Author: crossroadtrippers

What Special Needs Parents Want You to Know

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It is often hard for a special needs parent to be honest. We are trying everyday to be strong for our children and those around us. Whether you are close to a special needs family or not, here are a few things a special needs parent would like you to know.

We feel alone.
Isolation for special needs parents is real. When things get difficult, many “friends” disappear because they say the situation is “too hard to watch.” As nice as this sounds, we know we are being “politely” avoided and thus, removed from the lives of these so-called friends.
Special needs parents are also in unique situations. We know others will not intimately know the details of our child’s diagnosis or abilities and this can lead to feelings of isolation. This is exaggerated by other’s unwillingness to learn the basics of the situation.
We need true friends who are willing to stick by us.

We feel left out.
We appreciate hearing about your fun over-night stay or the family vacation but those dreams have quickly faded for us. Don’t mistake our lack of outings with the lack of desire to have them.  Sometimes it is difficult to ask for help. We find ourselves looked over because it is often assumed that we “have too much on our plate.” Let us decide what is too much for us. We are still capable and have the desire to help others, go out with friends, or be included in events/outings.

Money is always an issue.
It is rare to find a special needs family that does not struggle to pay for the rotating door of medical expenses and/or special equipment that is sometimes needed. Neither is cheap and getting assistance can be difficult.

We take your opinions into consideration but we know best.
Real solutions come when time and effort go into a problem. We have logged in plenty of both so sometimes keep the opinions to a minimum and just offer a helping hand.

Teach your children tolerance.
Some special needs individuals do not have the ability to demand tolerance but their loved ones will. If your child teases or bullies our children, expect to hear from us. We are used to fighting for our children and most of us will not hesitate to speak up.

Do not assume our child will “grow out of it” so stop asking.
This is by far the most annoying question special needs parents are asked. We heard this question by nearly everyone when our son was  diagnosed. These well meaning people would ask and seemed to wait tentatively for validation . For them to be okay with the diagnosis, it has to be short-term? No matter the term of the diagnosis, families are dealing with the here and now.

We are upset when you are intolerant of our children, especially for a short period of time.

We are tired.
A great deal of diagnoses carry the fine print of sleep deprivation. Be considerate when discussing your poor night of sleep. Many special needs parents are on years of sleep deprivation. As a result we are often feeling the physical and mental repercussions.

We don’t have all the answers.
We are still learning and every day brings new challenges. We research and ask as many questions as we can but usually a new question follows a solution. Be patient with us, most of us are doing the best we can.

Stop pointing out the negative.
We are well aware of our child’s short-comings. We don’t appreciate pointing out our child’s faults any more than a typical parent.

We need support.
We may not always say it, be we need it. If it sounds like we may need help, we probably do.

Offer to “do the hard work.”
These tasks may require you to feel uncomfortable or lose sleep but these are the things we will not soon forget.

Help us get away.
Most of us live in a constant state of chaos. No one can withstand this type of existence without feeling a little frayed. Stepping in for any amount of time makes a world of difference.

We notice when you stop asking about our children.
Our children may not be on the honor roll or in sports like typical kids but they still have accomplishments. Acknowledge the effort these kids make to do what most typical children take for granted. I guarantee they have worked on these tasks for a very long time.

We need to vent.
We love and are thankful for the opportunity to raise these special children but it is a stressful job. It can be “depressing” for you to hear but this is our reality and we can’t escape it. Please allow us a place to talk honestly and unload. And we want to do the same for you.

Going out in public is hard.
We are on guard in public places. We are aware of whispers and stares. We also know we have the right to public space. Most of us take others into consideration when situations become difficult, please do the same.

Please do not make us feel guilty about our child’s behavioral issues and DO NOT say, “He was good for me until you walked in the door.” Parents are a safe place for kids to fall so it is not atypical for a child to misbehave around parents and caregivers.

Special needs parenting changes the heart and mind. These parents can be the most empathic and patient people you will encounter. They often face a great deal of difficulty with a smile but they are hurting somewhere inside. There is a real struggle for these parents. The guilt of not knowing or doing enough is constant. They often feel like things will never get better and yearn for friendships that will withstand. Most only wish to change the world for the better of their children. We want others to see the true gift of the special needs child.

*d*

Granny

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In response to the post “Grandmas,” *d* is right. We’re both very lucky to have the love and influence of such wonderful women in our lives.

