On being thankful for Dantrolene.

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This was just a few days before I found the first mass in his neck.

It’s been 31 years since they took him from my arms and walked away. I remember watching his huge eyes over the nurse’s shoulder as she took him back to the O.R. that morning. She started tickling him and that beautiful belly laugh of his echoed its way back to us as the double doors closed behind them.

He was our happy, crazy-haired boy. Been that way since the day he was born. Cowlicks everywhere, and always, always happy.

Thankfully, he had no idea what was coming that day. Thankfully, none of us did.

This was the day our 11-month old baby boy was going to have his third major surgery in 3 months. That mass in his neck – it kept coming back. They just could not make it stop coming back.

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Still wearing the dressings from his first surgery. Even then … he was so happy.

But this time was going to be different, they said. More specialists were involved. New plan – more complicated, more extensive – but no worries. This one was finally going to fix everything. Finally.

They settled us out in the waiting room. It was so sadly familiar to us now. This time, though, it was filled with people who loved us. They knew our story, knew how scared we were. And they also knew how tired we had become. These beautiful people came to help lift him high, and to hold us up. Literally.

The phone rang. The nurse on the other end said they were ready to get started. Our happy boy was doing just fine, and they’d call us again in a few hours to update us.

So we all settled in to wait, confident that everything was being fixed. Finally.

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During one of his hospitalizations. He was everybody’s favorite patient – he would stand at the foot of the crib with his favorite hat on and yell “Hey!!” out the door to anybody who walked by. Few could resist him.

About fifteen minutes later, the door opened. A worried-looking nurse came out. The doctors needed to see us. In the back. Right now.

Just us.

There was a problem. Surgery was stopped. Aborted. Canceled. Malignant Hyperthermia. Very rare. Never heard of it. Not breathing. Dantrolene given. Only antidote. ICU.

They told us that nothing was fixed. Not a thing. And now our beautiful happy boy was definitely not fine.

He laid there so still amongst the beeps and tubes. No matter what they did to him … he just laid there. No smiles, no laughs. Just stillness. He seemed so different, so quiet … not our happy boy … even his crazy hair now laid flat against his head.

Late that night I paced.

But he laid there.

He still just laid there.

I cried.

I got angry.

How could this happen? What about that great plan this time? How could it have failed? And why was God stopping us from finally fixing this?

As I watched him lie there I just grew angrier. In fact, so much angrier that I took the whole mess – all the awful months of trying to fix things, all the exhaustion, all the disruption of our happy life  – and I wadded it all up in a giant ball and I threw it straight at God.

As hard as I could.

Then I climbed up into that crib. I didn’t care what anybody said. He must be scared. He was just a baby. I curled up with my baby boy. Even with all those tubes, wires, and beeps. I just held him. Helplessly. And still … he just laid there.

But not alone now.

I fell into a tense sleep. Much later, I felt a shift. Something had moved. I looked down and twinkling eyes were looking up at me. He was smiling and said, “Hey!” That was his favorite word. Then he laughed. He thought this was funny.

Mommy was in his crib with him.

We finally went home. He was better, but still nothing was fixed. We still had things to face, and these new complications did nothing to help, but for right now … it was fine.

He was fine.

Everything was just fine.

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This was a few weeks after that awful day. Notice his flat hair – it stayed this way for several months.

When I look back now, I can see that – no matter what great plan we thought we had in place that day, we had been seriously underestimating our God.

His plan for that day had not only been about finally fixing Drew like we had thought. That day had also been about finally fixing ME.

In my anger, I had hurled everything at God with all the venom I had ever possessed. Yet somehow … SOMEHOW … He didn’t see my ugly in all of that.

Instead, through His eyes of perfect love, He looked past my fury and saw a scared little girl at the end of her rope. He saw my weakness laid bare. He saw my surrender.

He saw that I was finally, finally surrendered.

So instead of giving me the punishment my attitude deserved that night, He opened His arms to me. He saved me from my sins and set me on the path of mercy.

He forgave my rudeness.

He understood.

He softened my edges.

He loved me through my weakness.

He transformed my heart and turned my eyes to Him.

And He also healed our sweet son who has grown more precious with each passing day.

Drew is now strong & healthy, married to a beautiful woman, and experiencing the unmatchable joy of raising his own babies to love and honor God above all else.

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All grown up and giving it back to the One who saved us both.

And after many years of study, he now spends his days filling this world with incredible music – all to the glory of the God who not only saved Drew that night – but He also saved me then, as well.

So, yes … my walk with Jesus began lying in a hospital crib, tangled up in tubes and wires, wrapped around my beautiful baby boy – finally trusting GOD to fix things.

And He did. In HIS way, in HIS time. And it was perfect. Of course. Praise be.

Thanks for growing with me. ❤

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On his wedding day … ❤

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)

8 thoughts on “On being thankful for Dantrolene.

  1. Thank you, Debi! God has used you in so many unexpected ways & still using you as you share your life with others. I always read your posts! What an inspiration you are! Hugs & Kisses! Really miss seeing you!

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  2. Oh my dear friend ❤️. I read this a few times, and my mama’s heart was right there with you, hurling my hurt and anger at God, through miscarriages, through watching my 11 month old on a ventilator, and watching my “baby” girl go through cancer. And I also know that amazing, abounding Grace of God that keeps turning my eyes back to Him. Thank you as always for sharing my heart.

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