Pregnant…Again…At 39

You don’t really understand how old your body is until you end up pregnant at 39. It was obviously not at all planned or expected. I did not want a baby with the father either. With a miscarriage in our history together, the only solace I found in it was knowing this man was not someone I wanted a baby with. But, things happen that we can’t expect and for reasons we can’t explain. Maybe this baby was just supposed to be here and it’s that simple.

I didn’t know what to expect with this pregnancy. It was about 12 years since my last pregnancy and that one didn’t go the best. My brain tried to explode and half my body gave out on me as a result. I wanted everything to do with that baby but was afraid of my body and it’s new limitations. I never quite held him. I spent a lot of time in bed dealing with terrible and debilitating migraines. I was angry or depressed at all times. Everything about me and my life as a mother and a woman was different and I didn’t know how to accept these changes all at once.

This time though, I knew I would adjust to having a new baby with each day. We would grow and accommodate our needs together, something I didn’t allow early on the last time around. But how would my body handle the actual pregnancy? Turns out, my body is freaking amazing and strong and powerful. I’ve survived the stroke 13 years ago and I’ve recovered fairly well. I still need my leg brace but it’s almost like I was born this way, I’m just so used to living with the use of one arm, this limp, and this annoying hip pain. I’m told all the time by those close to me that they forgot I’m with disability. It’s irritating and confidence building at the same time. Very conflicting.

Honestly, my post stroke body had little affect on this pregnancy. I got off all my meds which wasn’t easy. I had terrible withdrawals and had gone into detox without knowing it. I was nauseous, light headed and dizzy, fighting night sweats, restlessness, and the feeling that my skin was trying to crawl away from me. But, what surprised me the most was the truth in limber joints and soft muscles during pregnancy. My spasticity in my left side had all but disappeared. I’ve read about this in my support groups early on after my stroke but didn’t know how much truth was in this.

Delivery

Last time I did something called passive delivery in second stage labor. I wasn’t allowed to push and had to rely on my uterus to do everything on its own. The thing with this pregnancy was that my uterus was in a strange position. I was first told it was upside down but no, it was tilted back which meant i wouldn’t feel baby move until he was big enough to kick every organ through my uterus. The first time I felt him move I broke down in tears because I was already in the second trimester when I finally felt him. I didn’t think it would happen. And then I never stopped feeling him move after that. He kicked books while I tried to read. He kicked my phone when I used my belly as a table, and he wiggled and jived throughout every day, never letting me remember what it felt like to be without him in my belly. Every day I woke with this sense of fear that this would be the day my world would crash and burn. I had migraines again. I was crying at and for every little thing in my life. I didn’t think I’d make it delivery.

So I was allowed to push. What I pushed for was to be induced at 39 weeks instead of waiting until he was ready on his own. I was only allowed this because of my history and age, not because I wanted it though the doctors would have been fine without my being induced. My first 2 were induced so I guess I was just more comfortable with the idea of a “controlled” delivery. They gave me straight fentanyl instead of the cocktail of muscle relaxers, sleep aids, and opiates they gave for my first 2. I was a little shocked that they were so casual about it and that it didn’t last very long. Medical grade is not at all the same as what’s on the street, thankfully. I wasn’t in labor long I don’t think. My doctor told me to expect this to be easy. Said my pelvis was impressive when considering it allowed me to pass 2 eight pound babies in the past. Said this baby should slide right out. Why didn’t I believe him? I mean, I literally laughed my second boy out of me. I got my epidural. Always the scariest part, right? For me it is. This baby was really doing so much of the work. Dancing his way down the canal and causing a great amount of pressure for me. They put a weird peanut shaped “ball” between my legs and rotate me every few minutes. So much time went by without anyone checking me that I look at the nurse and say, “Did you put something else between my legs? Feels like there’s a block there.” She looks, looks at me without checking how dilated I was, then looked at the other nurse. “I see him.”

This kid was ready. I pushed him out without making a single sound, Katie Holmes style (that poor woman). I gave one push. Started another at which point the doctor said, “Give it your all girl!” So I did and there he was. That simple. But was it simple? He was healthy and I tucked him under my shirt, between my boobs without hesitation (after the cord was cut). I got his goo all over me but I didn’t care. This baby was different from all the rest. I felt all the feels they talk about in movies and books. Feels I thought were made up because I never experienced them before. From the moment he was on me, I knew he was different for me. He made me a better mom in that second. I felt absolute, endless, deep, and wide love that truly has no words. I saw my older boys differently. I felt different. I was flooded with emotions I’ve never felt and I was coated from head to toe in the dripping sense of purpose. My world rounded out and my vision became brighter than ever before.

I don’t know the terms for what happened next because no one explained it to me. But a nurse couldn’t stop staring at my placenta. The edges, or ridges, or whatever, were wavy? The umbilical cord was flat and thin. Supposedly this means I might not have survived another week. I knew something was “wrong” but didn’t feel in danger those last couple weeks. I told my mom over and over that I didn’t think I would go the full 40 weeks if they made me. And it turns out, I was probably right.

Nothing is ever simple with, or for me

Geriatric Pregnancy Post Stroke

I said it would be a few days. Clearly, I lied. I’m a single mom to 3 boys, life isn’t the easiest for the me. The only thing going is that my disability allows me to be a stay at home. I wish I could work, but as I’ve said in previous posts, I have no idea what kind of work I could do or who would take the risk and hire me. Then there are times where I have no idea how I would accomplish having a healthy home if I worked. How do women do it? I don’t know but many kudos and props to all the single working moms out there. I mean, a day where I have to do laundry, groceries, and mop…AND cook dinner? Those days end early due to exhaustion. And, mind you, my groceries are delivered. I don’t even leave my house and still get tired from groceries! I wonder often what kind of mom I would be had I never had a stroke. Would I have finished college and gotten a job in that field? Would I still have 3 kids by now? More? Would I still be married? Would I bother folding EVERYONE’S laundry or just throw a basket of clean clothes in their rooms? Would I have learned to cook the meals I’ve learned over the years or would we still be eating frozen and boxed foods? These are things I will never know the answer to and that’s ok because none of that matters to my real world.

I don’t remember if I mentioned it before, but I had a miscarriage during the big Texas freeze of 2021. It was unexpected. I had no idea I was pregnant. If I knew, I wouldn’t have spent the freeze drunk and high. Yeah, I was with a guy who got me into blow. The weird part is that it never did anything to me. I took my meds every day but that shouldn’t have mattered when considering literal hundreds of dollars (someone else’s money) of nostril nachos (I heard someone call it that once and it’s never left me) was going up my nose in sometimes one weekend. Never had a seizure, never woke up with blood on my face or chest. Never affected me outside of causing my mental health to slowly deteriorate. During the freeze my boys were with their dad and he wouldn’t bring them home until the roads thawed enough to keep others from driving batshit crazy and squirrely. So I partied. Hard. Daily. Then one night, while getting frisky with the biggest idiot I’ve ever let into my life, there was blood everywhere. And I mean…a horrifying amount. He jumped in the shower and I used the toilet. And there it was, on a piece of toilet paper in my hand. This veiny…I can’t describe it but there it was. The grief was intense and I held it in until I could be alone to feel it. And when I finally felt it, because idiot needed consoling first, it was like this hole in my chest filled with hot gravel that melt its way to my spirit and I just couldn’t feel happy about anything.

