Tag: Chronic Illness

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Hello, New Me! pt. 2

“It’s all about new me.” – Lity Munshi

I know I left you hanging and I do apologize; but if I hadn’t broken these up that blog entry would have been doubled the size of any other entry, and from what my husband has said, entries aren’t supposed to be >that< long. Though this is still long AF… ::shrugsshoulders::

So what were my 3 intentions that I wanted to change while I worked through Holistic Witchery?

Initially I wanted to change the way that I think about myself and the way I feel about how I handle life with 2E [Twice Exceptional] children, especially Leighton being neurodivergent. However, as I got thinking and working, I realized it’s not about -how- I think about myself but -why- I feel the way I do. Which also made me realize that it’s more that I needed to change the way I think in terms of Leighton. And then for my surroundings was an easy/obvious one after the chaos of Covid. I need to get my home back in order, I needed to get organized in every way possible!! But the question was, what did they all have in common that I could use as one intention to focus on?

The answer: Balance!!

You see, I’ve never felt comfortable doing things by myself. Going to a store without another adult/peer, I felt that I didn’t belong. My senses were on high alert and I felt disoriented. Even being out with my children just didn’t feel right. I would get anxious even just being in my front yard alone, which left me inside, anti-social and my landscaping neglected. Plenty of neighbors are outside with their kids or doing yardwork and I just couldn’t with them there, without someone else with me. Of course these are not rational feelings, which is why I figured out it’s not a matter of thinking but a matter of why. Why do I feel this way? What causes me to feel so drastically different doing something alone vs. with another adult? I thought maybe it was a confidence thing, like how I hate talking on the phone because of my processing disorder. I lose my train of thought, can’t get the right words out and sound like a babbling bimbo. The deep rooted shadow of “not being good enough” seemed to fit. Although, I have come to see that this is more of a problem with my generation as a whole. We grew up in the era of online chatting and texting for communication. The anxiety is there for almost everyone in one way or another, therefore, lack of confidence is too surface level to be the [real] shadow.

No, the real issue at bay, which in a way could be lack of confidence I suppose, is the lack of {believing} in myself. <- I know that sounds rather surface level as well, but here’s where the deep “AH HA” comes in. As I explained in [06.HS/Diagnosis], I was really sick as a teenager. I couldn’t do things on my own, whether it was because it was dangerous or I simply just couldn’t physically. I woke up too many times in a bathtub filled with cold water when I was just trying to shower. I didn’t know when I was going to end up face first on the ground or hitting my head hard enough for a concussion from dropping. It. Wasn’t. Safe. Over the years my health has been up and down, especially through hormonal transitions from pregnancies, nursing, weaning, etc. With all of my deep diving through Holistic Witchery, I realized that somewhere in my subconscious I have been stuck between being a healthy, capable adult and the bedridden teenager I once was. ::BAM::mindblown:: I have been “sick” most of my life but after getting a diagnosis 17 years ago, I’ve done enough research and am in tune enough with my body, that I know when I’m [really] sick vs. just not pushing hard enough. <- and I HATE to say it that way but it’s true. However, it’s not about fear of pushing myself too hard but rather… at all in some cases.

I came to the conclusion that I have been using past experiences as a crutch. The fear of something happening while out on my own, is my lack of {belief} in myself. The lack of trusting that I know myself well enough by now to know if I really will be okay. With this, also comes my lack of driving. Yes, there are absolutely days and stretches of time when I cannot get behind the wheel. It wouldn’t be safe for me or anyone else. But that lack of belief in myself rings true here, with the help of anxiety and a side of PTSD. After the car accident [12. Life Detour] I was left with PTSD, I mean who wouldn’t after experiencing what I went through? Although, I was able to overcome it and drive regularly again, until I wasn’t. When I hit longer stretches of being sick, I know I’m not well enough to drive. However, I have also concluded that I use being sick as a crutch to also allow anxiety and deep rooted PTSD to keep me from going out and/or driving. This is where the lack of pushing myself hard enough and/or at all comes into play. There are days that may be [iffy] as to whether or not I should drive, but those ‘iffy’ days are a wide spectrum of gray, and more so lean towards the ability to vs. ability not to. Deep down I probably already knew this, but a shadow is a shadow and buried deep for a reason!

Since this revelation? I have driven myself to meet up with Mom#2 [07. Ode to My Mentors] for tea, I have taken the kids and myself to my dad’s pool, taken both boys to Menards by myself, taken Leighton to a doctor’s appointment, myself to a doctor’s appointment and a few curbside pickups. I’m sure there are probably a few other smaller things, like to my mom’s, but these alone are huge! Prior to this summer, I could count on my hands the number of times I drove from the Fall/Winter of 2017 to this Summer… it’s fkin sad. Don’t get me wrong, there were >definitely< periods of [long] stretches where I really was -too- sick, but looking back now, I can see where there were days I likely could have driven but fear got in the way. Now, did it feel weird AF driving and being out? Absolutely! Did I still feel like I didn’t belong and disoriented while at Menards with the kids? Absolutely! And I know that it will for a long while, if not forever, honestly. But that’s okay! I found the {why}, therefore I know that the only thing holding me back is myself – and I don’t want to anymore!! I KNOW that I AM [capable]! I am finding the balance between being that sick teenager and the healthy, capable adult.

Now for changing the way I think about how I deal with Leighton. If that even makes sense? As I’ve already explained in [Twice Exceptional], having 2E children is no walk in the park, especially when they’re neurodivergent. My mother has always praised me for how I deal with/handle Leighton and his “episodes”. I try my best but I won’t lie that it’s hard AF and beyond exhausting. It has challenged my marriage and my mental health. As a mother it breaks my heart to even say this, but our relationship seemed [forced] out of obligation at times. After nearly 10 years I found myself just feeling more and more negative towards him, even though I knew it wasn’t his fault. Yes, he may be a master manipulator, but at the end of the day he is still neurodivergent.

As I worked through Holistic Witchery I knew I needed to work on myself in order to change my mindset around him. He is very science minded, black and white, and if he can’t see it to prove and/or explain it, he doesn’t believe it. We already know Igor [14. Forever & Always] doesn’t believe in -any- of this, even though the science IS there. He just doesn’t understand it. Ha ha. That said, let’s talk about crystals for a moment. Science has proven that -everything- has different vibrational frequencies, right? And that energy can be manipulated based on those different frequencies. So wouldn’t it just be a scientific fact that an object radiating a certain level of energy could manipulate your own frequencies? And with that said, wouldn’t it make sense that different crystals, with their own different frequencies, could affect one self? Sounds simple enough to me… Do I believe that crystals can cure things over medical intervention? No. Do I believe that crystals can change your emotions or mindset, put up a ‘shield’ to protect your own energy from taking on others around you, or aid in the healing of certain ailments? Yes. Is it possible that it is just a placebo effect? Absolutely. Is there anything wrong with that if it helps someone become the best version of themself? Absolutely not!

Being the ever so inquisitive child that he is, obviously he wanted to know more about what I was learning and how things worked. About two years ago he was interested in tarot but Igor and I agreed that I’d take a step back from teaching him about it, as he wasn’t fully grasping the psychology behind it. He saw it as cut and dry and took everything at face value. Now that he’s older he’s understanding things differently. In fact Igor joked that I broke our child because he was able to explain how people born on the same day, at the same location and time could have different astrological birth charts, because they’re not in the exact same location in terms of degrees. I laughed so hard because that was [not] something I had taught him; I actually hadn’t spoken to him about astrology at all before that! He then went on to discuss how there are actually 13 Zodiacs and a whole bunch of other space knowledge. <- In case you missed it, he’s been obsessed with all things -space- for over 5 years, when he decided he wanted to be an actual rocket engineer. His dream is to help put man on Mars and my goodness I’m sure he will!

Anyway, as I learned more about honing in on my intuition, Leighton started to notice and understand that he too is [sensitive] and really connected. Which has been hard for him because he doesn’t understand how he just >knows< things. He is stuck between logic and feeling and still trying to figure out what it is that he believes himself. Which is perfectly fine, he knows both mine and his father’s views, and all we can do is explain why we believe what we do and let him figure it out for himself. Suficeive to say that his clairsentience and claircognizance are strengthening and it’s difficult to navigate when both parents aren’t on board. He absolutely hates whenever he hears about, reads or sees someone getting hurt. He could never explain why until this summer… As it turns out, he physically >feels< the pain that someone else is enduring, even just fictional characters in a book or movie. Talk about taking emath to the next level! He has also described things that he sees such as auras and colored symbols. Being the science guy that he is, he didn’t believe the thought behind crystals either. Of course, it doesn’t help when his dad bashes it. BUT, I knew he was struggling. The more my “powers” unlocked, his did too. Even Kellan has been bringing things up out of the blue lately that are spot on without any way of knowing. I think it’s safe to say that the energy within our household is definitely changing.

One day the light bulb inside my head went off. I realized that it wasn’t the way I think about him or handling his episodes, it was about helping him take control for himself. Through therapy and everything in the book, nothing helped in terms of coping mechanisms. So, I decided to try a different approach. For those who don’t know crystals, black tourmaline is believed to be one of the best protection stones. It helps shield your energy from negative getting in or positive getting out. If that’s too ::woo woo:: for you, think of it in terms of vibrational frequencies. It helps keep you neutral without being affected. I bought a couple different tumbled stones and told him to feel them, really truly pay attention to his mind, body and soul. He could take one and walk away, try a different one. Just see if he notices anything different among them. <- That was the day Leighton became a believer. He couldn’t get over how dark and heavy one stone made him feel or how light and airy the other did. He felt a sense of calm he’d never experienced before and his whole mindset changed. In fact, he had been afraid of “witches” ever since his second grade teacher read The Witches during class. Like, legit nightmares for years. When I started Holistic Witchery and some pathways in Enchanted Journey, I learned more historical backgrounds and tried educating him. That was when I started saying that I was a witch – trying to show him that how they’re portrayed in books and movies is simply false narratives. My doing so was more to help ease his fear from the book but it completely changed his mind about everything he thought in terms of the subject.

This summer we took a family trip to Traverse City with my dad and Brian. Before leaving for the trip I mentioned that there was a crystal store that we’d go to where he could pick out his own crystals. Something that he feels drawn to, to keep him safe. While the black tourmaline made him feel better, everyone has different frequencies remember? Therefore, different stones work differently for different people. To my surprise there was a new “witchy” store that had just opened a few months prior. I was SO excited to pick up supplies but also for Leighton to experience it. Igor and Kellan were bored as can be and left us there, but Leighton? Leighton lit up like a Christmas tree! You could just see the spark within him. He did the same thing with a few tumbled stones there and ended up picking out snowflake obsidian (similar to black tourmaline while also bringing balance between the mind, body and spirit.) and lapis lazuli, which is also a protective stone but also brings about confidence with self awareness and expression, and deep inner peace. After we left with some awesome goodies I asked him what he thought. He LOVED it and felt like he [belonged]!! He can’t wait to visit another metaphysical store and has already asked a few times when we’d be going. Oh my sweet child, you are my baby boy! Ha, ha. Things between us started changing and getting good early in the program but after visiting that store, everything changed for us. We now have this connection that isn’t forced and I genuinely want to spend time with him; and I even look forward to snuggling at night, which was something I used to dread. Yeah, I’d say this intention for change is checked off.

Next we have changing my surroundings. Just one look around the house and it was super obvious what needed to be done. EveRythINg! Though it wasn’t just my house, it was my life in general. Due to being sick for so long prior to Covid, and then having the kids home for a year and a half, everything got turned upside down. As I’m sure it did with most everyone. I used to have a daily/monthly/yearly cleaning schedule but all of that went out the window. It was too hard to keep up with, with everyone home and no one helping. Plus my major PMDD spiral [Awakening] at the end of summer 2020. Life had just been a mess. Which is exactly why I started this blog and joined TSE: I didn’t want others to feel alone, but at the same time, I realized through the community at TSE, that I myself am not alone. I’m telling ya, the community alone is worth it, haha.

