on birthdays, memory, and the wisdom of others

September has come and gone. September. The month Judah was born. The month I became a mother. And 4 years later had Camilla Kate. Brother and sister almost sharing a birthday. They were born 1 day shy of being exactly 4 years apart. In fact, Camilla Kate came into the world just 2 hrs and 33 minutes shy of September 2nd, Judah’s birthday.

The month is always filled to the brim with celebration cause that’s how we do birthdays in our family. And every year, as their birthdays approach, I get a distinct ache. Not painful so much as just my body reminding me of “feelings” — those same anxious and elated emotions that were born with my babies. Until 2019. When a new ache joined the others. A hollowness. For the child I grew, birthed, and watched become a sweet and brilliant human. And then die. Because this year, Judah should have turned 11. But instead of planning a joint birthday party, as Judah and Cricket always had, I planned for just one. I put on the happiest, bravest face I could muster. I cheered my beautiful daughter on, her eyes locked on mine, as we sang happy birthday to her and watched her blow out her seven candles. And in the chaos of cake cutting and hugs, I slipped out to grieve the one I didn’t get to lock eyes with and sing to.

When you have a chronically ill child, a primary task becomes finding ways to delight in your healthy children while a storm of sadness, appointments, and fear whips around you. Matthew and I have been trying to learn that skill since 2013 when Judah had his first brain surgery and woke unable to talk or move or swallow. Cricket was 10 months old, staying with my sister and her family just down the road from the hospital. While we waited for a smile, a word, controlled movement from Judah, Camilla Kate was learning to crawl for Aunt Bam. Siblings learning to move at the same time, videos texted back and forth to connect them. Forced to choose one child’s milestone over another. Judah won out and my heart felt like it was tearing in half.

There is a sharp physical memory connected to those days. That longing and mental fight, nausea, panic still rushes back when I cannot be two places at one time. Judah said “momma” for the first time after his brain surgery, on my birthday. It is still the best birthday present I have ever received. And because of the significance of that moment in time, my birthday is no longer just about me. It is forever tied to the euphoria of hearing Judah’s little voice utter my name.

Most people have had the experience of hearing a song and instantly being taken back to a moment in time when that song meant something special. Smell does it, too. When I smell ChapStick Original (the black label one), I think of my Iney and Big Daddy and am transported back to their house. I’m not even sure why, but there it is. Apart from our five senses linking us to memory, I am beginning to realize a profound truth, for me, anyway. My body remembers the dates of events and traumas before my mind does.

This week has been one of the heaviest I have had since Judah died. I began crying Saturday and could not get control of myself. Sunday we spent the day with family and that made things bearable. But I could feel a weight that wasn’t lifting. I felt like I was suffocating. By Tuesday I was a complete disaster. I could not get Judah’s image out of my head. I could not stop hearing his voice. The longing to hold him, kiss his forehead, talk to him, was so intense. The only escape was sleep. And I tried. Sleeping is difficult when, in order to sleep, I have to close my eyes. And in doing so, am faced with the thing I’m trying to run from. As I drove home yesterday, I began to weep again, the phantom feeling of Judah’s hand in mine. I chose to pull the car over. As I searched the many compartments of my bag for a hankie, I thought, “why has this week been so emotionally exhausting?” Then an idea. I pulled up our calendar on my phone and scrolled back at this exact week in 2018. Sure enough, October 14th, 2018 Judah was very, very sick. By October 17th, 2018 he was hospitalized due to swelling and horrific headaches he could find no escape from.

My grief came into focus.

I remember seeing the MRI and hearing a Dr tell me he was going to die and all we could do was keep him comfortable. That his tumor had grown more and the swelling was too much for his skull. And I remember the feeling of my body collapsing on the floor and a nurse taking my arm and helping me to an empty patient room. I remember trying to call Matthew but being unable to talk. It turned out, what we were seeing on the MRI was radiation side effects and not tumor growth. The Dr was mistaken. But Judah was in an acute situation and the following days were filled with intense pain.

My body remembered my desperate need to help him. It aches the way it did that day. The tears from a year ago, with an acute addition, streaming down my face today.

The question I have been asking myself lately is this — If my body is keenly aware of my emotional trauma AND it is causing a physical response to that trauma, what kind of trauma responses are my children dealing with? Specifically Camilla Kate. We have no idea what trauma she is struggling with inside. Over the last terrible year, she has learned to use her words. She cries easily and craves attention from Matthew and me. She doesn’t like to be alone, but then again, neither do I these days. When I think about how much I hurt, how little can be done reverse my melancholy, I cannot fathom what she is sifting through. I know this, she has spent most of her life being told “not right now, baby, Judah ____”. She watched her big brother become a shadow of himself. And then all of a sudden, she was the acting oldest sibling. She experienced a shocking role reversal with grace, helping Emmett and entertaining Judah. She said goodbye to her best friend and idol when she was incapable of understanding what it meant to do so. She grew up so very fast and for that I am both grateful and disconsolate. She continues to be the most miraculous thing in my life. Death is too much for little ones. If I’m honest, it’s too much for all of us.

So how do I combat the bleakness of loss? Well this week, I cried in front of my husband instead of hiding. And I let him hold me and not fix it because there is no fixing this. And I texted a few of my people and told them how horrid I was doing at coping with missing Judah. I listened to my body when it told me to hunker down because, as Bob Dylan wrote, a hard rain’s a gonna fall. Last week, my family went away for Fall Break. We went with people we love and trust to the same beach we took Judah to 7 months ago. Returning was purposeful. And it was good for our soul to remember him while encountering beauty, hilarity, and rest. This weekend we are going camping with 3 of our favorite people in the world. It’s a good start.

Sometimes wrapping myself up in grief is necessary. Other times running from it means survival. But these cannot be the only two options. The truth I’m trying to remind myself of is that being present, even during bouts of severe depression, with those who get me and love me, is a prerequisite for any kind of worthwhile life. That’s hard to understand while I’m stuck in my sorrow spiral and wishing Judah was still here so badly I can hardly breathe. But I am lucky to have some incredibly wise women in my life who don’t shy away from hard conversations. A few of them told me yesterday that leaning on each other, and leaning in when someone we love is in pain, is the only possible way to find a path out of the debilitating darkness that grief can sometimes be.

