I remember sitting in the Neurology waiting room. It was November 14, 2013- my 28th birthday. We sat in silence for the most part. I had brought a devotional that I have now read through almost three times- Streams in the Desert by L.B. Cowman. The message for the day included 2 Corinthians 4:8-9:
We are afflicted in every way, but not crushed; perplexed, but not driven to despair…struck down, but not destroyed (emphasis mine).
As we entered into a room and the nurse saw that we were new patient(s), she quickly started a video and asked us to watch. She said the doctor would be in shortly after. The video was an early 90’s role play on different types of seizures. A seizure video? I thought. Isn’t this a little dramatic? We have some stuff going on, but it isn’t that serious. We aren’t those people.
Almost two years later, I sit in my living room, candle lit, Bible open, obsessively glancing over at our video monitor- waiting for the next seizure to begin.
After putting the girls to bed last Monday night, we went upstairs to find Bailey Grace having some type of seizure activity. Both Hugh and I agreed that what we saw was different than what we have seen before, but we were cautiously hopeful that maybe it was a singled out event. The next night, around the same time, round two happened. Round three happened shortly after, and it was then that we determined we would do an ambulatory (at home) video EEG to find out more information.
On Monday night, after noticing that Bailey Grace was in fact having seizure activity, we went upstairs to find much more than we anticipated:
Ally was having a seizure as well.
We turned on the lights, got the video in proper position for Bailey Grace and began using Hugh’s phone to capture Ally, and basically waited it out (the only thing you can do in that situation). As I sat there watching both of my children’s brain’s misfire minute after minute, surreal doesn’t quite describe my emotions.
We contacted our neurologist Tuesday morning and turned in the EEG equipment, anxious to hear what the report read.
Yesterday afternoon, as we talked through the findings, my mama heart crumbled.
Two different types of epileptic behavior were found. At one point, Bailey Grace was seizing for twenty minutes in the early dawn hours, and we had absolutely no idea.
The details are not to be shared as of now, but the bottom line is that both Bailey Grace and Ally are having two different types of seizures throughout the night, they are never entering into rest because of the connections in their brains, and yet again, their doctors are perplexed by the combination of activity they are seeing and are not sure how to treat it currently. In the next few days, we will check in to the epileptic unit (separately, unfortunately) in order to find out more information to help our girls as best as we can.
We are perplexed.
We feel struck down.
Yet, we are not driven to despair and-thanks be to God- we are not destroyed.
Real talk: there is a large part of me that wants to give my humanity and mama powers much more credit than I deserve. While we are pretty confident this is not the case, there is a chance that this activity has been going on for a while and we simply never caught it. Laying in bed, I stared at the monitor, just waiting to jump up and go show up for one (or both) of my girls. I wanted to rush in there and hold their little hands and tell them that I was absolutely there this time and that I was sorry for when I had not been.
Except that God is God and I am not.
The thing is this: as a parent, we long for limitless, perfect protection for our kids. We want to be there for them in everything. Yet, at some point in this parenting journey, we realize that our humanity gets in the way of this desire. The illness comes. The crying won’t stop. The friends say hurtful things. The cancer comes. The car wreck happens. Life seems to get in the way of our ability to do whatever it takes to rescue our kids from whatever comes. But God. As I lay there last night, He reminded me of the security of His presence. He reminded me that His Word says He will, “fasten (him) like a peg in a secure place” (Isaiah 22:23). And- only in the Lord, it shall be said of me, are righteousness and strength (Isaiah 45:24). You know, I don’t know why this is the first time we have become aware of these seizures are girls are having. I don’t know why God chose to make us aware within the same week. I don’t know if these were the first incidences or if they have been going on for quite some time. But God. He knows. His strength is made perfect in all my weaknesses and He makes it His responsibility to work out the details of this journey He is writing for us. The girls are entrusted to us but ultimately, they are His. We are called to simply move forward in trust. In all things. No matter what. Even when we feel afflicted, perplexed, and struck down.
“If your law had not been my delight, I would have perished in my affliction. I will never forget your precepts, for by them, you have given me life.”- Psalm 119:92-93
Friends, there is no greater joy than to find yourself in the midst of hardship and trial absolutely and completely kept by the God who uses all things for good and glory. There is nothing that compares with trusting that He is the One who has allowed whatever comes your way and that He has the ability to bring glory from disappointment and suffering. I would have perished- yet because of His great love, I have life. In all things. At all times. Regardless of earthly outcome.
“Therefore lift your drooping hands and strengthen your weak knees, and make straight paths for your feet, so that what is lame may not be put out of joint but rather be healed.”- Hebrews 12:12, emphasis mine
I believe with all my heart that God is using Ally and Bailey Grace’s story to draw people to Himself. The truth is, while it may appear they are the “lame” ones- in ways, I believe we are. Our hearts are distracted and fixated on earthly trinkets, when heavenly joys await. We choose to look at what seems to matter today at the expense of focusing on what matters for eternity. We are lame of soul, and Christ is the only answer. My prayer for YOU today is that you would see the Jesus in our family’s story and in turn, see the Jesus in yours. I pray you would look at our girls as a tangible reminder that there is a God who takes mutations and disability and seizure and makes something beautiful out of it. I pray you would find healing in the One who takes everything and threads it together for His glory and our good. Yes, we feel struck down. Yes, we are perplexed. Yes, our hearts are weary. Yet, thanks be to God that in Jesus, the victory is already won. Praise the God of the universe who has allowed and ordained and determined what is best for each of our lives. He wastes nothing. He is making beautiful things out of the very things that we think might break us. He is worthy of our trust, worthy of our praise. Everything has been filtered through His loving hands, even when our humanity cannot grasp the whys.
We know the Who and that is enough.
All glory, and honor, and praise to Him and Him alone.