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Being “supermom”

People look at my son, look at me, and say things like “I don’t know how you do it.” Or “god only gives us what we can handle” 

I know they mean well, what I’m thinking is:

First off, I didn’t know I had a choice, and second, bullshit. If there is “GOD“, then I want to climb to the Highest mountain and scream “FUCK YOU!” Holding up my middle finger at the sky because what the hell did I do to deserve this? And more importantly, What did my son do to deserve this? If “GOD” only gives us what”we can handle” then why do we hear about parents who kill their kids? Why do people kill themselves or kill other people? Why do we continually hear about mass shootings and disease wiping out people by the hundreds of thousands? God’s will? Why create only to destroy? The devil? Why doesn’t God protect us then?

But instead, I smile, shrug or laugh and crack a joke to ease the tension because they mean well. They really do. They don’t realize that we hear these things over and over again and I can feel my eye starting to twitch when I hear that pity in someone’s voice.

They think I’m special because I am my son’s mother. I’m not. I’m just a mom. Just because your kid has the flu, doesn’t mean you drive back to the hospital that you delivered your child at and demand a new one…On the contrary, it makes you care more. Makes you “MOM HARDER’. You get set into hyper parent mode and the maternal instincts are seething out of every pore so viciously, you swear you just felt your mammary glands let down and your boobs start to tingle. You care for your sick child and nurse them back to health… Only with autism, or any developmental disorder, that last part never comes. Things just get a little better. So instead of puking out of both ends, the kid still has explosive diarrhea and a lower grade fever. Or now they have an entirely new menu of symptoms and when you bring them to the doctor, they don’t know what to say… They are just as, if not even more, lost than you are.

So, you try a remedy you heard about, try diets, therapies, apps, different laundry detergent and dish soap… You just want your kid to get better and be healthy. You breath a sigh of relief because today the rash is clearing up or maybe the fever is gone, (s)he stopped coughing non-stop or finally has a solid bowel movement; only to have it ALL return after a week and your back to scrubbing vomit and shit out of the carpet and washing laundry non-stop.

Now imagine this is what life is now. An endless cycle of not knowing what is coming and your kid never seems to fully “recover”.

This is autism. There is no “recovery” you kinda get used to it… But you don’t.

Momming in hyper-mode for 9 years straight has left me with crippling anxiety and depression, left me feeling indifferent some days and others I’m feeling like my emotions are contained inside only a piece of wet tissue paper and soon as there is the slightest disturbance to that barrier, they come pouring out like a landslide that just cannot be stopped and I find myself and my partner are trying to catch it all with a tea cup.I’ve made compromise after compromise on things I thought I could/would (n)ever consider.

I’ve gone through phases where I would drink 1-2 bottles of wine almost every evening after putting my son to bed just to stop the trembling of my nerves trying to escape because I’ve been in flight or fight mode for the past 6 hrs because I have OCD and am fecal phobic and my son was going through a phase that he enjoyed smearing shit all over himself, walls, carpet and any other crevice he could cram his tiny fingers into and I screamed at him with tears in my eyes while I sobbed uncontrollably then spent the rest of the day feeling guilty, angry, resentful and just trying to clean the mess and make it up to him and just feeling more guilt along with the pain of chemical burns on my arms because I can’t stop cleaning. I needed something to ease this pain. 2 glasses in, I’m climbing into bed with him holding him while he’s sleeping and pushing me away then just stare at him while he sleeps and looks so peaceful with tears streaming down my face while I tilt my glass to my lips with one hand and wipe the tears and snot onto my sleeve with the other.

I’ve locked myself in the bathroom to eat a half eaten donut my son didn’t finish that I found in my purse.

I’ve spent days on the couch binging on Netflix or playing video games or in the garage painting every piece of furniture that we own and could carry out by myself while my son is at school.

I’ve gone days without eating, showering or talking to another person.

I’ve given my son benadryl after melatonin failed so I could have some time to sleep, regroup, and shower.

I’ve locked him in his bedroom with his iPad, books, toys and swing to keep from losing my shit while I’m trying to cook dinner or wash the dishes.

I’ve let him eat frozen go-gurts, pizza rolls, and bagels all day because I don’t have the energy to fight him to eat something healthy or just to cook anything in general.

I’ve tricked him into trying new things by disguising them as something else.

I’ve capitalized his fear of the hand mixer and blender to my advantage when I want him to stop screeching or doing something destructive or dangerous.

I’ve paid $40 for an app and $30 for a season of Yo Gabba Gabba just to keep my son busy and distracted so he isn’t dragging me to the refrigerator every 2 mins because his meds give him Stoner-ish Munchies.

