More Than Just Coffee

Lately I have been wondering if I have been truly in love with something or just the idea of that something. For example, I decided at our last monthly grocery run that I wanted to try to be a coffee drinker. It isn’t that I haven’t had coffee before, I was one of those people who got a coffee maker for a wedding gift ten years ago and used it maybe twice. I love going to our local specialty coffee shop and indulging once a year but making my own wasn’t anything I was ever interested in. Now I thought I’d give it a try for a number of reasons; I would rather get a small boost of caffeine from a small cup of coffee versus pop first thing in the morning, my RA has had me running on fumes, and I love the smell of coffee. I have been spawned by long and large group of coffee drinkers. I would smell the lingering aroma of it from home to the home of a relative, and every Sunday morning at church. The Baptist couldn’t wait for a coffee fueled sermon followed up by coffee fueled fellowship. The thought had occurred to me that I had an emotional attachment to the smell, and not the taste. It’s probably true. We were between housing when we lived with my eighty-something year- old grandparents who brewed coffee in the morning, reheated it in the afternoon and anytime they got a chill, which was quite often for my late grandfather. I miss him dearly and my decision came upon the heels of a year since his passing.

So we’re at the grocery and I stopped and stood in the coffee aisle taking in my limitless possibilities. I admit that I was a bit shocked by the number of choices I had and I am not a decisive individual. My son cheered me on as any bad influence of an eight year-old would. Apparently drinking coffee is a huge thing for third graders at his school…. So after telling him to stop taking out every interestingly packaged coffee and coffee mug for his new habit, I chose a very girly vanilla cupcake flavor coffee. Heaven forbid my coffee would actually taste like coffee. One package of coffee filters and a over indulgent container of chocolate caramel creamer later, we were headed home.

I returned home more than eager to brew my first cup, but where was that coffee maker? I had a frightening thought that I may have pitched it in our last move. Why not? I never used it anyway. I kept frantically searching as I secretly began to repremand myself for throwing it out. I don’t like throwing anything out for this very reason, I’d have to buy another one and I know that wasn’t going to happen anytime soon. Finally, I found it! But then I didn’t know how to use it. Luckily the people at the girly coffee factory want to make sure all of us novice coffee drinkers could make a cup so we could thus get hooked. Great idea! I got it ready and began to unload groceries as it brewed. My husband thought I’d surely made it wrong when it only took a few minutes to brew my quarter pot of coffee. Then I had to find a cup to put this newly acquired liquid gold in. I certainly had some coffee cups as I am avid cocoa drinker in the winter months. One coffee cup is all I found. Darn. Then by chance I found an awesome mug fit for a coffee pro. I washed it, poured my first cup, and it was weak. I made it too weak. I was going to need more zing than that keep me going during the day. The second cup was amazing and I felt special sipping out of my fancy cup. For the next few mornings my coffee was already auto brewed by the time I came downstairs. I had a bit more zing in the a.m. and I began to see why people insisted on starting their mornings with this stuff. Then the disappointing happened, I started having terrible heartburn. I cringed when my mom suggested it was the coffee. After all that trouble, it was causing me heartburn that could be mistaken for a heart attack.

This afternoon rolled around and in the true spirit of the Midwest, it was below normal temperatures and a hot cup of coffee sounded great. I brewed it and it is still sitting there an hour later. I haven’t touched it. Do I dare chance the feeling of looming death for my newly acquired taste? Today I may be satisfied with my emotional attachment to the smell.

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I am more disappointed that I once again can’t be like all the other “cool” people and start my day off with a jolt of girly coffee goodness. I can live with reducing my consumption but what about that smell? It reminds me of home, loved ones, and a church family that felt more like my real family. Maybe I need to think a little harder about sporadically falling in love with an idea because it seems like those ideas for me don’t pan out in real life.

