribly misunderstood in our culture.  It’s thought of as that disorder that people have when they want things to be clean and organized.  “That’s the handwashing thing, right?” we hear a lot.

Ordering and hand-washing are often part of OCD, but they are far from the totality of the disorder.

A fuller picture would have to include how debilitating it can be–how it can hijack, not only a person, but an entire family.  It would have to give weight to the fact that hours and days of a person’s life can be lost to obsessions, and compulsions. It would have to include how illogical it is….  How the obsessions that can take over a person’s mind don’t make sense even to her, and yet she can’t ignore them.

It would have to include how terrifying it is when aggressive obsessions or sexual obsessions take hold….  The terror of being a person who believes that you could kill someone just because you didn’t perform a ritual perfectly, or touch something exactly right.  The sticky images that get stuck in a person’s head of her loved ones perishing in a fire. The belief that because you thought that someone would die, that they will.

It would have to include the mental anguish that can make a person want to die to escape the pain.

This is the Hell that is OCD.

I stood in the road one day after my daughter tried to run away.  I was doing all I could to be an immovable force. All she knew was that she wanted to escape.

When you are 11 and you want a feeling to stop sometimes the only words you can come up with are, “Mama, I just want to die.”

And then, because OCD is OCD those words can be followed by terror.  Terror that because you said them, because you thought them, that you will die.  

This happened to my daughter over and over again.

~~~

We arrived at IOP after over 4 years of treatment.  For so many people the journey of OCD treatment includes seeing counselors and psychologists who don’t know enough about OCD to treat it skillfully.  We were lucky that pretty quickly into our journey we found an expert and he kept seeing us each time OCD crept up to a level that was unmanageable. Over four years in, the cycles of crisis were coming closer together and he leveled with us–this is going to need Intensive Treatment.  You should consider a Residential Treatment Facility. That took our breath away.

A few months and another round on the crisis cycle later and he said, “She could be part of our Intensive Outpatient Program.  I think that could be our best shot.” And so we signed on.

Andy was gone on a boat when I formally told Dr. Wiegand that we wanted her to attend the IOP.  The IOP was kind enough to wait for him to return before my daughter started attending. We determined that the drive from Oak Harbor to Seattle was too difficult to do every day on top of the exposure homework my daughter would need to do.  Dr. Wiegand and a social worker on base helped us to figure out lodging options. In the end we split time between two facilities that serve families enduring medical treatment.

It turns out, there are a lot of logistics to nail down before you start a journey to hel

~~~

If you pressed me to sum up IOP in one phrase the words would be “Upside Down World.”  The first week we were there kids were saying swear words and sex organs out loud multiple times a day as part of their homework.  Kids were asked to do homework and tests in highlighters, to break rules, to lie, to eat food off of toilets and shower floors, to forego handwashing.  Kids watched horror movies, and scary TV shows.

We began celebrating the oddest things, “My daughter went 5 days without showering this week!”  We all cheered. Then we looked at one another and laughed.

We deconstructed our parenting.  To a person each of us had seen our child go through intense distress and as a parent all you want to do when your child is in intense distress is to make it go away.  Unfortunately, often our attempts to do that make OCD grow bigger instead of smaller. We learned to withhold reassurance. We stepped back and watched our kids, many of whom were screaming, yelling, and sobbing for extended periods, contain their own explosive emotions.

We unlearned what all the parenting experts had taught us and what all of our maternal and paternal instincts had led us to do for so long.

And our kids?  Our kids fought like hell.  They did an assessment at the beginning of the program and ever 4 weeks after, that allowed the therapists to essentially catalog their worst fears.  Then, they methodically faced them. Each child would take on the things that caused the most distress, one by one, and learn to sit in the discomfort to “Ride the Wave,” as the therapists explained it.

I don’t know many adults who have catalogued all of their fears and methodically faced them.  But my 11 year old did.

Don’t get me wrong, the IOP program tries to make this process as fun as they can.  We spent large parts of every day clapping and even laughing. OCD is absurd and laughing about that absurdity can be healing.  The kids in the program realized they weren’t alone and they realized they had other people fighting alongside them. The parents found the same to be true.