For me, my grandmother, or Granny, is all the more special because she raised me. I lived with her from second grade until I was 20. To me, she’s always played a dual role of mom and grandma. Not that my mom isn’t around. That’s a complex story for another blog.

I realize how lucky I am to have grown up with Granny. She worked at a restaurant for 25 years, eventually earning a place in management, but we never had a lot. We always had enough, but nothing over-the-top. I know if I’d asked for something, she’d have done her best to get it for me because that’s the kind of lady she is. But I rarely asked. Even back then I was content to wear my clothes from Goodwill and Kmart and never expected an overpriced sweatshirt from Aeropostale or American Eagle, or Nike shoes and Levi jeans. I was happy with what I had.

While I didn’t recognize it at the time, I can look back and see just how special and valuable her guidance was. She and my grandfather had divorced before I was born and he died around the time that I was a toddler. She never had another man in her life after her marriage to him ended. She was content with her own company. She owned her home and worked hard to pay the bills and take care of me, all the while, squirreling away money.

I learned from her a simpler way to live. To be good to other people. To appreciate my family, as broken and scattered as it is.

I’d like to say that I followed exactly in her footsteps, but I am my mother’s daughter and my daddy issues coupled with a stubborn wild streak ensured that I would make my own path strewn with men and debt and heartache. I still live simply and prefer shopping at thrift and dollar stores to the big department stores. I respect my elders and have an innate desire to help others. I’m grateful to be the person I am and even more grateful to Granny for giving me such a strong example to follow.

As an adult, I find myself wanting more for myself than I did as a kid. I’ve been in the workforce for 17 years and I know what money can do. I still could care less about name brand clothes. I’m dreaming bigger. I want to fix up the house we’re in now, sell it, and buy something bigger, in the country. This has probably always been a goal for me but now, as Granny ages and keeping her in her house trailer has become increasingly difficult, I have an additional objective. I want someplace big enough where I can have Granny live with us. I know she doesn’t want to give up her independence but if we can obtain a place big enough that none of us are uncomfortable, that might help her relinquish living alone. I want her where I know she’s safe, where I know she’s fed, and where I can enjoy her company. Maybe that’s selfish. I don’t know.

That dream is why I keep trying. Despite pitfall after pitfall, and often debilitating depression, I’ve never given up that dream. It’s that dot on the horizon I keep moving toward, doing everything I know how to do to bring it closer and into focus.

Grandmas

~ crossroadtrippers ~ 1 Comment

*My friend and I have a deep love and appreciation for our grandmothers. Here is my contribution to jointly acknowledge these lovely women.*

Dear Grandma:

Your life is a story of subtle grace. This is a rare quality and one I someday hope to acquire. I am afraid I will never achieve the grace and wisdom I have found in you.

You have fought many battles with quiet faith. When my life feels like it is out of control, I remind myself of how you patiently handled each difficulty with a humble spirit. You didn’t complain about the injustice you were handed but remained thankful for the blessings of each experience. It is uncommon to know one who speaks not of her own pain but asks how to heal another. In a world full of people who ask to put their own needs before all others, you gladly set aside your own. You exemplified this by giving your all to those around you. You gave freely of your possessions, home and especially your love.

When I need to be reminded of kindness left in the world, I recall your life in opposition to the negativity. You try to see the purpose in the worst of things but when there is no obvious reason, you have faith that someday you will grasp what you do not understand. As a little girl, I watched you quietly kneel beside your bed in evening prayer and recently listened to your prayer the night grandpa died, thankful for your many years of marriage. You have given me lifetime of examples of faith.

As I age, I grow a deeper appreciation of you and regret that this appreciation wasn’t sooner realized. Maybe then I could have taken time to talk a little longer, consume your wisdom and further enrich my life just by being a part of yours. You are older than I remember in my childhood but you are not forgotten. You are just as beautiful and a true treasure in my life. You allowed me to grow in my own time and navigate my mistakes even when you had the wisdom to correct me. You gently guided me and encouraged the best decision but always offered a hand when I faltered.

Thank you Grandma, for living by example. I will continue to follow in your footsteps but I know I will always remain small in your shadow.

