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