But seriously. I needed organization in my life more than ever! I made myself a daily schedule that has a timeline for myself to get certain things done, an area for daily gratitude, an affirmation, and then extra notes or things to remember to do. I also made myself a new daily/monthly/yearly cleaning schedule that would better fit life these days. I made both of them pretty, and colorful, and they bring me such joy when I see them. Heck, I even laminated them and bought wet erase markers. Yup, getting my surroundings balanced was underway, but I was just getting started!

Igor and I had always talked about things we wanted to get done around the house, updating wise, but after 9 years nothing was getting done. Literally. Landscaping did but we didn’t have a choice. <- I kid you not, my house is a hot spot for trees being taken out by mother nature. Which is ironic as we ourselves have removed 9 from the front yard and 3 in the back. Mother nature took it upon herself to strike 2 trees right next to each other with lighting, a few years apart. Lightning doesn’t strike the same place twice, huh? I have proof otherwise. Unless you’re going to be like Leighton and argue for the sake of trying to prove me wrong, because it wasn’t the “exact spot”. ::rolleyes:: But seriously, in the back 3 full trees and 2 separate half trees have been knocked down. Then the city removed one in front due to disease and just this past week half of another tree was hit by lightning in front. WTF is going on? Michigan isn’t supposed to have this crazy weather!! Oh wait, hi global warming. ::shakeshead::

Anyway, sorry, I didn’t mean to go on a tangent about trees and the weather. Just needless to say landscaping was a necessity. But you know, homeownership is for the birds. And yes, I am about to go on another tangent because this is my reality. You have a problem, try to fix said problem, the problem still exists. Then a new problem appears which ultimately leads to needing remodeling work done, which leads to discovering [new] problems, which leads to more remodeling and so forth. It’s a stupid cycle! If you don’t own a home, don’t do it. Just don’t. You’ll thank me one day…

Okay, so the second tangent goes with my changing the surroundings to a point. Like I said, we had plans to update our house but just never did, cause you know – money. The one thing that I wanted done first was new flooring in the kitchen and family room, and Igor wanted new kitchen countertops. Which, I don’t blame him, they really were horrible! Our master bath’s are also horrible but I am ok with the cheap fix with contact paper for now. Err.. well, ever, because priorities have certainly changed as of this summer. ANYwho. So, last fall we noticed our kitchen cabinets were starting to fall apart. We thought maybe some was due to water damage since we got a new roof in 2019 due to leaking. Turns out it wasn’t damaged but rather just junk. Our cabinets literally started to crumble. In fact, as Igor was removing one it all came apart and the shelves slammed down onto his head. ::sadfaces:: In March of this year we decided to go with a new Ikea kitchen. I designed it, we met with a member at the store, had their guy come measure but we sat on it. Igor couldn’t decide between a wall oven with a cooktop or a new range all together. I personally would have been fine with the range but whatevs. So for a few more months we played around with designs until I had enough.

Since Igor had to work my mom took me to Ikea to meet with a new kitchen specialist, to assure that our design was going to work and finalize everything. If you hadn’t already figured out that I am a person who second guesses everything and hates to make decisions, then I’d say you’re not actually reading my blog posts. But do you know what my new found confidence from TSE allowed me to do? I bought the damn cabinets!! Igor was in a meeting and I couldn’t get a hold of him and I just did it. > I < made the decision! Nevermind the fact that as soon as I sat in the car, I had to stick my head out of the door to throw up, right there in the parking lot. ::hidesInshame:: I have never had that happen before, ever! I didn’t even realize that my nerves were so heightened but it makes sense. My mom said that she had never seen me so composed, unanxious – I was like a completely different person going through that purchasing process. I’m sure you know what I mean when your parents tell you they’re proud of you, it’s just like “yeah, okay, thanks.” <- or maybe you don’t. I am sorry to assume; I know that I am very fortunate to have such a supportive family and that not everyone hears their parents tell them they’re proud of them. I think [my] parents have told my husband how proud of him they are more than his own ever have. Please know that I don’t take those words for granted, all I’m saying is, that day I {really} -felt- her words!!

When we went to Ikea in March they told us it could take 12-18 weeks to get all of our cabinets delivered/in stock. And when we met with countertop places they said it would be 4-8 weeks -after- the countertops were installed. WHaa??? I think that’s why we sat on it. It just seemed like the process would take forever and we’d be living in a nightmare. Little did I know, after ordering the cabinets the bulk of the order was able to be delivered less than 2 weeks later. Maybe that added to my getting sick in the parking lot, because it just got real, real fast! So they were delivered and I went to town building the bases of them. Out of 30 cabinets, I had all but maybe 6 completed within a week and a half. I was ready to get the ball roooolling. Problem was, we had no idea who would do the actual installing. We hadn’t found our countertops or flooring either. Hello stress overload, not so nice to meet you again.

My father in law is the kind of guy who [knows a guy] for everything. Being in that Ukrainian/Russian speaking network has its perks… to a point. Both of his guys said they couldn’t do the full projects until the Fall. So, I also went to town on disassembling the kitchen to help speed things up and hopefully make it cheaper for when we hired someone else. Buuuut my FIL wasn’t having it and convinced one of his guys that it wouldn’t be that big of a project, just come in and hang the cabinets. OMG did I feel terrible for him, he was so manipulated and I had no idea. My FIL also convinced his other guy to send one of his employees to do the flooring. What should have been a 2 day project turned into a 5 day project and a second guy was brought in for days 3-5. ::oyy:: This is where the point of why you shouldn’t be a homeowner comes into play. Upon removal of the carpet in the family room, we discovered that our door to the deck, one we NEVER use, was rotting on the inside from water damage. We knew the outside was an issue and that getting new windows was the only option to fix it. Which we planned to do, but again, money.,, one income household of 4 and a cat. So, we needed to remove the subfloor, bleach the heck out of everything structural to remove any built up mildew, and spray a ton of anti-mold stuff or something like that. All I know is the family room was tapped off with plastic for almost 24 hours. Now the pressure is back on to try to find someone for windows asap. We met with 3 companies last year but again, sat on it. And now with inflation it’s a nightmare! Remember when I said it would take 4-6 weeks for countertops? Yeah, I dreaded that process most of all! BUT in actuality, the whole process took less than two weeks, thankfully!! It took 8 FULL days broken up over the span of 4 weeks to get all of our cabinets installed, plus lighting and electrical replaced. And that’s just bases installed. Igor and I have been spending most of our free time building all of the drawers, installing them, installing doors, and adding hardware for like 2 weeks now and it’s still not done! So. Many. Drawers… Not to mention they messed up and sent us things we don’t need and left out some things we do. Cool.

::Breath::

I honestly have no idea when the kitchen will actually get painted, backsplash installed, or the decorative stips on the cabinets will be installed, but it’s getting there. I am SO excited to start the organizing process of the new drawers and everything! I got plastic bins and containers so I can ditch the boxes. We had to get all new cookware for the new induction cooktop, that I chose [purple] to match what the kitchen -will- be! Yes, I will have a purplish kitchen, and yes am I excited. Ha, ha. <- So alas, I legit changed my surroundings in the form of designing a kitchen that’ll better fit our needs, and allow me to keep things better organized.

I really am in such an amazing place, mindset wise! I am confident. I am capable. I am balanced. I am courageous. I am not afraid of failing, as it’s just lessons learned. I am not allowing my comfort zone to hold me hostage. I am thriving. AND I am [employed]! YES, yes you did read that correctly!!

Remember the last post where I mentioned that I reached out to -The Sisters Enchanted- and asked for a job flat outright? About that… as I’ve already mentioned, I went into this with a goal in mind: to work on myself and figure out a way to make money. At one point earlier this summer, I thought that maybe I’d get more into tie dying and sell some work, which, I guess is still a possibility. The kitchen remodel kind of took over my whole summer and so many plans went out the window. But, that is okay!! My heart is with what TSE has to offer and in just 4 months, they must have seen it as well! I {legit} worked my >own magic< and manifested a job for myself!! WHAT!? Yeah, that scared woman in limbo is no more. It has only been a week since I started as an independent contractor, working in Customer Service and Student Support with a little Operations on the side. AND I COULDN’T LOVE IT MORE!! I am just so happy to be a part of the vision that Sara Walka created! I have also been entrusted as the group “Mom” for one of their smaller, most intimate groups. It is my job to keep them engaged and encouraged, with all the love, light and support I can give! I have found my purpose! It’s still so surreal considering it’s been almost 11 years since I stopped working at the urgent care, and have been a SAHM ever since! Nothing is coincidence, it was Taurus’ New Moon where I set my financial intentions, and by the end of Taurus’ Full Moon cycle, I will have completed the ‘90’ day trial that I was initially set up with. But the funny thing is, after only one week, they’re all already talking about long term plans and using “when” instead of “if”. Yeah, I think this is going to work well for us all! <3

And on that note: If you are interested in checking out what TSE is about and how they can help you, help yourself, to become the best version of yourself that you can be – they/we? (OMG, it is we!) are hosting a 5 day workshop called, Magic Week, where you’ll walk away knowing your Expansion Archetype, with a sense of how to manifest and live a magical life based on your individual result. It all starts October 7th and if you’re interested, or would even like to just read more about it, you can do so here: The Sisters Enchanted’s Magic Week workshop. 

I am telling you, it is never too late and AlwAys worth it, to invest in yourself!!! And no, I promise you this blog hasn’t just become an add for TSE and I wont be throwing promotions at you left and right. I just really believe in what they’re all about! ::nodshead::
Love, light and hugs to all!

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Guilt, that nasty B.

“The measure of who we are is what we do with what we have.”
-Vince Lombardi

Anyone with chronic health conditions knows how much it sucks. It sucks for the patient both physically and mentally; yeah, that mental mind fuck of a rollercoaster is a bitch! No matter how many times you beg to get off, Joker is in the background with that horrid mischievous grin and his hands on the controls. But let’s be honest, it’s no walk in the park for those who love and support the individual suffering, either. And I say suffering because that’s exactly what it is. There may be good days but [life] is about -survival-. Hell, it is for everyone, not just those who are ill! Maybe Buddhists have it right by believing human life is about suffering! ::NodsHeadThinkinginAgreement:: As one who is chronically ill, I can assure you that the guilt you feel knowing that at any moment you could let someone down, is enough to not allow yourself the opportunity to do so. It’s easier to fold inwards and isolate. And yes, I do speak from experience. I also speak from experience from the other side as well, being a child with an ill mother.

Back in my initial blog about my mother [03.Mom] I made the comment that as a kid, I saw her either sick on the couch while at home with my brother and I, or out every weekend having fun with her best friend at the time. Obviously as I got older I understood and saw things drastically different, especially after becoming a mother to my own neurodivergent children [Twice Exceptional]. Girl needed a break!!! However, I never wanted this for my children! I never wanted to be the [“sick” mom on the couch] where my 6 year old has to ask every day at pick-up if Mom is sleeping or not. I never wanted for them to attend school events with mostly only their father because I wasn’t up for it. I never wanted to have to let my children down because of my health. But guess what? Chronic illness, being the bitch that she is, doesn’t give me a choice… ::blowssteam::

Yesterday I was reminded with a smack in the face about how unstable my life can be when it comes to my health. I had put my name in the hat and won the draw for being able to help out at the elementary school, helping the kinders tie dye shirts. I was SO excited when I saw the initial inquiry and almost cried when notified that I had been selected! Igor had also put his name in for chaperoning their one and only field trip taking place just two days before the last day of school. He, too, won! To say that Kb was beyond excited is an understatement! Seeing him happy knowing that we both wanted to be there and were both selected, was everything. <3

And then came the innocent question the night before… “But, what if you pass out before or aren’t feeling well?” with a quivering pouty lip. The heartache I saw behind his eyes shattered me at the thought of it! It took everything in me to smile and reassure him that I -would- be there!! He was nothing but smiles afterwards. The next morning I got up extra early so that I could shower and rest beforehand so that I wasn’t rushing and could conserve my energy. It was a damn good thing I did or else I don’t know if I could have pushed though; it was a rough morning. I had to have been flying high with adrenaline, it’s the only explanation. Kind of like when you have a big event or vacation – your body doesn’t [always] let you down until the hard crash at the end or upon return.

