and this is hope

There is a difference between pleasure and blessedness. Paul experienced imprisonment, pain, sacrifice, and suffering to their very limits, yet through it all he was blessed.

Dearest tested and tried believer, it is your mission to walk onto the stage of this world in order to reveal to all of heaven and earth that the music of life lies not in your circumstances or external things but in your own soul.

~Streams in the Desert, excerpts

This morning I woke feeling a sense of instability. Equal parts joy, weariness, and expectancy. Judah is low sick. And we got amazing news. If this cancer fight has taught me anything, it’s the beauty of balance. Balancing possibility and expectation. Faith and fear. Hope and suffering. Seeking and resting. And that necessary balance is impossible without Jesus. 

Sunday Judah got a fever accompanied by a hateful cough and we had to take a trip to the Medicine Room at St. Jude. They agreed that he was wheezing a bit but felt comfortable sending us home after fluids and a prescription for a humidifier, rest, and lots of water.  By Tuesday, the cold that sent me to bed for 3 days, feeling worse than I remember ever feeling, had taken up residence in my son’s chest.  It almost delayed an exciting procedure where an ENT inflated Judah’s vocal cord to give him more support and strength. That, along with Botox injections into some of his salvitory glands to reduce secretions, hope to put an end to Judah’s micro aspirations and chronic cough. But through God’s great grace, the Nurse Practitioner and CNA saw my vulnerability and decided to go against protocol and give Judah 24hrs to sound better. And God parted the congestion, like He did for the Israelites with the Red Sea, just long enough for Judah to safely have his procedure. The congestion crashed back down on him, complete with wheezing and sinus headache. And even though Judah was sick, I praised God’s name because He blessed us.

For the last 3 weeks, I’ve woken with a different praise and worship song in my head, embedded and on repeat. Thursday I woke, dreading our long day at the hospital. I was also feeling a sadness because the day before I had finished a 40 day prayer plan that had become part of my day-to-day. It was integral in me finding my way back to the heart of Jesus. And the song Old for New by Bethel Music kept circling in my head, pushing the dread and sadness aside.

V1
What was torn you mend again
You redesign the tatter thread by thread
You take the broken and destroyed
You rebuild, You make whole
Chorus
Joy begins to rise
Hope begins to light the dark
Our God exchanges old for new
Dawn has conquered the night
Death has lost to life
V2
And now we are exchanging old for new
You turn flame into a fire
In you we walk in the impossible
We take Your love into the world
We let our light shine, we let it burn
Bridge
There’s nothing that Your love won’t do
There’s not a mountain with can’t move
There’s power in the blood
There’s power in the cross

I did as I always do, give in to the gift of a song for my day, and claim it.

And then when we got to Judah’s Neuro Oncology appointment and found out the genetic testing results were back.

For those who haven’t been following our journey, St. Jude sent a sample of Judah’s tumor to a lab to be genetic tested, broken down, to look for clues to a possible treatment option. Because in the last 9 months Judah’s tumor has shifted from a low grade Pilocytic Astrocytoma to High Grade Diffuse Intrinsic Midline Glioma, it’s terminal. Radiation has a lot of side effects and his tumor is chemo resistant. The genetic testing was our last ditch effort to find SOMETHING.

And it wasn’t until the Drs said the results were back that I realized I had hung my hope on what they were about to say. And they were smiling.

The test showed that Judah had 4 relevant gene mutations:
K27M
P53
NF-1
NF-1 (variant)

We already knew about the K27M mutation. It’s the murderer. The one no one knows how to stop. The P53 mutation is common in cancer and isn’t targetable. And then 2 variations of the NF-1 gene mutation. This is one the drs seemed excited about. 

They explained that the NF-1 gene is like a controller for cell division. It’s job is to make sure that cell division stays balanced by turning on and off. When it mutates, it never turns off.

My eyes began to blur. 

They continued. The NF-1 mutation is typically a “driver” in tumor growth. But it’s rarely found in High Grade tumors. It’s more often found in Low Grade tumors. So its possible that this mutation is what made Judah’s tumor shift from Low Grade to High Grade.

Now I’m holding my breath

Drs again. And we think we can use MEK Inhibitors to counteract the NF-1 mutation. 