Not Perimenopause

The toxicity, the drugs, the alcohol, it was taking its toll on my mental health and I was losing myself. So I took action knowing the only way to truly get away from him was to end my diabolical relationship with vodka and blow. And that’s what I did. My resolve was unbreakable. I blocked him on everything. I stood in my living room instead of hiding while he knocked, banged, and yelled at all my doors and windows. I needed him gone for myself, my 2 boys, my home, my mental health, my physical health.

I had just turned 39 when the symptoms went from medical concern (I got carpal tunnel the day I got pregnant, I swear), to what the actual fuck. Some time later, I took a test. I was in complete disbelief. I took another test. Then I ordered an expensive test, a fresh one that hadn’t been sitting in my bathroom cabinet waiting for a missed period. The results were all the same. I fought to remain in denial. Menopause. Had to be. Who gets pregnant at 39? Not me! I had pelvic pain, nausea, migraines, dizziness, an appetite for fried rice that hit so hard I spent hundreds on Chinese takeout the first few weeks to month….until I was broke. But no, it was menopause, in my head it was menopause. Eventually my vacation on Denial Island was over. Too many tests, too many doctors, too many symptoms, it was just too much to ignore and avoid.

I had to tell the Idiot and he didn’t think it was his. Why? Because I didn’t answer his calls, his knocks, his nothing. This, to him, meant that I had many other men in and out of my house. That, in turn, meant that some other guy had gotten me knocked up. There were other men. But after the first one night stand, I took my first test. You don’t get pregnant right away, in case you didn’t know….I googled it. No, it was the idiots. Damn. I’ll never get away from this man now.

I will return once again to continue telling this saga. It was an amazing pregnancy and I want to share my experience but I will work to keep my post from becoming a novel. With luck, I’ll share the rest before the weekend is out

Long Time No Post!

The site has changed so very much since I last bothered to write. My life has been a mess. I don’t even know when I last posted so I will give a brief update and go from there.

I’m still with disability. I was working out at home because I’ve learned that the therapists in my area are pure shit. I’m just a check to them, so fuck them all. I was managing over 200 squats a day. Doing lunges. Using an aerobic stepper for various workouts a created for myself. My limp is barely noticeable most of the time. But damn that anxiety! When it hits, my leg stiffens and I get that peg legged pirates gait all over again. My left arm, I can’t do anything for it. No one wants to work with it so it just dangles at my side; unless, anxiety. With anxiety it rises as if it wants to wave at someone in the distance I can’t see, or wants to strike someone closer to me in the face. It sucks.

2018

I got divorced. It was more mutual than anything but after 13 years, I was devastated. My kids were about 6 and 10 at the time. They took it well. I didn’t keep them from their dad but I did file custody after 2 years to make sure they’d always be mine. And also, child support. I live in housing receiving shit disability pay. Can I work? I honestly have no idea. I’m pretty strong with my right arm. But I’m also pretty slow handling things like…cash money. It’s just not easy to count with one hand. Not sure how I would be in the food industry. I cook meals at home but by food safety standards, I don’t think employers would approve my methods. There is no “rush” in me. I’m 40 years old. I can’t hop, jog, or run. I have trouble on stairs and still hesitate stepping down off curbs. I think I’m pretty fast typing with one hand but the job I applied for online for transcribing did not agree. Anyway, I still live with neuro fatigue. I get migraines without warning though they did end almost immediately after my divorce. I will explain further at some point. Point is, I don’t see myself as a reliable employee.

2020

So covid hit, right? You know what happened to me? Nothing. Nothing. I benefitted from this deadly pandemic that shut the world down! Stimulus checks got me out of credit card debt (it didn’t last but it was nice for a minute). Places started letting me use my food stamps when I couldn’t before, and I still can (I guess those places really benefitted, too). I could afford ordering groceries because they lowered the cost of deliveries. And, most importantly, my food stamps tripled and let me tell you how amazing of a guilt trip that was! I was filling up my house, my kid’s dads house, my neighbor, my ex boyfriend, and my current boyfriend’s parent’s house. Oh yeah, I was dating….a lot. So let’s jump to that topic

Dating Is Way Different

So I met my ex-husband around 2005 or so. Myspace was still big, not sure if Facebook existed yet. Dating sites were taboo and to be made fun of. Cell phones were Nokia bricks without cameras. People met organically. I met my ex-husband in line at a Sprint store. Oh yeah, Sprint existed back then. When we split in 2018, everything was online. No one met in person anymore until after some sort of relationship built online in some way. I never tried Tinder but I did Facebook dating and Meet Me. Tried Plenty of Fish, I don’t recommend. I was all over the place! No one cared about my disability. Because I didn’t revolve my life around it. Guys said I was pretty and funny and smart and just didn’t care. I was having all kinds of great sex! I found myself! I felt great about myself! During covid I had distance dates which was just like facetiming and getting to know each other. I loved it. I was distance drinking with friends I had made. I had a covid date where he came over and cooked steaks and potatoes while I drank a vodka cocktail. We watched a movie, talked, and then he went home.

Vodka Was My Best Friend

One night, a few weeks after my divorce I was cleaning out bottom cabinets in my kitchen. Apparently my husband was hiding liquor under there. One night without my kids, I found myself in that cliche Hollywood rom-com (sans the rom) moment where I was without pants, sitting in the middle of my small kitchen with my legs spread, the bottle of that rediscovered Green Apple Bourbon between them. I bawled my eyes out over my shit life. I was single, my first attempt at dating sucked ass, and I didn’t know what would happen. How was I going to manage as a disabled single mom of 2 with little income? How would I get around without a husband to drive me? The answer was Lyft. How would I be as a mom on her own? The answer is fucking AMAZING. I just did it and little by little the anxieties I’ve had since my stroke started to go away. I was way too dependent on my husband. The divorce was the best thing for me. It changed me in so many ways.

Not long after waking up in the fetal position wrapped around my toilet with a green apple vomit bubble still burning in my throat, I started dating again. I met an alcoholic in 2019 who was pretty amazing as a person. While on a date I ordered my old Vodka 7 from my 20s, you know, because he was drinking his usual bottom shelf whiskey. I had to be on par with this guy. By the beginning of 2020, I always had a bottle of Vodka in my freezer. Any time I was overwhelmed, upset, super happy, super sad, angry, I was slamming shots. I was a mess because my husband, who I really didn’t want, did not want me at all. It’s just a hard pill to swallow. I got over it by buying some shrooms and doing them, for the first time, by myself. After sitting in the middle of my living in dead silence for almost 5 hours, I realized I hadn’t thought of him once. And that was it. Never cried over him again.

In June of 2020, I met what I want to be my biggest regret but can’t because the result of him is a beautiful 10 month old boy.