After getting ready I crawled into bed with my not-so-little baby boy and just snuggled him until he woke up. The first words out of his mouth, barely a whisper? “Are you ok today? Are you going?” ::breathes:: “Yes, baby boy, Mommy will be there! I promised you, you know I don’t make a promise I can’t keep!” <- Even if I had to be wheeled up there in a wheelchair, disheveled and grotesk, it didn’t matter what other parent volunteers may have thought of me, I was only there for my son. He would know that I [showed] up and >kept my promise< and that is more {important} than any opinion that isn’t even my business!! Fortunately for me, I was able to get ready, I was able to show up and even drive myself home in the rain after. (Igor had driven me up there and walked home so I could have the car, not knowing when I’d be done.) It was chaotic, very energetically draining but also incredibly rewarding. Not only was he happy, but he was -so- proud that I was there! When he got home from school he yelled that, “today was the BEST day everrrrr, because I got to see you!!!” ::fightsbacktears::

Yeah, having chronic health issues sucks. Letting anyone down sucks. Letting your children down? Probably the worst guilt ever! However, sometimes, having chronic health issues doesn’t show you the ugly truth that you believe it to be. No, sometimes it allows you to see and -feel- the gratitude for being able to follow through. Sometimes it reminds you how brittle time is and that embracing the good in the moment is truly the gift of life. So (at least for) today, I see it for what it really is; everything. <3

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21. Miracle Baby

“I was given such a great gift. It’s a miracle that never stops amazing me and reminding me to give thanks, every day.”
– Jake owen

With my {miracle baby} turning > s i x < less than a week ago, I can’t help but reflect on how he came to be. Though, if I’m being honest, both of my children are miracle babies. And no, I don’t mean in the whole ‘all babies are God’s miracles” way. I mean, it’s legitimately impressive that they’re here without [complication]!

See, we didn’t know it at the time, but when Igor went for his vasectomy we discovered he only had -one- of his vas deferens. A missing vas is usually associated with renal agenesis (the absence of one or both kidneys) / abnormalities and / or genetic mutations. The urologist said that he had never heard of it otherwise. So, Igor went off to get an ultrasound only to discover that he, too, is a zebra himself! <3

For those not part of the {chronic illness communities}, in medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct, to expect common conditions. The phrase taught to medical students throughout their training is, “When you hear the sound of hooves, think horses, not zebras.” However, many medical professionals seem to forget that “zebras” >DO< exist, so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions, such as myself!! There is {no} explanation for why Igor only had one of his vas deferens, and seeing as the urologist was stumped himself, I declare my hubby a “zebra”, even if only an honorary one.

That said, the fact we didn’t end up with fertility treatments is the first miracle itself! I even got pregnant with Leighton on our first try. Our good friend Matt [Friendships pt. 2] likes to joke that Igor has -supersperm- as a result of Chernobyl. <- Which, may be in poor taste given that Chernobyl is considered the worst nuclear disaster in history… buuuut is it not {also} possible he may be right? ::joking;kindof:: Having Ehlers-Danlos Syndrome [06. HS/Diagnosis], I was at risk for a variety of complications, from not being able to maintain pregnancy or delivering prematurely, to hemorrhaging, especially due to my platelet disorder: Delta Granule Storage Pool Deficiency. According to St. Jude Children’s Research Hospital, DGSPD “is caused by a lack of dense granules and the chemicals normally stored inside them. Without these chemicals, platelets are not activated properly and the injured blood vessel does not constrict to help stop bleeding.” <- basically meaning, I’m a bleeder. I have to be honest and admit that while I knew about EDS {shout out to May being EDS awareness month!}, I didn’t truly understand it when it came to pregnancy, at the time I was pregnant with Leighton. We were concerned about premature labor but my obgyn was much more concerned about my bleeding and the potential need for a hysterectomy due to said bleeding.

As I mentioned in [Twice Exceptional], I had Leighton at 35 weeks+5 days. At 33w3d I was sent for a stress test and discovered I was in preterm labor. I guess I’m so used to pain that I didn’t even realize these were [decent] contractions and not just Braxton Hicks. After a few hours they decided to send me home but to keep an eye on my blood pressure and if contractions started up again to go back. In less than 24 hours I was back in and admitted for the night. We already knew that I was going to be having a c-section under general anesthesia because of my doctors’ fears over bleeding. They didn’t want to give me a spinal and cause more harm, only to have to put me under should there be an issue. The morning of the day he was born, my obgyn was concerned that I was going to end up in an emergency situation. She didn’t want to send me home only for me to come back to a busy ward without platelets on hand. She believed based on how I was progressing that I wouldn’t make it a week, and felt it was the safest, smartest option to deliver him that day, while there were two doctors to oversee it, she would be there (as it was her hospital day), and being morning they had fresh platelets on hand and could reserve them for me. That quickly became the scariest day of my life, up to that point! Like I said, we didn’t know enough back then but you better believe I did my research the second time around, because having a child under general anesthesia, not knowing if I was going to wake up with or without a uterus – or at all, miss the first cry, my husband not being allowed in the room, and so forth, >definitely< lead to birth trauma!! I felt so disconnected from Leighton, and honestly I still do. I don’t know if it’s from the trauma or his neurodivergence. I just know that I love him fiercely, but our bond is nothing like that of which Kellan and I have. Over the years there have been times it felt fake and forced and it breaks my heart to even admit it, but here I am… Telling my truth. The next miracle: being born at 35+5, at 6lbs 11oz – baby boy [never] spent -any- time in the NICU (which is good because he would have been transferred downtown to Detroit Children’s Hospital) and went home with me when I was released!!

Having a 2E child is challenging beyond words! With everything that we went through those first 3 years, we honestly didn’t know if we’d have a second child. We had always talked about having 2 and if they were both boys, we’d adopt a girl. Only in a “perfect” world, right? I shake my head at our naive young selves. It took until hearing the words, “you’re not ovulating” and “you may not be able to get pregnant again”, to realize how badly we actually wanted a second. Knowing that choice was essentially [possibly] taken from me, cut me. Deep.

Huh, just right now I realized, I think that I need to backtrack on my comment about not needing fertility treatment. My [naive] understanding of treatments was always so much more in-depth than just taking medication for ovulation induction (OI). After thinking about the fact that I >did< use oral medication to try and “re-boot” things, I decided to see what actually was considered ‘fertility treatment’. Lo and behold, OI is infact one of the first methods! Wow. You learn something new every day, and I’ll [never] stop learning anything I can. Knowledge is power, my friends! <- Which is why my 9 year old son knows about what is going on with the Supreme Court, at this moment in time. When he found out, his first reaction was to ask, “but what about if the mother’s life is in danger?” Oh my heart, sweet boy. I’m not going to go on a pro-whatever- tangent, I just think it’s incredible while also very sad, that this {child} understands it’s >not< a black and white situation – and he is very much a black and white type of person!

I did two “cycles” and viola, I started ovulating again. Seven months later, I was never happier to see two pink lines! From about 6-8 weeks I had to have regular blood work due to what is medically coded as a “threatened abortion.” <- Because that’s always fun to see on paper when you desperately want that child. And just so we’re clear and there is no misunderstanding, a threatened abortion means :possible miscarriage:. Also during those weeks, I had to use vaginal suppositories daily. I share this because 1) this is my truth and 2) [awareness] as I had -never- heard of anything like it before. I had to get them from a special compound pharmacy, as well. The whole point of my blog is to help others, right? There should be no shame in discussing women’s reproductive health; so ::sorrynotsorry:: if you found that uncomfortable.

It was very evident from the start that I needed to see a [high-risk] ob/gyn, again, only this time my doctor recommended that I head to UofM, completely out of her “network”. Hell I wasn’t going to argue, you want the best of the best, right? Man am I grateful I did!! See, it was at UofM where I discovered that even with my bleeding disorder, hematology cleared me for a VBAC (vaginal birth after cesarean), shall my other doctors agree! Missing Leighton’s birth caused a lot of trauma and I wanted more than anything to have a natural birth! More. Than. Anything! Having an epidural was more of a risk to me due to bleeding, plus it puts you at greater risk for needing an emergency c-section, which would again result in me likely being put under. Nope! I didn’t want to risk any of it so I started practicing hypnobirthing. I had my essential oils picked out, I had my music prepared and had been going through all the prompts with my mother as she was going to be my coach though it. She is my calm, which, duh? Of course she is, she’s my mom!

My team of high-risk OB’s couldn’t give me a definitive answer of course, but they knew it’s what I wanted and it was listed as my birth plan from day one! At 21 weeks I started progesterone shots to help prevent preterm labor, but had to stop after 2 weeks. At this point I hadn’t been diagnosed with PMDD, so I didn’t know that those added doses of progesterone would cause me to spiral downward, fast! That was the first time (that I knew of for certain) where hormonal depression kicked my ass! I mean, I figured I was a mess when taking the pills for OI because it was meant to shake things up, I just didn’t realize they were a contributing factor. Nor did I realize that what I was feeling with the suppositories wasn’t just [normal] “pregnancy hormones” with the added stress of a -possible- miscarriage. Nope, as it turns out, my body doesn’t handle progesterone well. I didn’t discover until after I was diagnosed with PMDD, that natural progesterone levels are at their highest right after ovulation, which is exactly when I start struggling; <- explains a whole lot as to why any time I was on birth control, I also ended up on anti-depressants! So, not being able to take the shots meant more visits and added ultrasounds as once again, I was at a higher risk of losing the pregnancy, not just going into preterm labor. Yay me…

Around 28 weeks baby boy was thriving! He was in the 67th percentile, so it was really up in the air as to if I’d be able to have a VBAC. If he continued to stay far ahead the closer to term that I got, my chances for the natural delivery that I wanted would drop lower and lower. By 34 weeks he had dropped to the 29th percentile, which, in retrospect should have been questioned more, but they viewed him as healthy and my chances looked bright. I only knew he dropped as I started going into preterm labor and had 2 ultrasounds that week alone to monitor him. At 36 weeks with a 5+ hour trip to labor and delivery, they were convinced he was coming that night. After walking the hospital for 2 hours, things weren’t progressing enough so they sent me home, even though my contractions had been consistent for 2 weeks and powerful enough to be considered ‘active labor’ that night… until they stopped. All of a sudden, out of nowhere. <- again, in retrospect one would think there’d be a little more concern but my fluids were intact and all seemed [fine]. Cool? As I mentioned in [15. Twenty-Two] Kellan was almost born on his father -and- my father’s birthday. He was also close to being born on my mother-in-law’s. <- Thankfully he wasn’t, no offense, but if he’s not sharing the day with my husband and my father, Kb deserves his own day just for him! Which he got, when my water broke the very next morning.

When we first got to the hospital everything was progressing as it should. I got hooked up to monitors and was super stoked that the outcome of having a VBAC looked promising! Then… literally out of nowhere like the flip of a switch, nurses came barreling in. I was flipped onto all fours, given oxygen, and my doctor did a quick exam (I think?) as they were wheeling me to the operating room, before Igor or myself could even ask what was happening. Within a matter of seconds I was on the OR table and hooked up to monitors again. I just remember not getting to kiss Igor goodbye as we both had tears in our eyes, without a clue as to why the situation was so emergent. During transport my doctor mentioned that they had [-lost-] fetal heart tones for the last 10 minutes!! <- Are you fucking kidding me?! TEN MINUTES?! Isn’t the >whole< point of being hooked up to monitors in the first place, to assure things like that doesn’t happen? Who the hell wasn’t doing their job monitoring me from the nurses’ stand? 10 minutes? GTFO!

Once lying flat on the OR table and hooked up again, they allowed Igor to enter the room. Adam, one of the senior residents (I don’t know what his official year/title was at the time) sat with me and finally explained what was going on. They didn’t know for sure what happened, but at that time I was stable and baby boy was stable. They weren’t sure if he had moved and went into distress or if I unknowingly moved the monitor not realizing. Whatever the case, it shouldn’t have taken 10 minutes to notice!!! Arg. Anyway, after about 45 minutes of monitoring us he felt comfortable enough to let -me- make the decision on whether or not I wanted to have an elective c-section or return to my room and continue with my original birth plan.