WHAT?!? (Internal dialogue: KIND OF BURIED THE LEAD! Are they saying they have a cure?)

Drs explain. This is ALL speculative. We do think MEK Inhibitors work to counteract the NF-1 mutation, but we do not know if the NF-1 mutation is what’s causing Judah’s tumor growth. And we won’t know until the growth halting effects of radiation wear off. In 3 months to a year we will either see tumor growth or we won’t. And there is literally NO clinical data to look to. Judah is 1 of 3 kids reported to have a shifted tumor kind with the presence of the K27M gene mutation in both tumor types. And the other 2 don’t have the NF-1 mutation, as far as we know. This is NEW territory for us. But when you brought Judah to St. Jude, we wanted to be able to give you guys hope. And this is hope!

So basically we are all stumbling around in the dark together but St.Jude and Jesus have resources like flashlights! I’ll take it. And praise God for His victory over my doubt.

Prayer is a funny thing. I’ve spent the last 8 weeks praying for healing. Praying for more time. Praying for acceptance. For daily joy. For closeness. I have been specific and general. And over time, my prayers have widened. I still pray for the same things but I have learned to pray God’s word. To pray to have his eyes and ears so I can see His hands and hear His encouragements. To pray that His will be done and mean it. To believe that God’s love for me is greater than my unbelief. His peace is greater than my fear. His strength, my only chance for strength. His word, truth. 

I have told you these things, so that in Me you may have perfect peace. In the world you have tribulation and distress and suffering, but be courageous [be confident, be undaunted, be filled with joy]; I have overcome the world. [My conquest is accomplished, My victory abiding.] John 16:33 AMP

This verse thrown around a lot when people are suffering. I’ll be honest, when I see it, I usually roll my eyes. But today when it popped up in my quiet time, I wept. Because God can overcome our cynicism. 2 months ago, when a praise and worship song came on about God being a mountain mover, or how great His love is for us, or worse, how they’ll praise Him even though everything is falling apart, I would roll my eyes and change the station. I would say, what trials have these super famous worship bands been through? When did they have to choose to praise God as their heart broke in half? It Is Well my foot. They don’t know.  

But now, I let loose my hands, close my eyes, and praise Him with the words inspired by God’s nature and goodness. Because recently I had an epiphany. It  doesn’t matter if the writer or singer or friend has been broken and spilled out. What matters is that I believe the Holy Spirit inspires, moves and works in the lives of God’s people for His glory. I must give Him glory in the big and small. For the things I asked for and the things I didn’t.

We praise God that He is showing us His works in this new treatment option for Judah. We praise Him that our hope is stronger than our strife. We praise Him that He fights for our hearts. And if there comes a time when we can no longer see Him working, we will remember His truth, that he is still working.

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!

Praise him anyway

God I look to you
I won’t be overwhelmed
Give me vision
To see things like you do
God I look to you
You’re where my help comes from
Give me wisdom
You know just what to do
I will love you Lord my strength
I will love you Lord my shield
And I will love you Lord my rock
Forever all my days, I will love you God
Hallelujah our God reigns
Hallelujah our God reigns
Hallelujah our God reigns
Forever all my days,
Hallelujah
-God I Look to You, Bethel Church

A week ago today, Matthew and I waited with equal parts fear and hope, for news about Judah’s tumor pathology. The next day, our world was shattered and I told God I hated Him.

Over the last week, I have wrestled with my longing for the comfort only Jesus can offer, and my crisis of faith and trust in His goodness and love for me. I have asked myself what it means to trust in God.

Trust is a firm belief in the reliability, truth, ability, or strength of someone or something. To set one’s hope and confidence upon, to be secure fearing nothing.