Love,

*d*

Open Doors and Benadryl

~ crossroadtrippers ~ 2 Comments

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~

Wrapped in Rust

~ crossroadtrippers ~ 1 Comment

In four hours I will hear the familiar rumble of his work car driving through the alleyway and to his parking spot. My husband drives a car given to us by my late grandfather. We inherited what my grandfather referred to as “the sweetheart of the highway.” She is over twenty five years old and past her prime. The cloth headliner is falling down and frayed, the paint is fading, it has crank windows, my husband gets only a.m. radio, and I am pretty certain the heater only reaches luke-warm. It has been vandalized twice (egged and spray pained orange) and the backside of many jokes, but it is paid off. I have asked him to consider purchasing another vehicle once we receive our tax return and pay off our van. I worry because the gas gage plays hopscotch between E and F and we never really know how much gas is in the tank.  The only thing new on the “sweetheart” is her tires. My husband reminds me of how much money we will have once the van is paid in full and how much debt we are still trying to reduce. So he may be driving her for the next twenty five years.

I imagine my husband has been taught to see the value in something when no one else does or he knows we have no choice but to keep it. I know how hard we struggle. Each month it gets harder to pay bills and have enough remaining to purchase groceries. We both have decided to make the necessary sacrifices that allow me to stay home with the children. My son’s medical condition is multifaceted and complex. When we discussed if I should re-enter the workforce, choosing care for him would not be as easy. A caregiver would have to be trained in rescue techniques and medication. After weighing the cost of daycare for multiple children and working, we wouldn’t be making enough to sacrifice our peace of mind.

I did work part-time every weekend for five years. I really enjoyed my job but my son’s health was failing and we both knew it was time for me to care for him permanently. He has since stabilized but spending the past two years at home has been lonely. I know I contribute to our household by caring for the family but brining home a paycheck gave me a sense of accomplishment. I also had a place to socialize and  the opportunity to feel like more than just “Mom.” I had a name and I had a life. Being a parent to a special needs child is lonely. Rarely does anyone care to understand what life is really like for us. We seldomly go out and rarely get asked to do so. Babysitters, like caregivers, are also hard to find.  In addition, we are always tired. I haven’t slept for more than four straight hours in over seven years. The deprivation plays with your head and the loneliness gets to your heart.

I spend a lot of time at home. I miss having an escape from dirty diapers, screaming, autistic meltdowns, and noise. I miss conversations with people my own age. I could make plans after work or do some shopping on the way home. Sometimes when I talk about my situation, others will say, “Don’t forget to make time for yourself.” That is a nice thought but a more productive approach would be to ask, “How can I help?” But with the isolation of my existance comes  infrequent conversations.

So I wait. I wait for my husband in his little white “sweetheart.” I anticipate her rumbling up the alley and a breath of relief escapes from my mouth. I wait for his conversations. I wait for his guidance. I wait for his help. At that moment my lonliness fades away.

It’s funny to think my hero, the Prince Charming of my girlhood dreams, comes calling in a rusty old piece of machinery. He cares not of the eloquence of his arrival but about what he does once he is here. He fills in the empty parts of my heart and the loneliness of my day. He understands when I greet him at the door with my tousled hair and can still imagine what I looked like when I readied myself that morning. He doesn’t worry when I cry about the life I feel like I have left behind. He listens and asks, “What can I do to help?”

My son, like my husband is wrapped in a rough package. My husband would certainly not get a second glance in his run-down stallion. My son sometimes gets a second look, but often for his differences. He is wrapped in a disease that often covers the treasure he is inside. It is nice to know that those with true character often hide it inside.

*d*

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Year End Reflections

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I married him in the late of summer. He didn’t want to see his bride in sleeveless so I wore a long sleeved white dress in the hot of day. My hair was down, sweltering on my neck. It couldn’t be put up, it wouldn’t have been suitable for him. All the details of that day were as he desired. The floral arrangements, the bridal band, and bridesmaids’ dresses were all in his favorite color. My special color was too feminine for his special day.  Everything was suited for a day as he dreamed and we set off for a honeymoon as he always imagined.

This was the first day of the rest of his life. It was the  first day ending my independent life. There was no longer a “me” but an us where he decided what was best for the two of us. I was there that day. I stood before the closed sanctuary doors sick with fear. I recalled the day he proposed. I wanted to run then and I wanted to run at that moment. I thought I was in too deep but I was expected to consider his feelings first in all things.