See, what makes or breaks a good doctor is truly their bedside manor. You can be brilliant but if you’re a jerk, your ego will get in the way eventually and it wouldn’t be surprising if you face a lawsuit or two+. Adam listened to me. I explained my previous birth trauma and how important certain things were to me. Like delayed cord cutting, Igor actually being able to cut the cord, skin to skin immediately after birth and most importantly – to be awake and hear his first cry!! He knew how badly I wanted to try laboring naturally and allowed me the [choice] without any pressure (How it should be!). He asked if I wanted to speak with an anesthesiologist first to hear my options shall the need for an emergency cesarean arise. He stood next to me holding my hand while I cried unsure of what to do. Ultimately being awake was [the] most -important- thing so we all agreed that while I wasn’t getting an epidural, pre-placing a catheter in the event I needed to be rushed down again, would give me the best odds at not being put under, as they could pump what was needed during transport. 

They had Igor step out as they placed and tested the catheter for proper placement. They told him it would only be a few minutes so he could go back to my room and wait for me to come back. Only… things didn’t go as planned… AT ALL! Again, within a matter of seconds I was back on my back as they prepared to get Kb out of me as quickly as possible. When they tested the placement his heart rate went from 187 to 58 almost instantly. Adam had previously addressed how important it was for me to be awake with all of those involved, so the nurse anesthetist told me that they’re doing everything they can, but to understand that in order to stay awake they needed to overdose me to work as quickly as possible. Pretty sure all I did was blink and I went from having fluid dripping into my spine to, “Jena can you feel that?” “Prepare for the baby to be out in 90 seconds.” I remember yelling, “Wait, what?! Where’s my husband? My husband has to be here; he can’t miss this! Where is my husband?” as tears streamed down my face. Everything happened so fast that Igor entered the operating room {JUST} as they were pulling Kellan out of me. Igor thought fast on his feet and grabbed his camera when whoever went to get him and started taking pictures as the OR doors opened. The first thing he saw was baby boy literally halfway out of me! ::phew:: He just kept snapping, I don’t even know if he was looking through the viewfinder or just holding it while he pressed the button but he at least got to see it… kind of.

Unfortunately delayed cord cutting wasn’t an option, however Adam made sure to leave it long enough to get [some] benefit as well as allowing Igor to “cut the cord”. My sweet baby came out blue; I of course didn’t know this at the time but it sure seemed like it took forever to hear his first little high pitched cry! He was whisked away to be checked over and then brought over to me and placed on my chest right there in the OR for immediate skin to skin! I am not sure how normal that is, as I’ve only ever seen photos of proud dads holding a wrapped baby next to Mama’s head. The problem is, I was legitimately numb to my neck and he kept rooting upwards towards my shoulders. They weren’t kidding when they said they needed to overdose me. The nurse had to keep adjusting him until he finally found what he wanted and started nursing.::awwmybebe:: And nursing did he ever! Pretty sure I made cream as he was already above birth weight at his first doctor’s appointment. They typically say by 2 weeks babies should have reached their birth weight as they lose weight while in the hospital. He weighed 5lbs 15oz at birth, left the hospital at 5lbs 7oz and was 6lbs 2oz by 5 days old!! ::whaaat?!::

Remember when I said he had dropped from the 67th percentile at 28 weeks to the 29th at 34 weeks? At 38w5d he was born barely making the 2nd percentile. Later that night after walking the halls, I returned to my room to find the MFM attending doctor waiting for me. He explained that had I attempted natural laboring, both myself and Kellan may not have made it. If you recall in [06. HS/Diagnosis] I explained how EDS affects the organs, as it’s a connective tissue defect. As it turns out, all of the complications and near miscarriages were a result of a faulty placenta. I was never actually told what exactly was faulty about it but that he was malnourished towards the end of my pregnancy. He was healthy, but it makes sense why he ate around the clock for a while. My uterus was so thin along my previous cesarean scar that it basically ruptured on its own as surgery was being performed. <- Whoa! That explains why the OR looked like a crime scene in the pictures… ::ShiftsEyesSidetoSide:: I was in a controlled environment and they were prepared, whereas if I tried laboring, there is no question that I would have hemorrhaged and it would have been that much more serious. Obviously doctors cannot [tell] you what you can and cannot do, but he made it -very- clear that getting pregnant again would put my life even more at risk. He told me that if I was his daughter he’d tell me, “it’s not worth it and to not get pregnant again!” Roger that!

Adam, or rather now, Dr. Baruch, clinical assistant professor, will >always< hold a special place in my heart!! I know I didn’t go into detail over just how much he was there for me but I will never forget him! He even came to check on me after his shift had ended and he heard what the attending had to say. I am not the person to walk up to someone off the street and say something, however, about 18 months later I apparently became that person. Ha. Igor and I were in downtown Ann Arbor and saw Adam in a store. I was so SO nervous and hesitant but I -knew- that I [had] to say something; I not only literally survived because of him, but I also survived a very traumatic experience without the mental trauma effects. I have tears in my eyes just thinking about his sincerity and how lucky future mamas will be, to be under his care! Also, you know you’re getting older when the doctor who performs surgery is younger than you. Oy.

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16. Year One

“The eyes of love have 20/20 vision when focused on another, and become entirely blind when focused on ourselves.”
– Author: Craig D. Lounsbrough

“And from that day on, they lived happily ever after. <3
– The end.” [14. Forever & Always] Taylor Swift wasn’t wrong when she sang, “this ain’t a fairytale” because life simply isn’t as easy as that!

Coming from the Jewish-Russian background there is some truth behind the stereotype of a “Jewish mother’s guilt.” And does Igor know it all too well. Thankfully mine isn’t too bad but there were definitely times that she laid the guilt down heavily. I try my best not to make my kids feel that way because they are their own people, I respect their boundaries as human beings and do not believe in dictatorship. Now, that doesn’t mean I am a “free range” parent because I definitely am not, there are rules to be followed, but I respect my children’s feelings and honor their autonomy for who they are. Here’s a quick example: my children are both biologically male and identify as so. My oldest decided when he was 5 that he wanted to grow his hair out, but felt pressured by society to cut it as “boy’s don’t have long hair” according to my in-laws [especially..] So he cut it, and instantly regretted it because he no longer felt like himself. After a few more hair cuts he realized that he didn’t care what people thought, he wanted his hair long (at first it was because Mom had long hair- you know that whole “young-child Freudian theory”, but as it grew he felt more and more himself.) He was and still is often referred to as a girl by strangers because he really is pretty and his long hair is gorgeous! At first it really bothered him, he didn’t understand why others just -assumed- he was a girl; it became the perfect time to open discussions about gender, society, and “old world” thinking. How some people won’t understand, respect or agree with his decision and he may get made fun of for it.  After a while, he just stopped caring! We have always tried to instill that in life, you need to do what makes >you< happy, even though others may not agree or like it. It’s NOT easy to do, especially when people you care about don’t agree, and that kids at school (& people in general) can be mean. If you make a decision that causes you to stand out, you need to accept there may be backlash and that you need to be strong enough to not let it change who you are. If it makes you uncomfortable we’ll work through it and come up with a solution, but that being who you are is important, is validated, is okay! As long as you are happy and not causing any harm – {nothing} could or would ever make us feel differently towards him!!!

This whole situation has made him so strong in not caring that he stands out. At school he is one of the only ones in his class still wearing a mask and using a plastic divider at his desk. His response to being different? “I’m the boy with long hair, I’m used to being the only one that is different.” <- Oh my heart sweet child! I could not have been more proud in that moment as a mother! See, the thing is, he has always been different and stood out because of his giftedness, and the fact he -knew- his brain worked differently broke my heart because he saw it as a flaw. Thankfully now he embraces it and isn’t afraid to humbly-brag. Oxymoron? Eh, whatevs. He is who he is and while it isn’t easy at times, I couldn’t be prouder for who he is becoming!

Before I came into Igor’s life he didn’t know how to stand up for himself against his parents. He never wanted to disrespect them, but he realized that being able to voice your own feelings and opinions, especially as an adult, is not only okay, it’s crucial to your own life’s happiness! His family doesn’t see it that way. He is their child so he should do as they say. Much like how they feel we are Leighton’s parents so we are the ones who decide how his hair will be. He is young and shouldn’t be able to make choices like that for himself… F THAT! I would -never- expect Igor to disrespect his parents, but simply speaking up to them, against what they say, even when done nicely, is disrespect in their eyes. I mean, they moved to America to give their children a better life, it shouldn’t be a surprise when they grow up “American” with American Xennial views. Oh man, I have so much to say but I’ll leave that for another post(s)… or try to at least, haha.

As I said in [14. Forever & Always] I was honest about my health from day one, even though he may not have understood the extent of it. I do not have Fibromyalgia, but it is a term he was kind of familiar with so I used it as a way of explaining my pain from EDS [06. HS/Diagnosis]. His older brother (and roommate at the time) overheard and went straight to his parents. He may have been older but maturity wasn’t there yet; he still told his parents everything. Looks as though Igor wasn’t the only one to feel he wasn’t allowed to have his own life. It actually took until meeting his own wife to also grow a “backbone”, per say. That led to a shitstorm thrown into Igor’s lap about how I was basically “defective”. That he shouldn’t want to be with someone [sick] because it’ll ruin his whole life, who knew what would be passed down to >his< children, etc. To them it’s all about how {they’re} perceived by -others-! My mom made a comment once about how if we wanted a third child we could always adopt; I wish I had my MIL’s reaction on film – you’d have thought my mother spoke of witchcraft back in the 1690s. The disgust, the horror, the shame, the shock. The spoken, “Oh, no. No, no, no.” as if just saying the word “adoption” was taboo enough. ::rollseyes::

Anyway, with Igor having never been in a real relationship prior me, everything his parents said got to him. He was confused and wondered, what if they were right? He didn’t know any better because again, at this point in time he was still very much under their thumb. Which – led to us breaking up… after 2 months of being together 2-3x a week and talking daily for 3 months. I was so thrown off I didn’t even know what to think. It literally came out of nowhere!

But as time went on I realized it was more like when Kev and I used to “break up” [09. First Love]. We still hung out fairly regularly and talked daily. We were each other’s “besties” and neither of us were pursuing anyone else. Annnnd ultimately still hooking up (though not at first). I think the second time we hung out post “break up”, we had gone to the zoo (the first being like a half hour visit because I needed to get him his 25th birthday present I had already bought). The zoo was part of his Jdate profile questionnaire [14. Forever & Always] regarding an ideal first date, a date that never happened while we were [together.] This was probably 3 weeks after the “break up” and it was genuinely a great day! At the end of the evening, my heart burst with jOy when Igor –asked– if he could >:kiss:< me! How stinkin’ adorable is that? I mean 10/10 in terms of respect but also, awe!!<3 I wanted nothing to do with this break up and he knew where I stood. So, in my heart, I felt that maybe this was him reconsidering his choice… but no. He just missed me and was even more confused than ever because, how could something that’s not [supposed] to be, feel so {wrong} not being so? He had never been happier in life before I came into the picture; I was the first person to open his eyes to a whole different world and the thought of me not being a part of his life just didn’t make sense!

However, towards the end of summer I noticed some new female friends commenting on his Myspace that were questionable for someone claiming they weren’t [looking to date anyone]. I sort of felt defeated, not going to lie. I [knew] we weren’t together but it was -just- like it was when Kevin and I were “off” but {not off}. Was I destined to a life of on-again/off-again relationships? Was I subconsciously allowing myself to be used (per say) thinking it was keeping them close? Why did I keep putting myself in these situations?!? Oh yea ..>< Love ><.. Only, it was different with Igor! If you were to ask me who I loved more, it would honestly be a complicated answer. My love for the both of them was/is so different that they’re simply not comparable!! With Kev it was the butterflies, childhood memories, teenage hormones and the {“firsts”}, but with Igor it was as if my whole being felt such a deep rooted connection, a calmness and -completion-. My heart and soul just felt complete with him near.