These definitions don’t lend themselves to trusting halfway. One either has a firm belief or they do not. When we set minds to something, that brings to mind a stubbornness, right? If I set my hope and confidence in God, then that shouldn’t waiver. Does that indicate that I didn’t trust God completely before? I cannot answer that. I can say that in 2013, I trusted God with Judah completely. I believed in His goodness and His vision. I believed He was working to complete a good work in us and everyone that knew Judah. Maybe that was because the Drs told us Judah had an 80% survivor rate. Maybe it was because his diagnosis came at a point in my life where I was diligent with my quiet time, verse memorization, and journaling. Maybe it was because I saw our faith and Judah’s fight bringing people closer to God. I watched my nephews ask hard questions and wrestle with what they knew of the Lord and what was going on with Judah. And they turned to the Lord. I saw God’s glory being magnified. The pain Judah was experiencing, the heart-hurt Matthew and I were living with, seemed to be ‘ok’ because we knew Judah would live and God’s kingdom was growing.

But Judah doesn’t have a life expectancy this time. People all around us are losing their faith in God’s goodness. Matthew and I are clawing to hold on to the belief that God is reliable. Loving. Powerful. We see many accounts in the Bible of God displaying His power and mercy so His glory would be known.

Psalm 106:7-12
7 When our fathers were in Egypt, they gave no thought to your miracles; they did not remember your many kindnesses and they rebelled by the sea, the Red Sea. 8 Yet He saved them for His name’s sake, to make His mighty power known. 9 He rebuked the Red Sea, and it dried up; he led them through the depths as through a desert. 10 He saved them from the hand of the foe; from the hand of the enemy he redeemed them. 11 The waters covered their adversaries; not one of them survived. 12 Then they believed His promises and sang His praises.
Habakkuk 2:14
14 For the earth will be filled with the knowledge of the glory of God, as the waters cover the sea.
Psalm 25:4-7
4 Show me Your ways, O Lord, teach me Your paths; 5 guide me in Your truth and teach me, for Your are God my Savior, and my hope is in You all day long. 6 Remember, O Lord, Your great mercy and love, for they are from of old. 7 Remember not the sins of my youth and my rebellious ways; according to Your love remember me, for Your are good, O Lord.

We are searching the expanse for a hint of God’s glory in all this pain. Every time I take Judah to an appointment, I say ‘Even now Lord. Even now You can show us Your great power and glory. Please. Show us Your glory.’ And then when nothing happens, ‘God, what are you waiting for? I do not understand. Help me understand.’ But I don’t understand. I want to see. But honestly, what could God show me that would make my son’s life a suitable price?

I have begun to talk to God again. I turned on  praise and worship music yesterday. I have opened my bible. I have even read some of it. I am still very angry. Still very sad. Very scared. And I don’t have unshakeable trust in God on Judah’s behalf.

But I am begging, on my face, at the throne of grace that God will spare Judah. That He will grant us mercy. That He will remind us of His love and presence. That He will hear the prayers of His children and grant our request. And I will keep doing that. Every day. Because, to paraphrase my sisters, whatever anger and disbelief there is, in the end, Jesus is the only way out of despair and hopelessness.

Chemo 4 done and side effects ramp up

I’ll start with the most important news first: Judah’s tumor hasn’t grown since we started chemo!

The radiologist hasn’t actually read it yet but we looked at with the dr and you can see it hasn’t grown! We also saw, and the dr confirmed, that there is less contrast (lighting up) so that means the chemo is killing those growing cancer cells. We are so elated! We won’t know if it’s shrunk until we see the radiologist’s report but we feel confident that this MRI is good news!

He has already had his labs and anti nausea meds. Everything looked pretty good. The dr said it looked, by his labs, that he is fighting “a little something” by the slight elevations but nothing to be worried about.

We did have to have a talk about his weight. He had lost weight…again. Dr pulled up Judah’s growth chart, which I always dread because he hasn’t been on a growth chart since he was 4, and showed us that Judah is in the 0.02% for his age. That means if you picked 1,000 kids randomly, he would be the smallest and thinnest of all those kids. And the kicker is, that he has now lost so much that he is technically considered “failing to thrive”. This wasn’t shocking to us because we have been fighting his weight loss and lack of appetite for 5 yrs. But the failure to thrive was heart wrenching. The dr was quick to tell us that we have done nothing wrong. That gaining weight is hard for a lot of kids with cancer. But also said that we can’t do nothing now. So in the next couple of weeks Judah will probably be getting a feeding tube (NG Tube). For those of you who are medical people, he can’t get a G Tube because the chemo makes it too hard for his body to heal. They can’t do surgery unless he goes off chemo for 4-6 wks. And we aren’t doing that right now.  Judah is very sad. He doesn’t want  to be “Judah with cancer”. He wants to be “just Judah”. And the NG Tube will be on his face. And people will see it. You can hide a G Tube under your shirt. It’s a bummer. But it’s also necessary at this point. Judah is an amazing kid. He sweet and gets “it” like most kids can’t. He understands he has to have the NG Tube. And he will get to a better place because that is just who God made him to be. Brave and introspective and sweet and trusting. Join us in praying for his heart. And that his little friends can see past the weird tube and treat him like “just Judah”!