I am thankful to be surrounded by people who miss Judah. People who are not only willing to, but actually seek to lean in and let me lean on them in love.

grief & unexpected joy

Judah has died.

This is not news. He died 1 month ago today. Unfortunately, hundreds of times a day, somehow, my brain rewrites our circumstances and, like our sweet 4 year old Emmett, I think Judah is with the Grandparents or is in his room playing Mario Kart. For a split second I forget. I heard a beeping sound today, a beep that sounded so similar to Judah’s feeding pump, I hopped up and started to walk toward the play room. As I rounded the kitchen counter it hit me, that’s not Judah’s pump. And I am forced to say those words out loud — Judah has died.

The first 2 weeks, Matthew and I walked around like zombies, teeter tottering between screaming sobs and total numbness. Emmett struggled to understand the words we were using: Dead. Gone. In heaven. Not coming back. He strung those words together in sentences, trying so hard to be big, then followed them with a version of the question we all wished we could answer positively –

Judah is dead. He is in heaven. But when God is done with Judah, He’ll bring him back. When is Judah coming home?

His questions were natural. His voice sweet. He wasn’t trying to poke a wound. It reminded me that he really never remember a time when Judah wasn’t sick, in the hospital for days, gone to Memphis for a week every month for a year. Judah being absent from Emmett’s physical presence wasn’t uncommon so of course he was struggling with the concepts we were trying desperately to explain. He just missed his brother and wanted him to come home. We all did — Do.

Camilla Kate, our little empath, became hyper aware when I was struggling to hold it together. On the day of the funeral, she wouldn’t hold my hand as we waited to walk into the service. When the doors opened, my eyes caught a glimpse of the screen, Judah’s name, birth and death date listed as a place holder, and I began to shake. My 6 year old, laced her arm through mine, holding me tightly. Over the weeks, she would notice my silent tears and lay her head in my lap or hug me. Her ability to sense the emotions of others and comfort silently is something most adults haven’t mastered but this 6 year old has. And she is miraculous.

Matthew and I are figuring out how to grieve together, given our drastic personality shifts since Judah’s death. Matthew has found staying busy and entertained, being with people is really good for him. He wants to do things, go places, talk. Which, if you know Matthew, is quite different. As for me, my desire to be with people, talking, feeding and entertaining them has evaporated. I crave solitude. I become overstimulated and exhausted by small talk. I want my home and my people. And before any alarm bells started sounding, I recognize the early signs of depression in me. I have seen my Doctor. We have a bereavement counselor who is fabulous. We are surrounded by people who will not allow us to be swept away or forgotten by this horror. And Matthew and I have each other. For that I am thankful.

Over the last 4 weeks, I searched for the joy — the goodness in Judah’s struggle. I have agonized over the choices we made to fight his cancer. The first time we had to make choices about his medical care, it was easier. His tumor was manageable. It wasn’t likely to kill him. We just had to fight for a year. And he did. And then he was ok. He was healthy and strong. He laughed and played games and swam and jumped on the trampoline and built lego. Millions of seconds strung together, 5 years, where Judah’s tumor didn’t grow, and we lived. Denying the existence of the monster sleeping in our firstborn’s head. Claiming a life for him that was not ours to claim. And then on August 8th, 2018, we learned Judah’s tumor wasn’t manageable anymore.

Judah’s brain tumor was going to kill him and there was nothing we could do about it.

There are moments that change a person. Sitting there, in that Consultation Room at St. Jude, was a moment for me. As the doctors explained what they had discovered and what Judah’s options were, I was searching for answers to unanswerable questions: How is this his life? What are we going to do? How does this keep happening, where the words very rare, unthinkable, unexplained, and now incurable and terminal are attached to our child.

I have asked myself over and over if we made the right choice to put Judah through radiation. To watch him suffer in hopes of giving him relief for a short while. To buy us time to make memories, to love him extra hard. I have tried to think about what his life would have been like if we had opted to not treat. I have asked myself how quickly the tumor would have taken Judah from us?

Unproductive thinking.

Matthew is so patient with me. He listens to me as I try to reason out the unreasonable, thinking myself into a terrible darkness. Then with tenderness, he reminds me of the memories. The unexpected joy. And with his loving prompt, I am able to remember Judah. Not the cancer that took him from us. Over the 9 months we had with Judah, even though he was in pain for most of it, he chose to make them count with his people. He could have disappeared into himself. But that was not Judah’s way. Judah found a few things that brought him joy, that he could do well, and invited everyone to join him. And they did. He helped us all stock up on all the goodness despite our decidedly un-good feelings about losing him. And the last 6 weeks of Judah’s life were magical. He was feeling the best he’d felt in a year when we found out, on April 25th, 2019, that his tumor was growing and he had weeks not months. So we did Legoland, the beach, then home with family and friends. And Judah was spectacular. He laughed and rode rides. he swam and played on the beach. He joked with his sister and brother. He told Matthew and I he loved us a lot. We played the Switch and built Mega Construx Pokémon. He said yes way more than he said no. He was present with all of us. It was as if he was making his best effort to make sure we’d be okay. Which is just like Judah.

At Judah’s funeral, a poem called Don’t Hesitate by Mary Oliver was read. It talks about giving in to unexpected joy. And we are. Emmett building his first solo lego set and proclaiming that he is a Master Builder. Camilla Kate learning to dive. Pop’s Doughnuts. FaceTiming my Memphis kin to watch Women’s World Cup together. Introducing my husband to The Wheel of Time Books and seeing that he enjoys them like I do. Sitting on Judah’s porch in the evenings with friends. These lovely happenings aren’t lost on us. They are the surprising moments of joy in muck of sorrow. We are striving to be more like Judah, who found reasons to be joyful in the worst of situations.


