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.

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

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.