My daughters have been playing together more as my “baby” is now a year and a half of busyness. She follows her big sister with her ride on toy, they play with the tea set together, and they frequently say “Bye!” as they leave for their pretend jobs . It makes me wonder what it would have been like if I had a sister. I have been in love with the idea of a having a sister forever. I have seen cute little posts on social media comparing a woman without a sister to one without an arm or some other nonsense. Like I had a choice about how my family dynamic played out. I hoped I’d someday have that faux sister that I could go shopping with, call on the phone, and we’d celebrate all of life’s joys together. But from what I see, it isn’t as glamorous as I had imagined. Sisters fight. I don’t like to fight. But I still wonder.

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And then I wonder about all the things I may have missed out on; a college degree, a full time job, and all the dreams I watch others live out. Those notions are so much harder to live out than buying a four dollar package of coffee off the shelf. So I learn to accept life as I have it. I have notions about what I think life is all about and no one knows what my life is really like. So I keep dreaming about those little things. Are they what I really want or do I just like the idea of it all?

I am awful good at looking idealistic. I often seem like a pillar of strength or maybe a beacon of hope, but I complain about the circumstances out of my control just as well as the rest. Why does my coffee have to give me heartburn? Why am I not worthy of meaningful friendships with other women? Why am I sick? Why are we drowning in medical debt? Why are we not living out this dream life? And on and on….. The truth is, things aren’t easy. We spend time doing a lot of things we’d rather not. Last night we spent three hours preparing and sorting paperwork to fight social security. Yes, they want to take back payments from two years ago just in time for the holidays. My desk is full of paperwork only special needs parents or the chronically ill can appreciate. “Here is your half ton of paper work Mrs. M.! Good luck with all of that because life understands how easy you already have it.” Yes, nothing is easy or as it seems. I can be joyful in the face of adversity but I can be equally as disappointed in those things beyond my control. I just keep trying. I keep smiling and I try putting my faith in things that have a special place in my heart whether it be a friend as close to my heart as a sister or my husband who spends three hours on the floor digging through paperwork. As for the coffee, the trouble was almost worth that smell of home but then again I guess I can find a candle for that.

*d*

A Lesson in Friendship

It’s no secret, I like different and I would love to start a new and unpopular way of thinking that praises the vast differences of the human race. I would love to think we could be a world where people would truly learn to love blindly. I want to share a story with you about my son with special needs and how he might know the very best way to love.

I normally would not go into a debate about social issues and I do not want to with this post. I only want this story to be one to ponder the next time you see strife over various differences in our country.

I believe I have the freedom to believe and the free will to choose my own personal convictions. I also respect the beliefs of others and their freedom to choose their own convictions. That is what our country is all about, right? Freedom? The problem is the inability people have to respect the differences we are all allotted. It can also be difficult to find a middle ground that satisfies an infinite number of beliefs. Here is something that could make the conflict a bit easier to swallow; if your opinions or beliefs differ from another, you have the option to choose kindness. It isn’t likely the debates and arguments will ever end and we will not likely satisfy the millions of varying beliefs, but we can always choose to be kind.

Kindness is something I didn’t have to teach my disabled son. He cares nothing about the differences everyone else is fighting about and he most likely will never fully understand the complex moral debates that have been going on for decades, he’s just nice. He knows how to make friends even though he can’t communicate like a typical child. He calls everyone he knows his friend. Here is a story about my little boy making a new friend.

Last week my aunt came in from Arizona. It has been a long time since she has returned home for a visit and this time she didn’t come home alone. My aunt is gay and she came with her wife. It is the first time we met the woman she has devoted her life to. I hope they enjoyed their time with family. We played games, sat around a campfire, and ate lots of food. My aunt’s wife also made a friend, my seven year old disabled son. She didn’t flinch when he brought her his iPad and wanted her to play. He was rather insistent but she didn’t seem to mind. She sat and played, talked, and made funny videos with him as long as he wanted. He didn’t care that she was new to the family, he could care less about how she dressed or who she married, he liked her for who she was and she liked him the same. She may have noticed that he was different but she didn’t withdrawal from him any of the numerous times he wanted her attention.

To understand this mother’s joy over this event is to know that I understand that it can be hard for some people to interact with my son. He doesn’t always ask to play and he often uses in your face tactics to engage playtime. I understand he can make someone who doesn’t know him very well uncomfortable. But what I saw was a new friendship between two strangers that could have been mistaken for one of life long friends. These two friends really liked each other and no amount of difference between them mattered.