Judah’s Obituary

After fighting brain cancer for 6 yrs, our sweet warrior, Judah, has died at the age of 10. It was peaceful and he didn’t suffer, a small mercy. 
He loved Pokémon, Nintendo, Lego, Superheroes, and Star Wars. He was a steadfast and kind big brother (most of the time😊) and he loved BIG. He made parenting easy and loving him easier. 
Judah made me into the woman I am. He soften all my rough edges and taught me to laugh with my belly.
We do not know what we will do without him. We will grieve.  We will feel sick and want to die ourselves. We will do our best to not suffocate under the utter misery of him not being with us where he should be. We will to keep putting one foot in front of the other, knowing that all we do, for the rest of our lives will be colored with Judah’s imprint. 
And we will keep loving him and our 2 other littles with a fierceness that one only has when they know what it is they have to lose. 

Wendi Thacker, CaringBridge/Instagram – May 24th, 2019

By the skin of our teeth

Happy New Year — late. It’s January 29th and the Thacker Family is functioning. And that is a major win!

It is very easy for me to get bogged down in the day to day medicine alarm reminders, g-tube feeds, sibling fights, homeschool, blood draws, middle of the night cries of pain, toddler viruses, late night work emergencies, dirty laundry, and snotty nosed, chest colds. We got our first virus of the fall right before Thanksgiving and have not been consistently healthy for more than 10 days since. Between Judah’s brain cancer, chemo, pneumonia, and all the GI bugs, colds, and sinus infections we’ve all fought, I’m honestly surprised we made it through the craziness of the holiday season in tact! But we did make it, if by the skin of our teeth.

 

The holidays are always hectic. And I had been ramping myself for them. Building walls to try to protect my tender heart. Because even if you took away all the sickness we had to fight through, we were already looking at a hell of a emotionally trying season. The weight and very real possibility that this would be our last Thanksgiving and Christmas with Judah.

So we made and ate delicious food together. We hiked, worked puzzles, and talked. We played cards, video games, and listened to music. We laughed and cried. We carved out space and memories. I was often caught off guard by how beautifully our families have learned to live in the awkward space that is both completely joyful and completely broken.

 

In Kaitlin Curtice’s book Glory Happening, she says:

We hold hope and despair, one in each area, and we cradle them close to our chest, because they both have something important to say to every moment.

This sentence struck a chord. A great vibrating, knock me off balance, shake some long time stuck thing loose, chord. Because it is truth. Our truth. Hope and despair. The trick, since Judah’s terminal diasgnosis, is to find the sweet spot where they become 2 equal parts of the whole. And it is a careful balance that I fail at more often than not.

I find myself sniping at my children for being children. My husband has become my favorite person to throw senseless jabs at. But he sees me and refuses to let me ‘be’ someone he knows me not to be. With his gentle coaxing and playful poking the darkness that had covered my eyes begins to recede. And suddenly, the problem snaps into focus. Despair has tipped the scales.

Judah has been off chemo for almost a month. He has been on the new MEK inhibitor for just short of 3 weeks. But He isn’t stronger like we’d hoped. He doesn’t have much more energy. His balance is still bad. He cries easily. His body and heart bear the accumulated scars of a life no child should have to live. And he has a host of new side effects from the MEK inhibitor. The gift of hope comes wrapped in the suffocating fog of despair.

Despair exists because. Because Judah’s pain exists. Because he wants to be himself again. Because Camilla Kate and Emmett want their brother to be the brother they remember. Because Matthew and I don’t get to sleep anymore. Because our family is isolated and lonely. Because we never wanted cancer to define Judah or us but it has. Because no matter how hard our friends and family try, they can’t MAKE their kids truly understand that Judah isn’t ‘their’ Judah anymore. They can’t make their kids want to be with Judah. To play with him where and how he can. To be thoughful and kind in word and deed. Because when Judah loses his balance walking on the playground with his friends, it scares them. They are still little kids and they don’t know how, and shouldn’t have to know how, to stay. So a moment of physical weakness turns into extreme embarrassment and despair for Judah. And all the work it took for us to get him to go, to try, to keep working at it goes out the window. They are kids. And this is too hard. For all of us.

How, with all of that, can we possibly bring things back into balance? To tell you the truth, I have no earthly idea. I know that we have to train our eyes to see joy. And we have to be grateful where we can. So in an attempt to rectify the state of my heart, a simple exercise in gratitude.

 

 

We had a beautiful day yesterday and Judah ventured out into it. I got to hug my Mom yesterday. My nephew thought about Judah and how to get him moving in a fun way and told me about it and it worked. Camilla Kate and Emmet have been playing with superhero toys everyday, for hours, instead of watching tv. The reminder alarms on my phone are actually reminding me to do the thing I set the alarm for in the first place. Matthew still reaches for my hand when we are close. One of my sisters has started reading my kids a bedtime story via FaceTime 1x a week and it is an utterly joyful experience. I got a new gas stove. Judah is coming off a bunch of medicines he’s been on for almost a year. My Sonos speakers are magnificent. The snuggles Emmett is giving because he is sick are oh so lovely. Camilla Kate loves art and is forever drawing, painting, and writing cute notes. Classical music played with banjo (Béla Fleck) and mandolin (Chris Thile) is all the things. I adore all of 4 of my sisters and they are my best friends. I got to go walking with a friend recently and it was nourishment to my soul. Matthew is writing music and woodworking again and the products are crazy good. MEK inhibitor protocol has started and Judah’s St. Jude team of Dr’s and Nurse’s are beyond astounding at caring for him and us. Mimi’s (Matthew’s mom) cancer isn’t as bad as we initially thought and she is beginning to get her energy back. It’s almost Spring!

I cried while typing the majority of this blog, feeling so overwhelmed. Halfway through that gratitude list, my spirits were lifted. Gratitude is a powerful thing. Hope and despair have become balanced again.

If you’re the praying type:

  • Judah’s still in pain everyday
  • The MEK side effects lessen
  • That Judah doesn’t get any of the disqualifying side effects that will kick him off the MEK
  • That despair doesn’t win out most days
  • That my kids feel loved and seen
  • Judah gets stronger so he can walk about without falling down
  • Emmett kicks this virus that has had him running a fever for 6 days now
  • Mimi’s lymphoma stays in check
  • Our trip to Memphis in a week goes well and we get great family time

Not where we thought we’d be and that’s ok

One month ago today, our family got packed up and headed home from St.Jude. We thought we were going home to LIVE. That Judah was only going to improve and that we would be back in a month for an MRI and to start Judah’s experimental MEK inhibitor treatment. But we were wrong.

