When “Jesus Loves Me” Is Hard to Sing
A while ago we were going through the most difficult trial we have experienced as a family. Our sweet Little E started having seizures one morning—no fever, no fall, no issues—she just started seizing. Her first seizure happened here at home; she began to turn blue and her breathing was extremely labored. We called 911 and the firemen and paramedics came. We rushed to the nearest hospital, where she went on to have two more seizures. Nurses flooded the room, oxygen was put on, her pajamas were cut off of her, shots were given, doctors were paged, and all Dirk and I could do was stand back and watch her tiny little body convulse on the bed.
We were transferred to Children’s Hospital of Orange County, where she had another seizure. More meds were given, and while they stopped the seizures, the anti-epileptic medications turned Little E into a raging monster. She had extreme strength, so it took every ounce of our strength to hold her thrashing body. Finally, Dirk had to just lay her in the crib and lie across her to hold her down and keep her from harming herself. As he did this I would lay my head next to hers, stroke her hair, and try to sing to her. “Jesus loves me, this I know, for the Bible tells me so . . . ” Simple lyrics that I had learned myself as a toddler now became one of the most difficult songs for me to sing—not because I didn’t believe those words, but because never before had I believed them so strongly. It’s easy each morning to sit at my desk with my Bible and journal and say, “Yes, I will follow you Jesus.” “Yes, I will do whatever it takes.” “Yes, I trust in You.” But when crisis hits we have a choice to either cling to Him and trust in Him, or to turn our backs and curse God.
There were so many uncertainties, but one thing was certain: God is good—and we clung to that. Never before in my life had my prayers been so raw or so real. Often I was just crying out, “God we can’t do this; please help! Please bring my baby back!” There was no format to follow, no list to pray from, no journal to write in, just real, raw communication with God. And meanwhile, as our prayers were being shot up to God and we were in this constant communion with Him, e-mails, texts, and Facebook messages were pouring in from friends and family, and even strangers, who were praying. I was getting texts from people praying all throughout the night. When sleep was scary, but so necessary, we knew that we could rest, even for just a few minutes, knowing that people were lifting up our baby girl when we couldn’t. It was in this that I realized the true power of the body of Christ, and how important each person is. I am still brought to tears as I think of the people who were praying for us, standing with us when we were feeling so weak.
As time dragged on, and hope was starting to feel difficult, I would often play over and over Little E’s sweet smile, her infectious laugh, her silly dance moves, wondering if we would ever see them again, praying that this monstrous behavior would cease. I watched Dirk sleeping on the bed, Little E finally asleep on his chest, after a 40-minute battle with her and started thinking of just 15 months earlier when he was in the same position, in a hospital bed, loving our brand new baby girl. I remembered how perfect her tiny little self was and how over-the-top in love I was. I remembered how I feared Big Sis’ reaction to having a new baby in the house, but now I worried that their sweet relationship would be severed by a new illness.
I had recently watched a documentary on seizure disorders, so of course my mind kept coming back to those kids and the devastated lives their families were living. Then I remembered something a good friend had recently told me: remember what you know to be true about God and cling to that. These circumstances don’t change who God is. Every time a “what if” came into my head I would repeat, over and over, the truths of God—mostly, “God, I know you are good.”
I’ve had trials in my life that were really hard—life-altering even—and through each of these times I clung to the Lord and He has revealed Himself to me, but never have I been so real and so raw with Him. Never before have I felt His presence so strong. I wasn’t always at peace; in fact I was in turmoil for much of the time, but I was constantly hurling that turmoil up to God, remembering to cast my cares upon the Lord for He cares for me (1 Peter 5:7). Through this I realized how much He really does love us, how much I really do believe Him, and how much I really do love and trust Him.
We have had two seizure-free weeks and I am confident that Little E is healed, but I also know that if something else comes up, as horribly difficult as it is, that God is with us and that He is good.
To each of you who have prayed for us, brought us meals, sent us cards, flowers, gifts, etc., thank you! And thank you to those of you who have let us know that you are continuing to pray for Little E. We will continue to meet with a neurologist and monitor her, and your prayers each day are so encouraging. I know I’ve told most of you thank you already, but really, thank you doesn’t begin to tell you how we feel. Dirk and I are so humbled and so blessed to have so many people supporting us. There’s not a day that goes by that I don’t think of each of you and think of God’s faithfulness through you. We love you all so much, and I wish that I could give each of you a giant hug and let you know how very much we appreciate you. Thank you for walking this journey with us.