once upon a time

Once upon a time, I was a new mom and probably too new to understand the gravity of the things that were happening around me. When my oldest was around five, she told us if she ever wanted to not listen to the whistle the gym teacher used, she simply covered up her 'good' ear. We made an appointment with her pediatrician, who referred her to audiology, who confirmed hearing loss, who then referred her to Children's hospital. And so, I was introduced into the world of jumping through hoops.

My first boy came with trepidation. Something felt...off. I felt like something wasnt right, things werent good. My boy cried all the time and while pediatricians smiled apologetically and called it colic, i felt there was much more going sideways. So I found the hoops again, and I started jumping through them. I voiced concerns about develeopmental delays, falling behind, muscle development, all of my concerns. I would get a smile (that to me felt condescending) and a reassuring "let's just wait a bit longer" reply. I'm not a "wait" kind of person. I am a now, instant gratification, person. So i found a new pediatrician and after waiting for what seemed like a year, saw the new doctor. Again, I voiced my concerns. Again, I saw the smile. I stopped the smile before it could turn into the words I had already heard. I said I could appreciate that I had very little knowledge or proof of knowledge in the medical world, but that i KNEW my son and i knew that something was not right. A referral was made. I began wondering why medical professionals gate keep.

At four years old, my son was finally diagnosed with cerebral palsy. From that point, jumping through hoops became my life. Whatever he needed, I would show up, hoops in hand, ready to jump through them all if it meant imminent approval for medical devices. We were denied a walker. Hoops jumped, arguments had, papers written, forms submitted. Finally, we were approved. This process was washed and repeated for a medical stroller, a multitude of Ankle Foot Orthotics (AFOs), and finally a wheelchair (that no matter how many hoops I jumped through, we still had to pay out of pocket for portions of the chair---and thanks to friends and family, this burden was light).

I'll admit- once upon a time- I was an excellent hoop jumper. I'd jump moving hoops (the phone tag, the call this person, not that person). I even jumped through hoops on fire (medical necessity denied, here's a paper you can file). I filed papers. I called people. I learned medical jargon. I spoke with the precision of a young lawyer with the acrobaticness of a tight rope walker. I was kind, but firm. I stood my ground and refused every denial that was sent my way.I questioned the background of those who have the power to approve or deny. I questioned their experience, their time with the company...anything I could think of- if they were going to deny my child, they better damn well know what they were denying.

Today, however, I sit here as a failure. It's been 389 days since I have driven a vehicle more than moving it in the driveway. I have bruises all over my body. This past week, I got a deep 2nd degree burn on my forearm. Why all these things, you ask? Because for over 389 days, I have felt dizzy. SO much so that I occassionally pass out. For 389 days, I have been confined to my house, at the mercy of when my husband comes home and takes me somewhere. I feel like a dog, waiting to go for a ride. Go for a walk, you say? What if I pass out? What if I fall and injure myself more than my kids can deal with...why would I put my kids in this position? So I stay home.

Anyone who knows me can attest that I am a homebody, but if you try staying home for 389 days, never having the free will to just go somewhere when you feel like it, I would think you might snap. I know I feel like I am. I feel like I am finally breaking. I have been given so many different anti depressants and anti anxiety meds....all of which have awful side effects and none of which help. I feel the way I do because I am stuck here. Yes I am sad- I am sad because I am stuck in this constant state of dizziness which leaves me stuck at home. Yes I am anxious. Have you tried being confined for well over a year, dependant on any other person to do things you used to be fully capable of doing? I was a doer. I wouldnt ask for help if I was on fire. Now...I am a shadow of the person I knew I was.

By now, I'm sure youre wondering if I have told any medical professionals about my delima. Rest assured that I absolutely have. Queen jumper of hoops has done every song and dance one can think to do for the help I need. I have had countless tests, some ridiculously painful, some traumatizing. I have had more imaging than most people have in their entire lives. I often wonder if I would set off a geiger counter.