I was expected to relinquish myself and become his wife. In that moment, on that day, I inherited the responsibilities of a wife. I was solely responsible for cleaning, laundry, and meal preparation while remaining physically pleasing and readily available to him. There was no fair turn in the marriage as my attire was rebuked down to my undergarments while he slowly allowed himself a great deal of comfort with his hygiene and appearance. The small requests continued until larger uncomfortable desires were expected to be met with silent submission. After several years I no longer thought about what I wanted, I just did as he asked. My hair was to a length he preferred, my eyebrows were favored at an appropriate width, and money was never at my disposal. He refused to part with the mutual earnings to allow spending that would not  be a benefit to him. I worked full time but found myself in tears when making the agonizing choice to purchase much needed items, even if it were for my career. I was also not allowed the security of a cell phone after accepting a job forty miles from home. When my salary met his own, my position was downplayed as subjacent to his own.

I was not perfect but I don’t believe he thought what he was doing was wrong. We both had flaws. I was immature and I had a temper. When my requests to talk about marital issues were met with complete silence, I would blow up in frustration. For him, the only problems with our marriage were the issues I refused to drop. The bad fights started with requests to put down the toilet seat, brushing teeth before bed, or my desire to include my family and friends in my life. For me, marriage became about isolation, unresolved issues and silence. He thought his marriage was perfect. He was shocked when I finally left.

The weeks before I left became littered with fights and broken furniture. One afternoon we had the last fight of our marriage. I left for my parent’s home and he never came for me. He spent his time calling me and asking me to come home or making accusatory calls to me while I was at work. He wanted me back but was angry that I was not doing as he asked. He also had too much pride to follow his wife to the ends of the Earth, or a mere few miles up the road.

Some say divorce is worse than death. I can agree with this on some level because running into an ex can almost be like seeing a ghost. I haven’t seen mine since our disillusion was final. I was thankful we had no children thus making the separation of our lives a clean cut.

You may wonder why this would be the subject of my next post in light of the holiday season. New Year’s Eve fifteen years ago, I was laying on the bathroom floor my ex and I shared wondering if I wanted my life to continue. I heard the laughter from the party going on in the basement beneath and felt it was not for me. Against my natural desire to live grew this terrifying thought grown out of depression. Marriage was not like most things in my young life, it would continue until death. I realized I had no second chance and I should have felt more desire for my husband and my marriage. I had ignored my heart and did what I thought was “right.”

I stayed for a few more New Year’s Eve parties until I matured and made the difficult decision to make our separation permanent. The day I left, I had no idea how I would come to that choice but when he never came for me, it was easier to make. I had to be worth the fight.

………….

Years later, I married him on a cold spring day in the dress of my dreams (it was sleeveless) and prepared confidently, knowing however I came down the aisle, he unconditionally loved me. My heart and my mind were no longer at conflict.

During the approach of the holiday season, many thoughts turn to resolutions or putting behind a bad year. Isn’t it silly to think the same problems won’t follow through to the next year or resolutions will be easier to keep because we can open another calendar? Making a resolution to run away from problems does not work any better than running from them the remainder of the year. What happened to accepting the year we were given and using the short-falls of that year for our betterment?

My New Year’s advice for you: look back and enjoy this year. Do not be in a rush to discard it. Fifteen years ago when I was laying on my bathroom floor, I lost hope. My life was certainly going to be more of the same disappointment but that disappointment led me to where I am. My husband was worth the previous years I was ready to forget. If I would have known the heartache I experienced would bring me to where I am, I would have met it with more joy. There can be joy in our sadness. Unfortunately we don’t realize all that is meant for us until it has come to pass. Don’t regret an entire year based on difficulty, remember the clay is stronger when burned by fire. The heat may sometimes be intense but it is preparation for many things yet to come. Be patient. True happiness is always worth the wait.

Happy New Year! Wishing you the confidence to make the hard decisions and waiting for the best return the new year has to offer.

*d*

Homemade Pizza and Prozac

~ crossroadtrippers ~ 3 Comments

I made an awesomely beautiful homemade pizza tonight. My grandmother, who’s staying with us for the winter and loves pizza, was very impressed by its tastiness. My husband, who thinks he’s a pizza aficionado found it to be “amazing.” In all fairness though, he thinks a Quarter Pounder with cheese is “amazing.” While yummy in the throes of an insatiable grease craving, I would never say the burger is amazing. Regrettable, Indigestion inducing, Nap inspiring, those are all terms I’d use to describe the sandwich. But, the pizza was really good.

