This has been bouncing around in my head for some time now. I frequently go back & forth on whether or not I want to make it an actual blog post. I think I do though, so here it goes. We've been through a lot with our kids' health over the last 6 or so years. More than most, however not even close to what others have to go through. Our oldest, Emily, started having seizures at 11 months old. We had 6 hospital stays with her for non-stop break through seizures over a 2 year period. Two of those stays landed us in the ICU. On one visit Joel interacted with a mom who over the course of our stay lost her own child. It was heart wrenching and awful to watch. Her story is one that will make even the hardest of hearts sad. We had days where I literally had to get out of the hospital for a bit because it felt too darn heavy. The children's hospital is a paradox. It is a really sad & depressing place if you choose to only view it that way. But, it is also a place that you are so, so grateful for when you have need of it & so thankful for the care that is right there on the other side of the door during such scary times.
Our son, Jonathan, has had 4 febrile seizures over about a year and a half time frame. The first one he had I had the opportunity of witnessing on my own as I was pulling into the urgent care center for other symptoms. The lighter side of that experience was the looks the nurses gave me as they told me they could not believe how calm I was given what was going on. To which I gave them a short explanation that I'd been through it more times than I can really remember with our oldest.
Then our baby Kat started seizing with a virus she had just a few months back. I assumed hers was also febrile like Jon's had been, but found this to be incorrect after we spent a whopping 9 days in the childrens' hospital with her for her non-stop seizures that were kind of a beast to stop. The day I walked her into the ER downtown after her first one and told the receptionist that I was there because she had just had a febrile seizure I got that same baffled look staring back at me. He looked puzzled for a bit & I knew what he was thinking so I told him that both my older kids have had seizures too & I'd been there a lot. He kinda chuckled at me & said that he'd never had anyone so calmly walk in and just casually mention their kid was having seizures. It made me laugh a little too. An odd moment of humor in a kinda scary and, quite frankly, crappy time.
So why am I writing about this now? I guess because I'm still kind of in shock that our 2 daughters are both in this place now. It's so weird. So strange. So totally not what we ever thought we'd be dealing with, but here we are. It has me thinking a lot about hard things. The things we are asked to go through that we would never, ever choose willingly on our own. In a bizarre way I'm kind of thankful for it all. Not that my kids are dealing with this, don't get me wrong! But that it has stretched me in ways I didn't know I could be. Shown me that I'm made of stronger stuff than I give myself credit for. I guess, more correctly, that I am not alone in any of it & that I really can do all things through Christ who strengthens me. Even the hardest of things. It has also opened my eyes to things I would not even be thinking about otherwise. Like all the parents in the world with kids that have long term medical conditions & those in the same situation without the medical care we have right up the street. Like how truly, truly blessed a parent is to carry, birth, and have a healthy child with just normal childhood illnesses here & there. And how many times those parents don't fully realize what a miracle that really is.
It has also taught me to find joy in the midst of sad, hard, depressing times. That that really is possible. Seriously...it is. What can you do when you're stuck in the hospital with a kid who goes 48 hours without any seizures and then out of no where starts up again? Well, first you cry & get upset. Then after a while you start laughing. You find humor in the most ridiculous of places (probably because you are also delusionally tired). Another easy way is to walk through the rest of the hospital & gaze into the open doors noticing the ones that are actually decorated because the child has been there so long. To really look at the other patients you pass in the hallways. To see the parents on their phones with tears as they are explaining the most recent update to those on the other end of the line. That gives you perspective pretty quickly.
I have also learned a lot about gratitude for the "normal" days in my life. The days where we all are home together & just being silly. It's also about learning to rest & let go and realize you can't fix it, can't do it all, can't be it all & that's totally OK. Back in one of Emily's longest stays I found a verse that has become my favorite for some time now. It's Deuteronomy 32:51, "Let the beloved of the Lord rest secure in him, for he shields him all day long, and the one the Lord loves rests between his shoulders." As soon as I read this verse I visualized myself laying my head right between the shoulder blades on His back. I could rest & He would cover all that was coming at me from the front. He was my shield. It carried me through that hospital stay & has been something I think about frequently when I'm in a tough time. Learning to rest & stop striving because it doesn't really change a thing anyway.
So yes, we pray that our daughters will grow out of this & it will be a non-issue in the future. But even if it's not & they have to take medication the rest of their lives I'd be OK with that. I'm grateful that they are otherwise healthy, happy, intelligent girls. They are so very resilient too. It's always so amazing to me how much so they are. There are far worse things. Hard things won't kill us. They hurt...a lot, but they also shape us more and more into the people we were created to be. Less and less selfish and more and more outwardly focused. If we let them they can help us focus not on ourselves, but outwardly on those around us. Connecting with the hurt and pains of their lives that, because of what we've experienced, we actually know somewhat of what they are feeling and thinking. And finding healing in the process of being able to love on someone else right in the middle of their own storm that you've already weathered. It's kind of a beautiful picture when you view it that way.
I've also learned, because I've been this person, that when someone is hurting you don't have to say anything. You don't have to have an explanation or encouraging word. Don't have to pray some awesome prayer. All you need say is "I'm sorry." All those really want in that place is someone just to be there with them. Just to acknowledge that it is a hard place and there is pain. And food never hurts either. ;-)
One of the last hospital stays for Emily. Still having fun with daddy.
Same visit. Jonathan was only a few weeks from entering the world, as you can see.
Em's last EEG about a year & a half ago. I told her she was going to get a "colorful ponytail" (the leads they attach to her head all different colored wires). She just liked the extra attention. ;-)
Katherine in the hospital. Still smiling & posing away (she's saying "cheese!").
Kat at home for her 48 hour ambulatory EEG. It was an adventure all it's own. :-)