What do I have to show for the tests I've endured? a stack of medical papers that all say the same thing: unremarkable. It isnt that I want to have some sentilating disease. I dont. I just want treatment for what is actually wrong with me. I have a deep 2nd degree burn on my arm from getting dizzy in the kitchen and stumbling into a hot cake pan that it took me a minute to move from because it felt like the floor was coming up to meet me and my body wouldnt move.

I feel profound sadness. I feel hopelessness. It's moments like this one when I am changing my bandage on my arm that I get why people want to end their lives of their own volition. No one is really happy with you. You're constantly needing babysat. You need constant rides to doctors, referrals, imaging, etc...because God knows you shouldnt get behind the wheel feeling the way you do. Your kids groan because the plan this year with homeschooling involved trips to cool historical places. Now? We hang out in the yard and around the house. Not the fun time mom promised, huh?

So I write today because I dont think I have anymore hoops to jump. I can advocate for others like a pro- but for myself, I am embarassingly meek and agreeable...and thanks to long covid, my brain fog doesnt allow me to be as articulate as I once was. I forget things all the time and dont remember to talk about the problems I've had over the last few weeks. I need some sort of help. I need to learn how to advocate for myself because if I do not, then I will surely drown. I am tired. How much longer do I have to wait on tests to keep saying unremarkable before someone treats my symptoms vs needing to have tests and imaging and this and that.I have scar tissue in my arm from all the IVs and labs. My arms appear to be those of a very clean but habitual intravenus drug user.I hate having to explain myself. Long covid seems like such a shitty shitty excuse for the state of my body. The hoops I once jumped through are as broken as I am. I am tired. I feel like I can no longer jump through hoops and I dont have the energy to make an argument for my health and well being. I am tired of the injuries sustained from my dizziness. I am tired of sympathetic but non acting medical professionals. I am simply tired.

the before and the after

I have been told that writing can be cathartic, even theraepeutic. In September of 2021, everything for me changed. It started with an awful sore throat and just feeling bad. Then a headache. Then, I couldnt hear, it felt like my ears had been sealed shut. Last, I lost my sense of smell and taste, completely. I thought I would be lucky and that would be it. I was wrong.

I was schooling everyone at home then and I had started to notice that I was having a hard time reading more than one sentence out loud to the kids. Then I started noticing that I couldnt walk from our couch to our bathroom without feeling like I needed to lie down. My first trip to the ER yeilded double pnuemonia and my first vagus nerve incident in which I passed out while getting an IV. I was constantly out of breath. My heart was constantly pounding. I couldnt shake how tired I felt.

Months passed. A few years passed. This is long covid.

Lasting effects?

*A bilateral profound hearing loss. I've gotten used to the quiet, but I also have hearing aids now.
*A heart rate that can only be controlled by medication. (pre-covid ave heart rate: 60, post covid at rest ave heart rate:145).
*I pass out randomly. Nothing really triggers it. Sometimes, I just stay dizzy for days, as if I'm on a ship in the Drake Passage and a storm has hit.
*It seems as if I have no immune system. I catch anything and everything that is going around.
*My energy level tanked. I have what some call chronic fatigue syndrome. I can make myself do things, but then I bottom out and I'm dragging horribly for days if not weeks.
*my body HURTS. my joints ache. my muscles throb. I limp while stooped over when I get out of bed in the morning.
*I have supplemental oxygen for when my oxygen drops into the 80s and it always drops into the 80s when I am active. I dont know why but I have issue using my oxygen. Ive been shamed a few times when wearing it, mostly (I think) because I look healthy so why would I have oxygen.

so now? I feel like a shadow of my former athletic self. I gained over 50lbs in the throws of sickness and was quite often told if i would just lose the weight, I would feel better, be able to do more, and breathe easier. So I lost close to 70lbs with absolutely NO change in my health. All the same symptoms, just a nicer looking body to go with it. I was given anti depressants, anti anxiety meds and I swear less than half the doctors believed anything I told them. Why? Because everyone seems content putting bandaids on the bullet wounds. I would say this cannot be normal and they would answer, well, you had covid, so this is your new normal.

