sickness

The Water Receded: who to call on when there’s nowhere to go

/ bekaburnsblog / 2 Comments

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“…I have planned this in order to display my glory.”

…so the Israelites camped there as they were told.

…As Pharaoh approached, the people of Israel looked up and panicked when they saw the Egyptians overtaking them. They cried out to the Lord, and they said to Moses, “Why did you bring us out here to die in the wilderness? Weren’t there enough graves in Egypt? What have you done to us?”

…But Moses told the people, “Don’t be afraid. Just stand still and watch the Lord rescue you today. The Egyptians you see today will never be seen again. The Lord himself will fight for you. Just stay calm.”

…The cloud settled between the Egyptian and Israelite camps. As darkness fell, the cloud turned to fire, lighting up the night. But the Egyptians and Israelites did not approach each other all night. Then Moses raised his hand over the sea, and the Lord opened up a path through the water with a strong east wind. So the people of Israel walked through the middle of the sea on dry ground, with walls of water on each side!”

–Exodus 14, excerpts

It took me a couple weeks to find the words.

Benaiah’s brain MRI in December showed so much improvement. NONE of the doctors are recommending surgery anymore. The fluid collected around his brain and his arachnoid cysts are almost totally resolved. He has healthy brain developing forward into the spaces where fluid had accumulated. He’s babbling, crawling, standing up, meeting or even exceeding his milestones, and we’re weaning him off his medication.

Lord, I don’t know what to say.

I didn’t dare hope for this, but you have done it. Chief of Medicine, you have stepped in and treated my baby’s brain with delicate healing in your hands.

I was helpless. There was nothing I could do but ask you to have mercy on him. I cried out in terror and unbelief and you stepped in with power and compassion for my little son and his brokenness. You didn’t have to, but you were able, and you leveraged that power for our small story. In all the world and all its damage and hurt, you saw ours and you said ‘yes.’

Lord, may I never get over it. When Benaiah is getting into trouble and constantly moving and bonking his head and wrecking his bike and arguing with me over his homework and driving me nuts, I will praise you and praise you and praise you because I didn’t know if he would ever be able to. Every breath, every roll-over, every grubby smile is an announcement of your mercy to us because he might not have been able to do any of it.

It was his brain – the physical organ that houses who he is – and it was swelling and seeping and bleeding and sustaining damage and he was sleeping constantly and refusing to eat and losing weight. Lord, he was so tiny and fragile and he could have slipped away. Maybe his body would have survived it, but the control center was flooding and the doctor told us to cancel our plans and prepare ourselves because she didn’t know how much help Benaiah was going to need.

But,

“Our help comes from the Lord, the Maker of heaven and earth.” (Psalm 121:2)

“…The Lord is my helper, I will not fear…” (Hebrews 13:6)

All the help Benaiah needed – you were able to give it. You were able to restore where doctors could only labor to install and maintain a drain. You are able to meet needs that I cannot. May I remember. It is okay when my kids need something I cannot give, though I have offered all I have. Because you have offered all you have.

“Since He did not spare even his own son, but gave him up for us all, won’t He also give us everything else?” (Romans 8:32)

I was trying so hard to prepare myself for a ‘no,’ because I know sometimes you say ‘no,’ and you’re allowed to, and I may never get to understand it.

“…His rule is everlasting and His kingdom is eternal. All the people of the earth are nothing compared to him. He does as he pleases among the angels of heaven and among the people of the earth. No one can stop him or say to him, ‘What do you mean by doing these things?’…All his acts are just and true, and he is able to humble the proud.” (Daniel 4:34-35, 37)

I fell short of Abraham. I did not freely offer you my son. I did not even come close to unwavering certainty that you would restore him to me somehow if I gave him up. I had no promise for his future, and I was stared down by the harsh fact that parents everywhere beg for their sick children and walk through the unthinkable. I almost lost sight of all the times parents in your Word begged you for their kids and you said, ‘yes.’

