Today was tough. It started at 5am, I had 4 conference calls to make for work, I’m covering for a co-worker on vacation, and had no assistance with the boys. I had to try and coordinate Caleb’s pre-school schedule, with Logan’s naps, and my calls, which resulted in an early pick up from pre-school, and a late nap for Logan to ensure he slept through my call and I only had to flex the mute button in between Caleb’s questions. Tack on to that the now 8th or 9th seizure for Caleb, (it makes me sad that I’m losing count), which instead of lasting the normal 3-5 minutes then pass out, lasted that, followed by at least a half hour of screaming and disorientation for my little man. Yes… Today was tough.
After the screaming and disorientation gave way to sleep, I was getting some work done when a friend of mine, and co-worker, reached out via I.M.. Eventually the inevitable question, “how’s the kiddos'” surfaced, and I explained that Caleb had been diagnosed with Epilepsy. It was the first time I really accepted that as the diagnosis. Up until now I’ve been holding out hope that the last one was just that… the last one… that we wouldn’t have to pursue the medication route, but seconds after Caleb was asleep I’d already called the Dr. and asked about our EEG results and if she could call in a second prescription. (***You don’t have to call/text/message me about the results, she didn’t have them yet, but was calling the lab and would call me back tomorrow. I WILL keep you all posted when we know something, and I DO appreciate your prayers).
During the midst of my conversation with my friend she mentioned how ‘strong’ I was, exclaiming she would be an absolute wreck, that she wouldn’t be able to handle it, too which I assured her ‘you would find a way’. Her comment set forth a train of thought though, one that’s taken quite a few years to finally reach its destination.
I learned really early on that emotion holds little value. If I wanted something, I needed to bring facts, logic, and impartiality (or one heck of a poker face) to the table. Any display of emotion would at best dock me a few points, at worse set me back further than I started. For a long time I thought this void of emotion made me somehow sub-human… well maybe just sub-girl. I viewed the meltdowns others had as cathartic, they could at least process their emotions and move on. If I’m being honest, I also craved a bit of the attention that accompanied such visible emotions. I could be screaming on the inside, ‘hey you have NO idea how much this hurts right now’, but without the display to accompany it, no one saw much to comfort. It still shocks me how easily people accept ‘fine’ as an answer, its like you can hear an audible “phew” coming from them as they whisk past to carry on with their lives. For me, any feeling I had would just enter a spin cycle, I’d go over and over it in my head pick it apart and put it back together, just to do it again. I was sure I was crazy, or at least on the fast track there.
Tonight I have peace that I’m not crazy. I know the story of my life has gotten me to this place to take care of my special little man in a way that only I can. I can only imagine what Caleb goes through during his seizures is traumatic enough. While there are NO words to describe what I feel, I believe that when he comes to, with a calm mama whispering to him that everything will be alright and holding him securely, his soul can find rest.
Tonight, after an impossibly long day, I find encouragement in my faith. That I can rest without worrying about what’s going to happen next, because ultimately I have no control over it. I may NEVER understand somethings, but believe everything does happen for a reason, and if we can remain open minded we might someday understand.
Tonight, I’m reminded that we are all beautifully and wonderfully made… and DIFFERENT. I’m reminded that how I process things doesn’t make me crazy, but that everyone processes life differently, and we were designed to, for our own unique purposes.
Tonight, as I accept Caleb’s diagnosis, I can remain thankful for all my blessings. I’m thankful for the awesome little dude he is, and I’m thankful that with this diagnosis we are lucky enough to have such infrequent episodes, that on a scale measuring severity by episodes occurring multiple times within an hour or day, that we’ve experienced under 10 in 10 months. Yet I remain fervent in my prayer that every one IS the last one, that the medicine we pursue doesn’t change one amazing little personality, but that its effective, and by this time next year this is nothing but a distant memory.
Tonight I go to sleep with a profound respect for an amazing God, and remain hopeful that he hears the prayers of many.
Today was tough… Tonight was amazing.
wow! another post that brings tears to my eyes! tears of joy while being reminded of the TRUTH! hang in there, friend! God made you strong for a reason! Love you!!!
such a good post and a good reminder Julie! Thank you for sharing 🙂