A 3-Hour Nap

Just a quick shout-out to holidays that fall in the middle of the week. Thanks for making me feel like I’m going through Sunday all over again. The laziness. The dread of the following day of work. The one perk is that there are only TWO more days of work to follow this “Sunday.”

Husband and I took a 3-hour nap today. While awesome, I have a feeling I won’t be sleeping well tonight and that’s a bummer. I love sleep. LOVE IT.

On the up-side, I woke up feeling like I could sit down and write another 700 page novel. Like, in one afternoon. Instead, I added a page to this blog about the writing project *d* and I are working on. Check it out! Join in!  It’ll make ya feel gooood.

Not like that. Unless writing letters gets your motor running. Wait…that might be why I’m doing this…hmmmm.

At any rate, it’s a feel-good project about helping others feel good. What’s better than that?

~L~

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Critics Will Be Critics

Have you ever felt like no matter what you say or how you say it, there is that one person that will always find fault with you? Have you ever tried to please this person by asking how and why they are offended and try to change it? I have. The only thing I manage to do is make things worse. That one person usually ends up getting upset even further because the additional effort is viewed as offensive or I then looked like I was trying too hard. The truth is, there are people we can never do right by because they just don’t like us. Another truth, the more people we open up to means we are more vulnerable to these type of critics. If you want to test this, go to any article online and read the comment section. Find the most feel good story the Internet has to offer, scroll down to the comment section, and read feedback. Even the heart felt story about a little puppy who wandered away and was brought back home by the kind-hearted neighbors will be torn down by the critic who wanted to know how the irresponsible owners didn’t keep better track of their pet or why it took so long for the neighbors to bring back the puppy. There are people in this world that simply can’t be pleased.

When my friend and I decided to venture out into the blogging world, this was a natural concern of mine. In recent months, I have had to reconsider what and how I write, who I submit my work to, and what it is I want to accomplish with my writing. My primary focus recently has been the stories I have shared with The Mighty. There has been a flurry of negative feedback surrounding The Mighty in recent weeks. I submitted my first story to The Mighty in June of last year and since then I have had 14 stories published. I was shocked and proud to have my work shared on a bigger platform. Prior to these publications, I wrote only for myself. I didn’t write for an audience and I didn’t write to accomplish certain goals. After my first story was picked up, I continued to write as I had before; I thought could make a difference to others who could relate to my personal journey with disability or my journey as a special needs parent. I did begin to write more about my experiences as a special needs mom or an individual living with chronic illness because more of my stories were being picked up because I felt like I was making a difference.

In the last few weeks, some critics of The Mighty have used some poor tactics to drive their point home including plucking out and tearing down stories published by The Mighty by people like me. I have personally steered clear of these pages and care not to know of any attack of my own stories. I think the tactic is a poor way of demanding change. Change in my opinion is best served by open and honest dialog about concerns that effect numerous people. Change happens when disagreement comes and those from opposing parties can fight, but do so honorably. This is especially important when both or all sides are supposed to be working on the same goal: in this case tearing down the stigma of disability and disease. This current attack seems to separate members of the same team, further, attack people who are obviously already suffering.

I will make my statement clear, I write what I want because I believe in sharing my life, and yes, sometimes my life with my special needs child in an effort to help others. I read comments from people who think that parents like me share our lives with our special needs children to somehow promote ableism or write to make the masses feel better about themselves through our work through a tactic called “inspiration porn”. I can only speak for myself and I don’t know if my work falls into any of these examples, but I am simply writing about my own experiences and how they make me feel. I have no ulterior motives but the feeling that I am unwelcome to write as a special needs parent is hard to ignore.