I lost a huge portion of who I was: the girl on the softball field. the athletic girl. the active girl. She is gone. I'm the tired girl. The girl my kids groan at and roll their eyes to because I'm too tired to do all the things they wanted to that day- the things I used to be able to do. I dont think this should be called depression. I lost so much with covid. I feel broken. And I do not believe an anti depressant will somehow make me forget this or fix this. I FEEL it every day.

So now I live in the after. The land where I fake a smile and nod at doctors and diligently take my medicine and I stay stuck right where I am. I've done all the right things and nothing has changed. I forced myself to walk every day, so much so that when the month ended I could hardly believe that we had walked 70+ miles (this may be small potatoes to some but to the girl who couldnt walk to her own bedroom at night, this was huge). My body certainly felt it, though. I pushed through the tired. I forced myself to do more than any part of my body ever wanted me to do and I am still paying for it.

My frustration is palpable. Chronic illness, chronic pain, chronic tiredness. I am tired, both mentally and physically. I want some version of normal to resurface. I feel like no matter how hard I swim, I am being pulled under. So for now, while hopefully temporarily stuck in the after, I dream about hikes I can take with my family, map out walks that I cannot yet do, and plan for a future that I am no longer am sure exists...and I hope for the best.

Once again, it has been a while. Things are nearly the same as always. Our oldest has grown up, moved out, has a great job, a nice home, a great guy, and we are proud of who she is becoming. So now, we are one less than a family of seven. After lots of thought and debate and research, we decided to homeschool all the remaining kids, traditionally. At first it was like learning to walk again, or what I presume learning to walk again would feel like. It was scary and never felt like enough. Now? I have full curriculums (curricula?) for more than just their current grades, books upon books upon books, extracurricular work and activities, and so many science experiments that I could rival Bill Nye the Science Guy.

I'm dealing with grief. I lost both my mamaw and my papaw. One to cancer- my papaw, and one to alzheimer's- my mamaw. I never got to say goodbye- and not because of anyone- nothing like that. I stopped myself, out of fear. I was afraid to say goodbye. I was afraid to say love you for the last time.

I spent nearly my entire childhood in their yard and in their home, and mostly on one or the other's lap. When I got older, Sunday's were reserved at their place- just to hang out. I came over to work on homework, whenever I needed help, or needed advice. Mamaw taught me to read on her lap, reading book after book to me until I started reading to her. My papaw put a new swing set in their yard almost every year to make sure we had a safe place to play. Their yard was filled with an abundance of kittens to cuddle, and their kitchen always smelled like dinner.

I miss them. I miss them so freaking much. I miss papaw sitting on the breezeway. I miss mamaw telling me how talking to flowers helps them grow better. I miss her teaching me the names of various flowers, telling me a story about a rose bush that grew from a stick, and allowing me to plant a tree in their yard. I miss papaw giving me sound advice on all things useful from what I should unplug when I leave for a vacation to when a turkey should be taken out of the freezer to thaw. I miss hearing both of them laugh. I miss sitting on the porch, swinging and singing Christmas songs at the top of our lungs in the middle of July. I miss reciting "One dark, but moonlit night.." I miss helping prepare for papaw's famous grilled chicken and any dessert mamaw was planning. I miss life lessons with papaw. I miss the smell of his cigarettes. I miss the Schwann's man coming and mamaw ordering extra chicken patties because all the kids ate them. I miss koolaid and tang. I miss pancakes. Games of Life and Monopoly...and everyone's favorite: Mousetrap. I miss papaw snoring on the couch. I miss hugging them, because even though I am not a hugger- mamaw always hugged me extra tight- once for her and once for me. It didnt bother her at all that I wasnt good at hugs.

