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.
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.
An appointment with a pediatric neuro surgeon was made. He told us that surgery wasn’t an option. That Judah’s tumor is diffusing and that makes differentiating between healthy brain tissue and excising tumor tissue impossible. He did say he wanted to do a biopsy. That a biopsy would allow St. Jude to sequence his tumor, look for markers and find a more targeted treatment. But what does no surgery mean? It means our options for treatment just got smaller. And the truth is, we never wanted Judah to have to go through surgery again because of how incredibly hard and heart wrenching it was to watch him relearn shaping and speaking his words, taking steps, concentrating on getting basic things down that no kid should have to do twice. But we would do surgery again if it meant he had to option to fight for ‘himself’ back.
Today we were admitted to Le Bonheur Children’s Hospital. Judah will have a CT scan and MRI for precision measuring to prepare for his biopsy surgery tomorrow. While we are here, the Tumor Board at St. Jude is happening. All of their best and brightest minds will be together to review Judah’s case to try to come up with the best course of action to stop Judah’s tumor from growing more.
It didn’t hurt that his favorite 2 people were with him. Both so thoughtful and sensitive to what he needs. He truly is so blessed to have these 2 amazing kiddos as his bffs! Listening to Berkley (whose parents are Bama/Auburn fans) cheer “Go Orange Team! Go White Team!” was a highlight for sure. That and seeing Berkley and Maddie in Tennessee orange of course! Lucas and Felicity fit right in with Berkley and Maddie. Lucas stuck right by Juda