The day after my son met his new friend, he sat with his iPad and watched the videos they made together numerous times. He even remembered her name. After he had his fill of videos, he stood at the door and asked to go to grandma’s house because that is where his new friend was staying.

Those two saw each other as each one of us should see each other, potential life long friends. Their friendship is blind, as it should be. Too bad too many people miss out on a great friendship because of differences. It’s a shame many can’t stand by their own personal beliefs while still embracing those who oppose them. The debate isn’t about beliefs, it about the condition of the heart. My little boy calls those who treat him with kindness friends, it’s that simple. Maybe this friendship has more to teach us than we know.

*d*

Chasing a Diagnosis

We sat on her family room couch sorting through her photos. Occasionally one of us would stop and show the other a photo, laughing or reminiscing about the story behind it. I felt like a kid again, sitting in my childhood home reliving old and happy memories with my mom. Then she paused, her fingers resting on a photo. The smile had vanished from her face. “What? What is it?” I asked. I noticed her demeanor had changed.

“I don’t remember having this taken,” she said in a somber voice. I leaned over to look at the photo she still had between her fingers. It was a photo of her at the hospital two years ago after a major surgery called a Whipple Procedure. She looked at me as if to question if she was really the one in the photograph.

“That’s you,” I assured her. “You looked awful,” I said, trying to hold back my tears. “I am glad you don’t remember.”

“Me too,” she said as she slid the picture from her fingers into my hand.

I sat and studied the photo for what seemed to be an eternity. She was sitting upright in a chair next to the bed in her hospital room, a pillow draped over her lap. The hospital gown barely covered all that was coming out around her. A tube was coming out of her nose and one was also coming out of her neck. Looking at the photo seemed to leave my mom in some sort of disbelief. She had no recollection of the days following this surgery and although the photo looked like her, she acted as if she had just seen a ghost. I knew it was my mom in the photo, but I too thought she looked like a shell of the woman I have always known. Her pain was so intense after this surgery that I can only describe the look in her eyes as empty pain. It’s the kind of pain that demands complete submission to it. And there she was in a photograph, a momento of pain.

She and I had a haunting glimpse of a time two years ago we would both prefer to forget. It was the first time I seriously doubted whether or not my mom would make it through a surgery. This surgery was different than the ones she’s had previously. This was a rare procedure that required a skilled surgeon and would not guarantee her a better future or survival. When faced with such uncertainty, I thought about the holidays we had shared over the last year and wondered if we had truly enjoyed those moments together. I didn’t want to think about having the next holiday without her. It also made me think about my own selfishness and the times I didn’t grasp what life has been like for her. As long as I can remember my mom has been battling an invisible enemy. My mom was born in 1953 and in 2008 she finally found out what has been causing her life-long pain. She has a hard to detect birth defect called Pancreas Divism (an abnormality of the ducts of the pancreas) and Spincter of Oddi Dysfunction (a dysfunction of the muscle(s) that help control the flow of pancreatic juices). This and the treatment of which caused Chronic Pancreatitis. These abnormalities cause the syptoms she has felt since childhood: pain in the upper right quadrant of the abdomen or in the back, epigastric pain (especially after meals), abdominal swelling, nausea and/or vomiting. All of these symptoms during her lifetime were mistaken for various other ailments, so mom spent 55 years of her life undiagnosed and suffering.

“I’m sorry,” I whispered from under my tears.

“About what?” she asked, sounding surprised.

“For not being more supportive,” I continued. “I can’t imagine what it was like to be in so much pain, especially when so many people stopped believing you.”

“I had to keep going. I knew something was wrong, but I hate that it took so long to find out what it was.”

Her problems began in childhood. She had unexplained pain that grew more intense into adulthood. Because she so desperately sought an answer, she has had a staggering number of surgeries in her lifetime. Some surgeries to fix specific problems and others were an attempt to find the source of the returning pain. There is no doubt it was hard for her to continue to fight for her own health when others had given up.