With struggle comes wisdom and I’ve learned brilliant tricks to get a kid to take meds and get enough fruits and veggies, how to avoid having to change my kid’s sheets everyday, how to hide the taste of kale, how to find shit in carpet and how to get it out. I can find almost anything to help make just about any problem behavior a bit more tolerable.

The point I’m trying to make here, is nobody is prepared for this shit. I’m not special. I’m not stronger than most people. I love my son…. That is all. I love my child because I’m a mother. I’m HIS mother. Loving him is my job. Even if it is a hard job sometimes, it’s not a choice. We don’t get to pick and choose who we love. We don’t get to choose our children. Sure there are days that I clench my fists, bite my lip and think “what the hell was I thinking by having a kid? Why do people do this?” But on the other side of the same token lies the answer… Becoming a mother/father is the most important thing anyone can do for themselves. Because it’s as blissful as it is maddening. It’s as beautiful as it is disgusting and that unconditional love is powerful. That is “how we do it” it has nothing to do with strength or “GOD“… It’s just love for our kids. When people see me on the floor changing my 9 year old’s diaper, and say “how do you do that?” I don’t see a 9 year old. I see my baby. That’s the same ass I’ve been wiping since 2009. I breast fed him so the shit shooting up his back isn’t exactly a new thing… Anyone that loves their kid would do the same. Not ANYONE, but anyone that loves their kid. I have worked with children who’s parents abandoned them at a nursing home because of their disabilities and it was pretty heartbreaking. But then again, who am I to judge? Some people just don’t have it in them to care for someone that needs so much and I get that. I think it would take a different kind of strength to walk away, and that is just not the kind of strength I have.

What people see are the little things parents like us do for our kids that seem normal to us because (at least for parents like me that only had one child) we don’t know any different. We adapt for our kids and find ways to cope. Some healthier than others. We learn to laugh through tragedy, make jokes about the struggle, hell, sometimes we flip our kids the middle finger from the next room or just spend a good 15 mins just talking shit about them and making jokes at their expense when they aren’t around. We know as their parents, our love for them goes unrivaled but kids can be energy leeching, tiresome and annoying little shits. Any parent that says their child doesn’t piss them off is a filthy liar.

We just have to come up with ways to cope and creative ways to get through the day. If you have to take anti-depressants, write poetry, paint, use tinder, play video games or If having a couple glasses (or bottles) of wine at the end of a rough day is what you need to distract yourself to keep from driving your car off of a bridge, then by all means, do what ya gotta do. I feel like we should be allowed to be shitty parents sometimes. We should be allowed to have off-days. Like I said before, nobody is prepared for this shit. Furthermore, few people have any answers and nobody has a real”solution”. We just have to deal. Make the most of it. I take pride that my son can read, is adorable and is ultra affectionate. Has untapped musical talent, Is playful and has an infectious giggle. There are kids out there that are not on the spectrum that can’t or won’t do these things but my little guy is always smiling, singing and ready to cuddle and be tickled. Sure, if I ask him “how was school? What did you have for lunch? Whats your favorite color?” I will not get a response. He simply does not answer them. I’m not sure whether he can’t or won’t but That is fine because I have a stepdaughter that talks enough for the both of them.

Although… Yesterday he walked up to me and said bagel a few times so I gave him one. That was pretty exciting for me. As simple and small it may seem to parents of normally developing children, this is an equivalent to seeing your kid say their first word. Every. Damn. Time.

We autism parents have a full plate of too spicy, bland, or hard to chew food, and someone behind us demanding we have seconds. But when we get to the dessert, it seems to make up for all the trash we had to consume to get to that point. Make no mistake, the discomfort from having more we can handle is still there, The feeling of indigestion is still there, but we forget about it for a second and enjoy that sweet treat that we worked so hard for and it feels incredible because with that, a tiny bit of hope is restored. The future that seems like a pitch black never ending tunnel, looks a tiny bit brighter. I just hope one day, someone would hand my child a flashlight instead of a match. Until then, I will take what we can get and just white knuckle it until the end.

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Unexpected wisdom from a taxi driver. Part 1

I felt I needed to share this. This conversation I had with a taxi driver left me inspired, touched, amazed and heartbroken. Gave me hope, awareness and wisdom.

In about 30 mins, we spoke of religion, politics, race and culture. Basically everything “they” tell you not to talk about.

