It’s hard to explain what it feels like to stand face to face with a moment that you know you’re not strong enough for. A moment that should leave you crumbling to the floor, collapsed under the pain and the fear and the weight of it all. Even harder to describe is the feeling of meeting that moment and realizing you are not alone.
When waves of love crash harder than fear and the hand of God holds on with a strength that the enemy could never match. When peace doesn’t make sense but it flows like a river and grace is tangible, holding steady through the storm.
When the Holy Spirit whispers and God’s people speak so that life-giving words chase down and stomp out the doubt-filled ones. When the prayers of many literally lift you up and out of the pit.
I never wanted to be here. Here in this ICU, so sterile and anxious and full of pain. Watching over my baby girl, curled up small in a hospital bed way too big. Hooked up all over to machines that blink their numbers and beep with apprehension.
I didn’t want to be here, and I don’t want to be here, but I’m so thankful that I’m not alone.
Olivia had been crying all day–not just crying but having what one doctor termed “episodes.” This is what he called it when she started to cry out, gasping for air with her head arched back and eyes large with fear. Her lips and hands would turn blue. The oxygen stats would drop and her body went stiff in my arms as I tried to coax her into breathing again.
It happened over and over and the episodes stretched longer until we landed in the ICU. The doctors said it’s neurologic and a progression of the genetic disorder. They said there are two options: we can treat it aggressively with strong sedatives meant to calm her nervous system (risking possible intubation or a tracheostomy) or make her comfortable and take her home on hospice.
The doctor’s words and the magnitude of it all hit me hard. I didn’t and don’t feel strong enough for the moment, but even as my own strength failed, His strength came barreling in. My Father keeps catching me and holding me and bolstering me up.
Because “grace sufficient” and “strength made perfect in weakness” aren’t just words from 2nd Corinthians, left by the pen of a man far removed from you and me. They’re livable truth, spoken from the mouth of our living, ever-present, never-changing God.
He is the only reason I can tear my eyes away from the O2 and respiratory stats long enough to type this. His voice is louder than the sound of science and medicine, and His promises are truer than the symptoms so evident.
He’s a God who is so good that He started preparing my heart even before I knew I needed it. He saw what was coming and tenderly drew my attention to the truth that would sustain me.
The night before the episodes got worse, Morphine and Toradol had provided a little bit of quiet and I was reading in John 10.
There are times you read the Bible just because you know it’s good for you. You take it in like vitamins, whether or not any remarkable revelation comes. Then there are times when the Word of God jumps of the page, illuminated in a way that reaches past the mind and changes the landscape of the heart.
My heart’s landscape changed as I read about Jesus, the Good Shepherd:
“He calls his own sheep by name and leads them out.”
“He walks ahead of them, and they follow Him because they know His voice.”
He “sacrifices His life for the sheep.”
The hired hand abandons the sheep when things get tough, and the thief only wants destruction, but Jesus is different. So very different.
The contrast is stark:
“The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.”–John 10:10
It reminded me of Deuteronomy 30:19, and I turned there:
“I call heaven and earth as witnesses today against you, that I have set before you life and death, blessing and cursing; therefore choose life, that both you and your descendants may live; that you may love the Lord your God, that you may obey His voice, and that you may cling to Him, for He is your life and the length of your days … ”
Life. Abundant life. Poured out by the One who gave his life for mine and for Olivia’s. Jesus who walks ahead, calls us by name, and leads us out.
The image of Jesus as The Good Shepherd came alive to me, and I saw that there is no life apart from Him. Trusting in anyone or anything else is a treacherous substitute–a hireling that runs when the wolf comes.
So, when the moment came, I knew. I knew because I know the voice of the Good Shepherd.
The question … option 1 or 2? Aggressive treatment or hospice? I knew that this question, even though it’s the most difficult we’d ever faced, wasn’t the most important one. Olivia’s future doesn’t hang on a doctor’s expertise or even her parents’ wisdom. She belongs to Jesus and is forever secure in His arms.
He loves her. Oh, how He loves her, and He would give everything–He has given everything–so that she (and you and I) can have His kind of life.
Jesus IS life, and the more pressing question is do I trust that? Do I trust Him? Will I choose life by clinging to Him, refusing to follow the voice of another? The enemy–the wolf–would love nothing more than to sneak over the fence and steal my heart and my peace and more. The hireling–this world and the artificial life it offers–will bail on me when things get rocky.
But Jesus never will.
This path that our family is walking is hard. It hurts and it’s scary and just … hard. But more than anything I’ve ever known for sure, I KNOW that Jesus won’t leave Olivia and He won’t leave me. I know that His heart is for us and His plans are good. Olivia is safe in His arms. Robert and I are too. No matter the path or how rough the terrain, He will guide us through. He is the Only One who can lead us to real life, and we choose to follow Him there.
I know that so many of you are praying for Olivia. Robert and I are so thankful. Keep praying. Our God is able! He works miracles! We believe He is doing and will continue to do miracles in and through Olivia’s life.
Right now, Olivia is resting well. The sedatives are allowing her to rest, and she hasn’t had any episodes since the “agressive” treatment started this morning. She is breathing well on her own, despite the strong medicine. The doctor’s plan is to give her body a chance to rest while they find the right combination of medicines to better control the episodes.
At best, the doctors offer Olivia more time and a measure of comfort.
Jesus offers more. He always offers more, and we choose to place Olivia in His hands and follow wherever He may lead.
The picture I attached to this blog is one of my favorites of Olivia. This is how I see her–smiling and laughing and full of joy.