It’s been a while. I would like to say that’s because everything has been just wonderful and beautiful, and for a period of time, it was. But lately it has not been so lovely, and I have been in strong denial of that and have not had the words to express what we’ve been dealing with.
Somehow putting it in words makes it more real and makes it more difficult to deny. I like to focus on the positive and speak life and believe for the best.
But, here’s our reality right now…
Last night we didn’t sleep. Harper was restless as she has been almost every night for the past month. She tosses and turns and thrashes and moans and groans and cries in her sleep, calls out for us in her sleep, makes odd noises, and wakes multiple times a night. That’s all a sign of the ESES returning. Last night was worse as she was waking to vomit, not because she was sick, but as a side effect of the seizure activity. It was a long night of heaving and muscle twitching and crying.
Her days are filled with more and more confusion. It can be small things, like at dinner last night when she was confused over a dinner roll on her plate and told me she didn’t know what to do with it. “Is this for eating? Does it go in my mouth? Do I use a spoon or a fork?” It can be bigger things, like forgetting to go to the bathroom or forgetting where the bathroom is. She’s repeating things over and over again, more so than usual. She forgets what we are doing or what day or time of day it is. At school she isn’t able to stay in her seat or complete her assignments, and she has forgotten skills that she knew just a month ago. She cannot be left alone for any period of time right now, so one of us is constantly shadowing her to keep her on track. Her tiptoe walking has gotten worse, her leg and foot muscles are steadily tightening, and her right ankle is now rolling under when she walks, all of which makes her fall more and more and tires her out more quickly.
ESES is a thief. It sneaks in and steals her progress and development so fast. It picks and chooses which parts of the brain it wants to attack and leaves other parts alone, and we’re left standing in the rubble wondering how it happens so fast. It is absolutely heartbreaking, and my baby doesn’t understand a bit of it. As I sat in the bathroom floor holding her in the wee hours of the morning this morning, she looked up at me with those big, brown eyes full of confusion as tremors shook her body, and it was all I could do to keep from sobbing. Because as much as I don’t understand, she really doesn’t understand.
It is in those moments that I struggle with the words to say or the words to pray. I try so hard to be strong for my girls and to teach them to be bold and courageous, but sometimes it is hard to model that. As I rocked Harper in my arms in that bathroom floor this morning, I just whispered the only thing I could over her again and again… “Jesus.”
Friends, sometimes we just need to speak the name of Jesus over our situation. In His name is all power and authority, healing, peace, promise, strength, comfort, light, life… through Him broken things are made whole, old things are made new, the rotten is redeemed, and miracles are manifested. His name is the name above all names- and I can think of nothing better to whisper in the darkest of nights.
For those of you who pray for our family, Harps has an MRI at Duke tomorrow to measure the cysts and fluid on her brain, and we are waiting for a word back from her doctor at Johns Hopkins about what steps to take next for the increased seizures and regression. 💜