The EX and Our Baby

This guy is a right proper piece of shit. For so many reasons. The lies, I could write a book on his lies and have you laughing while seething because they are just so ridiculous. A recent example: the silverware drawer. I opened it to put away a spoon, he came in and closed it. I turned around and said I had just opened it to put stuff away. What’s he say? “I didn’t close it, I don’t see why I would. I just came in here. Was one of the boys in here? I don’t know why you blame me for everything.” Ok, first rule of lying when confronted: keep your answers short. And just, why? Just say “Oops, my bad, I’ll open it for you.” Why did it become a thing and then an argument? And why was I somehow the villain in the end? It’s a fucking silverware drawer! Jesus Christ.

In 2021, I had a miscarriage. Was it the drinking? The partying? The way my body is from the stroke? My age? Don’t know but it happened and this guy made it about him and the many abortions and miscarriages he’s been through with his many ex’s. I’m gushing blood (and other material). I’m cramping. I’m confused. I’m full of questions. I’ve never experienced this before and I’m comforting him for losses he’s experienced years before? Once he left, I broke down. I cried and cried. I cried so hard my shirt was nothing but wet snot. And I had to go through it alone. I didn’t know one could grieve over a loss of something they A) didn’t know they had, and B) didn’t know they wanted. I’ve always wanted a third baby but gave up when my husband said no and I just kept getting older. I tried my best to convince myself it was for the best. I didn’t think it would be smart to have a baby at my age with my life the way it was and I didn’t want HIS baby.

Fast forward to August 2022. We were in a very toxic cycle that involved copious amounts of alcohol and hundreds of dollars weekly in blow. I had enough. I was on too many medications to cope with the damage this was causing me mentally and emotionally. I had to get away from this guy. The only way I could do it successfully was to get clean and sober. So that’s what I did. He didn’t like it. At all. But I stuck to it. Come September of 2022, I found out I was pregnant. And this is where I’ll leave this. Baby is awake from his nap. I will return with a post about this miracle of a second post stroke delivery that wasn’t supposed to happen within the next few days. Promise.

All the Things Are Different

It’s been a very long time since I sat down in front of my blog.

Things have been tough. I think my last post was somewhat related to suicide; thoughts of suicide? I’m not even sure. I see no point in going back to find out.

Let me remind everyone who I am as quickly as possible.

2011, had a massive stroke. I am now without use of my left side.

I had a baby that same year.

2017, my common law husband and father of my 2 boys moved out.

I am now a single mother of 2 with no job, no idea how to progress in life, and struggling to learn to navigate life as if I was 21 with no responsibilities.

It hasn’t been 2 years since what I refer to as my “divorce.” I just ended a really awkward and not-so-great relationship with a dude I’ve been dating for roughly 3 months. Let me tell you, dating is f*ucking hard. Like stupidly hard. Like so hard that I really just don’t want to do it.

I hooked up with my kids’ dad in 200…5? I honestly don’t even know. We were 12.5 years in when he moved out Easter 2017. Online dating was still done on laptops and PC when we met. People still went into chat rooms, like those creepy white squares where everyones text is scrolling by so fast you got lost in conversations at times. I didn’t have Myspace, Facebook was still relatively unknown, and my flip phone still charged me per minute before 7 p.m and per text.

Now, here I am surrounded by all these apps people are throwing at me to try because, apparently, people don’t randomly meet each other and find their vibes mesh awesomely well together anymore. I am not a fan of this. I’m finding myself having to explain things about myself that I just don’t want to. “Oh, when we meet, ignore the limp…and uselessly hanging arm…and growing bald spot from a brain surgery, nobiggie, really.”

I’m An Embarrassing Wreck of A Woman

The thing is, I have literally nothing to offer a man. I’ve no money, family other than my boys, no friends, no future in anything, my food stamps and disability are hardly enough to support myself and two kids because I do not ask, beg or lie for more than the government has decided I need. I’m a stoner, slacker, and I’m pretty boring. I have looks. I’m 36 but I barely look 30. I look better than decent without makeup and like a model with it. But I also have low self-esteem because I’m very, helplessly loud, opinionated, emotional, passionate, and too honest for my own good. I am not easy to get used to, handle, or love. I have a permanent STI and all the brain injury stuff. It’s a lot to explain repeatedly over some dating app. I’ve decided not to.

Over the summer I decided to tell everything to f*ck off and just learn to be comfortable being alone with my two boys. Why worry about a partner if I cant be my own, first? It was not as difficult as I thought it would be. I learned to fill my time alone when my kids went to their dad’s. I took baths, so many of them. I started cooking meals just for myself. Drinking, not to numb myself but because it felt good to soak in a tub with a full belly and a buzz. I loved it.

And I was like…

Somehow, after learning to be with myself, learning to enjoy my time alone, I met a guy and boom, I was like, “me, who?”

With this guy, I quickly discover what I want with a man. This guy is giving me ideas and I’m falling in love with them. Not him; the idea. Let me be clear. I told him my secrets, and like always, he accepted them. Why was I worried? This is so easy! Concerts, breakfast in the afternoon, spending literally full days in bed. I’ve never done that before. In my 36 years of life I have never spent an entire day in bed with a man, rolling around, having sex, smoking pot, drinking coffee and laughing and making out for no reason. I loved it all. But I knew he wasn’t for me. Physically, he is not what I want in a man. He was 40 but he reminded me of the boys I had crushes on in Junior high. Skinny, hat with the rim bent almost entirely into itself, always up on an angle on his head like he just didn’t care. Bass player for a metal band. But he was also an alcoholic. And he didn’t want the kind of future I wanted. I still have time to build, maybe not with new babies but can build nonetheless.

The worst part? Before meeting ST, I had found my sexuality again. Despite the horrendous gifts I bring, I had a man I could call but never had to because he always called me. Sex, 3-4/week. Sometimes he brought food. He wanted nothing more than what we had. I needed more and somehow, in my search for this elusive “more,” I managed to give up everything I had found within myself. ST couldn’t even keep up with me sexually. I told him first thing I have a very strong appetite. I mean, we’re talking years of sexual deprevity due to a passionless marriage. I have A LOT of making up to do and my body is demanding every moment it deserves. I suppose ST didn’t exactly understand, or simply underestimated the depth of my hunger.

I Learned A Lot

Like, for instance, I still have a lot to learn.

I want all that fun stuff as much as I deserve them.

I do not have to sacrifice my time, myself, my body’s wants and needs, for some guy.

I do not have to settle.

My disabilty/ies are not reason/s to hide from any/every thing/one

I’ve been holding myself back for a very long time, and I learn to not only stop doing that, but to push myself forward instead.

I’ll Get There

One of the most important things is that I keep listening to my gut, my kids, my heart, and my head. I have so much to do in my present life. I need to focus on myself as a woman and a mother before I start the whole enter man, situation again. I have to do it right this time. I can’t keep losing myself whenever I meet someone…new or old. It’s likely going to take more than one mistake. I tried so hard to keep myself whole while this guy and I failed…but not miserably. I’ve seen a light and it wasn’t bright…yet. I will dig myself towards in hopes it is not the ass of a glow worm…

Realizing My Growing Parenting Deficit

It’s not going good

    Being a disabled parent to a child with a physical deficit is becoming increasingly frustrating.  I keep finding myself yelling at JJ because I can’t help him the way he needs me to.  Sometimes I just want to cry about it but it’s never when I’m alone; it’s always when I’m facing my limitations with him.