First, I noticed he had an accent. A familiar one, so I asked him where he was from, instead of making any assumptions but as I thought, he answered “Africa”. He was very kind and talkative. His accent wasn’t so heavy that I couldn’t understand what he was saying. He asked me where I was from, I answered that I grew up here in Minnesota, moved to Florida and came back to Minnesota after I had my son.

Everyone always looks at me like I’m crazy when I tell them I left beaches and palm trees and returned to the frozen tundra that Minnesota is for much of the year; and that was exactly what he asked next. I explained that my son has autism and that there is better care and services here than in Florida.

Then the topic moved onto autism. He spoke of his country. He said they don’t see that much over there. I took my medication because i felt my mind drifting and my eyes were locking, fixed on nothing in particular. and he asked if I was sick. I explained I have adhd and take meds to help manage it. He told me that when kids have Adhd in Africa, they don’t take medication, they put them in sports and activities but he had never seen the way people zone in and out like they do here. Adhd is different there.

He told me that he grew up in what is considered middle class over there. He attended university, their meals were provided but often, are what we would consider inadequate at best. He described one meal what they call “water sandwiches” in which they dunk bread in water because it is so stale and dry that it’s impossible to chew if they didn’t.

This is considered to be “well off”. I thought to myself, “shit. I have always had (for the most part) something to eat…we have no right to complain and I’m fucking lucky to have been born here.” Of course I replied politely careful not to sound braggy, but grateful, in which was how I was feeling.

Then, he told me about himself, with group of guys that are all from Africa, sponsor 20 children over there to take care of any medical expenses, food, and school. They send $1000 every month.

Think about that for a moment… He drives a taxi. He isn’t rolling in cash. He’s struggling just like the lot of us. Yet, he sacrifices probably close to half of his salary to children that otherwise aren’t given a chance at having a future.

To be continued…

July

Emotions run parallel as you speak of the past. I swiftly brush the dew from my cheeks, swallow the stone in my throat forget and hope the feeling won’t last.

I can’t help but wonder, whose hand you’d let loose, to plummet to boulders beneath, if ever faced with a situation to choose whom you’d pull to their feet.

Trying to understand, small things are easy to lose track But to me these small things are big things time passes and we can’t go back.

For everyday is someone’s birthday, death day, and anniversary. So it must silly to want one of those days just for me.

I can’t help but compare myself to another and can’t help but compete. I can’t do one without the other.

I can’t help but want to be more a lover or paramour when someone else was your wife then became a mother.

The scales are tipping but not in my favor. And I’ll keep on sipping because pain is my flavor.

The bittersweet taste nips at the tip of my tongue, I lick my lips and reminenice of the days we were young. Try not to dwell in the hell in my head, forget the fact I’ll never be wed. Shrug off the sting of 35, and that day that he forgot in July, but again, I say, I can’t help but compete, and still wonder who he would pull to their feet, I wonder if he ever forgot that day in April when life was with her was simple and stable.

I try not to cry over that day in July. When the only thing I wanted was the thing denied. Try not to weep because he doesn’t tell me “I love you” because it’s not what, but, how you speak and what you do.

I know it seems dramatic but that’s always been me, with a shot of cheap whiskey, and the need to compete.

I’ve never been good at finishing things they I’ve started but I can wet my lips until the sadness has been thwarted.

Just take a deep breath and swallow that stone and remember with him, I’m never alone.

Gifts are just gifts, unless it’s a life. And a bride is just a lover whom has been made a wife.

365

365 days have gone by since I heard the chime that brought you back into my life.  

I have never been so grateful to hear what was a mere annoyance before it was you that triggered the sound. 

I remember looking down at the screen seeing your mother’s picture in the tiny circle that displayed the number one in red.  

My heartbeat quickened, uncertain of what the response could be.  Nobody had heard from you, you’d deleted your facebook account, your wife no longer had pictures of you in hers but another man instead.  I had no idea what to expect.  The feeling of  but what should’ve been relief swept over me. Thinking something horrible had happened.  It had,  but not what i was thinking and hoping not be true.  I hesitated to open that message on fear of what it might say. I swallowed my glass of wine and released the glass from my grip as I lazily poured another glass splashing little droplets onto the table and used my oversized t-shirt to wipe off the glass and pressed it to my lips filling my mouth with the courage I needed to convince myself everything was okay and to open the message.  
It was from you.  You sent me your number in which I promptly texted.  My stomach was swimming with butterflies and my trembling hands were clumsily sweeping across the screen. Then you called. It had been ages since I had heard your voice. The butterflies multiplied.  You told me What I had found out from an old friend of ours,  you and your wife were now divorced.  Knowing you, I knew you would view this as a failure,  I knew you’d blame yourself, which was one reason I feared the worst.  