The childhood I had is long gone. The childhood I wanted for my kids isn't there anymore. No more are Sunday dinners, let alone family gatherings. No gathering of cousins. I never saw what the matriarch and patriarch held together until it all fell away to silence.

I had thought if I wrote out my feelings, I might feel something other than sadness...but instead I find myself staring off into space and remembering moments, books, laughter, the love yous, and all the hugs we gave.

it's been a while

As I sit on my front porch, I've skimmed lightly through some of my past posts. I havent been on this blog for quite a bit. Four years ago, my life and the lives of my family all changed. I look at pictures and I label them pre 2018 and post 2018. I absolutely hate what we went through. I'm still angry over it all. But I'm also thankful. During those awful and dark times, I didnt believe I would see any (positive)outcome. I believed I had lost everything and that I would have to start over. I thought everything had changed for good and I would never get my husband, my best friend, back.

Ive been to therapy. I'm not good at keeping up with it. Life happens. My kids happen. I cant seem to find the time for me. 4 kids get shuffled onto buses and one kid stays at home for homeschooling. My husband is working and they've added another day to his shift so now we only get Sundays off together. Therapies dont happen in the evening, they happen during school hours so, again, I cannot seem to find the time for me.

I find myself struggling recently. Staring off into space, zoning out out something negative. My reasonable brain tries to stop these things, but the bully part of my brain pushes any thought of reason out. I need to soak into the negative. It's funny, because I've had so many people praise me on always being able to see the lighter side of things- the positive spin, if you will. It's true, I can spin things positively on the external...but inside, I'm already ready for the worst case scenario and ten other narrratives that I've come up with in my anxious brain. I guess that is what trauma does to you.

But that's not why I'm here. I'm here because I'm tired of being one of those girls...you know the ones on tiktok that list off all their nervous tiks and issues and stemming and then answer it all with "because...trauma."

I've been through a ton. It sucked and if it were up to me, I'd rather just forget it all. Pretend it didnt happen. I mean, I guess that's avoidance, but is it really when I've lived in it, talked about it, wrote about, screamed about it, and cried about it? Maybe I'm just done. Maybe that isnt healthy, but I'd rather move on than soak in this shit until my fingers get all pruny.

If we are all honest, we've all experienced some form of trauma and I'm willing to bet if we scaled it all, there would be people who well outweighed our own traumas and have become successful human beings with happy healthy homes...and then there are those on the other side who have had smaller things happen on this all weighing scale...and are just an absolute wreck.

Is it possible to just move on with it? Can we just get over it? Can we stop being "triggered"? I'm not shouting this out to you because I can already feel readers bristling at what I am saying and if you are bristling, then maybe you should ask yourself the same thing, maybe...just maybe youre living too hard in the life of "I'm a victim"..

No, today, I am asking myself: Can I fucking get over it already? Can I stop being afraid to write in my own physical journal because I'm somehow terrified that if i write something down, I will write it into existance? (seriously, this ridiculous belief lives in my head) Can I just live in a day with my husband, let him be goofy, and not constantly question if this is a manic phase happening again? I annoy the hell out of myself. I'm tired of being paranoid. I'm tired of it all. I would prefer to choose happiness.

I'm tired of seeing the sadness around me. Stop seeking out other damaged people and believing you are kindred spirits. You are not kindred spirits. Fix yourself and learn to be happy before anything else. A post has been making its rounds on social media about how you are responsible for your triggers and that it isn't the world's obligation to tiptoe around you. And to me, this is true. I'd rather go back to a time when there was less concern about hurting someone else's feelings. When there wasnt a need for safe spaces and the instant gratification of the internet appeasing your busy mind.

I feel like so many of us are just letting what has happened to us *continue* to define who we are, how we behave, who we are attracted to, how we live...and that is just fucking wrong. If you're doing something and your reasoning is because of trauma, triggers, etc....then you need to stop. Tell your therapist. Tell someone. Reach out and figure YOU out. Stop letting the bad things that happened control one single aspect of your life because let me tell you...I've done it and I'm fed up with this bullshit.

