Just keep swimming

So when I don’t have words, or my prayers feel inadequate, I know God knows the groanings of my heart. He knows my deepest longing — for the Miracle Maker to perform a miracle right here and now, in Judah. That His glory be shown through Judah’s living. Not in his dying. And also that I know, though it hurts, that God’s way are higher than my ways. His thoughts, higher than my thoughts. And it will be His will, not mine, that wins out.

Yesterday was Judah’s day 1 of Radiation Therapy (RT) and he was very nervous. So was I, even though I knew nothing would be different when he came out. Right before they injected the anesthesia, Judah looked at me, with tears prickling in his eyes, and said “Momma I’m really scared”. I asked if I could pray over him and he nodded. I prayed supernatural peace over him. Unconditional love. Safety only God can provide. And then the put in the medicine and he fell asleep. I went out to the waiting room, put on my sunglasses, and wept. 

The thing is, this whole situation is impossible.  Even the bravest, most incredible kid gets scared and wants to run away. To be held and told everything is going to be ok. And I do my best. But it’s not enough. So I went through my list of prayers for Judah.

I hate that he has to go through all this. That those who love him do too. That there is no “everything will be ok” because it won’t. Unless God works a miracle. 

Judah coughed and cried last night. He was in pain. And I didn’t sleep. Mommas don’t sleep when their babies hurt. I’m bone tired. But today is day 2 of radiation therapy and my littles are going to their 1st day of school, in Memphis.

So I got myself up. I helped Cricket get dressed and fixed her hair, like I did every day last school year. Made them breakfast, got their bags and drove then over to Aunt E’s. We scootered/walked to their school. I wanted them to feel loved and seen. My youngest, his 1st ever class, ran to his room and was, as always, ready for whatever! Big smile. My middle, not so much. She cried. She didn’t want “this” school. She misses her home. Her friends. Her school. I did the brave thing and told her it was going to be great. That she would have a blast. That I would see her after school and that I was proud of her. But I knew she wanted Judah. Because her school experiences have been WITH him. Her big brother. Little sister being forced into Big sister role. It’s not right. 

I got back to my car and fought tears. Lost. But not for the reason I should have been crying; my baby going to school for the 1st time. But because of what isn’t happening. And honestly, I’m struggling to find the fiber of hope I clung to yesterday. It comes and goes, my faith – my hope – my strength. And at times it doesn’t feel like the Spirit is interceding for me. It feels like I’m shouting into the void. And I want to turn my back and do it all on my own. But I know I’ll fail. My kids deserve better than that. So I turned on a worship playlist and drove back to our Home Away From Home. I forced myself to do a short quiet time but it felt fruitless. I was distracted. Heart sick.

So today, as Judah gets radiation for a terminal brain tumor, all I can do is ask God to grant us mercy. To heal Judah. To bless us. To be present. To show us His glory. And then keep asking. 

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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.

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How do we make it count?

How do you live in the moment, day in and out, knowing the days you have left are numbered? There are so many movies depicting adults traveling to Europe, climbing mountains, visiting family, learning to do that thing they always wanted to do just before they die, surrounded by family and friends. But they’re adults. And they’ve lived a life. And end of life rarely gets tied up in a bow that neatly. 

How do we make sure that every day is full to the brim with joy for our almost 10 yr old and his younger siblings? Of course that’s a question we should have been wrestling with since our 1st was born. But life gets in the way, right? The first words turn into “you’re too loud”. First steps turn into “go outside and play please”. First bites of table food turn into “just eat your food so we can be done”. And before you know it, their going to college, falling in love, all the things we dream for our children. And the time with them becomes short but sweet. At least that’s what we all hope for when life is flying by at a break neck pace.

When Matthew and I first found out about Judah’s cancer, we vowed to make every moment count. Then, when he started talking again after his 1st brain surgery, we said we didn’t care what he said or how he said it, as long as he did! And then he was 1 yr no growth. 2 yrs no growth. We got comfortable. We settled back into the life of ‘we have plenty of time’. We forgot how precious life is and how lucky we were to still have Judah with us. 3 yrs no growth. 4. And then growth. And more growth. And more. And we kept telling ourselves, the chemo will work. The inhibitors will match. The surgeon will de-bulk. He’ll be fine. Because he was last time. And we wanted more time. We held onto hope even though the specialists were giving us the facts and they weren’t pretty. We asked for specific prayers from 1,000’s of believers. We laid on our faces and begged God to save Judah. To give us more time. To show us His glory. 

But the news kept getting worse. 

And God didn’t show up. This isn’t a rescue story. It’s a heart-rending story of love and loss. 

So back to the questions that won’t let me sleep. How do we as parents make sure Judah lives every day he has left? How do we give him the chance to do and see all this world has to offer an almost 10 yr old? What would he even want to do with the time he has left? Watch TV. Play the Nintendo Switch. Be with his sister and brother. Cousins. Friends. Grandparents. Aunts and Uncles. Do his life with his family. He’s not old enough to know what he’ll miss. Not old enough to appreciate the grand canyon or the coliseum in Rome. His favorite things are imaginary. Pokemon, star wars, video games, Mario, bey blades. He’s still so little. 

He has no idea what death is. We tried to explain but he doesn’t get it. He doesn’t remember burying my grandfather or Matthew’s. And if he can’t get it, how in the world do we explain it to his sister and brother who love him so deeply? They will just miss him and want him to come back. We all will. But they won’t have the tact to not say it. 

It may seem like we’re worrying about things we don’t need to. Like there’s time to figure all that out. Like we just need to go hold our kids tightly and take it one step at a time. But that word — time, it’s limited now. We don’t have that luxury. And we won’t squander what we have left. We aren’t worried. We’re thoughtful and sad and stubbornly prepared to make every day matter.

QUESTION:

If you were almost 10 and could do ANYTHING in the world, what would it be?

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