I haven’t blogged in a while & some of you may be glad, y’all probably get tired of hearing about our woes. I mainly started the blog so that people would know our challenges. Most have never heard of Dravet & most of you never knew our innermost secrets. It’s not like we tried to keep Jack’s illness a secret, it’s really too complicated to explain while standing in the grocery store checkout line (unless I’m being checked out & the cash register blows up or there’s a price check-which is always a possibility). It’s not a ‘how’s your Mama & dem’ type of question where you reply ‘good’. So, if I ever bore you with our complications, sorry. I have been harshly judged for being so open about our experiences from some & that’s fine. I only know that the more people know about what’s going on, the more prayers, suggestions, & help that is going to come our way, not to mention the awareness it brings to Dravet.
The amazing part about this journey is the latest seizure freedom Jack has experienced. Jack experienced a huge range of medication changes over the last 6 months, from weaning the CBD oil, to a sleep aid, an additional seizure medication, & my own hocus pocus wizardry. That’s a lot for the body to digest! Jack’s last seizure was February 3…until last night. How we did enjoy the reprieve from the heart stammering stress that noise made to let you know he’s in distress. Along the course of the last 6 months, I also (under the advisement of his neurologist) did some weaning down from one of his daily meds, I am only hoping that this tinker was not the result of this seizure-only time will tell.
Everyday I make a log about Jack in a journal. Whether it’s as simple as saying no seizures, his mood, writing GTC which means generalized tonic clonic (another word for grand mal seizure or as we call it, a big seizure), or medication changes, I do it so I can try to make rhyme or reason if needed & to help me keep up with things. I have years of tallies chronicled. I’ve never been able to blame his seizures on a full moon or weather changes, but at least I feel like I am doing something to help me keep up with the chaos that is our lives.
I remember being a young mother & journaling about the day spent with the kids. I wrote about our days & how what we did. We did simple things like going on a picnic in downtown Rockingham by the water fountain & then we’d walk to the bakery for a treat, visit with elderly neighbors or relatives, or going for evening rides through the country with the windows down watching the sunset. This is what I miss the most. This is the type of stuff that is impossible to do any more. Dravet has robbed Jack in so many ways. Sunsets are my favorite, I called them cotton candy skies & would always take pictures of the majestic colors. Now, I’m lucky to see a sunset without the trees from our yard blocking my view. Jack still doesn’t want to leave the house, no amount of bribery works so we don’t even try any more.
This life is hard, much harder than I ever dreamed possible. I was never one to fantasize about what my future would look like, but Dravet was definitely not in my deck of cards-or so I thought. I started working at David’s Produce when I was 11 with several other friends. That was hard, hard work, but we had the time of our lives. To me, that’s what my future held, working hard everyday & having fun at the same time. I worked there for 11 years, under the best bosses ever. That’s where Lee & I met. I love working, love being a laborer, getting things organized, having tasks, interacting with people. And I love being a stay at home Mama too, so I am super glad we were able to provide that for each of our kids. What really burns me up is when people ask what I’m doing at The Berry Patch or they’ll say I don’t know you did anything. The absolute gall of some people. That’s basically like asking me when is the baby due & I’m not even pregnant! Being a stay at home Mama is still my job, but so is being a caregiver & a business owner. How crazy is it that I worked at a produce stand as a child basically & now help run one at the age of 42!
Right now, we focus on getting by second by second (literally). When nighttime comes, there is an audible sigh of relief that we’ve made it through another day. Everyday there will be sunsets, everyday there will be a cotton candy sky somewhere, I can only hope that the next sunset I experience is one that takes me back to a time of peace, calm, & hope for our family & one that we can all enjoy together.