She hugged me and we sat silently, maybe pondering the moments we lost. Her story has touched me more deeply in the last year. I was recently diagnosed with Rheumatoid Arthritis and I too will most likely be dealing with a lifetime of chronic pain. The difference between her story and mine is defined by one word: diagnosis. When my blood was drawn last year, I didn’t want a diagnosis but once I got it, I was validated. My pain wasn’t an illusion and I could begin treatment. My mom had spent most of her adult life chasing a diagnosis.

So, why was it so hard for her to chase a diagnosis? The hospital and medical bills became a rotating door for my mom even though she and my dad were already struggling financially. Money wasn’t the only reason she was discouraged from returning to the hospital or seeking out another specialist. She’d frequently hear comments like, “If they can’t find anything wrong, then what is it?” or, “You don’t look sick.” And all the while she would feel discouraged and invalidated for her suffering. Years of hearing other’s doubt made her doubt herself and that led to depression.

“How have you done it over the years?” I asked. “How did you live with chronic pain, especially when you had no idea what was wrong? Weren’t you angry?”

“It isn’t easy,” she explained. “Getting angry about it wouldn’t have helped. I knew my body and I did what I had to do. I have also learned not to hide from my depression.”

When my mom finally had diagnosis in hand, the only treatment available was risky and didn’t guarantee a better quality of life. The first procedure landed her in the hospital with acute pancreatitis. I visited her during this acute flare in 2008. Her pain was so intense that she was given large doses of pain medications and food was held until her pancreatic levels decreased. When I saw her, she was out of her head and desperate for food. Every year since 2008 is speckled with memories that she and I would rather forget. Awful memories where my mom and I began having an unspoken understanding about her health and death. These moments would shame the people that would doubt her illness when they’d say, “You don’t look sick,” doubt her pain because she wasn’t constantly folded over from it, or those who were perplexed because they couldn’t see her disability with their eyes.

“Mom,” I said, “you are amazing. I can only hope to have half of your strength.”

“I’m not any stronger or braver than you.”

I heard what she said but doubted the truth in it. I didn’t have the same difficulty before I had my answers. There are many people, like my mom, who are chasing a diagnosis. They spend every day in real pain and desperate for answers. They persevere even if they have to do it alone. My mom did what she knew was right despite adversity. Fighting the unknown is one of the bravest battles one can face. She isn’t the only undiagnosed individual fighting for answers so don’t judge someone based on outside appearances or speculation. Offer support because even when someone is fighting the unknown, they are still fighting.

*d*

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Why "You don't look sick" isn't a good thing to say.

Signs of acute pancreatitis:

Sudden intense pain in the middle of the upper abdomen and the pain may radiate to the back. This pain may begin 12-24 hours after a large meal.

Fever, nausea, vomiting.

Cammy skin or rapid pulse.

Tenderness or distention of the abdomen.

Signs of chronic pancreatitis:

Abdominal Pain that may radiate to the back or chest that is intense and long lasting. It may be intermittent or persistent.

Stools that are excessively foul or bulky.

Nausea, vomiting or abdominal distention

Weight loss because of malabsorbtion of foods

Development of diabetes if pancreas becomes damaged.

Source: webmd.com

A Ride Called “Disease”

A group of teenagers push wildly through the crowd and down the fair midway. At the tail end of the group, a reluctant girl is holding the hand of a boy sporting a cheesy grin. “Come on,” he pleads as he pulls her hand in the direction of the rides.

“I really don’t want to,” she insists as her steps narrow and her pace slows. Both eventually stop to talk and after a pathetic glance from the boy, she relaxes her shoulders in submission and follows. He spots his friends rough housing in front of the ferris wheel. She protest, “No, I don’t like those things and this one doesn’t look safe.”

“Awww, it’s fine,” he coaxes. She could sense the doubt in his voice.

“Come on!!” the group taunts as she sides her way into line. The ride is old, very old. It has been a right of passage for many other teens. The long held tradition has included rocking, screaming, and bouncing the rickety ride as if to dare it to crumble.