At the end of August I headed out to Seattle for nearly 2 weeks to see my long lost bestie, Tiffany. [11. Childhood Friendships+] I fell \ IN LOVE / with the city and truly considered moving there! A fresh start. I purposefully made it a point to talk to Igor as little as possible: out of sight – out of mind. Simply enjoy my time with someone I hadn’t seen in 5 years. If we talked it was because he texted me. I did send him a postcard because, well, I may have been hurting because of him but he was still my best friend and the one picking me up at the airport when I returned. However, while in Seattle someone else started texting me again and wanted to get together when I returned. I’ll give ya one guess since it’s not like my love life wasn’t already complicated enough or anything. ::faceMeetpalm:: 

After getting my bags I was met with the biggest bear hug, kiss and a gift. I guess a coworker was making candles and he asked if he could get one for me. Dang this rollercoaster of a thing called, <life> sure has its twists and turns. That candle by the way was never used and currently sits on display in our main bathroom. What can I say, I’m a simple sentimental kind of gal. And by simple there really isn’t anything simple about me in retrospect, but at the same time… yeah, yeah I am! ::shrugs::

Over the next couple months things were status quo between us, though we both were keeping some things to ourselves, which neither of us found out until a while later. I don’t remember where in the exact timeline he started, but he started playing soccer Friday evenings with a co-worker in Ann Arbor. With Ann Arbor being closer to me than him, he often just stayed the night at my place afterwards. I went to some games and his co-worker’s girlfriend just couldn’t understand why we weren’t together. Honey, same? He went on a business trip to Chicago and when he returned he came right to my house with yet another gift. Huh, if you’ve read my [Husband Appreciation] post you’d know he’s not a gift giver, and yet, now I’ve received 2 in maybe 2 months? This is what we call -deception- my friends. Haha. Joking, kind of. But really, I find humor in this now reliving it because that wasn’t the last gift I’d receive while still “broken up” – in fact there were 2 more in December alone! ::HandsToCheeksShockedFace::

I come from a very musical family and love musicals. My grandfather used to take me up to Stratford, Canada to see them growing up. Stratford is known for their Festival of modern and Shakespearean plays in multiple theaters. It was also tradition that he sang, “Sunrise, Sunset” from Fiddler on the Roof at family weddings; I am so, SO grateful that he was able to at mine!! What an honor to bear witness, what became his last [true] performance! All of that said, one of my favorite live shows is }Wicked{ and I had seen it once before. Mom had gotten me tickets for graduation; so Jessie and I went since it was Jessie who introduced me to Wicked to begin with. [11. Childhood Friendships+] Wicked was coming to town and Igor got us tickets! What?! He even made plans with his best friend to get tickets for him and his girlfriend, too. It was the first time I had met either of them. Yup, 9 months and I hadn’t even met his best friend. Also, not awkward at all to have his girlfriend, whom Igor had only met briefly once before because the relationship was still new, pick me up so I could wait with her until the guys came after work. Nope, not awkward at all… <- Honestly? I don’t know how I did it! But she was so friendly and outgoing, she talked as if we’d been friends forever. That’s just the kind of person she is, though, we really did end up becoming friends and they even ended up getting married one month before Igor and I.

For those who are unfamiliar with the show, one of the most popular (punny because there is a song Popular) known songs is, >For Good<. If you haven’t heard it you must, here; you’re welcome! Here are just a few of the lyrics but the main point of the song:
“Who can say if I’ve been changed for the better?
I do believe I have been changed for the better
And because I knew you
Because I knew you
I have been changed
For good”

So good, right? I get chills just thinking of Idina Menzel and Kristin Chenoweth singing it! With Marion being my [10. Twin Flame] this song always resonated with the two of us, still does. I think of both her and Igor anytime I hear it, must be because they’re my two counterparts! Anyway, during the show, during that song, Igor grabbed my hand, held it tightly and tried his best not to let the tears in his eyes fall down his cheeks. I was unaware at the time, but apparently he bought a necklace from the souvenir stand, and said necklace was given to me for Christmas! There went my heart flip-flopping again! Guys… see what I mean when I jokingly call his actions deception? Like, how does one NOT take that as a good sign?!?! We spent New Years together and it was honestly one of the best evenings together since the “break up” that it/I legitimately felt like we were getting back together… [officially].

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Awakening

“The vast majority of adults have never met themselves.”
― Mokokoma Mokhonoana

This next paragraph is what I was initially referencing in my [husband appreciation] post. Where the “—– I have no idea where this is going to fit, however I need to write so I’m writing.” quote came from:

*Back in April 2006 I wrote: “Lately there are times I find myself escaping reality, with hopes to avoid the hardships life brings; and I end up looking away from my goals because I forget to believe.” <– Holy Hell! It’s been 16 years and I’m pretty sure this has been on repeat ever since I first wrote it. It’s actually fucking sad that It’s still relateable… I have worked so damn hard on myself a few times over these past 16 years only to be smacked in the face by my own ghost. What even were/are my goals? I know that I am not living the life I wanted, I’m barely living at all. The thing about always being in fight or flight is the reality of only knowing survival mode. I wonder if I’ll add this <-^-> to my blog/book/whatever TF it ends up as. <- [Evidently I chose: Blog…] Every time I end up in a good place I’m shortly knocked back down. Like, how terrible must I have been in a previous life? This isn’t about learning at this point. I’ve learned gratitude and strength and all that bullshit. There is literally no point as to why I have to deal with this time and time again! Effin’ A!*

^ That said, I have recently entered a new phase, er, [season] if you will, that has left me lost and unsure of what comes next. After I was diagnosed with PMDD things were under control for about a year, until they weren’t. Out of nowhere I spiraled and things went dark, very dark. And scary. FAST! I am so grateful for knowing myself and after years of therapy, that I was able to recognize that I needed intervention and I sought it right away. It took time and the right medication dosage/ combination but I found peace within my mind. I love self-help workbooks, answering questions about myself or how I’m feeling. I guess (and I’m realizing this right now as I type this) that I enjoy writing. Like truly enjoy sharing my truth whether just for myself or whatever, putting pen to paper has always been my go to without realizing it. I like details and therefore like providing details. Interesting… Maybe this is my calling and what I’m meant to do after all. Good thing I started it, huh?

Anyway, ::tangent over:: part of my reaching out for help included asking my therapist if she knew of any workbooks that would allow me to work on myself. More importantly, allow me to find myself, as I had been lost in the sea of -everything else but Jena- for far too long. I didn’t know who I was outside of being a wife, Mom, sick. I knew that inorder to find joy and work through this severe episode of PMDD, I needed to find the missing piece to fill the void in my heart. The void I didn’t really know existed until I realized how empty I was. Michaelene recommended The Mindful Self-Compassion Workbook: A Proven Way to Accept Yourself, Build Inner Strength, and Thrive by Christopher Germer and Kristin Neff. OHEMGEE I believe everyone and their mother needs to get this workbook! Of course by ‘mother’ I just mean everyone, because just do it. You’ll thank me later, I know from experience…

But seriously, after only a few chapters into this thing, I felt like an entirely new person. But I wasn’t someone I didn’t recognize or someone else entirely.

No – I was me.

I found a part of me that had been suppressed for most of my life, especially my adult life. It’s honestly mind blowing when you have these crazy revelations let me tell ya. The whole “light bulb” going off feelings is legit. Everything is illuminated in a way you didn’t even know was possible. However, while things were starting to unfold I was still not getting to the true bottom of WHO I really [AM], not just who I had buried… So, since workbooks are my jam, I started to research what other books were out there and came across Becoming Who You Are  – A Workbook For Self Discovery + Transformation by Danna Yahav. All I can say is, WOW! SO many rabbit holes to go down, so much unpacking needing to be done. I thought my mind was a crazy ADD spiral of endless loops and turns to begin with, but dannnng. A LOT of mind bending, explosive, endless, rabbit holes. I have also fortunately connected with the author via social media and she affirmed my >bravery<, which I didn’t realize I needed to hear until she said it. <3

With all of the above said, while I love and HIGHLY recommend the mindful self-compassion workbook, if you find yourself on your own {spiritual} quest for discovering yourself, Danna’s workbook is exactly what you need. Just be forewarned and prepared, ha. However, thanks to this specific workbook I am discovering so much about how the lunar cycles in whichever sign it’s passing though actually resonates with me; and thanks to the daily logging I am finding that I am holding myself accountable a lot more and gaining even more confidence to say “EF it, I’m doing it!” In fact, It was through working with this workbook that pushed me to finally start publishing my blog posts publicly!

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11. Childhood Friendships +

‘Childhood friendship is the most beautiful memory that can never be replaced.’ – Unknown

Lauren; my sissy-poo, has already been discussed a bit back in post [02. Dad] – but after 6th grade she moved about 35/40 minutes away for her mom’s new job. You always grow apart when people move, however we’re ~family~. We may not have seen each other often but we remained very close. Anytime we did get together it was like no time had ever passed, we never skipped a beat. Update: she’s still very much a part of my life (30 years this year!) and prior to Covid we tried to get together monthly with our moms. She made me an Auntie and it’s the best feeling knowing that our kids are going to grow up together. Even if mine are older, lol.

I’ve mentioned my tiny but mighty, strong willed friend Jessie [06. High school] but I haven’t really discussed her. Jessie has a twin sister, Jenna, so it’s ironic that while I was friends with both of them, Jessie and I were closer. They were a year younger and lived across the street from Lauren. Small world moment, when their mom stopped working to have them, my dad was hired to replace her at his current job. We didn’t find that out until many years later. Also an ironic fun fact, my mom had a nanny, who then went on to work for my dad’s boss (before he was my dad’s boss) and then quit working for his boss to work for my parents (again, before he was my dad’s boss). Seriously crazy 6 degrees of Kevin Bacon we’ve got going on over here! Their mom was (is?) an alcoholic and they were very much victims to life with an addict parent. There were a few times throughout our friendship that their mom didn’t want them hanging out with me for no other reason other than her need to control. Which sucked because Jess and I were best friends. We were basically inseparable in middle school. By the time Jessie was in 11th grade, life at home was so bad that she actually moved in with my mom and I. That’s why she was with us that day seeing the principal. She was also with us because around that time, Jessie – your typical straight A/B+ student, decided she was done with high school bullshit and dropped out. Figured I was going for my GED. Why shouldn’t she? … Like I said, a victim of life with an addict parent. Update: I’ll always love her and wish her well, but unfortunately the friendship was just too toxic to maintain. She met my husband once after we were engaged, though I haven’t seen her since.

Closest friends by grade in high school:

9th grade: Annie, Teisha (the new girl in 8th grade [from 10. Twin Flame] and Tiffany. Teisha and Tiff both moved to other states for 10th grade and yet I have maintained friendships with them both. I was actually part of Teisha’s wedding and flew out to Seattle to witness Tiff’s. To this day Teisha and I joke about how we actually met because how can we not?

10th grade: Jennifer and Eric. These two went on to get married just after high school but unfortunately Eric was in a terrible hit and run accident that left him with severe brain damage. Their marriage may have ended but they are still very close and I commend Jenn’s current husband for not feeling threatened by their maintained friendship!

11th grade: Jami and Shannon. Shannon’s mother was my chorus teacher’s assistant teacher, whom I was very close to as well, and cousins with a coworker of mine at Claire’s. It was actually Shannon’s birthday the day I returned from the Mayo Clinic for the first time [06. High School/Diagnosis] and the day I had my first car accident. Oh, welcome home Jena and happy birthday to you Shannon. What a way to spend your 17th birthday. Ugh, sorry Shan!