He finished his chemo in great time and we went down the street to McDougal’s Chicken, before we headed back to Bam’s for the night. We planned ahead of time to stay over night in case judah was sick and boy am I glad we did. About an hour after he finished chemo he started getting sick. We had to rush to the bathroom several times before we even got back to Bam’s. Unfortunately, Judah was sick the rest of the day and into the night. He hasn’t been actively sick today but he also hasn’t eaten much.

Thank you for celebrating with us and praying with us. We are grateful for our community!

Sleep, chemo side effects, and Jesus

I am a heavy sleeper. I love sleep and people who know me will tell you that I really do need 9-10 hrs of sleep a night to be my joyful self. So I go to bed early. Like at 9pm. I know! But I have learned that if I want to get all the sleeps, I have to forgo the TV and all that stuff and get into bed. I have even gone back to reading ‘dead tree’ books, as my husband affectionately calls them, to minimize the chances of falling into the endlessness of internet only to find that I’ve scrolled my way to midnight and kick myself because what had I actually read/seen that as worth losing precious shut eye?

All that to say, once I’m asleep, there isn’t much that wakes me. One of my children crying is one thing I ALWAYS hear no matter how asleep I am (fellow mommas nodding, right?) Another is the Holy Spirit. And that’s about it. Last night I was out cold, and had been for a few hrs, when I woke up for no apparent reason. When I say woke up, I mean wide awake! I looked at the time, after midnight, and then looked around the room. Nothing. Looked out into the hall and saw the bathroom light was on. And I said a quick thank you prayer because I knew then that one of my kids was sick. It wasn’t the fact that the light was on, cause my kids get up to pee in the middle of the night too. It was that I had been asleep and woke up for no apparent reason to find the bathroom light on. I knew this was a gentle nudging from Jesus.

I walked into the bathroom and found Judah a mess. He looked awful and told me he felt equally so. I asked him what was wrong and he said “my belly really hurt like I needed to poop but I was too late. And I feel like I’m gonna throw up”.  I told him is was totally fine and I would clean it all up. And I looked in his face and saw how embarrassed he was. So I got down next to him and said, “Hey Bug. I’m sorry this happened. Don’t feel bad about it ok? It’s so easy to fix this mess and it is 100% not your fault. This is the chemo rearing it’s ugly head.”

I prayed over him and for him, got him cleaned up and back in bed, and then set to cleaning up the hall and bathroom. While I cleaned I felt a crushing sadness. A feeling of helplessness. Weakness. How do we get Judah through this? What will it even look like to get him through this? And then there was the black hole…the what if’s taking over. I wish I could tell you I prayed or got my bible and read or even sang a worship song to myself. But I did none of those things. I scrubbed the floors and bathroom and cleaned myself up and crawled back in bed. I chose to ignore my feelings in hopes that they would go away if I just went to sleep. I slept horribly. I woke the next morning ‘tight’ inside. I knew I needed Jesus but I couldn’t bring myself to talk to Him. So Jesus crossed lines to get to me.

My phone pinged. A simple text message popped up on my phone. “I’m praying for you right now.” That’s all it said. But it’s all it needed to say. Cause in that moment I felt God’s love for me. And that made it possible for the walls to come down and me to see Jesus.

Sometimes the Holy Spirit wakes us up in the middle of the night. Sometimes He urges us to send a note, a text, to make a call. Sometimes He brings a friend to mind. My advice is to heed that prompting. Jesus may be using you to pull someone out of the the back hole of despair.