Picking apart one article of one writer is a poor way to get to know that person and understand their experiences. I have a blog for this very reason. I have it because my life is full of unique experiences. They are spelled out throughout many posts that are sometimes written in a flurry of emotion or written calmly at the end of a day filled with inspiration. Yes, some stories are sad, exciting and sometimes just laughable. The bottom line is clear, they are my experiences and this is my life. I don’t write to please the masses, I can’t. It would be impossible for me to make everyone happy. At times, I’m not happy with even my own work but when I came across The Mighty a few months ago, I felt like my personal journeys could have a place in the bigger world. I felt like I could share even the messy, and nearly impossible parts of my life, and they could mean something. Maybe my struggles could serve a bigger purpose. Maybe the story I wrote about how I broke down while picking the kids up from school after a day of setbacks could help the mom browsing the internet with eyes swollen and red from tears feel like she isn’t the only one having a bad day. Maybe the person who just got back from the doctor’s office after hearing the severe pain they have been experiencing is caused by Rheumatoid Arthritis came across my personal journey with the same disease after typing Rheumatoid Arthritis into a search engine. Maybe most of my stories will sit on my blog and never get picked up by another website and never get read by another soul. It’s the most likely possibility and that’s okay with me.

I started a blog hoping it would help me deal with all that was going on in my life, and if someone happened to stumble across it and it helped them too, it would be an added bonus. I didn’t think any of my pieces were good enough to be shared by a bigger community but my first published piece has been shared over one hundred thousand times. That’s pretty amazing! It’s an honest piece about the feelings I have had as a special needs parent. Some may want to say I am complaining about being a parent to a child with numerous challenges and maybe they are right, but I also know how very blessed I am to have the opportunity to raise him. Reading more of my journey would make this point very clear.

It’s through our unique journey that I learn more about the type of person I need to be and how my son’s life has impacted mine in so many different ways. People may disagree when I write about how my son inspires my life, or they may say I shouldn’t use his life to inspire others. I write about his life, he just happens to be an amazing young man that deals with extraordinary circumstances. Someday I will read him every last word. He may not understand it and he may never be able to articulate his own journey, but I will continue. Why? Like any parent, I want to give my child all I think he deserves. If I write about my son’s journey and how it has effected him, maybe I can draw awareness to his disease, Tuberous Sclerosis Complex. No one will know of the disease or how it effects someone in real life if no one talks about it. I’m talking about it!!! I am sharing how it effects a real little boy who has real feelings, who experiences real hardships at the hands of his disease, and needs a real cure!

So, critics will be critics. I have read some honest feedback from the critics of The Mighty and I have made some decisions about my writing based on those who are like my son and grew up with disabilities. I appreciate helpful feedback, but not feedback that hurts the entire community. Not everyone is going to like me or like my work, that’s okay, I don’t like everything I read either. The Mighty may not be for everyone but I have no doubt the founder has good intentions. I hope those who have legitimate concerns continue to voice those concerns in a constructive manner and will stop trying to take down the entire mission of the site. The Mighty is on new territory and it can be a great place to connect with people who will help us all feel like we are not alone when dealing with the difficulty of this life. I guarantee every contributor already has difficulty and putting their stories out there for further scrutiny is hard. I barely have time to write, I have a full plate but you can be sure that my intentions are good. If all I leave in this world are a few stories about my life with my own illnesses and the life of my little boy struggling with his, it’s well worth it when I read that one comment that says, “Thank you!” In that one moment when that reader no longer felt lost, it became worth it. I know what it’s like to feel lost and afraid, several times over. I had never heard of Tuberous Sclerosis Complex and I would have done anything to connect with someone who understood our pain the moment we heard our little boy had that disease. I am still fighting to understand Rheumatoid Arthritis and how debilitating the disease really is. It helps me to connect with another person who found treatment when they too were feeling as hopeless as I do because they too were watching their body waste away at the hands of the disease. I am leaving what I am searching for, giving what I take…. and I won’t stop… I have a voice, I am going to continue to use it, and yes, I feel mighty!

*d*

The Princess Says, “Let Go!”