I had nothing to offer or bargain with or to convince you – only a bleak, pleading prayer and a body of people who held on hoping and praying and fasting and coming before you for Benaiah’s sake.

I withered in despair: “So many people have healthy babies. Did I ask for too much? How could God allow this to happen to Benaiah? He has broken my heart!”

Cody’s response was this: “He’s broken your heart? He has saved our son!”

I saw the peril. He saw the rescue. Oh God, thank you for that rescue. I am undone even now every time I consider it – what was at stake, what you have done. Only three times in his career now, Benaiah’s neurologist has seen hydrocephalus stabilize on its own. I couldn’t find a single study that supported a long-term Diamox regimen for this; in children it’s never enough to just give them medicine; it’s a stop-gap to get kids to surgery.

But you.

You reached down and cancelled it.

Twice, your people came up against the water. They held out a staff or stepped into a river, you worked, and the water receded. Now, as I stare at image after image of Benaiah’s brain scans, I see the water receding, pulling back, making a path for steps forward.

From: There’s nowhere to go! Water on one side and an army on the other. Darkness. Panic. Uneasy waiting.

From: There’s nowhere for it to go! Water building, stretching, seeping out of his ventricles, across into his brain tissue, swelling and compressing, and he’s not reabsorbing it fast enough. Darkness. Panic. Uneasy waiting.

To: Suddenly, there is a way that wasn’t there before. From nowhere to go, to receding waters. From terror to relief.

And it wasn’t just Moses, who reminded everyone that God would fight the battle and held out the staff, that got to walk through the water tunnel to safety. All the panicking, freaked out people who demanded to know why they had been brought there to die got to go through, too. Lord, I am so thankful we have accounts of you rescuing scared people. Where would I be if you only answered the bold and the unwavering?

I’m praying that through all of this, you’re building in me that sort of confidence. I think you’re in the business of growing panicky people into grounded disciples who lean in and trust you and look for your rescue even when they don’t understand, because they’ve seen your character on display over and over. But I’m learning to be patient with that process. These are the beginnings, and it’s okay to sound scared when I call for help. What matters most is that I dial the right number.

“We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. And He did rescue us from mortal danger, and He will rescue us again. We have placed our confidence in Him, and He will continue to rescue us.”

–2 Corinthians 1:8-10

Keep Knocking: He will be with us in trouble

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“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.

“You parents—if your children ask for a loaf of bread, do you give them a stone instead? Or if they ask for a fish, do you give them a snake? Of course not! So if you sinful people know how to give good gifts to your children, how much more will your heavenly Father give good gifts to those who ask him.”

–Matthew 7:7-11

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I have really struggled with this verse. I think any believer who’s experienced chronic illness probably has. I have asked a lot of times for things I have not received.

In fact, from the first moment Benaiah’s brain scans popped up on the screen in the hospital, my thoughts were not “Oh, well I’ll just ask the Lord to heal that, He can do anything!” To my shame, my heart sank. How many thousands of parents have pleaded with God for their sick child, only to watch them keep suffering? I thought. Why would He answer me?

Instead of recalling all the times the Lord has moved into my circumstances and heard my cries for help, I let myself dwell on suspicion: How could you let this happen to my child? We’re just trying to serve you with our lives and our family is getting hit with one thing after another! You could have stopped this, and you didn’t, so how can I expect your help?

I asked absolutely everyone to pray for our son. And I kept asking. Shooting flares into the darkness. But I braced myself for no help to come.

There in the waiting, a friend wrote this to me:

“I know that that’s the place you’re sitting. Terrified of all that could be to come. I feel so deeply in that for you and even if hope is too painful to hold right now yourself, that’s ok. I’ll hold it for you. I’m praying with hope and confidence for his healing. Many people held that for me with [my daughter] because I honestly just couldn’t. So I’m here. Holding hope and holding light if ever you need it.”