“Don’t move our seat,” she whispered abruptly as they loaded.

“Sure,” he assured as he sheepishly grinned to his buddy in the next seat. Not long after they loaded, the rowdy group began screaming and yelling but they remained still until the last seat was loaded. None took the chance of being kicked of the ride prematurely. After the old ride was started and at full speed, the chaos started. Violent shaking, bouncing, and attempts to stand up over the seat bar began. The operator began shouting but they continued on. The girl held tight to her boyfriend’s arm but his assurance to remain still did not last. He began flipping the seat forward as hard as he could and she began to scream in fear.

“Let me off, I want off now!” she demanded as she drew as far from him as she possibly could. Her trust had been broken.

“We’re just having some fun,” he said as the ride came to an abrupt stop. The operator was now cursing as he began unloading the riders. An argument between the girl and her boyfriend ensued. He offered a half hearted apology only after she began to cry. His remorse lasted until he was reunuted with his group of friends at the base of the ride. Then he sneered and thanked her for embarrassing him in front of his friends. He turned away abruptly and lead the group down the fairway, the girl crying while scurrying behind. In confusion, her focus now became how she could make it up to him.

***

I can definately relate to this story as I was that confused teenage girl years ago. Thank goodness I can laugh about it now and I am thankful that I have matured but that isn’t the point I am trying to make.

Instead this story is quite the apologue of the last few months of my life. A few months ago, I reluctanly stepped onto a rusty, old ferris wheel. It’s name was “Disease”. Despite it’s unsafe appearance, I convinced myself that I would be okay with “Disease”. Soon I had a passenger and it’s name was fear. I thought I had made peace with “Disease” and I wondered why fear had joined me.

“It’s okay, sit with me,” fear assured, “I’m a friend.”

“Disease” creaked and groaned but I didn’t get too nervous. I was familiar with the ride and I knew a few of the other reluctant riders. Then when the chaos broke out, I pulled myself closer to fear. “That’s right,” fear hissed as it violently began flipping my seat forward. I held tight to fear as the violent forward motion made me feel as if I were going to fall from my seat. Yet, I felt no comfort and my fears increased tenfold. The high and low of the ride now felt like they were coming too quickly. I was now frozen and with fear. I wanted off the ride, now! 

I began devising my own plan to escape. In the meantime, I tried to find some other way to brace myself safely into the seat. I couldn’t see anything, nor could I move. Something was sabotaging my safety. It was the fear still strapped in beside me. Not only  strapped in, but I was still locking arms with it. I had put all my trust in fear only to be deceived. I felt as betrayed as the girl in my story, but I knew I had to let it go. It was only when I let go that I could clearly see; and when I looked, I saw my son. He was riding alone in another seat. I had forgot about him.

Yet, there he sat looking out alone beyond “Disease”. I was staring at him while he began to make his way to the top. As he approached the top, he began to clap, and yell “Woo hoo!” He was happy and I was puzzled.  He wasn’t focused on the ride, he was focused on the view. He could certainly see the sky, the stars, the entire world from his vantage point.

For the first time, I slowly sat back and decided to try to see “Disease” as my son saw it. As I reached the top as he did shortly before, I was amazed of the view “Disease” gave me. I could see life from a vantage point few others could experience. Once I released fear, I was able to appreciate the view. Without fear, every movemment no longer made me nervous. I remained focused with my head held high. As I looked  I finally “got it” and I won’t soon forget what my little boy taught me about “Disease”. It can change you by fear or change your perspective. Fear wants to destroy and I’d much rather follow his example and keep living despite of fear.

Unlike the example in my story, my happiness didn’t have to be defined by who sat closest to me. My focus needed to be on anything that helped me break free from my own immaturity of the situation. Isn’t it amazing how my little boy helped change my heart and lead by example? “Woo hoo!”

*d*

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Thirty Lessons From a Special Needs Parent

A few events today had me thinking about the following post. I had originally posted this on my personal Facebook page and I thought I would share it here. I haven’t been a special needs parent for very long but it has certainly changed me in a short period of time.

1: Patience is needed and taught on a daily basis.

