I haven’t written much in a few weeks now…which is quite odd, for me. I’ve thought about writing a lot, every day, actually. But somehow, I just couldn’t bring myself to grab the laptop.
Maybe it’s because….life has been busy? Anyone who is a teacher, or has children (or is both a teacher AND a caregiver, hats off to all of you out there! I am also both of the above, but am not doing both right now, so I hear you!! It’s tough work!), knows how damn full the days leading up to & starting a new school year are. There’s the school supplies to make sure your child has…oh, and do NOT forget to sharpen & label each one of your kiddos 30 pencils as well…I’m so NOT joking! And don’t be like me, & leave that until 11 PM the night before grade 2 begins, ha!! There’s the searching for & buying of the indoor shoes; a task which, in and of itself seems easy enough, BUT you must find some that not only fit properly, look the way your now picky second grader wants them to look, but they must also have WHITE grip and ONLY velcro. It makes sense, so as not to leave those yucky black marks all over the schools floors…I wouldn’t want to be the person cleaning those up day after day either!; but yeesh, finding such shoes without spending a small fortune is no “easy” task, I can attest to that! Then there’s the registering for extra-curricular activities. Once again, a task that seems only semi-life-obstructing in and of itself…but when you combine that with taking in to account the other 3 family members scheduling needs (and maybe your own needs as the mother) becomes something that causes you a major tension headache. Oh yeah…and then said extra-curricular’s actually begin, which although you have been looking forward to them, now means that you have another event or 2 (or MORE!) per week to plan for…and…oh boy….you get my drift! Of course all of this is lovely, and I’m blessed & grateful to have it! But let me say that it gets to be alot.
That relentless busy-ness COULD be the reason I haven’t written much….but that’s honestly not it.
Maybe it’s because….we received notification via mail 2 weeks ago that Evrett’s geneticist (whom we call our “head-honcho”) wants to see us in Winnipeg on October 5th. We agreed the day after they found the white matter abnormalities and 2 anterior temporal cysts in his brain that he would not call us all back to Winnipeg again UNTIL they had something that moves us towards his firm diagnosis. This is about the right time. It has been 6 months now since they began the third round of genetic tests, isolating the last 3 genes, that should give us a final answer as to what form of leukoencephalopathy our dear Bug has; it was supposed to take 6-9 months, so this is right on the money. At that point, it had also been 2.5 weeks since Evy’s EEG, and the technician who performed it said 2 weeks is how long it would take for our supervising Dr to contact us. (We needed to check for absence seizures, something we were fairly sure our Bug experiences, at least back in January we were fairly sure.) Evy didn’t fall asleep for the EEG, as would have been preferable…but the lady still said they “got what they needed”…which, Scott & I both know, most likely means she saw something telling. Given all of that, we know we are seeing our geneticist on October 5th because either he has a diagnosis for us…or, we are getting much closer to one. Maybe the news, and the unknown factor, of this crucial & long-awaited appointment has kept me from writing lately…it would make sense, right? It’s a lot to process…and how can we process when we don’t even know what our head-honcho is going to say yet?!!
This appt COULD be the reason I haven’t written much….but once again, that’s honestly not it.
Maybe it’s because….I have had my own demons to face, and I wasn’t far enough along in that process to even begin to write.
And that’s it. That’s the real reason for my silence.
I hadn’t felt physically, emotionally, or spiritually well enough to share any piece of myself with the outside world, let alone write about it on the internet! The surgery, procedures, and traumatic events of 2017 left my body, mind, and spirit forever changed.
It has gotten to the point now where I honestly don’t remember the last time when I felt physically WELL for longer than a day or 2. Lately, my debilitating vertigo (caused by a somewhat rare condition called vestibular migraines, which I have dealt with since age 11) has returned. It rears it’s ugly head for 3-6 days at a time, disrupting both mine and my entire family’s daily lives. Only this time, it actually involves the room visually spinning anytime I move my head…which means that during the peak of the spell, I literally cannot look after my sweet little ones myself. (Just in case I haven’t communicated it effectively, this is just sooooo much fun!…..NOT!) Oh!, and as if that wasn’t trying enough, the more common migraine pain comes afterward, and lasts for about 24-48 hours. So, on average, about 6-9 days every month, at minimum, I am almost unable to look after my family. (Thank goodness for my parents, who come over at the drop of a hat to help when we need them. Love you, mom & dad!!)
