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.

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!

Everything is the same. Everything is different

Brooklyn, Brooklyn take me in.
Are you aware the shape I’m in?
My hands they shake my head it spins.
Ah Brooklyn, Brooklyn take me me in.
Dumbed down and numbed by time and age.
Your dreams they catch the world the cage.
The highway sets the traveler’s stage
All the exits look the same.

To be honest, I never got on the Avett Brothers train. I don’t NOT like them. Just never sought them out. So I have no idea what this song is supposed to be about. But as I was listening to a Prime Station, the above song came on. And some of the words struck a chord. 

I wonder if Jesus sees the shape we are in down here? 

When we got invited to St. Jude we were filled with a renewed hope. And then Friday happened. Judah had a MRI and the news was not what we were expecting. His new tumor is continuing to grow. It has taken up the entire 4th ventricle. The original mass from 5 years ago is also growing. Chemo isn’t working. The neuro oncologist didn’t know if surgery would be an option. Surgery? Biopsy? Radiation? Inhibitors? All were mentioned. 

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.

 

Radiation oncology consult was yesterday. We went into that meeting feeling so vulnerable and frightened. Lack of factual information can do that to a person. What we had always heard was that because of where Judah’s tumor is (brain stem), radiation would be the last choice. That it was dangerous. That it could cause cognitive deficits. Physical deficits. New cancer later in life. 

I wish I could say that all our fears were assuaged. They were not. If anything, the hypotheticals made sitting in this awful waiting cycle worse. Because now we know, if the biopsy comes back 1 way, those hypotheticals all of a sudden become reality. We are doing our best to set all the information we learned aside. Store it away with all the other information we have learned over the last 10 days. It will still be there when we need it.

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. 

The biopsy will happen tomorrow and is scheduled for 7:30 AM. We have been told that this is will not be traumatizing for him. That the surgery will take ~2 hours and that if all goes well, Judah will be off the vent and in his normal room right away. He will have normal recovery from anesthesia; groggy, grumpy, sore throat, and that his head will hurt. But it already hurts more than it should. The surgeon said he should wake up talking and walking etc. And that is such a relief to all of us! Before the biopsy, we decided it would be a good idea to cut Judah’s much loved long hair. Surgeons are not barbers. We know this from last time! Judah was very unhappy about having to have his hair cut off but we gave him the coolest hair cut we could think of, considering her had to have the whole back of his head shaved!

The biopsy results will take about a week. And Judah will be in the hospital for the same amount of time. We spend that time trying to be present and also distract ourselves. Food. Conversations. Movies. Switch playing. Snuggles. Kids being kids.

But we are going into this biopsy already wounded. We aren’t in the best shape…dumbed down and numbed. All the options in front us feel like bad ones. We covet prayers. Over the last 6 months, it has become immensely difficult to find words, any words, to pray. We cannot keep asking for God to show us He cares. Asking Him if He sees our suffering. Asking Him to give us a glimpse of His goodness. Because we’ve been begging. We believe that God is providing for us through our family and community. Moving their hearts to love us. Meals. Finances. Encouragement. And it has been more than we could ever say thank you for. Then we wake at 3AM to Judah screaming in pain. And we go to another Dr and they tell us more and more bad news. And then our 3 year old asks his big brother if he is better yet. Our 5 year old asks when we get to go home so she can see her friends and go to Kindergarten. It is all we can do to keep moving forward. We do our best. Smile and squeeze all our kids and say yes as often as is possible. And then hide when the wracking sobs come. The moment passes. We breathe. Matthew looks at me. There is an understanding and “here-ness” shared between us and we collect ourselves and start over. And I think it’s that “here-ness” that I miss from God. I used to feel His presence so keenly. I could feel his heart for me. For Judah. And could see His love for us in the little everyday things. Even when things were bad with Judah (or anything else), He was with me. But that’s gone. In it’s place is a wretched, broken, emptiness. A constant reminder of just how small and alone we are on this Earth. And I want so badly to keep believing that He isn’t finished with this story. That I can trust Him with my heart. With our son, his future, his life. It feels like too far to go. And it’s not because God hasn’t miraculously healed Judah, though that’s what we long for. It is because we feel abandoned and isolated from our Maker. And we don’t know why?

Where is the God who tells us he loves us and has plans for us? The Good Father, our creator. The mountain mover. The raiser of Lazarus. The silencer of storms. The healer of many. 

I don’t know. I wish I did.

Last day of school and 6wk MRI

Judah and Camilla Kate (Cricket) had their last day of school today. It was full of fun and parties and sweet hugs and goodbyes. Thankfully, the co-op family is close and we will still see our friends throughout the summer.
While the kids were at school, I busies myself with cleaning and packing and searching for Judah’s long lost bey blade he “really needed to show to Gabe!” *Insert exasperated 9yro voice* Packing for Nashville isn’t usually very hard, but this time, since he’ll be doing chemo there tomorrow, I had to pack for chemo day too. It was hectic and frustrating and I did not find the bey blade though I searched for almost 30 dedicated minutes?
As I loaded the car, I kept running through my mental list of must haven’t items knowing I would forget something. And I did. Matthew and my toiletries…of all the things to deal with on chemo day, stinky breath and armpits was not one of them. We weren’t far from home when I realized it so we went back!? My mother has always told me to make a list, put it the car when you think of it…I’m a great listener ?
After dropping off Emmett at Mimi’s, meeting Mumzy to get her lasagna, we finally got on the road.
God has blessed us with beautiful weather and traffic and we are about to pull into Bam’s as I type this. But before I leave you, I want to request a few specific prayers:
1) That Judah’s rocks his MRI at 7est and is very still so the picture is crystal clear (he does them awake bc he’s a rockstar!)
2) That the MRI shows that the chemo is working and Judah’s tumor has stopped growing (or at least shrunk)
3) That tomorrow’s chemo (begins at ~10am) goes by quickly and that the nurses are kind.
4) That Judah doesn’t get sick during or after chemo.
5) That God continue show us His enormous love and care whether through continuing to provide for our every need (And He has!) or healing Judah completely or both!Matthew and I cannot thank you all enough for showing up and showing out for the Thacker pack. We are in awe at how The Mover of Mountains has battled for us through y’all.

Orange and White Game and fun with friends!

The Thacker’s got to take 2 of our favorite families with us to the sky box for the University of Tennessee Football Team’s Orange and White Game. I was nervous about how Judah would feel after chemo, knowing it would be a long day. But he did great!

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 Judah’s side, which I find to be one of the most endearing and Spirit filled actions. That kid is special!


We ate great food, the kids had about 3 ice creams each and a bunch of popcorn, and we adults had a great time just being together in a great venue. Neyland Stadium is fantastic!

Also, I totally geeked out when I saw Grant Williams in the main area. I was so thrilled that he was such a kind guy. he signed Judah’s popcorn box and took a picture with him! He didn’t have to do that but I am so grateful he did! Go Vols!