I realized quickly I was part of an elite club–the club of parents who HAD moved heaven, hell, and earth to help their child find healing and wholeness.  The club of parents who would literally follow their child to their darkest hell and then journey out of that darkness beside them. It’s important to note that my “Where Dreams May Come” analogy breaks down in a significant way.  In the movie Chris journeyed to hell and brought his wife out. In this OCD IOP treatment reality, parents journey with their kids to hell and then watch THEM claw, and scrape, and crawn, and eventually stand up and walk out on their own.  We are merely companions.

~~~

In a few hours, my daughter and I will go to our last day of treatment at IOP.  My daughter will listen to the words of those who have traveled with her, and those who have been her guides: the amazing therapists who taught her the skills, who sat with her, cheered her on, and helped her believe that within her was a force so powerful that it could shout down even her most relentless demons.  Then she will take us on a journey. She will walk us through what she has experienced over the last 13 weeks.

We’ll eat cake.  We’ll laugh a lot.  And then we’ll go home.

I can’t tell you what an honor it is, what a JOY it is, actually, to emerge from this day having journeyed with my daughter to the darkest regions of her mind.  I can’t tell you how proud of her I am–how teary, blubbering cliche Mom I am when I look at her.  

And if I’m honest, while I tell you that, I’ll also tell you this.  I’m proud of myself too. I am proud that I was willing to journey to hell with my daughter.  I am proud that I was willing to unlearn what I had always known about parenting. I am honored to have put syrup on my hands, and read scripts, and stood beside her as she fought each and every one of her fears.  

We are warriors she and I, and today we taste victory.

 

 

Porch of hearts

I woke up this morning and read the headline about the shooting at the Synogogue in Pitsburgh. All I wanted to do was to pull up a chair on the porch of my friends who are Jewish so that I could cry, or rage, or be quiet with them. I wish they could know that essentially that’s what my heart did all day.

I feel like that’s where I am on a lot of the world this weekend. There is so much pain and chaos swirling. There is so much hatred being legitimized and stirred. There are false fears being stoked which are making real fears into reality.

And I don’t know what to do except to pull up my chair and sit with those whose hearts are shattered by it.

So many of my friends are in the Christian community, and so many of my friends are white, and straight, and I think for us it can feel like not much changes in the day to day. But for people who don’t look like us, or pray like us, and for people who are in the LGBTQ community, the things that are happening today aren’t just talking points or rhetoric. They are threats. They are real, tangible, terrifying things that are turning their worlds upside down. Some of what is doing that is straight up policy from our government right now. And some of it is language and actions that have been not just tacitly accepted by looking the other direction but actually encouraged over the last few years. Our friends are hurting. We talk about mourning with those who mourn and weeping with those who weep. Now is the time.

And after that “now,” comes the part where we go beyond thoughts and prayers and act. We vote. We write to our representatives. We engage in conversations that might change the way we view the world. We listen.

Friends, I am pulling up my chair and sitting on your porch. I will weep, or rage, or sit in silence with you. And I will stand with you and for you in all the ways I know how to as well.

Dear Navy–They Say It’s Your Birthday…

In all seriousness, to the men and women who serve in the U.S. Navy, I am so grateful to you and I celebrate YOU everyday–not just today. Thank you for the sacrifices you make, thank you for the work you do, thank you for the living conditions you cheerfully (most of the time) endure, and know that even with this heavy dose of snark, my love for YOU ALL is boundless.

With that said, my slightly snarky salty Navy wife message on the 243rd birthday of the U.S. Navy:

Dear U.S. Navy,

How about we hold off on celebrating your birthday in person for a few months because “A Day is just a Day on the calendar!” after all? I’m sure we’ll be together next year… or maybe the year after that??? Hrrm…, Well… I guess we’ll just have to see….

I’m sorry you didn’t get the birthday care package I mailed you. It must have gotten lost in the mail or damaged when it was being transported out to the ship….

What?! The card isn’t there yet either? Give it another month or two. I guess the mail system just hasn’t caught up to where you are in the ocean yet…

And the happy birthday email didn’t go through? Oh, silly me. I guess coms are down AGAIN and you all have gone dark at just the *wrong* time. I know how that feels…

How about this… . the next time you are in port, we’ll light some candles on a cake and show it to you via pictures on Skype or Facebook video. No you won’t actually be able to taste, or touch, or smell the cake, but “We get to Skype all the time,” and that makes it all better, after all!

Since these celebratory days are so fluid, I hope you’ll understand that we just have to keep a stiff upper lip, put on our big girl panties, and “keep calm and carry on!”

After all… that’s what Navy families do…..

Dear Parents,

Dear friends who are parents:

You are rocking it. We live in a society that is hell-bent on telling parents just how wrong they are doing it, how dangerous and harmful every choice they make is, and how the downfall of society lies squarely on the shoulders of the current crop of parents at the helm.

Every time I look around I see parents putting it all on the line for their kids. I see parents who are praying and sitting through the heartache of pain as they fight for their child in some way or another. I see parents doing research into the wee hours of the morning that makes them able to be an expert on their child and to advocate for them with wisdom and clarity.

I see parents making educational choices that are right for their kid whether that’s public school, homeschool, or private school.

And I see parents who are exhausted, tired, frayed around the edges, and just need a break who nevertheless say–It’s all worth it for these little people that I love.

I spent a few minutes this morning reading through one of “Those Facebook Threads” where people come from all angles to shame and berate parents. And I just couldn’t disagree more.

The parents I see every day CARE SO MUCH and TRY SO HARD and do both in a landscape of pressure and few concrete answers.

And for once, I wish that was seen.

So I am seeing it. And saying it. And putting it here today.

We are rocking it. And the people we are raising will change this world for the better because of it.