If that wasn’t scary enough for us, my emotional health has also been sketchy….at best. Treacherous, at worst. Despite my anxiety recovery since October 2017, despite daily meditation, despite journaling, despite counseling, despite being quite self-aware and sufficiently educated on the workings of the mind & body…I was waking up most mornings with a sense of doom that would almost suffocate me before I even got out of bed. An ocean of gloom so vast that it would take %98 of my daily willpower just to navigate through it, to wash my face and walk through my bedroom door to start the day. Once I would manage to get Cody ready for school and out the door, Evrett either ready for daycare or dressed for the day at home, and Lydia fed & her diaper changed…then, even MORE willpower had to be summoned to make it through the rest of the day without crumbling. Anger seemed to be hiding around every corner…and tears….and even panic attacks. But honestly, mostly ANGER.
Anger….but anger about what, exactly? It was coming out at my hubby, sometimes my kids, or mostly in private…but it was so strong that I felt almost controlled by it.
In a conversation with my mom last weekend, I figured out just WHAT I was angry at: THE WORLD. The damn world just won’t slow down!
I lived through surgeries & procedures & finally a weak & damaged liver during my pregnancy with our sweet Miss Lydia in 2017. (Oh, AND a surgery to finally safely deliver her!) I then lived through almost having my 2 week old angel die in my arms after that; seeing her sweet face getting terrifyingly closer to purplish rather than just deep red as she struggled to breath that morning of June 28th, 2017. I remember screaming at some unknown force greater than myself: “NO!!!!! You CANNOT have her!! I JUST got her, and you cannot have her!!!!” (No wonder I often feel like no one can understand how I feel…even as I write my own story almost 15 months later, it feels haunting, and unreal) Shortly after, we began our journey to find out what is going on with our darling Evrett.
Since then, I have started meds for anxiety (sertraline, or “zoloft” is the generic name), I have completed an online course with a certified CBT/NLP practitioner to address the roots of my anxiety & PTSD, I have exercised, written, journalled, meditated, stopped using my small amounts of red wine as a pacifier (I thought maybe by feeling alllll of the feelings all of the time, I would get healthier. Stronger.), and even more….but somehow, I am STILL not ok. And this truth made me downright ANGRY.
Anger is easier than crying because you feel like your physical body has been abused beyond repair. Anger is quicker than doing the research about what else you can do to better your health, physically & emotionally. Anger is simpler than finding the resolve to change a few more things about your life that could help you feel better & find peace…so, subconsciously, I chose anger.
Once I saw that choice, though, I chose otherwise.
Sure, I have done quite a lot of things to better my overall health, but there are indeed ways that I could do better.
So, tomorrow is day 1 of living on a Modified Paleo diet. This means NO processed foods, NO refined sugar/flour, NO dairy, and NO gluten. (there are soooo many medical reasons for this, but the biggest one is that gluten & dairy cause inflammation within body and screw with the autoimmune system. They can also enlarge the inner ear and therefore contribute to vertigo. NOT what I need!!) This won’t be simple, I have never been particularly strong at a “diet” of any kind…so, yes, I’m a bit nervous I will fail…but this isn’t a diet. This is intended to be a lasting lifestyle change. One I HOPE that those around me will be supportive of.
I have also begun a regimen of NATURAL supplements to help with my seratonin and dopamine levels (those are neurotransmitters, which are responsible for happiness & a sense of feeling level). And let’s not forget my hormones, which are running amuck, given all the hell my body has been through; so, I will soon also begin a course of treatment for them.
If you’re thinking that this sounds like a LOT, I would be the first to agree with you there! It has taken me 4 weeks of thinking, researching, and talking to my Dr’s to come to these decisions. Trust me, this wasn’t decided lightly! But the alternative….of feeling too ill to make it through a day most of the time…is no longer even an option for me.
I get tired from time to time, as I have felt so often lately,…the EARTH doesn’t just stop spinning so that I can take a time out and get stronger, heal, and get better….
What I have realized however is that I can still stop MY inner world from spinning. I can put in the hard work of emotional healing, the diligent work of being disciplined in my daily life, and the tough work of carefully choosing how to focus my time & energy, in order to heal. To get better. To enjoy our life, as we moved here to do nearly 2.5 years ago.
And so, I will do the work of steadying my world. One step at a time.
Hi, here is a big hug, I just read your blog! From one Mom to another, the anger will come and go forever, your child didn’t deserve this road, he is the one that really works hard every day to have a fulfilled life. For you Mom, in the past I have mentioned just Breathe, but it sounds like you need to laugh as well. You are strong and wonderful, you are taking all the right steps, and you are motivating me, I love paleo once I’m on it. Its tough when you are around that diagnosis time, your world is consumed, thank goodness for family! ..God doesn’t give you anymore in a day then you can deal with…. and I have gone to that phrase often. As you can tell I would like to help make you feel better so comes down to HUGS!!
Awww thank you, yes I do need to laugh more, great advice!
Miss you guys, and hugs right back for you guys and your own son ♥️