The school wants my attitude

     He’s 5 years old now and in kindergarten.  He doesn’t know how to put on his socks or button his pants yet.  He doesn’t have the motor skills in his hand nor the hand-eye coordination.  It’s strange because it’s not a fine motor skill issue, and not a gross motor skill issue, either.  I don’t know how to define or describe it to get him the appropriate assistance.  What’s worse is fucking politics right now is driving my anxiety through the roof every time I think of JJ in public school.  There’s no room for a few extra minutes for him.  He’s already spent too much time in the principal’s office.  He’s not a bad boy, he’s just restless and physically distracted– if that makes any sense.  I’m not making excuses for his poor behavior. I know when he’s acting out, and when his teacher doesn’t have the patience for him.  Send him to the office when he throws pencils on his table after you repeatedly tell him to stop, I will not fight you on that.  But he has trouble standing still without moving at least one part of his body at all times…he shouldn’t get sent for that.

     He has a sensitivity to tones and sounds (we’ve tried music therapy to no avail).  He panics when he hears certain sounds; like not all alarm clocks have the same effect but ones that have a slightly deeper pitch seem to have a negative impact on him and he screams like he just found a masked murderer hiding in the shower.  It scares the living Hell out of me every time he has one of these events.  You literally never know when it’s going to happen because we don’t know what causes this reaction.  ….but he shouldn’t get sent to the principal’s office when it happens at school. The teacher, who’s been informed of his “personality,” reacts to his panic without understanding, and it’s difficult to calm him.  She sends him to the principal’s office where he’s stuck sitting, in trouble, for something he can’t control.

     He gets lunch detention often because he talks…during lunch time.  They then make him eat alone; they push everyone away from one end of the table and make him sit like he’s quarantined.  It’s irritating and I’m honestly not sure what to do.  He’s not “disabled enough” to receive therapy through school and because the state cut the budget for in home therapy for kids through Medicaid, getting a new appointment for therapy through the facilities here is incredibly difficult.  All the slots are always full; even the afternoon slots where your kid has to miss school multiple times a week, for a few months a year, if not throughout the whole year.  What makes this so much worse is that I feel like if I go to the school and tell them I think they are on the path to creating an unnecessarily turbulent ride for my child early in his educational career, they might take it out on him.

Frustrations in our limitations

     I feel powerless.  You’d think, considering our similar deficits, that I’d know how to handle this; but I don’t, and he’s getting older and I’m freaking out more.  The other day I tried [again] to encourage him to button his own pants (he wears elastic waisted jeans to school and buttons at home for practice).  I try so hard to be patient.  I try to speak calmly for both our benefits.  But I only have one hand.  I can button his pants perfectly fine but I can’t seem to find a way to teach him how to do it on his own, and he needs to learn by the end of this coming summer.  I have to rely on Kasper but he is never here when JJ is .  After 20 minutes of trying, I failed and ended up screaming in his face that I

only have one hand, how do I teach you to use two?  Use both of your effing hands for Christ’s sake!

It’s not his fault his right hand is weak, and it’s not his fault I don’t have two hands to use as an example, either.  I know this as words are coming out of my mouth at a high rate of speed as if I’m angry at him and blaming him when it’s really….it’s me projecting.

     His brace is already getting too short but because he needs to see a therapist before getting a new one, we got him longer socks to keep the bruise on his shin from getting deeper.  I tried putting them on him the other day– I have few problems doing it with ankle socks and one hand even with his right foot, which he has trouble keeping straight and controlling his toes; and I remembered why I stopped buying him anything other than ankle socks when he was 6 months old.  It’s too fucking hard.  My hand can’t get in deep enough to spread it wide enough to get it on his foot.  I need to find a way to roll it down like a normal person would.  I haven’t figured it out yet.  Point is, I ended up throwing the sock, which ended up looking like I threw it at him because I threw it down as I stood up.  Poor kid…

I make it worse

     I know there is a lot I’m doing wrong.  The more patience I exhibit when dealing with my disability in front of or with him, the better off he will be with both his deficit and his own patience.  But, I’m not that person and I never, ever, never…ever have been that person.  That’s a huge problem.  When Skas was born and cried first thing in the morning, I had to repeat to myself before picking him up:

Smiles, we always smile, baby only needs smiles

It sounds stupid, but it worked and I was able to smile as I prepped him for breakfast.  It kept my patience in check until I could break safely away for a cigarette and coffee while getting ready for work. I think the stroke damaged the part of my brain that reminded me seconds before reacting to my baby/child that I don’t want them to be angry like my genes tend to help me be.  I don’t want either of my kids to learn that from me.

 Have to find and be that voice

   I always tell JJ to let me try when he needs something and comes to me.  He asks then  tells me, “But you can’t do it.”  Do you know how painful that is?  It hurts so badly that I can only smile and beg him to challenge me and my arm.  I never know if I’m going to be successful or not.  Most times I am successful, but now that he’s getting older it’s getting harder because things are getting more difficult for his hand.  Shoes are getting more complicated, buttons and zippers are popping up on more clothing and items (backpack, lunchbox); and, just because I could help him the last ten times does not mean I can do it this time without a cuss word or four.

     So, after I convince him to let me help and fail miserably, it’s a terrible experience for everyone around.  It hurts JJ most in the end because he sees my awful reaction and probably feels ashamed or blamed, and he’s learning very poor character behaviors.  He also will eventually stop coming to me for anything and I’ll feel like a total shit parent because I was aware of it all going down as it went down.  Sometimes I’m lucky, however, and I can rebound somewhat quickly by saying something semi-positive like:

Well, even though I failed and cussed, at least I tried.  Maybe next time, eh, turd?

It’s usually the best I got.  I don’t know what else to do. I think to myself that he needs to know I tried and will try again even– if I have to say it with my teeth clenched to keep him from seeing the hurt from frustration through my tears.  I need to work on ending all my failures with positive connotations, not just some.  He needs to hear and learn how to fail with some sort of grace and dignity…

Work towards the greater good

     I have to work harder to be better for him.  He deserves that and more.  He will face challenges, just like Skas, but he will have a steeper hill and it’s my job to make sure he knows how to inhale-exhale properly while on his journey.  How better to help him than by setting the example myself?  I can’t think of who it wouldn’t benefit. So it’s all a matter of me putting in the work…. You expect that, as a parent; at some point you realize old people always saying parenting was a full-time job were not messing around.  I just didn’t realize that it would require so much work on myself and that will be tiring and pointless for myself at this point in my life but for JJ? Do I have any other choice?

That Time I Went to the Gym

And then chipped a tooth to keep from crying all the way home

     Out of boredom, after nearly 6 years of gathering courage, I finally went to the gym to give machines a try.  It was a whim.  It was bold.  It was spontaneous.  It was courageous.  It was a damn mistake.  Everything I feared would happen, actually did.  I even got kicked out.  Yeah, I got kicked out.  I was wearing jeans, I get it, it’s against the rules….but it took me 6 years to get there and all I did was find out how completely unprepared I was, and that my anxiety is more a predictive service than it is a restrainer.  It knew what was going to happen.  It knew I wouldn’t be able to use the machines without the assistance of a professional (as in, not my husband).  It knew I would have difficulty walking.  It knew I would feel utterly, hopelessly lost in a fucking gym.  It knew I would apologize for every breath I took in that damn place.  It knew that the longer I was there, the harder it would be to keep trying.  It knew that the harder I tried, the clearer my boundaries would get.  It knew that I’d be so wound up by the time I’d leave that my left body would be near completely useless.