I felt so known. When it was for myself, I could hold onto hope. But when it was my brand new baby? How could I face all that was ahead if I let myself hope and that hope was disappointed? My faith felt fractured. I was reeling, and kicking myself for not standing firm, especially if what my baby needed was for me to pray in faith and confidence and I couldn’t muster it. 

But I think the Lord led this mom to gently write to me: “I’ll hold it for you.”

Person by person, a community of people messaged, called, showed up at my door. They were holding hope for me. They kept asking when my voice broke. They kept knocking when my hand fell limp. 

You hold that baby. We’ll hold your hope. We’re praying for him. We’re believing for him. God can change this. Don’t lose sight of what He is able to do.

A speaker at our church retold the story of the man with a demon-possessed son who asked Jesus to heal him, if He could.

“If I can?” Jesus had asked, “Anything is possible if you believe.”

“I do believe, but help me overcome my unbelief!” the man cried. 

Tears stung in my eyes. This had been my cry, too. The speaker lowered her voice, and gently said, “It was in this father’s crisis of faith that Jesus healed his son, not in his moment of strength.”

I sobbed. 

A few days later, I read this verse: “This is real love – not that we loved God, but that He loved us and sent his son as a sacrifice to take away our sins…We know how much God loves us, and we have put our trust in His love.“

–1 John 4:10, 16

I was despairing, breaking, fearful, suspicious. But patiently, through His word and His people, God was there with me, reminding me that it is a safe thing to wait on Him. That even when I fear what is waiting for me on the other side of the door, I must keep knocking. I must keep asking. Because God may not help me in the specific way I ask, but his help will surely meet me when I ask Him. His peace is found on the other side of that conversation. And there is no shortcut to it, because He is the answer, not any of the things I’m praying for. I know He will always give me good things when I ask, because He always gives me himself.

“The Lord says, ‘I will rescue those who love me. I will protect those who trust in my name. When they call on me, I will answer; I will be with them in trouble. I will rescue them and honor them.”

–Psalm 91:14-15

“Commit everything you do to the Lord. Trust Him, and He will help you…Be still in the presence of the Lord, and wait patiently for Him to act.”

–Psalm 37:5, 7

Four months later, here I am, marveling at how well my little son is doing. Rubbing my eyes and looking again, and slowly realizing that God is doing what I was afraid to hope for, in spite of how poorly I trusted Him. I wanted to stand firm with unwavering faith. But what happened is this: I went down, and God sent help. 

I am part of a body, and “all the members care for each other.” (1 Corinthians 12:25) Keep asking, keep seeking, keep knocking? It’s not just an instruction to the individual. It’s a call to a team. Pursue the Lord. Walk with Him. Plead with Him. Not just for yourselves, but for each other. Keep going after Him. And keep reminding each other how much He loves us, how faithful He is, that He’s a good Father who is worthy of our trust.

We are loved by a God who can do anything. He is with us in trouble. He is steady when we falter. It’s the message of the Gospel all over again. Not that we buckled down and made our way to Him, but that He stepped down into our helplessness and offered Himself. And it will probably not be my amazing example of faith that will win the world to Jesus, but my humbled heart, again and again, moved to awe by his amazing faithfulness.

So when He says to keep knocking, I will keep pounding at the door. Both for myself and for the ones who are going under. Because He’s not only testing our faith; He’s building it. 

“…We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. And he did rescue us from mortal danger, and he will rescue us again. We have placed our confidence in Him, and He will continue to rescue us. And you are helping us by praying for us. Then many people will give thanks because God has graciously answered so many prayers for our safety.”

–2 Corinthians 1:8-11


Sufficient: grace that holds up in our hardship

/ bekaburnsblog / 3 Comments

“…We are perplexed, but not driven to despair.”

–2 Corinthians 4:8

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It’s been weeks of processing, crying, need-meeting, trying to adjust my expectations, feeling how up-in-the-air our lives are, and wondering when we will ever feel settled again. I feel absolutely spent. I have been thrust into a plot line I would never, ever choose. 