We all want the miracle

Since Judah’s rediagnosis, I have found a renewed urgency to soak up God’s words. I remember the last time we went through all this, God had prepared me by giving me a desire to memorize His word. When I was afraid or sad or joyful, His word would linger in my mind, an encouragement to me. I sit here this morning, praying for a friend who is having surgery this morning, and I long for those scriptures I used to have at my fingertips! I have a distant memory of them, but have to look them up now. So as I’m thinking and praying, I know there is a scripture I want, I just can’t think of it.

But I call to God, and the Lord saves me. Evening, morning and noon I cry out in distress and He hears my voice. He ransoms me unharmed from the battle waged against me. ~Psalm 55: 16-18

We are distressed. We live in a time where the world feels sick. But I love this bit of scripture. “He ransoms me unharmed”. Strong’s says this word ‘ransom’, at its root, means to deliver, by any means, preserve, redeem, rescue. And how are we redeemed? Unharmed. Also translated as ‘in peace’. This Hebrew word is Shalem. It means to amend, make good, finish, repay, restore, recompense. So this doesn’t mean unharmed the way we think of it. It means, when He rescues us, He will restore us. This is a beautiful picture of love. Because love doesn’t mean we are always safe and happy. But it does mean showing up. Showing care. Participating in restoration. Now, more than ever, I need to know this.

Because we all want to experience the miracle, right? We all want to be the 1 in a million. And when we aren’t? What happens to our faith then? For me, it’s knowing that God promises restoration.  And He is moving in ways we cannot see for His and our good.

Would it be nice to have the rescue story? Of course. For now, though, we will allow ourselves to be satisfied by His care and provision. And we cling to hope, asking God to keeps us close and direct our steps.

When it rains it pours (1)

This week has not been a great one for Judah though at the start of it, it looked like it would be great!

On Sunday, he and I went to Kingsport to help my younger sister after she had rotator cuff surgery. Judah and Will love each other and play the same way; that kind of sit with action figures, cars, whatever imaginary play. They had both been looking forward to it.

We got there around the kiddos bedtime so there wasn’t time for any activity. They just went straight to bed. Cara and I stayed up for a bit to talk and the retired to bed too. Around 11:30 Cara comes downstairs and says “Judah is saying his foot is really hurting him.” I figured it was cramping and told her to send him down to me, apologizing that she had to get up with him. A few minutes later, here she comes, CARRYING, my 9 yr old down stairs. Reminder: she had rotator cuff surgery 10 days ago. Isaid, “What are you doing?? Put him down! He can walk.” Little did I know, he couldn’t walk. She put him on the bed and I could see in his face that he was in excruciating pain. His foot was not swollen or bruised but touching anywhere on the top was more than he could take. Even touching the arch and pressing up was too much.

I started to rack my brain. He can’t have Motrin because it things blood and he is taking chemo that things blood vessels. He can’t have Tylenol because it masks fever and he has a port so if it got infected, he would get real sick real fast. 

I started to cry. I was, again, away from Matthew and Judah was hurting and I didn’t know what to do. So I laid my hands on Judah and prayed over him. I prayed to Jehovah Rapha to heal Judah’s foot. I asked him to relieve Judah’s pain so he could sleep. Judah even prayed for himself. Nothing changed. I don’t know what I was expecting but I will say I started to feel an anger I haven’t felt in a long time. An anger about the injustice my boy has lived through thus far.

After 30 minutes after trying to calm him, I called Matthew who I said, “oh yeah. He feel today and I thought to myself, he probably just broke his foot. You probably need to take him to the ER for an x-ray.

WHAT?!?

I wasn’t calm. 

Thankfully Cara brought ice and, after taking his temp and deciding it was worth the risk, I gave him Tylenol. He was able to sleep soon after. 

The next day, he wouldn’t put any pressure on it. In fact if he fogort and accidentally put pressure on it, he would cry out in pain. We kept ice on it but it didn’t seem to be improving. I knew we were going home Tuesday so I decided to wait. 