And Yet I Went

     And I’m not entirely sure why.  I knew Kasper would chaperone me even if I told him not to.  I knew he would feel obligated to follow and assist me.  I knew this would make me feel terrible and guilty.  I knew it would make me wish I didn’t agree to go; like I was some groupie girlfriend who can’t ever leave her dude’s side and must always have him hold her hand through everything.  I knew he’d push me to try machines I already knew I couldn’t use but would try anyway because it’s what he wanted– and I knew I’d be the one walking away each time feeling worse for walking face first into yet another wall of limitation.

     I knew my left body wouldn’t cooperate.  I knew I’d feel jealous of everyone around me.  I knew I’d look at the machines I couldn’t touch and feel my left body growing heavier with the weight of its burden.  I knew I’d look at the others and see a reflection of myself that could never could exist.  I knew Kasper wouldn’t understand how I felt inside and how much I just wanted to spin in a confusing circle and scream “I don’t know what’s going on!!”  I knew he wouldn’t understand how much of myself I had to swallow just to stay inside that God-awful place.  I knew he would have a negative view of me by the time we left.

Anxiety Warned Me

     It warned me for almost 6 years.  Every time I seriously considered going to the gym, everything mentioned above would flit through my brain like a gnat trying to land, knowing it can’t.  It’s overwhelming and no matter how much I’ve wanted to go, I just couldn’t bring myself to do anything more than sweat profusely and say:

Maybe next time

So…Maybe Next Time

     What I hope is that it won’t take me another 6 years to enter a gym without a prescription required, first.  I wouldn’t mind physical therapy so much if my city had a decent facility with decent therapists.  They don’t have to be the “best of the best,” “cream of the crop” type crap, but, can I get an actual therapist?  For once?  I don’t know how others do it.  One day I’ll figure it.  Today obviously wasn’t that day.  It’s unfortunate but at least I can say I tried….right?

Maybe…If I Try?

The problem

     I’ve been thinking a lot about our shitty financial situation and how little I’ve been able to contribute.  I feel so much blame for things being the way they are.  It wasn’t just my stroke that put us here, but also my shitty life planning skills.  I love Kasper, but I’m too honest and realistic to deny the fact I hooked up with a “loser.”  He’s never had any goals, truly put in work for anything, or showed initiative, gumption, or care for anything that required any kind of labor– including the labor of effort.  He does what I view as pretending to try, both of us knowing it’s always for show.  When I was working, I assumed I would be the responsible one: the one always thinking about how many hours she can squeeze out of her job, sacrificing personal items so the house can have what it needs, and sacrificing time with her family so they can have everything they need and want.  I always assumed I’d be the one planning, earning, and spending.  I was okay with this because, like my mom, putting in the hard work at an “easy job” was so much better than failing at trying to be successful.  So, I accepted Kasper and his way of avoiding life because it kind of aligned with my own ideology.

     In all honesty, I probably could get a job.  The question is whether or not I’d be able to keep it; or, how long would I be put up with before I’m finally fired?  Doing things with one hand isn’t really as difficult as one might think once you get accustomed to it and learn how to work with it.  It’s this other arm.  It gets in my way; like, a lot.  The other day, I was sitting at the house PC browsing for Christmas gift prices; I’m not sure how it happened, but my left hand got stuck to the underside of the chair.  My fingers had curled up around something under the desk chair!  I got so anxious about being stuck that it tightened my grip and turned my elbow so I basically locked myself in…

     I have more than a “limp.”  Limping is no big deal, I’ve worked with people with limps before.  It’s not just the limp, however; it’s the speed, the hip pain, the knee locks, the supination of the foot, the teetering while standing still, and the overall frustration of remembering how to walk: back straight, chin out, don’t hitch the hip, don’t let your knee lock, keep your arm in, eyes forward but also monitor your space for careless folk. You see, my “limp” is a full mind and body battle with every step.

     I’m unreliable and undependable because of chronic migraines, chronic fatigue, chronic pain, spasticity and joint stiffness/aches.  I’m easily confused by numbers, columns, time, letters that don’t make words, basic written instructions, directions (e.g, I never know which side of the building the street is on).  I’m emotionally unstable; there is literally no telling how I will react to anything.  I may cry, I may yell, I may laugh– I’m sorry you crashed into a brick wall. I promise my uncontrollable laughter is not because I find your car loss funny; it’s just my mind being impossible…again.  It could seriously go either way with me.

I’m going to learn to drive

     I have anxiety, the kind that’s more negative thinking and heart palpitations than it is hyperventilating and shaking.  I’ve had it all my life; it makes it difficult to go out in public, and having this acquired set of disabilities has helped me feed the anxiety I learned to silently starve throughout my late teens and most of my twenties.  I eventually had to get a job (I was 19) and the anxiety just kind of melted away on its own after a while.  I was still damn awkward but I was out there meeting people, smiling at strangers, and soon, walking into stores with my chin out and head high, striding confidently to get what I needed, pay, and leave.  I keep thinking I can do this again– that a job will help me be who I want to be, with disabilities and all.  But it doesn’t work like that.  Everything is a process.

     I have to regain independence.  I never learned how to drive.  I was scared, for one; and two, Stilla got all the driving lessons from the parents.  Mom took me to a graveyard once but I got her escort stuck on a tree root crossing the graveyards narrow dirt road. She tried again 2 years later.  I almost drove into a ditch because she forgot to tell me the power steering went out until I tried to turn a corner and the truck kept going forward.  There were a couple friends that tried but one had a “hoopty” and was difficult for me to manage. The other had a truck.  We were in a parking lot, during the one time I tried snorting meth.  I almost drove into a light pole but managed to do some sort of master reverse maneuvering thing which was pretty awesome…

Picture it brown and imagine it squeak and squeal with every bump it hits

     Learning to drive won’t magically give me a job, “cure” my anxiety, or do anything else I’d rather not work hard to accomplish, but it might provide me with a renewed sense of independence.  I can no longer walk where I want to go and taking the city bus, despite it being an affordable option, is something that really ruffles the feathers of my anxiety.  There’s a lot to consider that sound like excuses but in my head are perfectly sane reasons to avoid the bus altogether.  I would really love to go to a store and actually look at what I want to look at rather than always considering how much time of Kasper’s I’m stealing from him. I feel this will help us both a lot.