When we came here on July 25th, we thought we’d be here for 3 days and stayed 10 weeks. We were wrong then too.

I am a hopeful person. I am optimistic. In fact, I would say I’m drawn to look for the positive in bad situations. I find myself saying, “well at least…” more often than, “of course…”. And I do not like situations where I can’t find the ‘good’ part.

So when Judah started getting minor headaches 3 weeks ago, I chose to look for a less tragic reason than the obvious one: that his tumor was growing again. Were we worried, of course. But we tried not to.

My philosophy is, worrying means you suffer twice. ~Newt Scamander

But after days of minor headaches, he got an terrible one. And it would not go away. We called his Drs at St Jude, who initiated a pain management protocol. We tried all the pain medicines, migraine medicines, fluids, steroids, and nothing touched his pain. After 48hrs, we were told to take him to ETCH for an MRI.

What we learned from that was that Judah’s brain swelling was out of control. On the MRI, we saw NO space. The swelling was pushing on his spinal cord, brain stem, cerebellum, and nerves. The only reason he didn’t have hydrocephalus was because he has a shunt. High dose steroids were administered and Dilaudid was given, which miraculously took his pain away with no other weird side effects!

Matthew was leaving 2 days later for a very important work trip. St Jude decided that since his pain was under control and the steroids were helping, we didn’t need to come right then. But they did want us back as soon as Matthew got home.

We adore his 2 Neuro Oncologists. But more importantly, we trust them. So with frightened hearts, Matthew left for Atlanta and I stayed home, praying nothing happened while he was gone.

And nothing did. And I praised Him for this small mercy. But I also cursed. I screamed and cried. I didn’t sleep. I was so very confused and angry. I still am.

Matthew’s work trip went better than he could have hoped for and he got home a day early, so we contacted Judah’s Drs and headed to Memphis for an undisclosed amount of time. Thankfully, the home we had used before was still open and the family graciously let us move back in.

Our first day back at St Jude, Judah had a St Jude MRI. We waited until the end of the day to find out the results. This time, as soon as the Dr walked in the room he told us the news,  the steroids were working. The swelling was going down. This was encouraging. But Judah had been on steroids for too long already. We needed a new plan. And Judah’s team had 1!

Avastin, the chemo drug Judah had been on before we found out his tumor had transformed, is also used to reduce swelling. It does this by shrinking the vessels in the brain. The Drs tell us they want to start it immediately. When Judah heard, he started to cry. He wanted to go home. And amazingly, the Drs said that was just fine. St Jude is a magical place.

The next day Judah got his first dose of Avastin through his port. The only real concern was his blood pressure. Steroids + Vasoconstrictor = high blood pressure. And Judah’s didn’t disappoint. The next day his blood pressure was 127/91. They redid it. It went up. It was now time to speed taper off the steroids! If his blood pressure continued to stay high, he’d have to go on blood pressure medication. And God knows we don’t need anymore medicines in Judah’s daily regimen.The Drs said they were ok with us checking it and waiting to see how he did once we got him off the steroids.

At our next appt, I asked about the MEK inhibitor. The Drs said they would have it soon but Judah couldn’t start it yet.

WHAT?!?

I started to cry (just a little). I said, but you said it takes 3 months to start working. If we wait until Judah gets off the Avastin (end of December) the MEK won’t start working until March. And that’s the median range for when kids tumor start growing after radiation. They nodded. They knew my fears. They see if everyday.

For those of you with kids with cancer, you will understand the fierce desire to keep your kid on treatment. As long as they are on treatment, you are ‘fighting’. And I did not want to not fight. I told them so. His Drs were so patient. They explained that if Judah has a reaction to the MEK inhibitor, they won’t know if it’s a drug interaction with the Avastin, or the MEK inhibitor itself. And they will have to take him off of the MEK inhibitor. And we really need the MEK inhibitor.

I slouched. Defeated. The worries I try not to let in, crowded my mind. The ‘what ifs’.

While we waited to see how Judah would do tapering off the steroids, we celebrated Halloween at St Jude. Guys, it was more than I could have imagined. Every department dressed up in a theme. And when I say dressed up, these were professional costumes with fully decorated booths. The kids line up and walk (or roll) all over the hospital collecting mountains of candy. And every single one smiled. Magical.

Camilla Kate and Emmett Trick o’ Treated with Rere and Jim, Mikey, Mimi and Papaw. They had a blast.

We found out the next day that the Drs were ok with us going home. We could finish the Avastin at home. As long as all goes well.

And thus far, he has done well. He is off the steroids and has had a second dose of Avastin. His third dose is the Monday before Thanksgiving. He’ll get it every other week for at least 6 wks. And then, fingers crossed, we can start the MEK inhibitor.

Matthew and I are fighting fear with faith. We are surrounding ourselves with the love and support of our family, friends, and community. We are doing the best we can. Struggling. But making it.

PS: it’s very difficult for me to remember to post. I’m sorry.

 

 

and this is hope

There is a difference between pleasure and blessedness. Paul experienced imprisonment, pain, sacrifice, and suffering to their very limits, yet through it all he was blessed.

Dearest tested and tried believer, it is your mission to walk onto the stage of this world in order to reveal to all of heaven and earth that the music of life lies not in your circumstances or external things but in your own soul.

~Streams in the Desert, excerpts

This morning I woke feeling a sense of instability. Equal parts joy, weariness, and expectancy. Judah is low sick. And we got amazing news. If this cancer fight has taught me anything, it’s the beauty of balance. Balancing possibility and expectation. Faith and fear. Hope and suffering. Seeking and resting. And that necessary balance is impossible without Jesus. 