When he went down for a nap, I went out into Cara’s yard and did a prayer walk. By prayer walk I mean, I wondered around talking to God — voicing my anger and frustration that Judah keeps getting sick and hurt. That cancer wasn’t enough. My mind was fixated on a particular ‘why’. Why does he have to fall and possibly break his foot when he is already fighting cancer? Why, when he never has energy or desire to do much of anything active, does he have to get hurt playing outside with his sister? I felt so abandoned. So alone. I prayed for Jesus to show me a bit of His love for me. For Judah. 

I listen to praise and worship music all the time. Most of those songs talk about God’s faithfulness. His ever presence. 

·Before I call, before I ever cry

·You answer me from where the thunder hides

·I can’t outrun, this heart I’m tethered to

·With every step, I collide with you.

~Fierce, Jesus Culture

It’s weird. I didn’t feel abandoned because of Judah’s cancer. I felt abandoned because of all the other stuff. The anger he has, the fevers, the not eating, the cramps, the broken foot. Where my heart is, I felt empty. Did I do something? I didn’t know what else to say. I was sad and angry. I needed Jesus. My strength was but a breeze compared to His hurricane. My peace was turmoil. It was all a mess without Jesus.  

After a couple of hrs, I went to ck on Judah and he was awake. I asked him how he felt. How his foot was. He said, “it feels better, I think. I can move it around!” And he wiggled his toes. And I cried! “Thank you Jesus for showing us Your love!” And Judah said, “yes!”

God is good. And He loves us with an undying, undeserved love. It is easy to have nothing but apathy for God when things go wrong while giving people all the glory when things go right. We have to learn not to divorce those things. God is good and bad things happen. God uses His people to love His people. (~Cara Mcmillin)

The rest of the week in the next post.

1st clinic visit and learning to deal with feelings

Judah and I went to ETCH this morning for his 1st off-week clinic check. It was an easy appt and with the Emla Cream, Judah didn’t even feel it when the nurse accessed his port! Oncology nurses are really good at sticks and Judah told her so! “That was way better than the other night that the ER. You are really good at that.”
His labs looked good so he will be having his 2nd Chemo next Thursday.
As we were waiting for his labs to come back, I thought about how amazing the nurses, Drs, and clinic is there at ETCH. Judah said, as we entered our patient room, “wow this room is very relaxing! I like it”. The nurse that accessed him was friendly and sweet. She joked with him that she could help with whatever he needed as long as it wasn’t his Math homework, haha. Judah’s oncologist Dr. Spiller, is just so good at what she does and really made an effort to connect with Judah and with me. We felt cared about and heard and loved. And when your kid is starting a year long chemo, those are the feelings you want to have! I am so very grateful to have ETCH Hem/Onc taking care of Judah!

I’m guessing all the the positivity we had today was making up for all the negativity we had yesterday. Judah was in a foul mood yesterday. It didn’t start off great because I am not the best at morning time anythings… I woke up, made breakfast, packed lunches, got dressed and felt like I was crushing it. And then Judah says, “Mom, we are supposed to be at school in 2 minutes. We are gonna be really late.” UGH! I’m telling you guys, I never remember just how much Matthew helps out in the mornings until he isn’t here. I just do not function well before 2 cups of coffee. So we were late. Like 15 minutes late. And Judah HATES being late. He was sitting in the back seat, saying, “I have a math test today and it usually starts right after devotion. If I miss the beginning of the math test, I won’t be able to finish it on time.” I do my best to reassure him, telling him that the joy of part-time homeschooling is that he can finish his test anytime. I tell him it’s not a big deal. But he isn’t having it.

We get to school, I walk them into class and remind Judah’s teacher that I will be back in an hr to take him to cancer counseling. But when I got to school to get him, he was on the verge of tears. I asked him what was wrong. Can you guess?? “I didn’t finish my math test Momma!” He was full blown crying now. And I was so thankful we were on the way to counseling. I knew Judah needed time with Dr. Reno and that she was really good at getting him to talk about whatever was eating him up inside. But 30 minutes in, his counselor ended the session at his request. He wouldn’t talk to her. He wouldn’t look at her. He cried/tried not to cry and shrugged his shoulders with every attempt to communicate. Finally she asked him if he wanted to end early and go back to school and he said yes.