Through the Looking glass

I've caught myself wondering a few times this month if I've somehow acquired seasonal depression. Where Christmas used to be this magical time of year, this year I could barely drag myself out of the house. Where trees were in every room of my house, decorated and themed...this year they were went up, with lights and save for our living room tree, no decorations were added. Christmas day, I just didnt want to go anywhere..and the day after, my trees and deco came down swiftly.... I still didnt feel "better". I caught a glimpse of myself in the mirror today and stopped and stared. Who the hell am i these days? The autumn of this year was shitty, to put it lightly and even through therapy, I dont think I've recovered I dont know that i will ever recover who I was before everything went to hell in a hand basket. I look in the mirror and I dont see strong. I see broken. I dont see resilience. I see exhaustion. I see downright sadness that is pulling me deeper and deeper into an abyss and I am too fucking tired to worry about it. I see bitterness because so few understand or know the mountain of issues I am battling...including dealing with one monster that has taken one of the closest people I could run to and alienating that relationship. I had to go through a box tonight and near the bottom were all the papers from September. All of Arnie's "notes" while he was in his steroid induced haze of crazy. And just like that: what I thought was a new pink scar suddenly became an open, gaping wound at a glancing through of said paperwork. I wanted to burn it but it wouldnt satisfy the rage I feel towards that life altering event that has no one to blame and everyone to blame all at the same time. All the awful things that were said...memories that I cannot erase seem to play on repeat on days like today. How no one in the medical field would listen to me. How I had NO rights. How I was left alone and hopeless. Hopeless. I see that, too, in that glance in the mirror. Hopelessness. And I dont need a list of how I'm blessed. I go through that list daily... and dont I know things could be worse...but do I really need reminded of that? I kind of bristle at the new year, new me posts. I dont want to tempt fate. Honestly, after what I walked through in 2018, I'm afraid for what 2019 may have in store for me. One thing is for certain, I realized first hand and the hard way that absolutely anything can happen to you in the blink of an eye....at the drop of a dime, your life can change and all that you knew and loved and found comfort in could be gone.

Take the picture

If you are happy right now, do yourself a favor and take pictures of these moments. Write about it, make notes, smile until your face hurts and then take more pictures. Life can turn on a dime and in that instant, your happiness can be stolen so quickly you won't have an opportunity to catch your breath. So take the photos. Remember the moments. Take a video of the laughter and love and light you have shining .. Because some day will come when you will cling to those memories so hard you will fear that you might break them. You will look so hard for a moment when it didnt hurt to smile that you will shake with pain and torment. Have proof that there were good times. Have some documentation that you were happy Because when you hit rock bottom, if you dont have those memories, you will be like me. A ghost. A sad bag of bones wishing you could just die. Struggling to breathe from the misery of losing everything that you didn't even realize you were taking for granted in the first place. Clinging to a person you loved...and who once loved you...with all your heart...with everything you ever had...clinging to them even when they've broken your very soul into so many pieces that it is basically just dust in the wind. I cant be put back together. This cant be undone. So take the picture, trust me. You'll need it.

