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

LAST DAY TO ORDER

Today is the LAST DAY to order #TEAMJUDAH t-shirts and car magnets!
We are taking orders for shirts and magnets through today. Click here for more info on shirts/sizing/magnets/pricing
Email teamjudah@thackerpack.com with your name, address and what you would like to order. If you want a bracelet, there are still some in the office! We hope to mail/deliver everything by May 21st, before we break for the summer.
When we decided to make the shirts and magnets, our hope was to see people ‘wearing their love’ for Judah. That as we drove around town, walked through the grocery store, we would see #TEAMJUDAH everywhere! Already, as we see people wearing the free bracelets, we are encouraged and Judah lights up. He knows those people are on HIS team!
Please forward this info to anyone you’d like. We would love to see #TEAMJUDAH all over town!
Thanks💓

Post Surgery Notes

So he’s back in his room and looks pretty rough but I cannot express the joy to lay my eyes and hands on him!
They weaned his sedation to do a neurological exam. All limbs moved, pupils are slow but reactive. They said that is ok considering he is post op and highly sedated.
He will remain intubated and sedated until after the MRI tomorrow. They said if he can handle it (pray he can) they will turn the ventilator off and let him breath on his own tonight.

Judah had a reaction to a pain killer and was fighting the ventilator. The medical team was calm and fast and got him breathing again. He’s back on medicine that worked before. Seems to be good now.
Just came up to take him down for a 2 hr post op MRI. They will be looking at how the brain is reacting now that the tumor is gone, fluid movement, swelling, etc. We still aren’t sure if they will extubate him later today or not. We are praying they will at least try…
He has been moving a lot today, arms, legs, neck, opening and closing his eyes. He’s drugged enough to not feel anything and is mostly out of it. He did respond to my voice when I got close and talked to him, opening his eyes and reaching for my face. That’s one of the reasons we are hoping he will be ready to be extubated. We want to talk to him and hear him make some noise too.
Back from MRI. There is still a lot of swelling in the brain stem so they have decided not to extubate yet. They said they will reassess Sunday. 
Other than what the MRI showed, he seems to be doing well.
Pretty disappointed that he will be sedated and tubed for 2 more days.