It’s time to be for real

     I want to trust Kasper to get a better job, to accept more hours, to do what needs to be done without laying the guilt on me, but I don’t think he’s capable.  There’s a reason I “wore the pants” before the stroke.  There’s a reason he’s still at the same shitty job with the same shitty hours while I’m biting my nails down to nothing.  I can’t use my thumb right now because I bit the nail so short it exposed too much thumb skin…ew.  I feel if I learn to drive, Kasper will be forced to run out of excuses.  I can take myself to my own appointments.  I can worry about the kids’ school schedules while he worries about getting a better work schedule.  I can do the grocery shopping while he’s at work (I’ll find a way to get groceries in the house on my own).  I feel like he’s using me as an excuse to not grow up while telling me how he’s ready to grow up.  Dude is almost 40….

     So, if I get my license, which I’m told I can totally drive with one hand without a special needs vehicle, then I’ll relieve some of Kasper’s burden while gaining independence.  I’m hoping this independence will help me learn to function with my anxiety once again and help me get a job.  Maybe functioning outside of my house and contributing to it will help with my depression.  Maybe weakening my depression will strengthen our household…

Maybe I’m putting too much stock into maybe’s…

Apparently, I Hide It Well

Disability…prevalent?

    I’ve had physical disabilities for over 5.5 years now.  I think it’s obvious: I hobble and limp, swing my arm like a chimp, am lopsided…the list goes on.  Sometimes my nerves and anxiety get me so physically wound up that my left arm sticks out like it’s waiting for a proper lady to come slip her arm through it.  Sometimes my leg stiffens and it’s like walking on a stick with a shoe at its bottom.  I get stuck in doorways, freeze in crosswalks, and anything more than a quarter of an inch high is considered a step to me– one I have to mentally map how to approach and conquer.  I think my disability is quite evident to people who meet me standing up, see me walking, or have spent enough time with me to notice that I don’t move my left arm or hand without my right hand’s assistance.

The random “really?”

     I spent the first year of my post-stroke life mainly in a wheelchair.  I used a quad cane at home or to go places I knew I wouldn’t have to walk long distances.  With the chair, people knew I was physically limited.  I think the first time someone was surprised to learn of my disability since leaving my chair was a couple years ago, the maintenance man in my complex. I’d been in this apartment a couple years at this point, was familiar with this maintenance man, and thought he was familiar with me.  Maybe he finally noticed something on this day but he was really dumbfounded when my response to whatever he said to me was that I’m “partially paralyzed” on the left side.   He couldn’t believe I had a stroke or that I had such physical disabilities as a result.  I couldn’t grasp his disbelief for days…. How had he not noticed?

Kids don’t see disabilities?

     I don’t like other people’s kids.  I never have.  Even as a kid I preferred older kids and people; not because they made me feel older but because they seemed to respect my silence more.  There was no obligation to communicate in a way that entertained them.  Older people don’t mind kids that are quiet, I learned, and it gave me an opportunity to observe without interference or ridicule.  The kids in my neighborhood that my kids play with are not at all like I was growing up.  These kids are annoying and inquisitive in a very loud way.  I can’t stand it.

     Not liking other people’s kids doesn’t keep me from socializing with the ugly turds, however; especially not when I’m outside with my kids and they come to play with them, too.  I may not move around much when people are around me but  I still move.  One thing I do often with my youngest is draw with chalk on our stoop.  He loves when I draw things for him, and so do the neighborhood kids.  Usually, halfway through drawing something, I have to chuck the chalk aside and vacate the area before I’m known as the “bitch mom” because these kids really get on my nerves with their questions.  So, I know these kids have seen me struggle to get up from the ground, seen me step on and off our one inch high “step” with caution, and seen me use Skas’s shoulder as a cane as I crossed the bumpy yard for one reason or another.  Despite all of this, no child has ever acknowledged my useless left side.

When parenting brings you courage

     I have a lot of anxiety about a lot of things when it comes to parenting– one of those things being other parents.  I believe in children learning to cope and deal with their problems but every now and then, as a parent, you have to step in and protect your kids.  That happened to me today.  I’m not a very confrontational person but I am aggressive, especially in tone.  I worry that I may say the wrong thing and parent’s may not want their kids associating with me, leaving my kid feeling left out because of me.  I also worry that my stepping in might teach my kids how to avoid dealing with their own problems. But today, not even my anxiety was strong enough to stop me from stepping in.

     Skas came in from playing with his friends and after some prying I found out he had 3 large bumps on his head because this kid hit him with a broken piece of a toy gun.  Long story short, he came in so his “friend” wouldn’t see him cry.  I told him it was good he walked away because A.) this “friend” doesn’t know he hurt him; and B.) he walked away instead of making it worse by fighting unnecessarily.  I’m unsure if this was good advice but I felt like it was the best thing to say so he didn’t feel weak for not hitting back.

      I then decided I had to speak to the parent.  Some shite hit my kid in the head hard enough to leave 3 large bumps.  I couldn’t let it slide.  And, I had to show him I have his back and that yes, I will put on my brace and walk my miserable ass across our parking lot, and rat this kid out for being a douche.  While I’m waiting for this kids dad to put on a shirt, his annoying little sister comes out and notices my cane.  She asks what’s wrong and I just stare at her like there’s something wrong with her.  I explain my left side is paralyzed and ask if she’s ever noticed before.  She hasn’t.

     I tell the dad how I normally wouldn’t intervene in my kids’ yard drama but felt like this was something worth discussing with him and explain how his son hit mine hard enough in the head to leave 3 large bumps.

As a parent, I would trust you to understand why I felt you should know how your son chose violence to handle a situation.

When parenting brings awareness

     And that was it.  What took me 10 minutes to contemplate how to approach and what to say, was over with in a matter of, what felt like, seconds.  I stumbled and stuttered, I sweated and twisted my fingers nervously, but I stood up for my kid.  For years I’ve worried about moments like this.  How far will I let my anxiety and disability hold me back?  What exactly am I willing to risk for the sake of hiding?  Apparently, I’m not willing to risk the trust of my son.  I’m not willing to risk his health or safety while outside either.  And, apparently, I’ll instinctual-y confront other parents about their kids actions, something I worried more about since my stroke.  It amazes me how little I considered my anxiety in that moment.  It amazes me how little my left body hindered my steps to that apartment.  Like, I did some actual parenting…and I totally owned and survived it.

     On my way back to our apartment, cane in use and kids in tow, I thought about the little girl’s shock to see my disability.  I thought about the maintenance guy, and the people and looks in between.  How accustomed have I become to my left body, how much have I learned involuntarily to compensate for my physical losses?  Why do people seem stunned to learn I can’t just jog down a flight of stairs? Do I not look or move as crookedly as I feel I do?  I’m keenly aware of my disability; am I so concerned with how it appears that I’ve somehow managed to learn to reduce its prominence?

Catering to a Non-Disabilty

No one wants their kid to grow up to be this guy

     JJ is about to get his third AFO within the next year.  His right side has improved a lot since his non-diagnosis of cerebral palsy.  He’s still left side dominant but he includes his right hand more often than not now.  I can’t go as far as to say he’s ambidextrous despite the fact he writes with both hands from time to time, because everything significant that he does is led with the left hand.    He’s learned to jump, I think last year (at 4 y.o) and he can now wear sandals without his brace, which was a huge relief.  Personally, I hate not being able to wear sandals or flip flops anymore so I’ve put it into my head that he’d never know life unless he can wear sandals.  He continues to throw tantrums over things I don’t understand; it’s like he does something thinking he’ll get in trouble for it but when he doesn’t get in trouble because it wasn’t actually  punishable, he gets upset.

