I wake in the middle of the might, search for a tissue and begin quietly sniffling and blowing my nose. I'm not crying, I had fallen asleep crying and my stuffy nose caused me to wake.
I gradually remember why my eyes are now warm and puffy, and rather glued shut. In my quest this year to read as many memoirs as possible, hoping to learn how to write my own, I'm currently reading a recently published book called Raising a Rare Girl by Heather Lanier.
You see, she has a kid born with a rare genetic mutation, too.
Years ago, I had found her blog when I was searching for parents with stories like mine that I could relate to. It was called "A Star In Her Eye", and I loved the way she shared her on-going experience of learning to see and promote her daughter's capabilities when everyone else just saw limitations.
I could identify since I was trying to do the same myself; trying to see past my son's broken "limited" body to see the divine being within, worthy of love and care. Through her words, I heard my own thoughts and therapeutic writing echoed back to me. I felt like she could be a friend. She would "get" what was in my head.
So I couldn't wait to read her book even though I knew it would be hard to read without feeling all the feels, my memories triggered by her accounts of her memories.
And even though her daughter's syndrome differs from my son's in the details, so much of what we experience as mom's worrying about judgment and acceptance is the same.
*********
It's been almost 3 months since I wrote about Fat Bastard and how I'm trying NOT to be that Momma Bear stressed-out-special-needs-mom anymore (let it go....let it go...), but this life of restrictions during the Covid pandemic is really getting to me. We are coming upon 6 months since the schools and everything along with them originally shut down. At least in my part of the country.
I've been playing along because what else can you do? Plus, I don't want me or my family to get sick. So I've been wearing my mask. You know. Just in case.
But I'm really over it.
Seriously. I think we figured out the rules of this thing a few months ago. If you are sick or old or compromised, stay home. And if masks and social distancing works, the let's get on with life. Why is anything still shut down? As an introvert, I don't even like to get within 6 feet of people anyway. So why should I ever need a mask? Plus don't we need to get a whiff here and there to build our immune systems against this thing? We just don't want to go around licking door knobs or anything. My dad always said a little dirt won't hurt us. I feel like he might be right.
But I don't know. These are ramblings coming from a brain that is overwhelmed with seeing destruction and mayhem on a daily basis from "peaceful protests". I mean, I barely even remember why they were protesting in the first place. I remember feeling empathy at first, but the original message seems to have been lost, buried, and put to rest at this point.
All I see now is videos of people screaming horrible monologues of hate and vitriol directed at various groups they don't like or don't agree with and then destroying innocent people's property. And some people are getting hurt or dying in the midst of the chaos.
It feels third world, and there is no one to blame except those that are participating in it. And also, it seems so weird (almost suspicious) why no one in authority seems to be doing anything about it either. You have to assume they either don't have the authorization or power to stop any of it or that they support it and don't want it to stop. It's just all so surreal.
But enough about that, let's get back to me.
**********
As an empath, I can't help internalize it all, and well, I carry the heaviness which, unfortunately, keeps me on edge all the time and in a really bad mood. It's all so exhausting. And what I'm internalizing is starting to leak out on people in my path.
My husband has always been an innocent target of my bad moods, and has borne this burden with great patience. Sometimes he gets fed up enough and has to verbally put me in my place, but he also knows that venting helps me stay in this game of life. And, unfortunately for him, I feel safe enough in our relationship that I often take this privilege to unload on him for granted.
However, my internalized anxiety turned cup-runneth-over frustration over these last six months has put me on the verbal warpath when things are not going my way. I am on a constant walk of shame while dropping breadcrumbs of apologies everywhere I go.
The pharmacist who doesn't get my son's seizure meds filled on time, "Well it will be on you if my son goes into cardiac arrest from seizures caused from going cold turkey off his meds!" I say in frustration over the phone. The clinic receptionist who answers they must be running behind when I go up to ask why our appointment is running 25 minutes late as we sit in an empty waiting room, "Seriously? NO ONE ELSE IS HERE!" I impatiently lament.
During the appointment when the nurse says the lab tech isn't sure he can do my son's blood work after I answer he hasn't been fasting and had already stated that he had a seizure during the long wait before the appointment, "He's NEVER fasting! He's on a 24 hour continuous feed! And he has seizures all the time! If we cancel everything because he has a seizure, we'd never do anything! But if the tech is too incompetent to do labs, then I don't want him touching my kid anyway!" I seethe before I burst into tears.
Apology. And another apology. Apologies for everyone.
*********
I text "sure" when asked to play keyboard this Sunday even though I've been wavering whether or not to formally end my volunteer commitment to filling in on the worship team whenever they needed me.
Within 24 hours, I text again to say I won't be able to play after all (as I experience all the grief feelings that I always go through when giving something up).
Don't get me wrong. I LOVE singing with the worship team. And playing the keyboard is a close second to fulfilling some weird desire within me to perform music.
But now I have this overwhelming urge (again) to step back from any outside activities that take up too much of my time and have too many deadlines. And performing music takes up a lot of my time the week prior because, while I love it, I don't want to be unprepared and let anyone down. So instead, I try to over-prepare in order to have the confidence to sing or play by that Sunday.
And it's not the fault of those who ask me to do things. Remember I'm the one who keeps saying yes. I choose to say yes to this and other activities mostly because I'm a people-pleaser. But I also like to feel useful, and I want to appear to be, and feel like, a "normal" person (who just happens to have a time-consuming medically-complex kid on the side).
Also, if I'm people-pleasing then I might get a little praise and affirmation in return. And we all know by now how much I love to be praised and affirmed. I've basically begged for it out loud in so many words.
But the reason I should step back is probably obvious. I really should be focusing the bulk of my time on taking care of Austin and making him a priority because when I have something else that I deem to be more fun or important - or just because I made a commitment to some random request, I usually just do the minimum tasks for Austin.
And I want to give him more than just accomplishing minimum tasks. I want to give him experiences. I want to give us experiences.
I keep having to remember that I also made a commitment to Austin when I...I'm going to be blunt...didn't kill him before he was born like the doc encouraged. At that point I committed to a new adventure, albeit a chaotic, unknown, hard adventure, but one that I agreed to nonetheless. And there's really no going back once you say yes to an adventure like the one I said yes to.
So, ideally, I would like to say goodbye to my idea of "normal" and yes to...well...abnormal, different, interesting, exciting, unknown. I've been wrestling too long with the guilt of putting other things before him.
But wait, my mind whispers, how will I get my affirmation? My proof of appearing useful? I suppose Austin thinks I'm useful when his bare necessity needs are met. He confirms this by not fussing anymore afterward. And I know my husband thinks I'm useful because he tells me (and because, seriously, who are we kidding? He still asks me which meds we give at night or in the morning).
But what about the rest of the world? And why do I care if the world sees me as useful or talented or skilled? I mean, really it's exhausting to work so hard for outward approval. And to what end? A little dopamine hit that lasts briefly and leaves me immediately craving for more.
I wish to quit looking for approval and affirmation from outside of myself. Is this even possible? I wish to learn to find praise and affirmation from within. I know my worth. And I know Austin's worth.
Because really, I'll only get this one chance, this one season with Austin. And God knows, there's plenty to keep me busy if I really want to do this.
I think I want to do this. Actually, I really, really want to do this.
So who will wish me luck with my "new career" choice?
*********
(If any of this last bit sounds familiar, apparently almost 3 years ago, I went through a similar process of giving something up around the time of another full moon. I guess it's becoming my thing. You can read that account here if you don't remember: My Morning of Mourning...)
