How do you write about the most horrific thing you’ve ever experienced?

For a long time I’ve believed that we are meant to share one another’s stories to bring light to each other in the darkness. I know we are called to encourage each other and to bring hope in the midst of pain and suffering. But this is something I have wanted to disappear, to have never been a part of our story. It has been a nightmarish hellscape in which I’ve found myself sobbing with an anguish I can’t describe, begging God to spare my baby’s life and bring her back to me, whole and complete, just as she was. How do you write honestly about such a thing with hope? The only thing I’ve been able to come up with is perhaps all you can do is cling to Him until you’re further along.

July 31st was a good day – a normal, simple day at home with the whole family. But that afternoon my nine-year-old began experiencing some bizarre neurological symptoms. She was having trouble speaking and struggling to put items in her purse. She was crying and couldn’t articulate to us what was going on. On the way to the emergency room she began to speak a little better, but she was mixing up her words. She was scared because she could tell that the words weren’t coming out right, and I was terrified but tried to keep talking to her calmly.

When we arrived at the hospital, she couldn’t stand and crumpled when she tried to get out of the car. After I screamed for help and finally managed to get her inside, she was checked out and taken back for a CT scan. The rest of the family arrived, and we were finally told the horrible news that the scan had revealed a mass in her brain, which we would later learn was a craniopharyngioma. She was life-flighted to a children’s hospital where we began forty days of a ‘wilderness’ experience that tore me to pieces.

The doctors determined that the pressure in her brain from the tumor blocking the release of fluid was too great, so they placed devices called external ventricular drains to allow drainage of her cerebrospinal fluid. We spent the next several days trying to stay positive for her as she was cared for in the PICU. She is such a sweetheart that she handled everything very well, chatting with her nurses and singing along to the movies she watched. None of us could have ever been prepared for what was in store.

I remember looking down at her precious face before they wheeled her back for surgery. I memorized her eyes. I couldn’t bear to think that they might never look up at me again. I tried my best to reassure her, but she could tell I was scared, and it was only by God’s grace that I was still standing as they took her back.

We then endured the excruciating wait of a ten-hour day of surgery, followed by weeks of recovery in the hospital. She went through high fevers, trouble with her heart rate, extended ICU delirium, extreme short-term memory loss, hallucinations, anger and depression that completely altered her personality (due to the anti-seizure medication she was being given), and so much that I don’t want to discuss in detail. Watching your child – who is generous, loving, and kind, and the absolute joy of your life – endure those types of trials is soul-gripping torture.

I am hoping that we are through the worst of it all at this point, but I am only hopeful because she is finally starting to return to herself. Even though we have been home for several weeks, I initially felt like we came home without our child. The short-term memory issues and confusion have been heartbreaking, but one of the hardest challenges has been that I haven’t been able to have a fully normal relationship with her. The brain fog has kept her absent in many ways, but finally, as she is starting to retain memories, I’m seeing the beautiful parts of her personality again. She is a wonderful little human being, and I have felt lost without her.

Though she will continue to have health challenges that were caused by damage to the pituitary and hypothalamus glands, I have felt like we can be equipped to deal with those as long as my daughter continues to be the cherished little girl we’ve raised. I have often asked, WHY did it have to be her brain? I know, however, that any parent who has a child who goes through something like this probably asks why about any number of things. It’s just grief, I suppose – grief that this world holds such garbage.

During times like these, people often ask, how can anyone have faith through something like this? All I know is that now more than ever, I believe that this world is not as it’s supposed to be – there is evil and death and decay where there is supposed to be joy and life and hope. The only thing that can hold any of us together is believing that there is a God who sees and loves and will one day turn it all into incomprehensible beauty and delight. Why He doesn’t yet, I don’t know. I can’t have the answers for all the whys of enduring suffering. I can only entrust myself to His care because I am certain that I can’t do any of this on my own. He’s my only possibility for rescue, and the future is much bleaker without Him.

I tell my daughter that she is an overcomer who will bless and inspire others through her story. I tell her this because I believe it. Her suffering is not in vain. I am thankful for the many ways I have already seen grace and mercy pull us through because I will need that in the coming days in order to have the eyes to see the blessings that God pours into her life. I am thankful for the foundation that we have laid in her life because she will need a spiritual anchor as she navigates the unknowns.

I realize that things could be much worse, but I honestly struggle to overcome the trauma that we’ve lived through in the past few months. Most days I’ve barely been functional. I think it’s important to be honest about that because I know that we all go through horrible life events, and none of it is easy for anyone. I have several friends who have endured painful trials over this past year, and it all hurts tremendously. My own family was already suffering from deep wounds before all of this happened, and perhaps everyone has a point where it feels like life is trying to destroy them, but I’m trying to remember that joy returns for us all. I refuse to give up and allow the darkness to win. 

Thankfully, there are new mercies day by day, and as I’ve cried out to God about how immensely I love this child and how I long for her complete healing, I’ve grown in my understanding of His love and how He longs for reconciliation with us. As I wait on His promises, I will continue to love my family fervently and cling to the hope that there is redemption and blessing to come. I have control over nothing else.