Sunday Judah got a fever accompanied by a hateful cough and we had to take a trip to the Medicine Room at St. Jude. They agreed that he was wheezing a bit but felt comfortable sending us home after fluids and a prescription for a humidifier, rest, and lots of water.  By Tuesday, the cold that sent me to bed for 3 days, feeling worse than I remember ever feeling, had taken up residence in my son’s chest.  It almost delayed an exciting procedure where an ENT inflated Judah’s vocal cord to give him more support and strength. That, along with Botox injections into some of his salvitory glands to reduce secretions, hope to put an end to Judah’s micro aspirations and chronic cough. But through God’s great grace, the Nurse Practitioner and CNA saw my vulnerability and decided to go against protocol and give Judah 24hrs to sound better. And God parted the congestion, like He did for the Israelites with the Red Sea, just long enough for Judah to safely have his procedure. The congestion crashed back down on him, complete with wheezing and sinus headache. And even though Judah was sick, I praised God’s name because He blessed us.

For the last 3 weeks, I’ve woken with a different praise and worship song in my head, embedded and on repeat. Thursday I woke, dreading our long day at the hospital. I was also feeling a sadness because the day before I had finished a 40 day prayer plan that had become part of my day-to-day. It was integral in me finding my way back to the heart of Jesus. And the song Old for New by Bethel Music kept circling in my head, pushing the dread and sadness aside.

V1
What was torn you mend again
You redesign the tatter thread by thread
You take the broken and destroyed
You rebuild, You make whole
Chorus
Joy begins to rise
Hope begins to light the dark
Our God exchanges old for new
Dawn has conquered the night
Death has lost to life
V2
And now we are exchanging old for new
You turn flame into a fire
In you we walk in the impossible
We take Your love into the world
We let our light shine, we let it burn
Bridge
There’s nothing that Your love won’t do
There’s not a mountain with can’t move
There’s power in the blood
There’s power in the cross

I did as I always do, give in to the gift of a song for my day, and claim it.

And then when we got to Judah’s Neuro Oncology appointment and found out the genetic testing results were back.

For those who haven’t been following our journey, St. Jude sent a sample of Judah’s tumor to a lab to be genetic tested, broken down, to look for clues to a possible treatment option. Because in the last 9 months Judah’s tumor has shifted from a low grade Pilocytic Astrocytoma to High Grade Diffuse Intrinsic Midline Glioma, it’s terminal. Radiation has a lot of side effects and his tumor is chemo resistant. The genetic testing was our last ditch effort to find SOMETHING.

And it wasn’t until the Drs said the results were back that I realized I had hung my hope on what they were about to say. And they were smiling.

The test showed that Judah had 4 relevant gene mutations:
K27M
P53
NF-1
NF-1 (variant)

We already knew about the K27M mutation. It’s the murderer. The one no one knows how to stop. The P53 mutation is common in cancer and isn’t targetable. And then 2 variations of the NF-1 gene mutation. This is one the drs seemed excited about. 

They explained that the NF-1 gene is like a controller for cell division. It’s job is to make sure that cell division stays balanced by turning on and off. When it mutates, it never turns off.

My eyes began to blur. 

They continued. The NF-1 mutation is typically a “driver” in tumor growth. But it’s rarely found in High Grade tumors. It’s more often found in Low Grade tumors. So its possible that this mutation is what made Judah’s tumor shift from Low Grade to High Grade.

Now I’m holding my breath

Drs again. And we think we can use MEK Inhibitors to counteract the NF-1 mutation. 

WHAT?!? (Internal dialogue: KIND OF BURIED THE LEAD! Are they saying they have a cure?)

Drs explain. This is ALL speculative. We do think MEK Inhibitors work to counteract the NF-1 mutation, but we do not know if the NF-1 mutation is what’s causing Judah’s tumor growth. And we won’t know until the growth halting effects of radiation wear off. In 3 months to a year we will either see tumor growth or we won’t. And there is literally NO clinical data to look to. Judah is 1 of 3 kids reported to have a shifted tumor kind with the presence of the K27M gene mutation in both tumor types. And the other 2 don’t have the NF-1 mutation, as far as we know. This is NEW territory for us. But when you brought Judah to St. Jude, we wanted to be able to give you guys hope. And this is hope!

So basically we are all stumbling around in the dark together but St.Jude and Jesus have resources like flashlights! I’ll take it. And praise God for His victory over my doubt.

Prayer is a funny thing. I’ve spent the last 8 weeks praying for healing. Praying for more time. Praying for acceptance. For daily joy. For closeness. I have been specific and general. And over time, my prayers have widened. I still pray for the same things but I have learned to pray God’s word. To pray to have his eyes and ears so I can see His hands and hear His encouragements. To pray that His will be done and mean it. To believe that God’s love for me is greater than my unbelief. His peace is greater than my fear. His strength, my only chance for strength. His word, truth. 

I have told you these things, so that in Me you may have perfect peace. In the world you have tribulation and distress and suffering, but be courageous [be confident, be undaunted, be filled with joy]; I have overcome the world. [My conquest is accomplished, My victory abiding.] John 16:33 AMP

This verse thrown around a lot when people are suffering. I’ll be honest, when I see it, I usually roll my eyes. But today when it popped up in my quiet time, I wept. Because God can overcome our cynicism. 2 months ago, when a praise and worship song came on about God being a mountain mover, or how great His love is for us, or worse, how they’ll praise Him even though everything is falling apart, I would roll my eyes and change the station. I would say, what trials have these super famous worship bands been through? When did they have to choose to praise God as their heart broke in half? It Is Well my foot. They don’t know.  

But now, I let loose my hands, close my eyes, and praise Him with the words inspired by God’s nature and goodness. Because recently I had an epiphany. It  doesn’t matter if the writer or singer or friend has been broken and spilled out. What matters is that I believe the Holy Spirit inspires, moves and works in the lives of God’s people for His glory. I must give Him glory in the big and small. For the things I asked for and the things I didn’t.

We praise God that He is showing us His works in this new treatment option for Judah. We praise Him that our hope is stronger than our strife. We praise Him that He fights for our hearts. And if there comes a time when we can no longer see Him working, we will remember His truth, that he is still working.