life, for now

There's something to be said for mothers. We are resilient creatures, we are strong, and we are dirty liars. No matter how bad things are, how sick we feel, or how many things are going wrong; ask us how we are doing, how we feel- and we'll answer with a smile and the token answer, "I'm fine."
We lie. We lie through our teeth about how we're just fine as the walls are crumbling down around us.
It is simply impossible to know just how dark the days are, how lonely nights can be, in one mother's life. There's no counting the tears or catching one's self before a breakdown occurs.
The nicu broke me, newly a mother to 4, of believing I was any kind of strong. I wrote this small bit while our son was in the nicu. I sat in the dining area with two of our kids, watched my husband head over to the nicu and then I broke down. I sobbed heavily and decided I needed to put words to my tears.
-For 3 days I have sat here, multiple times a day and had mini breakdowns. We sit here as a family and try to be normal for the kids. We have meals that we had at home. We eat fruit snacks and just sit for brief moments. Then either Arnie or myself needs to leave. It's time to see Jacob. My heart aches that I am away from him at all. I feel sick with worry. Heavy with guilt. Regardless of which one of us goes, I break down. I wait until I see him take leave out the front door or I stand, in my own world, in the west elevators and begin to cry. I cry because I'm angry. I'm angry at myself for being selfish. I'm angry for ever complaining about being "big" and pregnant. I'm angry that I didn't get to enjoy those last two months of pregnancy. They were robbed from me and from Jacob out of nowhere. It wasn't preterm labor that robbed me- but a fluke of nature that deep down, I am 100% thankful was found but at the same time, I'm so angry and hurt. I'm so mad that I can't just sit and really cry because it hurts physically to cry that hard. I'm mad that my kids see me cry so often and quickly want to know what's wrong. My three year old, in all his wisdom, answered the question on his own yesterday as I sat in this dining hall with tears streaming down my face. He answered by saying, "I think she's sad because she wanted to hold Jacob and wasn't allowed today."- spot on, son. He hit the nail on the head. I'm also angry because I want to feel remotely normal but instead I am a jumbled ball of wired emotions, all fighting to escape me at the same time. Everything causes me to cry. I can't even explain myself to Arnie without breaking down. On another level, I am elated to have this new bundle of joy, who is doing as well as can be expected for his sweet, young age. My heart pounds as I round the corner to his room and see his cute, tiny body laying peacefully. My soul aches to pick him up and love him...but instead, I cautiously touch him, careful not to startle or wake him- just enough to feel him breathe and soak in his warmth. I steel myself for the nurse's news, praying to hear good news, progress, or holding steady.-

So I'm writing *now* to just tell mothers: cut it out. Don't lie. We are not always fine. We are tired. We are angry. We are sad. We are hungry. We are great.
Just don't lie.

So today I am not lying. I am not fine. I haven't been fine since the csection permission forms were laid on the hospital table. I have been broken, perpetually worried, feeling alone, constantly sad (yet elated at Jacob's health), and drowning in my own tears.
I was traumatized by the shock of the quickness of our premature birth. I felt, and still feel, like the ultimate failure. My body failed Jacob and me and continued it's systematic failures by refusing to produce milk for my precious boy- what he needed to help sustain his life, to help him thrive, I could not provide. I did EVERYTHING in my power to get my milk supply up and nothing worked. I pumped every 3 hours for 24 hours in 30 minute intervals around the clock for 3 weeks. Nothing changed. I spoke to lactation consultants, i called doctors. I made myself sick taking supplements but nothing worked. I was chained to a pump to produce less than 2 ounces in a 24 hour period. I was told to give up.
I was torn every day on how to spend my hours. I needed to see Jacob. Even if I couldn't hold him. My heart ached to be near him. I had to pump every two to three hours; we were encouraged to be a with Jacob for all his care times (every 3 hours), and we also had our 2 toddlers with us who needed their parents and needed normal. No matter what I did, I felt like a terrible parent. And every time I was asked for my milk for Jacob, my failures multiplied. I was exhausted, physically hurting from surgery, and emotionally drained...but when someone asked how i was, i would force a smile and say that terrible lie: I'm fine.

We're home now, thank God, but these feelings haven't left. I can't see a pregnant lady without fighting back tears. I can't show up at some place without realizing that the last time I was there, I was still pregnant and things were still normal. So, I cry. All the time. I am not fine.
Don't tell me things could be worse. My dark and terrible brain has already run the gamut of how much worse it could be. Where i am now is dark enough and I feel like I am hanging on the rim of a deep well. Am I fine? Hell no, I'm not fine... but I will be. I just need time. I am working on it. It starts by being honest with yourself and with others who care. I'm not fine yet, but I will be.