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Tonight I sat on my porch as storms rolled in and somehow I felt youthful. Maybe it was because I sat barefoot on my porch swing or more so that I was able to sit alone and undisturbed. The absence of little ones vying for my attention or a to-do list felt freeing, if just for a few minutes. It made me miss the days when I would drive to my favorite nature preserve and write in my journal. I was alone and free to use my time for more creative tasks. I would walk to a nice spot, sit with my journal and spend an hour spilling out my thoughts on paper. I miss everything about that sentence. I can’t walk without pain or write very long without discomfort. It’s rather sad for me to think about how much has changed in such a short period of time. It seems like a lifetime between now and then, but in reality it has only been a few short years. I wonder, why did my body decide to start attacking itself? I keep hoping it will stop and this pain can also become part of my past.

Tonight I told my husband that I might have been okay with my diagnoses if they would have come several years down the road and not when I have small children. I have a doctor’s appointment tomorrow and I’m not thinking about what I will be asking the doctor. Instead, I am thinking about how hard it will be to lift my infant daughter in to and out of her car seat several times, shuffling all four kids between a sitter and home, walking a distance to my doctor’s office, and I wonder after all is done, will I have the strength to make it through the rest of the day. I don’t have the option of calling in sick as a mom, I have to keep going, even when my body doesn’t want to go. My husband recently asked me, “If you knew you would have all this pain before we had kids, would you have had four?”

I replied, “I wouldn’t change a thing.”

Isn’t it funny how difficulty often makes us think of hypothetical situations? “If I only knew…..” or “Hindsight is 20/20.” Sure it is but does it matter? Does it help for me to play out future events and allow myself to stress about events that haven’t even occurred? The only thing that can change is now and if I can’t change the past or circumstances that will happen in my future, what am I doing to myself? I must be assembling my own nightmare.

While writing this piece, my daughter called out from her bed, “Mommy! Mommy!” It was difficult to get out of bed and down the hall to her. The RA hurts my joints and the Fibromyalgia hurts the rest. I hobbled down the hall, my head fresh with thoughts of my days sitting in the park and the free feeling I experienced earlier today. She was sitting up in bed and waiting for me. Getting out of my bed was what she anticipated and she expects mommy to come when she calls so I can’t disappoint her just because my body hurts. I sat down on her bed and asked her if she had a bad dream which indeed she had. I kissed her head and started a new dream for her to have, one with a pretty pink princess that dashes away on a pony with a pink mane because pink is my daughter’s favorite color as well as mine. This princess was free of whatever may have caused the bad dream and ready for my daughter to lay down her head and take her on her next big adventure. I was all she needed to forget her nightmare. I underestimated what I can do as a mom and as she closed her eyes, I realized that I didn’t want to be the woman I once was. I too have set off on another adventure and I must redefine my next dream.

I am a mom, a wife, and I am still a writer. I am not famous but I have the privilege of being an author and character in the lives of my children. How lucky am I. Dwelling on the past and worrying about tomorrow robs me of being fully present to write my own future. Yes, it may physically hurt, but it will be beautiful.

~d~

Task Away!!!!!!!!

Newton’s second law of motion as defined by my handy Google search states that the acceleration of an object is dependent on two variables: the net force acting upon the object and the mass of the object. I love facts and I love Google.

Today a great deal of information is right at our fingertips. For me, it is right on my smartphone. The only Internet access we have is through our cell phone carrier. Because my phone and internet is so handy, I am shamelessly addicted to reading articles, Google-ing questions (and of course useless movie info), checking social media statuses, and fantasizing about my house looking like photos on various home improvement sights. Unfortunately, it is hard to draw the line where fact ends and fantasy begins.  Is the internet “information” I am filling my head with really useful? What am I doing mentally to promote a healthy movement forward? What does this have to do with me writing a blog?