Other people words are life giving

My older sister, Brandi Kellett, has a blog. She writes on social justice, equality, community, and faith. And she does it with a grace AND force that humbles me. She has also been  encouraging, praying, feeding, and providing (along with many others!) my heart with manna. Enough to get me through today. No more, no less. Today she posted an essay entitled, Han Solo, On Faith and Hope

I have never reposted one of her essays before.  But today, I felt the need to. She talks about Judah in a beautiful way. And she talks about the hardness of hope. Of the fragility of faith. Of the need for Jesus. Because we ALL, in the face of the impossible darkness we live with in this broken world, need Jesus to ‘help our unbelief.’

Politics, opinion, religion aside, I encourage you all to go to her essay and read it.

 

Shore me up

I have been kind of in shock at the way God is confirming that He, in fact, does hear me. I want to clarify up front that God has NOT healed Judah. He has not made his belly pain go away. He has not even consistently deployed His Spirit to speak into the dark, sad, broken places in my heart and comfort me. What He has done is help shore up and mend my questioning and doubtful heart.

It all started two Friday mornings ago. I was doing my quiet time and the verse that went along with the day was Psalm 61:1-2 

Hear my cry, O God; attend to my prayer. From the end of the earth I will cry to You, when my heart is overwhelmed; lead me to the rock that is higher than I.

We had been admitted the day before for possible pancreatitis. Then Friday, Judah had a massive headache after radiation that turned into a Rapid Response scare. Matthew and I were terrified. We kept looking at each other and then Judah, wondering if this was somehow the beginning of the end, already. The drs didn’t help our anxiety because it was obvious they were all very concerned. After 2 hours of multiple drs and teams and tests and checking on Judah’s state, it was agreed that Judah had a bad reaction to a new pain medication they were trying. The reversal agent would cause him more pain so we had to just wait 6 hours for it to wear off and for Judah to stop suffering. I forgot mention, Camilla Kate was with us at the hospital visiting. It was hell. I was overwhelmed with an intense need to be two places at once. I wanted to be holding both my babies, comforting them both for very different reasons. As I prayed for Judah to be ok, I prayed for Camilla Kate to be comforted and protected. And as I was praying, I felt myself sinking into that dark place where I am faced with grieving and comforting at once. I was sinking quickly, listening to Judah scream and watching Cricket hide.Then a prayer came to my mind from that morning. 

Help me release the burdens that preoccupy my mind and keep You at bay. Come near to me!

I repeated it over and over. I started to see. Return to the present. It wasn’t easy and the pain in the room didn’t disappear but I was ok. I prayed that Judah’s pain wouldn’t be more than he could bear. That the pain would would drag us closer to Him. That we could have more understanding and compassion for Judah. That if there was joy to been seen from this, we would have eyes to see it. Then Saturday morning a friend texted me a picture of 2 pages from a book. She told me God had brought the book to her mind and when she pulled it out, the pages were already bookmarked. It talked of pain, disease, prayer, miracles, and joy. A few excerpts spliced together: 

“We prayed that she would not have more pain than she could endure…the prayers never stopped, and the pain never got too bad to be relieved. As far as I am concerned, that is a miracle, corroborated by the doctors. Bethie wasn’t cured. She died. But she was healed. There’s a lot about this kind of healing that I don’t understand…And it helps, when we are praying for others, if we have some understanding of what we are praying about. I can pray better about pain, because I have had severe pain. Whether this my ill fortune or my good, it does help enlarge my capacity for compassion for those in pain…and out of the event in life which seem most negative, positive joys are born.”      

-Madeleine L’Engle, The Irrational Season

I read that text and wept. There are words from that excerpt that were almost exactly in my prayer the night before. God pulling at my heart, whispering “I see you”.

Monday morning’s quiet time started on Isaiah 60:20 

Your sun shall no longer go down, nor shall your moon withdraw itself; for the Lord will be your everlasting life, and the days of mourning shall come to an end.

The prayer that went along with that verse was so timely. 

Help me to see the light at the end of my tunnel. Sometimes I can barely remember what light looks like or what it feels like to have simple joy. Help me focus on You even in the darkness.

Judah was doing much better that evening so Matthew and I took the opportunity to go out to dinner while my Mom hung out with him at the hospital. We talked a lot about having/not having hope for the future. I was leaning in the direction of “preparing myself”. Matthew was incredibly gentle and patient, listening and comforting me, while also laying out where he landed on the idea of hope. Which happened to be wildly different than me. He explained that if we believed that he was going to die sooner rather than later, we would spend the rest of our time left with him, in early mourning. And if we believed he would definitely be healed, we were being purposefully naive and run the risk of minimizing the pain and fear associated with a terminal cancer diagnosis. He proposed that we sit somewhere in the middle. As I cried, he shared the concept of both grieving and being present. That crying and feeling deep sadness for what is happening now and what may happen is normal and good. But sitting in it, living in it, refusing to fight to get out of it, is unhealthy and unhelpful. That if we don’t look for things to be grateful for, little joys, we will miss ALL of it. He reassured me that the way I felt wasn’t wrong. That the suffocating feeling of his ‘last birthday’ approaching was right to feel. And also, that we have to give ourselves time to feel those feelings and then CHOOSE to come back to now. 

This man, that God gave me, knows me so well. Knows how to help and how to pull the yucky stuff out of me. Knows when to push and when to leave me be. And if I’m looking for something to be grateful for right now, he is it! And God used my prayer time that morning and our conversation that evening to nudge my wounded heart toward Him some more.