        He started Kindergarten this year.  We had our worries, like every parent whose child starts kindergarten.  There’s so much you realize you don’t know about your kid when this day approaches and you really start questioning your parenting abilities.

 

• Is he really potty trained?
• Does he know how to listen to people that aren’t yelling at him?
• Does he even know how to play with other kids?
• Does he know how to sit down without a tablet or T.V in front of him?
• Does he know how to talk?

     You’re likely to know these answers, we did, but you question them anyway.  You worry that your kid will be confused, throw his teacher the attitude he gives you, or somehow forget how to aim for the toilet.  We also had a few extra concerns like his impulsive behavior, his brace, and his need for systematic routine but for the most part, we pretty much knew what to expect.

     What we didn’t consider was his non-disability.  I’ve been unsure what to call this, how to describe his situation, and how to bring awareness to the right people in his life.  It’s not very complicated yet somehow it is.  He has, but doesn’t have, cerebral palsy.  He has, but doesn’t have, a disability.  He has, but doesn’t have, special needs.  It’s like he got so close to my stroke that he was almost, but not quite, directly affected by it. There’s residual effects of an event that he didn’t even have.  There’s no solid evidence that he survived a stroke in utero or a pediatric stroke, but there’s no evidence that he didn’t have one either.  His scans are relatively clean except for the PVL (<— I just found this site.  I don’t know how old it is but I’ve never seen it, I don’t think, and it has information I was never told nor learned from other sites. Now I’m kind of confused about it).  But, they did the scans too long after any such event would have happened; it’s impossible to tell if one did occur.

     We do everything we can to make sure JJ feels “normal” which isn’t difficult for a few reasons.  Number one reason: you don’t treat someone who isn’t disabled as if they are disabled.  Secondly, I also wear a brace so it’s easier for him to not recognize this as uncommon leg and footwear. Lastly, assistive devices don’t mean you’re disabled and they certainly don’t make you disabled.  We told Skas to be thoughtful of his brother’s affected side when playing with him but we don’t teach him to treat him special.  If JJ loses to him in any way, we tell JJ to try harder, we don’t blame his leg, his balance, or the extra tone throughout his right side.

     I guess we all simply adjusted in a welcoming manner.  Because of this, it can sometimes be a bit of a surprise when some brings up his “disability.”  The most recent inquiry was by the school the day we enrolled him.  The principal remembered him from last year when Skas was late one day and Kasper explained it was because JJ was having difficulty with something related to his brace.  I didn’t know how to answer the What exactly is his condition question.

What is his condition?

   I have no idea!  I tried explaining PVL first but her expression told me to stop.  I then told her it’s like a combo of CP, ADHD, and autism.  Her expression went blank on a level near complete conscious desertion.  So I said: he’s impulsive, easily distracted, temperamental and has right sided weakness.  It was too many negatives according to her facial response. I blurted (in my, “oh God here’s the anxiety proving I just f*cked up,” voice), “He wears a brace, is left handed and gets cranky easily.  Other than that he’s a super smart kid.”  And he is remarkably smart.  For instance, he’s been teaching himself how to read since last year and he’s really good at it.  His school’s play a huge role in that, of course, but it’s the way he picks up on it and how he distributes that information to expand his knowledge.  I can’t explain it any other way than that.  This does make it more frustrating, however, when his homework is to trace letters and he tries coloring in the letter lines instead of tracing them.  Like; you understand so much, kid, why are you being so thick skulled on this?

     At the end of the first week, it was suggested we consider getting him excused from gym and other physical activities due to his “physical hindrances.”  Whoa, whoa-ho-ho……

        Apparently, if your kid has “trouble keeping up with other kids” and your kid also wears a leg brace, that means you shouldn’t let him participate in P.E, with other kids, being physically active, and not looking at his affected leg as a disadvantage.  They want us to put our child on the sidelines, separate from his class, as an outsider.  They say it’s best for him because he falls a lot and he’s not as quick because of it.  I’m sorry but unless he’s getting more than bruises on his legs, he will not be sitting out on anything  because of his leg or brace.  I refuse, I  refuse, to sideline my kid because he’s not “quick enough” or “falls a lot.”  And why are they confused about the purpose of his brace?  They talk like the brace itself is the problem.  They don’t understand that it helps him keep up as much as he can, even if it’s not parallel to the rest of his class.

     There has to be a word besides disability to describe what this is.  He is not disabled, he can participate.  Only through participation will he, and his classmates, learn just how non-different he is.  I feel like making him sit out P.E would be equal to going to his class and telling his peers to treat my son like he’s “special” and on a different playground from them when he’s not.  He can climb a jungle gym, climb the stairs to a slide, and run and jump.  Maybe he won’t be successful at jump rope, but if he’s warming a bench while other kids are learning, and falling, and getting back up to try again, he will learn everything I don’t want him to learn and nothing he should.

     I realize his P.E class isn’t therapy but learning limitations is a part of life even without disability.  If he does learn he is too limited to do something with the other kids, then he needs to come to terms with that instead of hiding from it behind a doctors note.  He needs to learn to do what he can, learning to be as physical as possible regardless of limitations and his gym teacher needs to accommodate that rather than the limitation itself.

     If JJ was truly being hurt by working to participate with his class in gym or at recess then yes,  I would absolutely get him excused from them.  I feel, however, that looking at his brace after a couple falls and saying “you should excuse him from participating” is more damaging than failing to overcome a limitation.  What does this teach a child?  I am not known to be a fighter, I’ve quit and avoided many challenges throughout my life and that’s not brought me much positive results.  I have to teach my kids to do better than that; that success isn’t dependent on whether you win, but how hard you fought for the prize.  The acceptance of failure is the path to success; telling my kid to avoid challenges that will likely bring awareness to his physical restrictions is like tattooing a huge “Don’t even bother trying” motto to the inside of his skull so he never forgets not to try.

     I’d rather encourage my kid to run as if he’s not the only kid in class wearing a brace than pointing out to everyone it’s presence by using it as an excuse for him to sit out P.E.  I just don’t understand why a school would suggest I allow them to treat him as if he’s disabled when he’s not.  Maybe he does have a disability, but he’s not disabled; and I wish his school, and others, could learn this.

The important thing now is to ensure my child is not being treated differently

     I have to be the voice he needs to provide him with the ability to remain strong throughout these challenges which apparently include teachers trying to avoid facing his disability by discouraging interaction with it.

5 Years of Shields Down

     Earlier this week we celebrated JJ’s 5th birthday.  As I was typing out the annual “I’m so proud to be your mom and it all started here” Facebook birthday post, I realized how not-so-difficult my pregnancy was.  It was rough, absolutely, and he was at risk during most of the pregnancy but was he in any real danger?  Not really.  Did I lose any hope for that pregnancy? No.