Well, I often wonder why I am so excited about writing and less than enthusiastic about reading a book. I know to grow as a writer I must expose myself to various writing techniques, points of view, and genres but instead, I find myself filling up on all the tidbits the Internet has to offer.  I often remind myself that I should finish any one of the many books I have been working on for months, so I pick one up and once again become distracted. What is wrong with me? Why can’t my mind sit still? I have asked myself these questions quite a bit in the last three months. I know I have been distracted by my own health problems. I have taken a break to allow myself time to accept and rebuild my life with the knowledge of my own illnesses. It was also nearly impossible for me to keep a straight thought after being injected with steroids for my RA several times in the last few months (making me feel less like the Hulk and more like the Joker), the last round ending an ambulance ride for an allergic reaction. I also admit that I like instant gratification. I don’t want to wait for a story to end, I want to know what happens NOW! What if I have another severe allergic reaction and die before I know how the story ends? I know that is why I don’t get hooked on mini-series or television programs, I hate cliff-hangers! It doesn’t mean that I have never finished a book or indulged in a favorite program, it just means that I have acquired a taste for the get-it-now lifestyle this world is becoming accustomed to experiencing. Lastly, I have made it my life’s purpose to attempt to perfect the art of multitasking. I once heard (or probably read some short article) about how to multitask efficiently. It probably declared, “Find something to do when you are between doing another something! Don’t sit idle when there is something else to do!!” This is why I struggle finishing any of the ten tasks I start because I go from one to the other without finishing what I started in the first place! I know how my brain works. If I think of something, I probably should take care of whatever it is, or I will forget. So I start one thing, remember another, then another, and keep building until my brain melts. ~Sigh~ I have gotten better at my multitasking lifestyle; my house is very clean for a large family but my purse isn’t. My laundry is washed and folded as it comes out of the dryer but often doesn’t make its way upstairs before the next laundry day comes around. I have a list of planned meals on my fridge but often eat out because I am too tired to prepare a meal after a long day and swollen joints. In short, I am my own roadblock. How can I possibly move forward when I am sabotaging myself by just being myself? According to Newton’s law, I’m screwed! Anytime I get determination behind my actions, I can’t get moving! I don’t have the strength (literally or figuratively)!
Forward motion takes strength. I have to have muscle behind my words and actions.

By many accounts, I am a strong person but the variables beyond my control have taken the muscle out of my plans. My body got weak and so I got weak. I stopped moving. Who knows how long it will take to adjust to my life without my usual might but at least I understand my weaknesses and this post is one step forward. Isn’t that what’s important? Keep moving forward, even when it’s hard. For me, it’s picking up a book and finishing it, even if it takes all year, organizing my purse or cooking a meal. It’s also taking what I love and using it to my advantage, like searching for Newton’s Laws of Physics and using that information in my next post. I many not have the muscle I used to but I do have creativity!

~d~

Filling In The Blank

It feels like the harder I try to figure out what my next move should be, the more entrenched in confusion and frustration I become. Do I keep cleaning houses and writing, working to get published, or do I throw myself into a small business venture, expanding and promoting my cleaning services and give up some of my writing time, or do I get an unrelated job and put the writing on a back burner, or…

I have this vision of where I want to be, but it’s like I’m looking at it from across a bottomless chasm; I’m on one side and my dream life is on the other. The most frustrating part is that I could build a bridge but I don’t have the materials or tools, my education seemingly a hammer made of cardboard, a nail gun spitting marshmallows. So, I stand there, looking down, kicking pebbles over the edge and getting more and more pissed at myself.

I remember a particular crossroad of the past that was annoyingly similar to the one I stand at today. When I was growing up, I didn’t have a clue what I wanted to be. Looking back now, I don’t recall ever telling anyone “I want to be a _________ when I grow up.” It could be all that Candy Crush I’ve played, or the numerous drowse-inducing pills I take, but I seriously don’t remember aspiring to be anything. When I got to high school and it was expected that I figure out what I would make out my life and study at college, I scrambled to come up with something to placate my guidance counselor, my friends, my family. I’d always loved Science, particularly Biology and Anatomy as well as animals. I’d also always thought I might like a surplus of money, so I opted to study Biology and then move on to a veterinary program. It made sense to my logical side, to the bookish girl graduating sixth in her class, to my pushy guidance counselor. But when it came time to apply, I balked. I’ve always blamed the severe clinical depression I experienced my senior year, but maybe it was more than that keeping me from wanting to run off to college the fall after high school ended. Maybe I realized that wasn’t where my passion lay.