Wednesday, Judah had radiation and a g-tube replacement procedure. While Judah was down in radiation therapy, our Chaplain came by the visit. He didn’t stay long but the time he spent with me was reassuring and encouraging. I told him that even though Judah’s diagnosis was terminal, we hadn’t given up hope and were still praying for a cure/healing. He nodded and smiled. Then began to tell me about the Parable of the Unjust Judge, which I somehow had NEVER heard or read. And just in case some of you haven’t heard it either, here it is: 

Now Jesus was telling the disciples a parable to make the point that at all times they ought to pray and not give up or lose heart saying, “In a certain city there was a judge who did not fear God or respect man. There was a desperate widow in that city and she kept coming to him saying, ‘Give me justice and legal protection from my adversary.’ For a time, he would not; but later he said to himself, ‘Even though I do not fear God or respect man, yet because this widow continues to bother me, I will give her justice and legal protection otherwise by continually coming she will be an intolerable annoyance and she will wear me out’.
-Luke 18:1-5

This parable struck a chord in me. It is so easy for me to fall into despair when my prayers go unanswered. I don’t want to hope and have faith. I want the miracle and I want it now! But the Bible is clear on this topic. We are told to pray anyway! Matt 6:9-23, 1 Thes 5:16-18, Eph 6:18, Col 1:9, Heb 4:16, 1 John 5:14, Matt 18:20, Acts 2:42, Romans 8:25, Phil 4:6-7, James 5:16 all (and many more) give guidance on how to pray. And so we will continue to pray regardless of the outcome, clinging to the hope that God has unfulfilled promises for us.

A little later, I was perusing Twitter, which is usually not a good idea as it is filled with vitriol, and noticed my sister (twitter.com/expandyourus) had alerted me to a thread. I excitedly navigated there and began immediately to see God’s care for me. The thread was about lament, struggle, and pain. And it was a direct connection to the Chaplain’s words earlier today! 

Just because God never promised us the miracle baby, the anonymous check that magically cover all the expenses, or the physical healing on this side of eternity – It doesn’t mean I’m not still called to ask for them, again and again, humbling myself into what feels like outright naiveté and choosing the terrifying vulnerability of believing He just might do it – all the while submitting wholly to His will and acceptance that He may say no once again.
– Stephanie Tait (twitter.com/joyparadeblog)

God wasn’t whispering or nudging me this time. He was jumping up and down, shouting, “I’m here, see me? It’s me! I see you!” I have spent the last week reflecting on these three very poignant moments. I have talked about them and prayed about them. I have thanked God for His very real presence. His answer to my daily prayer that He would come near to me. And in these moments, day-to-day, woven together in a way that makes it impossible for me chalk them up to coincidence or love of friends, God shows me His hand. His care. God has not answered our prayers for a cure. For healing. He hasn’t said no either. And as a wise man told me last week, God’s will is at work in the 1st hour and in the 11th hour and all the hours in between. We will keep praying for healing. And we will keep submitting to God’s will, while hoping that God’s will aligns with our dreams for Judah!

Just keep swimming

So when I don’t have words, or my prayers feel inadequate, I know God knows the groanings of my heart. He knows my deepest longing — for the Miracle Maker to perform a miracle right here and now, in Judah. That His glory be shown through Judah’s living. Not in his dying. And also that I know, though it hurts, that God’s way are higher than my ways. His thoughts, higher than my thoughts. And it will be His will, not mine, that wins out.

Yesterday was Judah’s day 1 of Radiation Therapy (RT) and he was very nervous. So was I, even though I knew nothing would be different when he came out. Right before they injected the anesthesia, Judah looked at me, with tears prickling in his eyes, and said “Momma I’m really scared”. I asked if I could pray over him and he nodded. I prayed supernatural peace over him. Unconditional love. Safety only God can provide. And then the put in the medicine and he fell asleep. I went out to the waiting room, put on my sunglasses, and wept. 

The thing is, this whole situation is impossible.  Even the bravest, most incredible kid gets scared and wants to run away. To be held and told everything is going to be ok. And I do my best. But it’s not enough. So I went through my list of prayers for Judah.

I hate that he has to go through all this. That those who love him do too. That there is no “everything will be ok” because it won’t. Unless God works a miracle. 

Judah coughed and cried last night. He was in pain. And I didn’t sleep. Mommas don’t sleep when their babies hurt. I’m bone tired. But today is day 2 of radiation therapy and my littles are going to their 1st day of school, in Memphis.

So I got myself up. I helped Cricket get dressed and fixed her hair, like I did every day last school year. Made them breakfast, got their bags and drove then over to Aunt E’s. We scootered/walked to their school. I wanted them to feel loved and seen. My youngest, his 1st ever class, ran to his room and was, as always, ready for whatever! Big smile. My middle, not so much. She cried. She didn’t want “this” school. She misses her home. Her friends. Her school. I did the brave thing and told her it was going to be great. That she would have a blast. That I would see her after school and that I was proud of her. But I knew she wanted Judah. Because her school experiences have been WITH him. Her big brother. Little sister being forced into Big sister role. It’s not right. 

I got back to my car and fought tears. Lost. But not for the reason I should have been crying; my baby going to school for the 1st time. But because of what isn’t happening. And honestly, I’m struggling to find the fiber of hope I clung to yesterday. It comes and goes, my faith – my hope – my strength. And at times it doesn’t feel like the Spirit is interceding for me. It feels like I’m shouting into the void. And I want to turn my back and do it all on my own. But I know I’ll fail. My kids deserve better than that. So I turned on a worship playlist and drove back to our Home Away From Home. I forced myself to do a short quiet time but it felt fruitless. I was distracted. Heart sick.

So today, as Judah gets radiation for a terminal brain tumor, all I can do is ask God to grant us mercy. To heal Judah. To bless us. To be present. To show us His glory. And then keep asking. 

Praise him anyway

God I look to you
I won’t be overwhelmed
Give me vision
To see things like you do
God I look to you
You’re where my help comes from
Give me wisdom
You know just what to do
I will love you Lord my strength
I will love you Lord my shield
And I will love you Lord my rock
Forever all my days, I will love you God
Hallelujah our God reigns
Hallelujah our God reigns
Hallelujah our God reigns
Forever all my days,
Hallelujah
-God I Look to You, Bethel Church

A week ago today, Matthew and I waited with equal parts fear and hope, for news about Judah’s tumor pathology. The next day, our world was shattered and I told God I hated Him.

Over the last week, I have wrestled with my longing for the comfort only Jesus can offer, and my crisis of faith and trust in His goodness and love for me. I have asked myself what it means to trust in God.

Trust is a firm belief in the reliability, truth, ability, or strength of someone or something. To set one’s hope and confidence upon, to be secure fearing nothing.