Jami… my Jaymlinn. Jami had a difficult past to say the least and wasn’t the most well behaved teenager because of it. She was a sponsored skateboarder but her poor choices took that away from her. She was sent to live with her uncle and his husband in hopes of turning things around. That’s where I enter the picture. Jami and I met in Health Occupations class the first day of junior year. There was just this cosmic magnetic pull between us. I really cannot explain it, but she was meant to be in my life and I, her’s. She never took things too seriously and just wanted to have fun. She was an incredibly smart, kind, considerate girl. A short story writer, singer/songwriter and artist – but unless you really knew her, she just appeared as an aloof, slow, stoned – but not – stoned teenager. But I can assure you she was so much more. When we first became friends her uncles couldn’t get over the change in her. I apparently was such a good influence that they wanted me around all of the time, ha, ha. It must be the empathic healer in me. I didn’t know it because she stopped drinking when we were hanging out, but she was an alcoholic. And knowing her past I don’t blame her for trying to shut out the noise, I just wish she had the chance to in a healthier way!!

Somewhere along the way Jami fell in love with me. I had no idea and I can only imagine what it did to her when Kevin and I were good. One night at a party we were playing truth or dare. Her friend must have known or suspected her feelings towards me because he dared me to kiss her. No problem, kissing whore, remember? Jami certainly wasn’t the first girl I had kissed but I was apparently her’s. She struggled with her sexuality and that kiss just made things more confusing. For us both. In middle school there was one girl at the skatin’ rink from a different school whom I always joked around with and we called each other each other’s girlfriend. The boys went crazy over it, especially when we kissed [we never made out or anything, just a simple peck].<- Man, I really was bad… We never hung out or saw one another other than at the rink but everyone [knew] we were “girlfriends.” The joke kind of faded as highschool went on and the only time we ever talk now is via Facebook when we wish each other a ‘happy birthday’, seeing as we share the SAME birthday… and similar name, lol.

I had known I was interested in some way to both boys and girls for years, but I never really entertained the idea of actually dating a girl. In fact, it took me until my 30’s to be able to fully understand and define myself. I always said I was attracted to the person for who they are, which is true. I need to have a true emotional connection with someone to allow myself to be vulnerable or intimate with them. I’m simply unable to just look at someone off the street and desire them, but I never really thought anything of it. Then one day I read the words “Biromantic Demisexual”. Upon researching meanings I discovered exactly where I stand. I have always described myself as exactly how those two words together, is defined. Hi, I’m Jena and I am a biromantic demi woman.

I was very confused when I started to develop feelings for Jami, because, well.. Kevin. Even though Kev and I may have been “broken up” we were never [really] broken up. We still talked daily, hung out, hooked up and still shared “I love yous”. We didn’t have the label but we also didn’t try pursuing anything with anyone else. At this particular point in time I was technically single but I still felt as though I was cheating. However, I couldn’t stop myself from being close to her, kissing her. I felt as though I was this whole different person experiencing my first love. I was so confused I started to pull away and she started to slip. She started drinking again, hanging out with the wrong group of people and dropped out of school. Yup, I’m the asshole.

I certainly did love Jami; it was a type of love I’ve only ever experienced once and I know I won’t ever again. Update: we’ve been in touch here and there throughout the years but really only via Facebook or text messaging. As it turns out, she was actually diagnosed with Autism as an adult and looking back it makes a lot of sense. We did get together once to catch up for the first time in easily a decade, shortly after my youngest was born. It was nice to see her but she admitted her feelings came right back the instant she saw me annnnnd I exited stage right. I felt bad, I still do, but that’s not something I can take on. She’s a part of my past that I’ll smile upon when I think about, but in my current life we’ll only ever be a memory. I do check in from time to time because I genuinely do care for her wellbeing. [empathic healer, remember?] I wish her nothing but happiness and success, which seems to be working in her favor as she’s been 100% sober for some time now and is getting married later this year!

12th grade: Sheri. Sheri used to live 3 houses down and across the street until she moved to Florida in high school. I was so sick by this point that all of my ‘friends’ had [forgotten] me. Out of sight out of mind, ya know? Sheri and I had always been friends but it was when I was sick that we were our closest. My best and essentially only friend lived thousands of miles away, how sad is that? I owe so much to her; I don’t think she truly understands how special and important she was to me and how much I’ll always be grateful for her! I admit and apologize that I unknowingly took advantage of her friendship. She went above and beyond for me while I visited Florida twice for spring break, celebrating my 18th and 19th birthdays. But when it came to her visiting Michigan and trying to move back here, I wasn’t around. I promise it wasn’t intentional and looking back I feel terrible knowing that I more than likely let her down. I am not going to sit here and try to make excuses for why I was [selfish] because there’s no excuse for letting your best friend down. Period. I own it and will never stop apologizing. Update: She did move back to Michigan but we weren’t in contact much. She has since moved back to Florida with her husband and we’re friends on Facebook. She is working towards her Masters in Social Work and with her love and compassion, her clients will be beyond lucky being under her care! She was the best thing I could have asked for, better than I may have deserved; I will forever be eternally grateful for her love and support during the worst time of my life. I honestly may not have made it through without her!

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06. High School/Diagnosis

“I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.” — Unknown

Bring on high school! Starting my freshman year we had three, yes 3, high schools on one campus (4 buildings in all) and we had classes in all three schools. You were assigned a “home” school in which your locker would be, where you’d play sports for and graduate from. If you were fortunate enough to have time to use your locker, seeing your counselor could have been the only time you’d even enter your “home” school. I went to Salem but one semester I didn’t have a single class there! It’s nuts. They call it an Educational Park, but in reality it’s a small college campus for teenagers. In retrospect it’s smart because certain elective courses are only offered in certain schools, so they don’t need multiple teachers teaching the same thing throughout the district. But having only 10 minutes to get from one corner of one school to the farthest corner of another, makes for an exhausting day going back and forth between classes! There is no [break]… it would wear anyone down, but especially someone already battling extreme fatigue.

By mid-semester I had become full blown lethargic and negative mono test after negative mono test left nearly everyone calling me lazy and depressed to the 90th degree. With the help of a note from my orthopedic surgeon I was able to get out of running in gym class, but unfortunately my absences and doctor’s notes didn’t help me for swimming and I failed half the semester. Such a confidence boost, let me tell ya!

By the end of freshman year I was starting to do better and tried out for the Cheer Team: GO ROCKS! After having to give up dance, cheerleading became my love. I was so powerful and strong that I quickly became main base. I was determined to succeed and my team nickname was: “Miss Powerhouse.” Unfortunately, being a base leaves you open to getting kicked in the head by your flyer, resulting in a sprained neck. 

That sprain changed everything!    –

The trauma my body experienced triggered a response within my autonomic nervous system that would influence the rest of my life.  Remember the pneumonia I had when I was six and all the fevers with extreme growing pains? That goes with this, as do the mysterious stretch marks and migraines… I have Ehlers Danlos Syndrome, an autosomal dominant genetic condition that affects my connective tissue supporting my skin, bones, blood vessels and many other organs. If it wasn’t for that sprained neck and what followed, who knows how old I would have been when I found out. Secondary to EDS, I have Dysautonomia – an umbrella term used to describe the dysfunction of the autonomic nervous system. The autonomic nervous system is what controls everything your body does without your thinking, ie: breathing, heart rate, blood pressure, digestion, ect. 

There is no way to say with 100% certainty, however it is believed that the pneumonia triggered me to develop a mild form of Dysautonomia, hence the inability to regulate my temperature. Then with puberty, the migraines and extreme fatigue. However, it wasn’t until after spraining my neck did things go downhill fast. I started passing out and blacking out left and right. I developed tachycardia and palpitations with plummeting blood pressure. Fatigue to the point I can only describe as sleep comas. Dangerously low blood sugar and drastic weight fluctuations; we’re talking losing 25lbs in 2 weeks and gaining 50lbs back 2 weeks later! I was getting winded just talking let alone walking. I was in literal Hell!

Doctor after doctor, test after test – I was left without answers, suffering, because you know… “depression”. Not only was my health suffering but so was my social life. I had to quit the Cheer team letting everyone down just weeks before regionals. My pediatrician; the only doctor on my side doing everything she could, very bluntly told me that I must step back if I wanted to survive to regionals. I had no answers from “specialists” and she was genuinely scared for me…

Now, I’m sure you can imagine how that betrayal to my team ended. All of my so-called [friends] were now shunning me. Instead of worrying for my well being, in true stereotypical high school cheerleading fashion, the squad was more important than anything and I was now an outsider. However, the good thing about going to school with SO many kids (6,000+), is that while there were cliques and groups of friends, there were entirely way too many for the standard “cliques” and I wasn’t left completely alone. None of my best friends were on the team and my boyfriend was a star basketball player for a rival team/school.

As time went on I only got sicker and lost my friends because they didn’t understand. They were in HS, a time for fun – not to be tied back with a sick friend. My boyfriend’s family felt my health was too serious of an issue; they didn’t want me holding him back and we eventually broke up. I missed so much school it’s a wonder my mom wasn’t served papers! By mid-junior year I was homebound and school consisted of independent work and a weekly visit from the district’s homebound teacher. But you see, the problem with homebound schooling is that I was only allowed one credit a semester instead of the traditional three. So not only did I have to deal with being sick with a mysterious illness, loss of my friends and boyfriend, having a teacher stage an in class intervention accusing me of an eating disorder (when I lost all that weight so quickly) and another teacher literally talking bad about me (belittling and making fun of the situation to the class in my absence), I had to do school from home only to not be able to graduate on time even though I had a 3.6 G.P.A. 

In May of that year I ended up going to the Mayo Clinic in Minnesota. Mayo is a nonprofit American academic medical center focused on integrated health care, education, and research. It is one of the leading diagnostic hospitals in the world and I spent over a week there on my first visit. 

Random fun facts: My great uncle, Dr. Arnold Kadish, used to work at Mayo and it’s rumored that he dated, possibly was even engaged at one point, to one of the founder’s daughters. Arnold also invented the first diabetic insulin pump in 1963!

While at Mayo they put you through the ringer with test after test, more in depth than ever before. It was there that I was finally diagnosed with the previously mentioned Ehlers Danlos Syndrome and Dysautonomia. During my first visit I didn’t qualify for an official diagnosis for P.O.T.S. – Postural Orthostatic Tachycardia Syndrome but I was treated as though I did. In order to get an [official] diagnosis my heart rate needed to jump 30 bpm upon standing and mine only went 28. Medical logistics are ridiculous sometimes but I was officially diagnosed 20 months later at my second visit. Prior to Mayo, I was diagnosed with Hashimoto’s Thyroid disease at 15, Fibromialgia (which Mayo ruled out and changed the diagnosis to EDS), Sports Asthma (which was also ruled out, turns out that because of the EDS causing blood pooling, I get pooling in my lungs which makes it difficult to breathe.), and any psychological issues in question were found to be completely normal given all of the stress I had been under!!!

FINALLY some answers and validation. Some…

I ended up [dropping out] senior year. And by dropping out I mean I was essentially kicked out. I even tried summer school to catch up but they made it impossible. So, I made the gut wrenching decision to get my GED, but in order to do so before my class had graduated I needed someone from the HS to sign off. It was impossible to get an appointment with the principal and everyone else we tired meeting with said they weren’t authorized to do so. We ended up going straight to the principal’s office where of course his secretary told us he was unavailable. Shortly after she said that he started to walk out of his office and we asked if we could speak to him. He told us he was on his way to a meeting and to schedule something with his secretary. Of course. My friend Jessie was with us and while she may be tiny, she sure is mighty! She used her sass, politely – but direct – and convinced him to give us three minutes, just enough time to sign off on my early GED slip.

Here’s the kicker, he had zero idea who I was or what I had been dealing with. All of these school administration meetings over the past four years, not once was he filled in. WTF?!! He could not believe the way his staff had treated me and handled my case. He ended up having his secretary cancel his meeting so that he could get more detailed information from us. Without any hesitation he signed my slip and even made sure that my official record didn’t say that I was a “drop out”. Instead, he wrote that I was [transfering] and that I was continuing my education at the local community college where I was getting my GED. He apologized on behalf of his staff and wanted to assure that I still had some dignity. 

Having to get my GED sucked, but I kicked that test’s ASS and all of my scores were in the 90th+ percentiles! What made the situation suck a little less is that I technically started college early. Silver lining?

