There are specific points I have questioned just how many times one’s heart can break. How many times can it shatter? Does it ever reach a point where it crushes beyond repair? Or does the heart ever become immune to the beating so that the hits no longer hurt?
Yesterday as I sat alone in the hospital room at my daughter’s bedside, eagerly awaiting the latest updates from the doctor, I longed to be past the point of hurt when they dropped the bombs of bad news on me. “We know her percentages were previously thought to be at 80% and you were hopeful that it would be even lower, but she is at 100%.”
100%. Sleeping and waking. Full progression of the disorder that rips away at her brain. The loads of medication we have been pumping into her body to try to halt the disease have done absolutely nothing but wreak havoc on her body.
But they didn’t stop there. In addition, she also has developed a new type of seizure, called absence seizures. She’s having them steadily throughout the day, which means she is constantly in and out of consciousness and we don’t even realize it. They can be just a couple of seconds long to minutes long at a time, and during that time she has no idea of what is happening around her. These are coming constantly. This significantly impacts her cognitive development, making memory and learning even more difficult than it already was, and also explains the issues with moods and emotions we’ve been seeing lately.
We were sent home with a plan for now of weaning off of the Valium over the next month, prepared for the withdrawal effects that will bring. We will also at the same time titrate up to a high dose of a new medication to target those absence seizures, which has it’s own long list of negative side effects. We reconvene after the start of the year to determine if her body accepts or rejects this new medicine.
This morning I hit my knees in tears and prayer, longing for answers and comfort for the brokenheartedness I felt once more. I was reminded of my one word of the year that the Lord placed on my heart back in January- abide. I can choose to abide in my sorrow and hurt, or I can choose to abide in hope. And for me, my hope isn’t just a concept. My hope is alive, it’s a person, it is Jesus Christ.
So I washed my face and joined my family for a morning in the sun, hiking and taking in God’s creation. I watched my miracle girl bound up and down the paths and listened to her squeals of delight over all the “amazing” discoveries she was making about the world, and I scoffed at the doctor’s words in my head that we “must improve her quality of life.”
Yes, I know that things could be better for Harper. I know that living with your brain constantly misfiring and not knowing what is happening and struggling to remember and learn and feeling out of control is less than ideal. And I will give every thing I have to continue to fight for her and make sure she has the best care. I will travel the world over to find the best options for her, and I will continue to pray over every cell in her body until her healing comes.
But improving her quality of life? She doesn’t need my help on that one. She knows her purpose. She knows Who made her. She lives to worship and exalt Him. And I have yet to meet another person with more joy! I think we could all learn a thing or two about life from her.
So, we press on. My heart may break a zillion times, but “The Lord is near to the brokenhearted and saves the crushed in spirit.” (Psalm 34:18) That’s the beauty of abiding in Hope 💜