Anyway, pizza is something we don’t often break out the good china for. We spare my blue and white farm animal print dishes and use paper plates with those plastic support things under them. The practice has always been to use the plastic thing, throw away the paper plate when finished and put the supporter back in its place in the cabinet if there’s nothing crusted on it.

(Thinking of my last post about the horrors of germs on towels and the obvious contradiction this plate policy represents makes me wonder if this is why no one can seem to follow my rules. No, that couldn’t possibly be it.)

For whatever reason, my husband, an engineer, has never been able to grasp the supremely difficult procedure and leaves the plastic supporter lying on the counter RIGHT BELOW THE CABINET IT GOES IN. Without fail. Every time. I’ve asked nicely. I’ve yelled. I’ve brought the plate back to his office and laid it down on his desk saying that there must be some mistake and that perhaps he’d like to try again. He normally apologizes and puts it away but I’m dumbfounded at why he won’t save himself the extra steps and me the inevitable eye twitch. It’s true that I could just put the plate away but I have a long-standing belief that I married a man, not a child. That belief is tested on a regular basis but I don’t feel like I should be supporting his efforts to make me into his mother.

So, tonight, when he again left the plastic thing sit, inches below where it was supposed to be, I asked him to explain it to me—explain how he can’t add one more step to the process and just PUT THE PLATE IN THE CABINET.

“I think it’s because I sit the plate down there on the counter and take the paper plate to the trash and then I just never go back,” he said.

I fight back a quivering eyelid. “You walk past the trash can on your way to that counter. Couldn’t you throw the plate away and then walk to the counter?”

“Uh, I don’t know.”

This. This is why I’m medicated.

 

~L~

Toweling Off

~ crossroadtrippers ~ 2 Comments

For years I’ve tried to figure out what I’m good at. Moreover, what I’m good at that I can make money doing. As it turns out, the only things I’m good at won’t make me much money. What I’d really like to do professionally is write. I’ve been writing stories since I was able to construct sentences. I’ve journaled for years, blogged, and even wrote a novel. What most people don’t realize is just how hard it is to make a living as a writer. Hell, I had no idea it was going to be this hard until this past year. The amount of work that goes into perfecting a manuscript and getting it published is unfathomable to anyone who hasn’t tried. So, while I struggle toward publication, I have to do something to pay for those haunting student loans and the English degree that has yet to earn its keep. So, I turned to the only other thing I feel that I do well: cleaning.

I started cleaning for a friend and got referred to her friends and family and so on and so on. So I clean for several folks in an effort to pursue my writing and still keep the loan collectors from taking me to court. It’s pretty hard work sometimes, not to mention gross. Especially since I’m a functioning germ-a-phobe.

I’m all too aware of the germs on and in everything. I think about the nastiness on every surface I come into contact with and shudder if I accidentally put my fingers in my mouth before washing them (I have a horrible nail biting habit). But I don’t let my awareness keep me from doing anything. I just wash my hands regularly. I still use hand towels in my home bathroom because I can’t bring myself to use paper towels since I’m also keenly aware of the environment. So, I change the towels about every two days as a way to compromise and to try to keep the nastiness to a minimum. Maybe that’s psycho-level often, but it makes me feel better so I do it.

I take into account that I am border-line insane when it comes to a lot of things including my germ awareness. However, if you never change your hand towels, I feel okay judging you. You know who you are. You can’t see me, but I’m shaking my head at you.

The truth is that not everyone washes their hands the way the CDC would prefer but you can bet that they’re still drying them on that towel. That means it’s not just water clinging to those absorbent fibers. If I can see discoloration in the spot where I know everyone’s been drying their hands or if the towel crunches when I pick it up, you have surpassed the time limit for a single towel to be displayed. Your towel’s 15 weeks of fame are up. I think a good rule of thumb, for the non-crazies out there, is to change the towel at least weekly. When I see the same towel hanging that was there the last two months or better, I tend to take some paper towels into the bathroom with me. I mean, what’s the point of washing my hands and then wiping them dry with the crusty germs of everyone that’s used the towel in the last half a year. Also, if you have pets, don’t put out what’s supposed to be a fresh towel and let me pick it up to dry my clean hands only to find it covered in pet hair. Despite their cuteness or lovability, their hair on a hand towel is disgusting. If I wanted to wipe my wet palms on pet hair, I’d dry them on your dog.

http://www.cdc.gov/handwashing/index.html

~L~

Life’s Sucker Punch

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Have you ever been hopefully optimistic after a long line of difficult days? Some days aren’t easy in my home.