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05. Middle School

“If it doesn’t challenge you, it won’t change you.” – Fred Devito


Middle school… bloody hell it sucked. Who’s idea was it to throw together a bunch of new students who never met one another, during the most awkward years of adolescence?  Don’t get me wrong, I fully agree that the age range needs to be seperated from elementary and high school – but damn. [Un]luckily for me, I got to experience the wonderful awkwardness twice as our school district did boundary changes after my first year.

[Thanks] to starting puberty so young, by 6th grade my breasts were a full 32C. At the expense of sounding narcissistic, with breasts like that and my looks… It’s no surprise I quickly found myself amongst the popular crowd. However, after the boundary change tables quickly turned. Of the five middle schools in the district, just one housed not only the neuro-typical students, but also the “talented and gifted” aka honors students, as well as all of the special needs/ nonneuro-typical (neurodivergent); mine. When the boundaries were redistricted only a quarter of the original students remained at my middle school. Being that it was home to the TAG program and the special education department, it doesn’t take a math wiz to figure out that of the 25% of students that remained – only a sliver were the original Average Joes. That being said, the new 75% of students all came from the same school and most of them had been together ever since elementary. Their pre-formed “cliques” took over. Initially I got along with everyone, of course that only lasted until I started dating a guy that one of the new popular girls had her eyes on.

I am telling you, girls are caddy. We’re downright bitches. Overnight the name calling and bullying began. Aside from kissing, I was essentially a “prude” in comparison to the other girls. I was a flirt and kissed, well, anyone, but never took it farther than that until I was nearly 16 and in a committed, head over heels, deeply in love relationship. And yet, I was somehow the whore? Though I suppose it didn’t help that it had gotten out that I was on birth-control. Nevermind the major detail that it was medically necessary. No, to 13 year olds it was all about sex. Not only were my migraines getting worse, particularly during that time of the month, my periods were so erratic and horrific. I managed the best I could and held off hormonal intervention as long as possible. Then the ovarian cysts started. It only took one rupture to change mine and my parent’s minds. And to think, I thought that was the worst pain I’d ever endure. [I shake my head at naive, young Jena.]

Good ol’ B.C. Between the pill and anti-psychotic drugs for my migraines – I gained weight. I went from a 1/3 in 6th grade to a size 9/11 by the end of 8th. The crazy thing though is I wasn’t “fat”, I didn’t look my size! I didn’t weigh what you’d expect someone wearing a 9/11 to weigh. Not that I shared my size (because let’s be real, that’s just asking for it at that age) no one believed me when I told them. Even my doctors were baffled. I literally weigh more now and am a size 4/6 (27/28) at the same height. The only thing that was noticeable was my puffy face.  Sooo… we chalked it up to water retention and underactive thyroid.

We didn’t know the cause then, but I had what my mother referred to as “sausage” skin. It’d look like red veins spidering out everywhere, like raw sausage. And prior to the weight gain I developed stretch marks. Yes, PRIOR! I was a size zero when they first started to develop. They appeared in random places, too, like my ankles. The breasts I understand, but my shins and ankles? What?! Even weider, it wasn’t during a growth spurt. They literally started appearing overnight! I kid you not – I am a roadmap of faded stretch marks from my waist to my ankles. Hips, butt, thighs, calves, behind the knees – nothing has been spared. I even have a small rainbow on my lower back (just above my butt), rings around my belly button and upper arms. Yet, ironically I didn’t get a single new stretch mark during my pregnancies. I have slowly learned to accept my lines, though what I struggle with and probably always will is the loose baggy skin they caused. If it was just a “mom pouch” I’d eventually get over it (I mean I did finally wear a 2 piece bathing suit in public 3 years after my oldest was born)… but it’s not just the pouch, that’s actually the least of my issues. It’s my legs. Barf!

As I sit here writing, I think I just realized why my legs being as grotesque as they are, weighs so heavily on my self-image. My sausage skin and bright purple stretch marks were just another excuse to bully me. The harsh truth is that stretch marks are associated with heavier people, outside of pregnancy. So even though I developed them while still [thin] – the fact that I did gain some weight gave my new frenemies their best material. I think my favorite was being “moo”ed at. Very original. I feel as though I need to include a photo of myself during this time so you can see how pathetic kids can be. If they were mooing at me, my heart breaks for anyone dealing with weight issues and bullies! I wasn’t even ‘overweight’ and the psychological trauma of being made to believe I was, affects me still today.

I still don’t understand how I can go from being so “popular” to a social pariah in such a short time! I had plenty of friends who were older and at different schools, but at my own school, by 8th grade things had gotten so bad that I got permission and switched to 7th grade lunch to be with my best friend.

Yeah, adolescents are assholes…

With everything that was going on in my social life, which at 14 is essentially everything, it’s not a shock that I’d begin dealing with some depression. Unfortunately, over the next few years that is all doctors would see. They blamed all of my symptoms on either depression, psychological, ie: all in my head, or I was making it up. Aside from my pediatrician, who I absolutely loved and appreciated beyond words, I was not taken seriously. As a patient it sucks! You don’t understand how they can’t believe you. But at the same time, when someone hands you a sheet of notebook paper filled with symptoms spanning from every one of the body’s systems… I can see where it’s hard to take it seriously. Especially when doctors are told to think of horses when they hear hooves. Having any illness blows. Having an invisible illness is worse, add to that one that is rare, plus a few that aren’t as rare but rarely heard of… atrocious!

Anyway, 8th grade was a pivotal point in my life not only socially and academically, but as well as my health. I started getting hit with bouts of extreme fatigue. Before you go there, yes, I do know that it is a tell-tale sign of depression, and no, it didn’t help my case. The thing of it is, these bouts didn’t last long and were infrequent… until I had knee surgery.

My knees had always bothered me but they started to get increasingly worse at the speed of light. In the fall of my 8th grade year I had to make the difficult decision to stop dancing, something I once loved more than anything. By spring break, I had bi-lateral arthroscopic knee surgery to remove scarred synovial tissue (plica) as it was putting pressure on my bones and flattening my meniscus’. Surgery went off without a hitch, I didn’t need physical therapy and actually grew over an inch that following summer (it was previously stated I was done growing.) I was even told there was only a ONE percent chance I’d need the surgery again and that in the surgeon’s 30+ some years he’d only done repeat surgery for this 5 times. Outlook was promising. Until of course 2 years later when I fell into that one percent and needed repeat surgery.

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04. Revelations

“Dear mom, I get it now.” – Unknown

It would be easy to hold a grudge against my mom even though I understand, because even though I understand, it doesn’t make it easier when she lets me down. No, I am not naive and think I’m never going to be let down, it’s life. It happens. But again, when others come first for whatever reason it’s just an instant reminder of the past. Just like when it comes to chronic illness. If you do get “used” to it, it doesn’t make it any easier… and in reality, you’re never truly used to it – but rather learning to cope with it easier. It is also easy to call mom [selfish] for her choices, however, unless you’ve been in her shoes and have battled chronic illness yourself – what you need to understand is that her being selfish wasn’t really selfish at all. At least not in the negative way it’s usually portrayed. Don’t get me wrong, I fully acknowledge understanding that it is easier said than done, with or without health issues. But! As someone with her own screwed up health, I am asking you… scratch that – [telling] you to at least [try] to understand it.

It took me until I got sick myself to understand. To understand what it’s like to have your life ripped out from under you; grasping at any little speck of normalcy that you can manage to grab hold of, before it slips through your fingers as you fall. Hard. Flat on your ass. It takes a long, LONG time to come to terms and accept that the life you once had will never again be what it was. Not only do you have to accept your new “normal”, but you have to discover the balance between doing what you want to do and how you’ll pay for it. Whether or not X is worth the backlash of Y. Not to mention learning to [live] and not just [survive]. Something I myself am still struggling with. When you’ve been sick for so long, it’s incredibly difficult to not live in constant fear of ‘what ifs’. It’s only natural to want to avoid anything that [could] knock you down and set you back. Therefore getting into the habit of survival mode instead of living a happy fulfilled life.

In the book 10% Happier: How I Tamed The Voice In My Head, Reduced Stress Without Losing My Edge, and Found Self-help That Really works – A True Story, Dan Harris recalls a discussion in which he was told that, “often it’s not the unknown that scares us, it’s that we think we know what’s going to happen – and that it’s going to be bad. But the truth is, we really don’t know.” It’s scary how truthful that statement is! Since the age of nine the need for everything to be perfect controlled the depths of my brain. No matter how prepared I was for a test, in my mind, I had already failed before it began.

I am a perfectionist.

 – [So much so that I have my cousin and husband editing my writing;  if there’s any mistakes that’s not on me at this point. ::wink::]

I have to plan activities and events way in advance so that I can prepare myself in order to partake in said activities/events – only to stress irrationally what I won’t be able to and that I’ll crash horribly once it’s done, just to get down on myself questioning if it was worth it because of how miserable I feel… This scenario is on loop, always three steps ahead of what’s really going on. My mind does not rest, always preparing for the worst and any scenario that could arise. I can be questioning if something was worth it before planning even begins.

As a sick wife and mother – don’t even get me started on the guilt that I am ruining their lives and they’ll someday resent me. Oh, the guilt! That sneaky bastard is probably the worst part of living with chronic illness. It makes you believe you’re always letting someone down, no matter what. The guilt of wanting to be “selfish” and do something for yourself vs. the guilt of how you’ll be perceived and who you’ll hurt along the way. It’s no wonder I have been in therapy on and off for decades. Between the guilt that comes from being sick and this notion that I am never good enough – always needing to do better; that is a balancing battle I am not sure I will ever master.

I read a quote once that I actually wrote out and framed. I have no idea who originally said it so I apologize for not giving credit where it is due; however, the quote is as follows: “The happiness of your life depends on the quality of your thoughts”. Truth. Happiness is a choice and who wouldn’t choose to be happy? As much as I may think I understand, I can not pretend to fully comprehend what all my mother was going through. What I do know is that hanging out with Maria made her happy. On the weekend, for her sanity, she was childless and able to fake some level of normalcy. During the summer she was able to visit my biological great-grandmother who had been a family secret and institutionalized in PA since my grandmother was 2. 

Freda had been forgotten about for over 50 years, so when my mother found out about her she made it her mission to visit every few months. Of course as a kid I didn’t understand the importance behind it, just saw Mom on vacation with Maria. Turns out Mom wasn’t really being selfish at all, she was using her heart and giving a long lonely life a happy ending. Whether Mom went about things the right way or not – I don’t know, I couldn’t tell you. When life hands you lemons you make lemonade, right? There’s no right or wrong way to make it, you just learn as you go what works best for you. Just like with anything in life. You learn from your mistakes. No one can predict how their life is going to go, nor can they predict how they’ll respond to whatever happens. All you can do is move forward with gained wisdom.

As unfortunate as it was, Mom getting sick turned out to be an unexpected gift. A blessing in disguise if you will. When I was six years old I caught pneumonia and for the next 11 years I suffered from unexplained symptoms. In elementary school I was sent home almost weekly due to low grade fevers. I’d spike a fever and it’d go away on its own. I felt fine but the school said I had to go. I simply wasn’t regulating my temperature properly and no one knew why. I had extreme “growing pains” throughout every fiber of my body. Mom was diagnosed with Fibromyalgia and feared my fate was sealed… I don’t have Fibromyalgia. By nine I had started my period and suffered debilitating migraines. Yes, nine. 

Surprise!  – Happy Birthday, Jena! – 

…. Worst. Present. Ever! 

WTF?! Way to ruin innocents, universe!

Nine was a rough year for me. Mixed in with all of the hormonal changes my body was experiencing and the start of my migraines, I was filled with terror bestowed upon me by my thoughtful – loving – brother. An oxymoron, right? My brother, thoughtful and loving? Good one. Jack was nine when he left home for a bit and wouldn’t let me forget it, using it to his advantage. Children are easily influenced by other children, especially when the other kids are older. They have an easier time relating to someone closer to them in age, therefore trusting what they have to say over most adults. So when Jack told me that I, too, would be sent away unless I was the perfect child, got straight A’s, and did exactly what was expected of me, it was easy to believe. He said that they wouldn’t love me if I ever disappointed them. Yikes!