If I had been paying attention, my path was more obvious than dumping that ridiculous boy I dated when I was sixteen who wore his two inches of hair slicked and pulled back into a tiny ponytail and told me his uncle was in the Chicago Mafia. As long as I could, I’d been writing. As a child, I wrote stories on wide ruled loose leaf, tying the pages together with yarn and doing my own illustrations. I read the classics—and loved them. I memorized Robert Frost’s “Nothing Gold Can Stay” when I read it in The Outsiders. I’ve always been the person my friends ask to proofread their papers. I was asked to join the Quiz Bowl Team in eighth grade because of my affinity for literature. I spent the summer between seventh and eighth grade in my room writing a novel length piece I eventually reread and ended up scrapping. The signs were always there as to what was in my heart.

I went to college two years later than most of my classmates and I began a Bio degree, still refusing to acknowledge the obvious. I was about a year and a half into school and taking a Genetics class I was figuring on failing. That subject had been my weak spot in high school as well. I was thinking a lot about the choices I’d made. The same time I was starting college, I was moving out for the first time. I was working part time and studying some of the most difficult information I’d ever read. In lab, I had to mingle with my fellow Bio majors, Chemistry, Anatomy, and various other science majors.

We were doing a lab that involved fingerprinting and my lab partner couldn’t get her prints to be anything but smudges. I may have made a joke that insinuated that she’d rubbed her prints off with excessive biblical-ish knowledge of the male nether region. She may have given me the nastiest look anyone’s ever shot my direction.

At any rate, I realized I didn’t fit in with these doctors-in-the-making. It was that feeling coupled with my sinking grade in Genetics that pushed me to make a change.

After years of thinking that my writing was just for fun, I decided to make it my life. It wasn’t an easy decision. I knew I would be forfeiting my employability, mostly because I had no intentions of pursuing a career in teaching. That had to be the first question anyone would ask me after they learned that I was an English major. The. Same. Question. Every. Time.

“So, you’re going to be a teacher?” they’d ask.

“No. I’m going to write books. Maybe work for a publisher. You know?” I’d reply.

And no, they didn’t know. And apparently, neither did I. While I did write a book, the chance to work for a publisher sailed away when I decided to stay in my recession-battered state, in a county where opportunities go to die. I have stayed because my family needs me and I’ve always seen this as my home. Also, I used to think I could never leave because of the friendships I’d forged over a lifetime. Not anymore. Amidst the self-discovery involved in pursuing this fire burning in my core, I’ve also come to understand that support is hard to come by. Writing is a career of a different color in that you can’t excel at it on your own. Well, most of us can’t. We rely on the knowledge of others and their opinions to make us better. In the beginning stage it’s family and friends and later it becomes agents, publishers, and editors. It’s hard to get to that later stage when you’ve been let down in the beginning.

So, my current crossroad is not only whether I stay and clean or stay and write but whether I stay at all. The opportunity exists to go anywhere. My husband is in a high demand occupation and it wouldn’t be difficult for him to land something he loves virtually anywhere. The fear of leaving behind everything I know is fading with every frustrating day. I’m to the point where loading up my grandma and my mom like The Beverly Hillbillies is not completely beyond the realm of possibility. At least then I’d be making a choice. With that choice, I’d finally have the opportunity to construct my bridge and get over that canyon that lies between me and what fills my dreams.