Our church had a parent commissioning for families with new babies a few weeks ago, and I sat in a room full of beaming couples with their healthy, beautiful babies – safe and sound and whole…and my broken one. My precious, tiny son with his brain cysts and spina bifida and swollen ventricles and cerebellum gaps and a shaky future full of scary possibilities. I was heartbroken for him.

For weeks, I have been crying out to the Lord for joy that overflows and peace that passes understanding and strength that overcomes this awful situation. I’ve been searching his word for guidance for how to walk through this. I’ve been reaching for a hope that touches my grief. I know there’s nowhere else to turn. I know that the Bible is precious and life-giving. But this is painful at a level that its promises don’t seem to touch. I look at them and I repeat them and I remember that God is working things for good and that, in eternity, everything will be healed and whole, but my baby hadn’t even made it 20 days from his first breath and he was back in the hospital. We’d had just 5 weeks of newborn snuggles when we started discussions on which brain surgery would be best for him. We had held on with all our might through this pregnancy. Little did we know how we would struggle on the other side of it. 

I climb into bed each night so relieved that I’ll be unconscious soon and I lay in bed each morning, trying to rally for another day in a story I don’t want to be living. I have no control here. Not over this. This is not something I can study for or work hard enough to fix. In a moment, it didn’t matter what I had wanted my life to look like. It rearranged itself around a new priority, and I watched, helpless as the pieces fell into place for a role where my training didn’t apply and my desires didn’t matter.

This is do-what-needs-to-be-done territory. This is a hold-our-whole-lives-before-the-Lord season, because we are helpless here, and all we can do is look to Him. We are discouraged, and fighting to cling to our hope. We are weary, and we are learning what hard work it is to do the good God has set before us and not lose heart – to be content with the good He has set before us in place of the good we had in mind. To trust in our disappointment that He is our helper and that He has not abandoned us. We are fighting a battle with our own hearts to entrust our baby and our story to Him.

Here is what I’m working to remember:

I have no control, but the One who has all the control is very good, and He loves Benaiah very much. He is for us. He has planned good things for us since long ago. Our lives are his masterpiece, not the jumbled, broken wreck it feels like at the moment. We are confused, but He is faithfully ordering our steps. (Ephesians 2:8-10)

Benaiah has some things that didn’t form well, but who he is was formed with great care. God not only created the temporary body, He crafted the precious, eternal soul living in it. Benaiah is more than just his body and his brokenness. With all that needs treatment, yet he is wonderfully made. (Psalm 139:14)

Peace that guards my heart and mind comes in proportion to my choice to fix my thoughts on the Lord, cast my cares on Him, and refuse to worry. His peace doesn’t fall short, but I do fall short of stepping into it. I am begging Him to help me here. To help me to fight the temptation to back away from Him in my disappointment, confusion, frustration and fear. He is ready to hold me, guard me, comfort me, and walk me through this if I will throw myself and my troubles onto Him, whole-heartedly trusting his faithfulness and his care for me. (Isaiah 26:3-4) 

Oh Lord, 

We are looking at this unexpected season before us and asking you for help. We don’t know what to do, but our eyes are on you. 

I believe this next year can be full of your grace. Your grace for all the appointments. Your grace in the surgeons and doctors you provide to care for Benaiah. Your grace over his surgery and procedures. Your grace for parenting and marriage, even out of our brokenness. Your grace in orchestrating a way for us to serve that is a good fit, here and now. Your grace at work in our hearts to teach us to trust you, to endure, and to be satisfied in you through the waiting. Your grace to keep hoping you will make a way for Cody to fly again. Your grace in our relationships. Your grace for all we’ve lost and left behind.

Your grace will be sufficient for us. And this year, I believe we’ll see it again and again and again. Lord, give us the eyes to recognize your grace in the hardship. Help our hearts to find your peace as we gaze at who you are. Teach us to trust you when we feel perplexed, that our hearts may face each next moment with courage. When we cling to you, we will not be driven to despair. You’re worthy of our trust. Lord, help our unbelief.