    Despite the stroke, brain surgery / procedures, and relearning how to walk and dress, I really enjoyed my pregnancy; even though I was an emotional wreck, grieving, scared out of my mind and just overall unsure about everything. I didn’t know how strong I was or what I was capable of as a mother or person.  My character is actually pretty weak.  I’m a slacker and I’ve always lacked foresight. It’s really quite astounding that I’m here and functioning, given what was expected of me and how many of those expectations I’ve actually met.

     I met a woman once, a nurse who worked in triage.  I was there for a blinding migraine.  She asked about my affected side and brace.  Usually, when I quickly toss out that I had a stroke, the conversation goes one of two ways: they fall quiet and contemplate how to proceed, or they start asking questions right away.  I don’t expect anyone to tell me they had one too.  I also don’t expect to feel patronized by a nurse who walked out of her hospital room after a short period of time post-stroke.  We all recover at our own rates and the reason/s can be complicated when broken down into its many groups but it all boils down to one point:

No two injuries are the same.

     

     I believe I’ve said it before but just in case, I’ll say it again.  Recovering from stroke is a lot like being pregnant.  Going through the initial recovery process while pregnant magnifies the experience of both.  When a woman is pregnant, her brain is altered because of hormonal changes.  A stroke changes the chemical makeup of your brain (any brain injury does).  The emotional rollercoaster for each is unavoidable even if you’re fortunate enough to get put in a short line on the kiddie ride.

     For some, pregnancy/stroke recovery is a horrifying and dizzying experience; you just want off this ride but you’re stuck screaming for mom in terror the entire time.  

     And it doesn’t really matter who’s on the ride with you because you’re all experiencing it differently even if it seems similar on the outside.  Everyone has their own seat.  Everyone has a different view, a different vibration of the rails, and a different personality; each providing for a different attitude on this crazy ride.

     What does 5 years mean?

     So, 5 years ago I honestly thought I was handling my stroke recovery pretty well. I thought I had my “grieving period” while in inpat rehab.  I cried for days.  When my counsellor told me I was experiencing grief I felt like the center piece of my small puzzle was found. It made sense.  I felt so much loss but was surprisingly unaware of the emotion this loss is attached to.

   I did everything doctors told me to from therapy at home every night to not taking up cigarettes again.  I had two or three emotional breakdowns but I was moving towards independence every day.  I took showers alone, dressed myself most days , and eventually gained enough stable balance to lower myself onto a toilet.

     I had JJ mostly naturally.  By mostly naturally I mean: I had a lot of drugs before letting a baby wiggle himself through the birth canal.  I was not allowed to push because my brain injury was too fresh.  As a result I had what’s called a passive fetal descent, or delayed pushing.  I guess it’s a new thing that’s still being researched.  If you look it up, you’ll find a lot of “active vs. delayed” studies, brief highlights, and scholarly articles but not much on the actual process.  At least, not that I could ever find.

     My doctors battled over this decision and I was stuck in the middle.  My ob/gyn and my maternal fetal specialist couldn’t agree on how to handle my delivery.  I had no neurologist to provide insight so I resorted to good old-fashioned gut instinct.  I have no problems with c-sections when they’re necessary, it’s definitely not something to judge a mother for (I don’t understand the drama around this conversation at all), but I find them terrifying and am forever grateful that I have been fortunate enough to never experience one.  My gut said no to c-section and try this passive delivery thing.

So I did.

     And it was amazing.  There was a lot of drama in that room for a lot of reasons.  I don’t know how Kasper has forgiven me for what happened, I’m not sure he’s honest when he says he has either.  I’m still upset with MIL for being ignorantly selfish, yet again (which I’m sure is selfish of me to say), and I’ll forever harbor a bit of spite for everything that mom and Stilla pushed me to do.  When a woman is in the delivery room, she is not supposed to be the last person considered and neither is the father of the soon-to-be-born baby and yet that’s exactly what happened.

     Without my husband at my side, I gave birth in the most spectacular way.  I was full of fear and excitement, anger and joy.  I was a curious spectator at my own sons birth.  Words cannot express everything I felt as I sat with my legs up and apart, my eyes glued to the mirror in front of me with my eyes on my son’s crowning head as a nurse waited anxiously and nervously for him to make his way calmly into her hands.  I laughed uncontrollably at my nurse who kept screaming for the doctor to come.  The other nurses laughed at my laughter.  The harder I laughed, the further JJ moved out of me.  We made remarks on the queerness of it all just as el Jefe rounded the corner.  We all laughed at him (he was so stupidly late) and JJ plopped into his hands with laughter all around him, the loudest coming from me.

    I soon discovered that I was terribly limited as a mother.  This realization that I will never be the mommy I suddenly wanted to be struck me so intensely that…it’s a good thing I was still in shock from having a stroke in the first place.  I always had the expected concerns:  Will I be able to dress him, bathe him, change his diapers? What will feedings be like? But they never had weight to them before.

     I was only able to breastfeed two times and the nurse took him during the second feeding because I started to cry.   It was terrible.  I did not have a good nursing staff.  I felt belittled and constantly pushed around.  I had no one to teach me how to do this with not only one hand but with my other arm not cooperating.  The nurse kept putting her hands in my way.  I wasn’t bothered by her getting up on my boob but with the fact she wouldn’t let me try to get comfortable first.  It made me really apprehensive and tense which made everyone’s job, including JJ’s, unnecessarily difficult.

     I kept him in my room the first night until 3 or 4 a.m. with supervision.  I couldn’t let him go.  The night nurse sat with me as I held my little guy not realizing all of the struggles about to face me. It amazes me now how ignorant I was to all of it.

     Shock is an amazing thing.  It’s like a force field that repels every unwanted anything.  You see it coming towards you, you see people react to the way you deflect it without flinching as if you’re some magician and yet none of it registers until long afterwards.  I didn’t get why nurses “commended” me for being “strong” because I didn’t have a true understanding of the situation I was in.  My disability evaluations were odd to me at the time, especially the mental evaluation.  I attempted to shrug off the questions of anxiety and depression with quick explanations of the pregnancy.  I told them directly that I can’t tell what is stroke related and what isn’t.

I just know I have to do what doctors tell me because it’s best for my baby.

     And that’s how I made it through my pregnancy but it was merely shock that allowed me to survive it all, I think.   I didn’t have the option to give into fear more than I already had…until I had the baby.

And that’s what 5 years means

     I tried my best to be involved, to not let the stroke and resulting disabilities get at me but the harder I tried the worse everything got for me.  Having JJ meant I was now alone.  My support was gone, my shield was gone, my well of strength hadn’t just run dry but someone sealed over it.  I needed a new source.  It’s 5 years later and I still haven’t found a source as powerful as my pregnancy.  Everything I pinned on the pregnancy was just another aspect of the stroke I was protecting myself from.  I loved my pregnancy but everything around it was so absolutely miserable that I created a thick veil to shield us from it all. It didn’t register to anyone that the “strength” everyone saw was nothing but a mindless motion forward.

     Five years mean 5 years of a lifted veil, a worn down shield and exposed excuses.  It’s 5 years of living with the choice to accept what I cannot be and work hard every day to be everything I can be.  I fail a lot in many ways but I’m still here

And I made it to my baby’s fifth birthday, a day I  once feared he would spend without me.

To read a slightly more detailed post on my passive delivery experience, click here