~L~

Open Doors and Benadryl

There are days I think I have this all figured out and I know what I’m supposed to do, what I’m supposed to be when I grow up. Then there are days like today, and days like last Friday that tell me I’m completely wrong about having a clue.
The new year is a fresh start for a lot of people. Not me. I spend all year scrutinizing my choices, making resolutions I never keep, feeling like I need to make my life better. The new year is just more of the same. There is no discernible difference in my anxiety levels, my drive or lack thereof, in say, June compared to December and the beginning of January. It’s all the same. One chaotic “What the hell am I gonna do?”
Very recently, I considered taking my cleaning job and making it my “real” job. What I mean by that is promoting my cleaning service and treating it like a small business instead of a side job while I work on my writing. I’ve been looking for a full-time job or a decent paying part-time gig, so I’m in the market to work more than I currently am but I’m not having much luck landing an interview, let alone a job. I’m good at the cleaning thing and I have no doubt that if I really threw myself into building a business around it, I could get enough jobs to pay the bills and then some. Then I think about the downsides.
Though I excel at pleasing my current clients with excellent customer service and perfection driven cleanliness, the work is hard. It’s downright exhausting in some cases. I still want to write in my free time and I’m afraid that if I take on several more jobs, I’ll be too tired. Not like now—how I’m always so wide awake. *YAAAAAAAWN*
Then there’s the reality that I try to ignore and that’s that I have terrible allergies to pretty much everything that a cleaning job has to offer: dust and pet dander. And though it’s not an allergy, I have sensitivity to strong cleaners, probably because my sinuses are already inflamed and downright pissed off at me just from everyday breathing. I suffer through every day and most of my jobs aren’t very sneeze inducing, at least not anymore. I have the dust under control in almost every case. It’s that one case where there is absolutely NOTHING I can do to keep the dust at bay that makes me reconsider my business venture. I assure you that it’s not just the dust.
Today, I almost saw the junk of the son of my ultra-dusty client. I’d gone around and poured BLUE toilet bowl cleaner into all four toilets and let it sit. After some time, I began to clean them. When I got back to the son’s toilet, he was standing there, peeing, looking out the window, with the door open.
“Oh, Geez!” I said, turning quickly back the way I’d come. “Sorry ‘bout that.”
Later, in the kitchen, he said, “Sorry. I forgot you were here today.”
I assured him it was fine and really it was. I didn’t actually get a glimpse of anything. I also understood that with the holiday, he could’ve easily forgotten what day it was. I felt like it was Saturday all day today, when in fact, it’s definitely Friday. I can only assume that he didn’t look into the toilet bowl to aim and see the blue cleaner, put two and two together, and realize I was there. Or perhaps he was too tired to notice.
This near eyeful isn’t really the issue. Beyond the uncontrollable dust, the job is very physically taxing as I clean at a breakneck speed for four hours just so I’m not cheating myself out of money. I finished almost a half hour late today because everyone was home and my routine was knocked off kilter. That’s time I won’t be paid for. On top of never actually finishing in the agreed upon four hours, it’s not really worth the 30 minute drive or the level of cleaning I have to do every week. The amount of work I put into this job is the same as I devote to my monthly jobs that take from four to six hours. Last week, after spending a full 8 hours there helping to prepare for a holiday family visit, I left with a sore throat, cough, and a splotchy rash down my neck, not to mention, a gargle-worthy amount of phlegm. I took two Benadryl and went to bed pretty early that night. These are the things that make me consider that my future might not be in the cleaning industry.
I can’t load myself down with exhausting jobs if I want to be able to pursue writing at the same time. I also can’t do a job that literally makes me sick. I feel like signing up for more jobs potentially like this one could be bad for my health. Getting a sinus infection every month because I expose myself to what I know is bad for me, well, that’s just crazy. What’s really disappointing is that I know I’d be good at it. I know I’d make a name for myself cleaning.
Such is the internal battle waging as of late. If it’s not this, it’ll be something else. There is no peace in my mind. I suppose that’s one significant reason why I write. That, and it doesn’t make me sneeze.

~L~