First of all, how heartbreaking is it, that’s how he felt – what he believed to be true?! SO sad! It took me until I was nearly 27 to realize the impact of his words. Up until then I had always figured his words were just words and the issues they originally caused were sorted out when I was 10. Was I ever wrong! I struggled horribly in school. Between ADHD and a form of dyslexia mixed with a processing disorder, I didn’t come close to what I [believed] was expected of me. If Jack was so smart, so advanced – how the hell could I not be “sent away” when he was? How could my parents be proud of me when I wasn’t amounting to even a fraction of Jack? If they weren’t proud of me they wouldn’t love me and then what was the point anymore? 

Eventually the pressure got to be too much. At my tenth birthday party I took a chinese jump-rope, wrapped it around my neck and feet and pushed it out so it tightened around my neck. Luckily some friends walked in on the scene and stopped me. Between begging and pleading I convinced them not to go tell my mother. I know they were petrified so I give them immense kudos for going to the school counselor the following Monday morning. I find it incredible that a group of 9 and 10 year old girls not only grasped the severity of the situation, but also had it in them to do something about it! By the afternoon there was a full blown intervention held in my honor.

Looking back, I honestly don’t know if I was truly depressed and trying to end my life, or if I was joking around. I know I claimed I was joking around but logically looking at all of the facts, it had to have been more of a cry for help. I needed attention. Although, when I was 31 I was diagnosed with PMDD and I do wonder if that played a role because I know for certain that I had my period on my 10th birthday… hmm… Anyway, I was put in therapy and hated it! Over decades of seeing different therapists I know it takes the right fit for anything to be helpful. Maybe if I could have seen the “right” person at that time, I wouldn’t have suffered the next 16+ years with suppressed issues buried so deep! I had no idea they were even there.

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03. Mom

One of the most important relationship we’ll have, is the relationship we have with our mothers. -Iyanla Vanzant

I have and always will be Daddy’s Princess, nothing is comparable to our bond. Sure, being gay probably helps but he is an incredible father none the less. I know when I got married it was probably the hardest thing for him to give me away. [Dad, you showed me how it was supposed to be, how I deserved to be treated! The fact you had flowers delivered to the dress shop before they were even open, the day I went to buy my wedding dress, ::cough:: being gay definitely helps ::cough:: I can without any hesitation say that you set the bar high for any man I’d end up with. And I know [you] know, that I have found the one. The one who treats your Princess like his Queen.

Now, just because I am Daddy’s Princess – doesn’t mean I am not a Mama’s girl, because I very much am! Most mothers and daughters are close when daughters are young, grow apart to almost “enemy” status when the teen years roll around and rekindle their friendship once they’re both adults – especially both mothers. Hi. I am an adult, a mother and yes, my mother IS my best friend. How cliche… But here’s the deal: the above scenario is not exactly how things went down. In fact, it was actually my teenage years that brought us closer.

As previously mentioned, never once did I question my parent’s love and support. I knew my mother loved me, I knew she supported me. But feeling it… knowing and feeling are two different things. I may have known the above but I didn’t always feel it. As I’ve gotten older I can understand why Mom made some of the decisions she did and I honestly can’t say one way or another if I agree or disagree. Adolescent Jena on the other hand: disagrees. Mom was under a lot of stress, so much so that she got very sick. Granted – we know now that she probably would have gotten sick regardless, just most likely not as severely, had there not been so much stress.  I mean, who wouldn’t be stressed looking at the facts? A toxic relationship with her own mother, the loss of a child (they had Ryan between Jack and I, he passed shortly after birth), an alcoholic husband that lead to a divorce, adjusting to life as a working single mother, her now ex-husband coming out as gay, selling a house and moving, and a son who was battling his own feelings. Talk about a mind fuck in just a few short years!

During the divorce Mom joined Al Anon – escentially A.A. for the family and friends affected by an alcoholic.  Did it help Mom? Absolutely. Though in the end I’m not sure if it did more damage than good. It was Al Anon where Mom met Maria and our lives were changed for the better and for the worse. Diarrhea (I couldn’t correctly pronounce Maria and still find it amusing.) was married with two children, one of whom was 19, married and pregnant, the other in highschool. I mean no disrespect to her eldest, but she was the reason for Maria being in Al Anon.  Maria was a former cop in a women’s prison and going to school to be a social worker. 

[Oh the irony in that last sentence.. Sorry my mind is getting a head of itself.]

Mom and Maria became instant best friends, practically inseparable. I know what you’re thinking, and no, my mom is NOT gay as well; shes 100% straight. Maria? Well, we’ll get back to her. To my mom Maria was her sister, her “solemate” (in a completely platonic way – maybe more like her “twin flame”) and the one person she trusted with all that she is. To Jack and I, Maria was the bitch that took mom away, the controlling social worker who tried [telling] Mom “how” to raise us (like she knew better) and a woman we’d hold resentment and hatred towards for the rest of our lives. <- It’s true. We do and will. I tried being mature and forgiving her… until I found out how much she had in common with the Mad Hatter!

Maria’s family became our family. Her daughters, like my older sisters. Once Maria’s husband was killed (Canada’s official record: suicide, USA’s belief: murder) Mom and her grew that much closer. Again – inseparable. Every chance Mom got she was out with Maria. On weekends Jack and I were with Dad one night and Auntie the other. Mom was basically un-reachable from 6pm Friday until 6pm Sunday evening; drop off / pick up time. During the week, when mom wasn’t working (which had become part-time and remotely due to her health) she was in bed or on the couch. In other words, Mom was either sick while with us or healthy enough to get out and be social with her best friend. We rarely took vacations and yet, during our summer weeks with Dad, Mom was always traveling with Maria. It’s no wonder I had a hard time [feeling] the love. Neglect is a powerful word and as a child, I may have used it. However, as an adult, I would never use it to describe the situation. BUT! The feeling of less importance and the thought that Mom was putting Maria before me, was real. Valid even.

As a mother, it terrifies me knowing that my choices will both affect and effect my children. Jack and I both feel, I guess, betrayed? Eh… maybe not the best word to describe how I felt, but it definitely works for him. Maria had this notion that because she had been through stuff with her own daughter, she clearly knew what was “best” for everyone else’s children. Don’t even get me started on how un-ethical she was as a social worker. Two words: total hypocrite. In her mind she may have truly believed she was right, knew best and was [only] trying to help, but truth be told; here is somewhere she caused more damage than help. Yes, Jack had his issues. He too went through a lot during the time of the divorce and he experienced lots of loss for his young age. He is four years older so he understood death more than I, and we had a lot of deaths in a few short years, on top of the divorce, moving to a new city and starting over at a new school. He has always been scary smart and way advanced for his age. He could have easily been Ivy League material had things been different.

Now, I don’t want this to turn into a bashing or tell all when it comes to my brother because quite honestly, it’s not my story to tell. However, there are things that have happened that are vital to my story, why I am the way I am and who I am. When you’re a child and you go through trauma you may block it out, or if you’re like me, you’re unable to forget anything from your long-term memory and therefore hold on to it all. I remember him acting out, rebelling and being scary as fuck. Sibling rivalry is one thing, but pushing me down the stairs and chasing me around the house with a knife is a different story. I won’t deny my instigating, annoying little sister antics but some things are too much. Long story short, it’s easy to see why my mother took the advice from her “social worker” best friend. But, uh… isn’t one of the rules of social work not to “social work” your friends and family? Thought so. 

Jack ended up leaving home for a bit and during that time, life was great. I had my parents to myself, I didn’t have to fear for my safety and I wasn’t dragged to a cramped waiting room to play with puppets week after week. Most importantly during that time, for the most part, I was put first! 

See, not only did I feel second best to Maria, I really felt as though I was third behind Jack. And since I’m being honest, there are still days where it seems Mom puts Jack, as well as others before me. She has a problem when it comes to saying, “no” and feels it is her responsibility to be there for everyone. Maybe I am being selfish but if history has proven anything… it is not all in my head.

When Jack came home things were touch and go for a few years. Once he was in middle school and news got out about my dad, the bullies found him to be their favorite target on top of his gifted classes and ‘band geek’ status. [Side note: it was our nextdoor neighbor and his “best friend” who spilled the beans. Yeah… Jack’s [best friend] was just deferring the attention away from the fact he himself enjoyed the boys. I’d call him an asshole but the sad truth is that he did what he needed to do to survive middle school. It sucks – for everyone!] Our house soon became the victim of vandalization and Jack’s behavior quickly escalated. Mom genuinely fears for all of our safety so he started spending more time at Dad’s and by 14 he was moved in completely. Even though I had an older brother, by the time I was 10 it felt as though I was an only child, except for on weekends, Tuesday nights for dinner and 5 weeks out of the summer until I was 15.

It’s safe to say that for a few years there – okay, maybe even a decade, that Jack had some resentment towards Mom and of course blamed Maria for the choices Mom made. He rarely came around and never on his own accord. Obviously this destroyed Mom! She did everything she could but nothing helped. Not until he wanted to bring his college girlfriend home and Dad and Brian wouldn’t allow it, or rather wouldn’t allow them to shack up in the same room. It was then that Mom’s guilt came to the rescue and forever altered her behavior when Jack’s around. From then on, whatever Jack wanted, Jack got! Still true to this day whenever he is in town we are on his schedule. There was one incident when I was 17 that eventually became Mom’s eye opener. Jack and I had gotten into an altercation that resulted in him barging into the bathroom as I was getting ready to hop into the shower. I used all of my force to fight against him to close the door but his rage was too overpowering that he broke in, causing me to slam my head against the side of the tub. Screaming and crying for Mom’s help was no use. She was too busy downstairs with my aunt preparing for Thanksgiving dinner. All that my ::quote:: “overreacting” ::endquote:: did was embarrass her and piss her off. Of course it was my fault and I, “shouldn’t have instigated the situation.”

I was done!

I instantly packed some bags and moved in with my dad and Brian for the next few months. My how the tables had turned. I suppose betrayal was the correct word to use after all! Unfortunately I wasn’t able to completely cut ties with Mom due to school and my weekly homebound tutor. However, I was no longer staying quiet and made my feelings known. I would not return until she agreed and had proven things would be different… She was now in the middle of her own guilty battle.

Fortunately for me, this was around the time her friendship with Maria started to crumble. Mom was forced to step forward and physically be there for me more than ever before. Not only that, but she had made other friends and had different priorities now. Maria couldn’t handle coming second and started becoming crazy jealous. With jealousy comes anger and she was downright mean. She made Mom feel guilty over things she had no business feeling guilty over. Mom was tired of feeling like the victim, she finally had enough and stood up for herself. Yeah… that didn’t go over well and ultimately she made the decision to walk away from the friendship. It was only then she was able to see clarity. See where she went wrong and how selfish she had been.

As it turns out, Maria, the delusional, hypocritical social worker – had it in her mind that her and Mom were more than friends. Boom! Mind blown… Although, not really. Don’t get me wrong, never once did I think her and Mom were “together”, but I don’t think anyone was surprised to hear Maria was a lesbian. Anyone besides Mom, that is. Oh my poor mother! Talk about the worst gay-dar in history! Oh my god, and the betrayal?! I mean, honestly, how can anyone sane believe they are in a romantic relationship with someone without ever discussing it? There was never anything remotely romantic between them. Nothing intimate, not even a kiss. Maria never indicated that she felt anything more than the sisterly bond that Mom believed they had. Mom had no indication what-so-ever that Maria wasn’t straight. Ironically, all of her arguments “proving” why she didn’t believe it, contradicted what she already knew thanks to Dad. She’s still in denial. The worst part is that Maria is such a coward, she has never directly told Mom any of this! Then how do we know, you ask? Well, Dad ran into her and her partner, and after introducing  Dad as, “Deb’s ex-husband,” (so she’s obviously mentioned my mother at great lengths) she proceeded to ask him, “you know Deb and I were together, right?” W.T. actual F.?!! Who knows if Maria actually believed it or it was all a facade for her new girlfriend; either way it’s royally fucked up! It’s no wonder my mother can’t trust anyone new. The two people she trusted and shared her life with destroyed her perception of reality.