We arranged to meet the following day and I’ll never forget the feeling of instant relief when you greeted me by taking me in your arms.  I felt like a beaten soldier that had just returned home from war… and from then on, we were inseparable. When we weren’t physically together, we were in constant communication with each other.  We fell in love again instantly.  

If someone were to ask me 367 days ago if I’d end up with my first love after 20 years, the response would have been much different than the actual outcome. 

Everyday,  I’m so grateful for this second chance to be in your arms, feel you next to me as you sleep, to hear your voice say the sweetest things to me as you hold me tight and kiss me goodbye as you rush off to work. No matter what, you always say goodbye.  Tell me you’re so happy to be back in your life.  

I love you, Joel Mesaros.  I always have, and I always will. No matter what. 

role reversal

I don’t like to think that genders have roles but the fact of the matter is, they do. Socially, culturally…we fit into the slot the best we know how and live our lives as we feel comfortable. There are plenty of stereotypes that happen to be true… not for everyone, but often enough it is the reality.

I like to think of myself as progressive and open minded But I have expectations of myself that fall into what some people look at as outdated. I have a special needs child and because of this, I am a stay at home parent. I have expectations of myself. those expectations are to make sure the house is clean and safe, do the laundry and i do the cooking. Much of the time, I fail to keep up with these things because of superficial shit that 99% of us are guilty of. Facebook, E-mails, Pintrest…whatever. Social networking and the internet is a real problem for me as it is for most people.

I am in a great relationship. We both are damaged but for the most part, functional and productive. I hold these standards for myself. He does not hold the same standards for me as I do for myself but I’m used to being the “woman” in the sense that I should assume these responsibilities because I am in the home more often than he is. but because of this, I have inadvertently, subconsciously, developed expectations for him.

I’m used to men being sexually driven and being with one that is not, even though we had experienced one another long ago, is tiresome. I dont think its an attraction issue. I don’t think it has to do with skill or keeping things interesting. It’s just not a favorite thing to do for him. My memory sparks up and I remember, hes always been this way. I was his first and still, not his favorite thing to do. He enjoys the cuddling, talking, etc. Its the emotional intimacy that he loves. Don’t get me wrong…I LOVE that. Its great. but the thrill is gone when it comes to the passion, getting tangled in the sheets, pouring sweat, that thirst for one another that is animalistic. Unshakable. Now…it really doesn’t take much to “punch a hole in the raft” so to speak.I’m not innocent. I’m not always tactful. I speak before I think. I have no filter.

Sometimes I wish it were easier to flip it back on. I miss being thrown down and being devoured. I miss the beginning even though our relationship has grown so much. Maybe it was too soon for him. Maybe the wounds from his divorce haven’t healed… I love him anyway. I love all of him but I cant help but think that it has something to do with me.
Continue reading role reversal

Lucky girl

I’m just the luckiest girl in the world. My boyfriend watched my son overnight  so I could go hang out with my mom and sister, I have to get a procedure done and he texts me to say that he got the days off and approved by management within an hr or 2 of me telling him when it was scheduled, he buys me pickles every time he goes to the grocery store, he goes to all of my son’s IEP meetings, tells me I’m pretty everyday and never makes me feel badly for feeling upset or crying. I never feel like I can’t tell him if something is bothering me,  I can talk to him about anything, we sing System of a down together in the car, play guitar hero, I feel valued and appreciated and he makes me laugh. 

He’s smart, observant, intuitive, compassionate,  affectionate, loving,  witty, empathetic and perceptive.

He’s my best friend. 

Second chance

I am elated, blissful, light and giddy. My life has turned into a plot line from a Nicholas Sparks novel and I’m falling madly in love for the second time with my first love.  20 years had passed since we’d last laid eyes on one another and the moment we had, it was like o time had passed at all. But here we are, 20 years, one marriage, several failed relationships and 3 children later, smitten with one another, texting every waking moment while apart but together in every possible chance. They say you never love quite the same as you do with your first… This is true. I’ve never felt like this. I’ve never felt so alive and excited about waking up in the morning. Well,  Not since my freshman year in high school.

We’ve been inseparable for the last few weeks. We can both say “I love you” without hesitation and with complete confidence. It feels like I’m living a dream. I can’t focus, my mind is always drifting off to the man that has had my heart all of these years. Whenever I think of him, I’ll hear my phone ding and it a text from him saying he’s thinking of me. I never want to lose this feeling. I want to fly high on him forever.