These definitions don’t lend themselves to trusting halfway. One either has a firm belief or they do not. When we set minds to something, that brings to mind a stubbornness, right? If I set my hope and confidence in God, then that shouldn’t waiver. Does that indicate that I didn’t trust God completely before? I cannot answer that. I can say that in 2013, I trusted God with Judah completely. I believed in His goodness and His vision. I believed He was working to complete a good work in us and everyone that knew Judah. Maybe that was because the Drs told us Judah had an 80% survivor rate. Maybe it was because his diagnosis came at a point in my life where I was diligent with my quiet time, verse memorization, and journaling. Maybe it was because I saw our faith and Judah’s fight bringing people closer to God. I watched my nephews ask hard questions and wrestle with what they knew of the Lord and what was going on with Judah. And they turned to the Lord. I saw God’s glory being magnified. The pain Judah was experiencing, the heart-hurt Matthew and I were living with, seemed to be ‘ok’ because we knew Judah would live and God’s kingdom was growing.

But Judah doesn’t have a life expectancy this time. People all around us are losing their faith in God’s goodness. Matthew and I are clawing to hold on to the belief that God is reliable. Loving. Powerful. We see many accounts in the Bible of God displaying His power and mercy so His glory would be known.

Psalm 106:7-12
7 When our fathers were in Egypt, they gave no thought to your miracles; they did not remember your many kindnesses and they rebelled by the sea, the Red Sea. 8 Yet He saved them for His name’s sake, to make His mighty power known. 9 He rebuked the Red Sea, and it dried up; he led them through the depths as through a desert. 10 He saved them from the hand of the foe; from the hand of the enemy he redeemed them. 11 The waters covered their adversaries; not one of them survived. 12 Then they believed His promises and sang His praises.
Habakkuk 2:14
14 For the earth will be filled with the knowledge of the glory of God, as the waters cover the sea.
Psalm 25:4-7
4 Show me Your ways, O Lord, teach me Your paths; 5 guide me in Your truth and teach me, for Your are God my Savior, and my hope is in You all day long. 6 Remember, O Lord, Your great mercy and love, for they are from of old. 7 Remember not the sins of my youth and my rebellious ways; according to Your love remember me, for Your are good, O Lord.

We are searching the expanse for a hint of God’s glory in all this pain. Every time I take Judah to an appointment, I say ‘Even now Lord. Even now You can show us Your great power and glory. Please. Show us Your glory.’ And then when nothing happens, ‘God, what are you waiting for? I do not understand. Help me understand.’ But I don’t understand. I want to see. But honestly, what could God show me that would make my son’s life a suitable price?

I have begun to talk to God again. I turned on  praise and worship music yesterday. I have opened my bible. I have even read some of it. I am still very angry. Still very sad. Very scared. And I don’t have unshakeable trust in God on Judah’s behalf.

But I am begging, on my face, at the throne of grace that God will spare Judah. That He will grant us mercy. That He will remind us of His love and presence. That He will hear the prayers of His children and grant our request. And I will keep doing that. Every day. Because, to paraphrase my sisters, whatever anger and disbelief there is, in the end, Jesus is the only way out of despair and hopelessness.

How do we make it count?

How do you live in the moment, day in and out, knowing the days you have left are numbered? There are so many movies depicting adults traveling to Europe, climbing mountains, visiting family, learning to do that thing they always wanted to do just before they die, surrounded by family and friends. But they’re adults. And they’ve lived a life. And end of life rarely gets tied up in a bow that neatly. 

How do we make sure that every day is full to the brim with joy for our almost 10 yr old and his younger siblings? Of course that’s a question we should have been wrestling with since our 1st was born. But life gets in the way, right? The first words turn into “you’re too loud”. First steps turn into “go outside and play please”. First bites of table food turn into “just eat your food so we can be done”. And before you know it, their going to college, falling in love, all the things we dream for our children. And the time with them becomes short but sweet. At least that’s what we all hope for when life is flying by at a break neck pace.

When Matthew and I first found out about Judah’s cancer, we vowed to make every moment count. Then, when he started talking again after his 1st brain surgery, we said we didn’t care what he said or how he said it, as long as he did! And then he was 1 yr no growth. 2 yrs no growth. We got comfortable. We settled back into the life of ‘we have plenty of time’. We forgot how precious life is and how lucky we were to still have Judah with us. 3 yrs no growth. 4. And then growth. And more growth. And more. And we kept telling ourselves, the chemo will work. The inhibitors will match. The surgeon will de-bulk. He’ll be fine. Because he was last time. And we wanted more time. We held onto hope even though the specialists were giving us the facts and they weren’t pretty. We asked for specific prayers from 1,000’s of believers. We laid on our faces and begged God to save Judah. To give us more time. To show us His glory. 

But the news kept getting worse. 

And God didn’t show up. This isn’t a rescue story. It’s a heart-rending story of love and loss. 

So back to the questions that won’t let me sleep. How do we as parents make sure Judah lives every day he has left? How do we give him the chance to do and see all this world has to offer an almost 10 yr old? What would he even want to do with the time he has left? Watch TV. Play the Nintendo Switch. Be with his sister and brother. Cousins. Friends. Grandparents. Aunts and Uncles. Do his life with his family. He’s not old enough to know what he’ll miss. Not old enough to appreciate the grand canyon or the coliseum in Rome. His favorite things are imaginary. Pokemon, star wars, video games, Mario, bey blades. He’s still so little. 

He has no idea what death is. We tried to explain but he doesn’t get it. He doesn’t remember burying my grandfather or Matthew’s. And if he can’t get it, how in the world do we explain it to his sister and brother who love him so deeply? They will just miss him and want him to come back. We all will. But they won’t have the tact to not say it. 

It may seem like we’re worrying about things we don’t need to. Like there’s time to figure all that out. Like we just need to go hold our kids tightly and take it one step at a time. But that word — time, it’s limited now. We don’t have that luxury. And we won’t squander what we have left. We aren’t worried. We’re thoughtful and sad and stubbornly prepared to make every day matter.

QUESTION:

If you were almost 10 and could do ANYTHING in the world, what would it be?