After I spoke to his counselor for a few minutes about some tools Matthew and I can use to talk about Judah’s cancer, we left. He was very emotional on the way to the car and even yelled at me. “I asked you not to talk about my cancer so much and you said you wouldn’t, but that’s all you talk about anymore!” I was at this point that I realized my sweet Judah was not dealing with his cancer diagnosis well at all. I tried to explain to him that when I said that, it was when his tumor wasn’t growing. Now that it is growing again, I had to talk about it some. He just looked at me with frustration. He didn’t speak to me again until we were all the way through the Chick-Fil-A drive-thru line — at 11:30. If you’ve ever been there at lunch time, you know he was silent for like 20 minutes! When he finally talked to me again, he said, “will you please take me to school now?”

Guys, Judah and I have been doing cancer counseling and lunch dates every 2 wks for almost 4 yrs and it has always been a joy. But I think, maybe, that time is over for now. Cancer at 4-5 yrs old was hard. Watching Judah go through all that and him not be able to understand why was excruciating. I think cancer at 9-10 is going to be a whole lot harder though. He knows what’s going on. He gets it enough to be angry and dread every conversation. He is struggling. He is hurting. Let me tell you, not being able to help him is tearing me apart.

A friend sent me a verse last night, Isaiah 40:28-29

28 Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.

I have no power. No strength. No understanding. But Jesus does. I choose to trust that He, whose understanding in unsearchable, will continue to give me the right words to say to Judah. Words to lift him up and restore his strength.

being loved feels really good

Y’all-this gift card tree was just delivered from Judah’s school, Oak Grove Cooperative! They are the most loving, “hands and feet of Jesus” organization/school we have ever been a part of. They don’t just pray and cry with us (though they have done that too!) They are showing ACTIVE love and support how they can.

Not only did they give us the gift card tree for clinic days and “Judah won’t eat anything but Chick-fil-A” days, but they also are doing a matching fundraiser!

This is not your typical school. This school is run by people who LOVE Jesus and take care of their community. They help us parents homeschool well and, on school days, they teach our kids with both progress and pace in mind. Choosing to send Judah there 2 yrs ago was the best educational decision we’ve ever made! We will be forever grateful to them for allowing Judah (and now Camilla Kate) to love and feel loved by their school.

Thank you Oak Grove Cooperative!

Reckless Love

The Sunday after we found out Judah’s tumor was growing again, we went to church. There were many who didn’t understand WHY we would want to go, knowing we would have to answer the questions:
How are you guys?
How’s Judah?
I knew those questions would be hard and that I couldn’t even really answer them and that our people loved us and would hold us close. But I also knew I needed to worship.

Worship music is my path to Jesus’ feet. Without it church is very difficult for me. And Matthew knows that about me. So we went. The music was on point and I was singing and communing the way I was longing to. And then the band played, what was a new song to me, Reckless Love by Cory Asbury.

Guys, let me just tell you, my body reacted before I knew in my heart what was happening. Viscerally. And I was overcome. As the words washed over me, Matthew holding me up, I gave up the pretense that I could do ANYTHING without Jesus. And just in thinking that sentence, ASSURANCE.

Don’t misunderstand me. There was no Godly promise that Judah would be ok. Or that Matthew and I would be the rock Judah needed. The assurance was that Jesus knows my sorrow, my fears, my anger. And He loves me. Assurance that He knows Judah’s fears, his anger. And He loves Judah. In fact, Jesus loves Judah more than I do. And that love leaves the ninety-nine for the one. It gives new mercies every morning. It is free and undeserved. It is faithful and endures forever.

And that is the love that will hold me- and Matthew, Judah, Camilla Kate, Emmett and everyone of the sheep of His pasture. That is His promise. No matter what.

Reckless Love (chorus/bridge):
Oh, the overwhelming, never-ending, reckless love of God.
Oh, it chases me down
Fights til I’m found
Leaves the ninety-nine
I couldn’t earn it and I don’t deserve it
Still You give yourself away.
Oh, the overwhelming, never-ending, reckless love of God
There’s no shadow You won’t light up
Mountain You won’t climb up
Comin’ after me
There’s no wall You won’t kick down
Lie you won’t tear down
Comin’ after me