My youngest son has a rare and incurable disease. He is multi-disabled and suffers from a number of different issues because of his primary diagnosis. He has been having a number of good days lately. He has adjusted well to his first year of school and has been gaining ground developmentally. Two of his many diagnoses are Autism and intermittent explosive disorder. Needless to say, he is prone to meltdowns, sensitivity to everyday stimuli, hitting and screaming. Aside from having some neurological setbacks, he has been communicating more efficiently, interacting with his siblings and sleeping better. I have been quite optimistic. This is against my nature. I don’t call myself a pessimist, just a realist. Realistically, life for us will be a bit more difficult. Today snuffed out my recent optimism.

Since having my fourth child, I have been having increased problems with my joints. I have issues walking up and down my stairs and more recently, using my hands for simple tasks. I visited the doctor and my blood was taken. I got a call this afternoon that confirmed my suspicions. I have Rheumatoid Arthritis. It is still sinking in. I keep thinking of a number of people I knew who suffered with RA. They had disfigured fingers and could not get around without some assistance. These people were twice my age. I know this is a progressive disease and I am still young, but I once again can’t imagine the future. How will it be in several years when I will be caring for my son and he will most likely be twice my size? I suppose I must continue to live for today and take steps to ensure a better future.

I tell myself frequently that life is about trade-offs. Some people seem to have it all but those people may suffer deep emotional stress. Others may live without life’s essentials but are full of joy. I sometimes feel envious of the seemingly perfect family pictures on social media. I really don’t know what their life is like at home. I imagine my family can also look seemingly perfect. In this instance, a picture may not say a thousand words, just hide them.

So I ask myself if I can live with my trade-off and if I can once again find joy in what I cannot control. Can I find the purpose in yet another disappointment? I am sure I will, it will take some time. It will take time to once again find optimism. This most likely will happen after adjusting to my new normal. Life will continue to hand out the sucker punches, it is a good thing past difficultly has me prepared.

*d*

The Follow Through

~ crossroadtrippers ~ Leave a comment

I am bad at following through. When I ask myself why I am this way, the whole “nature vs nurture” debate plays out. As a kid my parents were great about getting me into activities, for one year. Dance class, piano lessons, plans to change the course of my life all occurred in the span of a year.
These days plans to change my outcome or improve myself take a great deal of determination. I never really learned to follow through. I have learned to feed the leering instant gratification monster. I can handle small life changing decisions like banning fruity pebbles (I clean the bowl but they are never really gone), limiting the verses of SpongeBob sung in the van, or how many times I will ignore the growing noise downstairs. The life altering decisions require effort but are usually worth the work.
This month I have decided to start over and make some small positive changes. Probably for the 142nd time. I have come to embrace my flaw. I make plans and often don’t notice how I have once again failed to integrate the difference until I am deep in my familiar loop. So I allow myself to keep starting over. Most people wait to start fresh until the first of the year. What good is a resolution without a year of failure preceding? Others wait for Monday. A new start may as well wait for a new week, right? I just keep trying. I keep trying to make those small improvements once a month, a week or even several times a day if needed. It doesn’t always work.
Failure is necessary. We must fail for growth. We must fail so we can understand ourselves and embrace our flaws. We must also admit our imperfection. Sometimes failure is a hard thing to recognize. I am a mother of four. There is a large supply of people to point out my mistakes. And that’s okay. Keeping on track takes work and it takes support. In the end, fighting to keep a desire for positive change yields the most results.
I will continue to make the simple  choices my kids can’t seem to live with: limiting screen time, finishing homework, or making sure they try everything once. I know I will fail to teach them something but I don’t want them to fail to try again.
As for me, I try to remind myself that I am worth the effort. The monotony of motherhood sometimes leads to a void of self-worth. Beauty is usually hiding behind a shirt used as a tissue, jeans speckled with cheerios and hair arranged in a fashion slightly resembling a pony tail. And the phrase “take time for yourself” is joke-worthy. I am on an uphill journey well worth the experience. My follow through could happen on a Thursday afternoon and that could change my life.