2: “Slow to anger” is an important saying that does wonders when practiced.

3: Someone should never be judged based on their disease and/or disability.

4: Never judge someone if you are not coping with their problems.

5: Treat others the way you want to be treated.

6: Whispers, stares, and gossiping about a situation that can’t be helped, hurts.

7: Difficulty teaches compassion.

8: We want to help but are often hindered by our circumstances.

9: Guilt is a part of every day life.

10: Depression is real and is felt a lot more often than we want to admit.

11: Help is not requested as often as it’s needed. It seems important for others to think we aren’t falling apart.

12: We stay at home and shy away from gatherings if we know it will cause stress all around.

13: Choosing a baby-sitter is a big deal, thus we don’t go away as often as we would like.

14: We appreciate the opinions of others but rarely take advice from those who spend very little time with our child.

15: We need and love support, support, support.

16: We rarely want sympathy. We just want someone to talk to. It helps us unload some of our burden.

17: We want to know about your family and notice when you stop reaching out to ours. We realize our life seems depressing, but it is ours.

18: Our hearts break a little when we see others doing things we know we may never be able to do.

19: Negative people and opinions hurt, we are doing the best we can.

20: Love reaches deeper than we ever expected.

21: What seems like a burden to others, is a blessing to us.

22: We are sad when others refuse to see the joy our children bring to our lives.

23: We have seen more compassion and love from others through our difficulty than we ever expected and it’s humbling.

24: Celebrate the little things.

25: Choose the battles that really count.

26: We worry about losing our spouse profoundly more than other people. We know how difficult it would be to raise our children alone.

27: We no longer measure great achievements by the world’s standards.

28: Some of the best friendships we have made are forged through a common bond.

29: With each struggle we become stronger.

30: Our journey has helped us love the differences we see in others.

If given the choice, we would not choose a disease or disability for ourselves or for our children but we have been blessed by the difficulty it has brought us. We know what it means to make every day count and we understand why each day must be appreciated.

*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~

Music and Pause

Pause. My life has been on pause. That includes this blog. Sometimes a pause is necessary to reevaluate our lives and it seems as if my friend and I are experiencing a life shift worthy of a pause simultaneously. We both are once again standing at the crossroads and wondering what direction we need to take. We are both sitting idle at the intersection of life carefully planning the next road to be followed.

Health issues have been to blame; my own, my mother, and my son have been experiencing increased difficulty with health. I have now been told I have two incurable diseases, my mother has had another serious operation, and my son’s epilepsy has been harder than normal to control. I needed a pause. I chose to step away to observe and listen at the crossroads. I needed to know what lie down each road and how to navigate the future. My decision: pull up a chair and wait. I didn’t feel like a change needed to happen, but I did feel a slow down, and pause, was needed. I needed to stop and let the world speed by because I was not able to zip along with the rest of the world (in part by my diagnoses). So here I am sitting in the middle of my road with my feet up and unapologetic about it. While everyone else is buzzing by I refuse to be moved until I know exactly what I want to do. There will be no rash decisions this time, there will be no spontaneous movements, I will wait…..

Pausing life does not come without its share of victims. This blog has flat-lined and I often feel more than guilty about it but I remind myself that this project was meant to be an enjoyable release. I do not want it to start to feeling like a job. I have plenty of work to do and I refuse to make the little things I enjoy feel, well, less enjoyable. Everyone and everything is in too much of a hurry. Everyone is rushing, but to where are they going? What is the destination? Run to our earthly end? Run out of expectation? Run out of habit?

I have been house-sitting while my mother has been in the hospital. Instead of going straight home after my last check, I took all four kids to the cemetery where my grandfather was buried over six months ago and to where my uncle was laid to rest over three years ago. On this day I was listening to a play list of some of my favorite songs instead of the usual kid’s movies. As I pulled up to my grandfather’s grave, Pink Floyd’s song “Wish You Were Here” came up. I parked in front of his tombstone and turned up the radio. It was hard not to be captive by the moment. I could hardly imagine the vast number of people who have visited that same cemetery and their hearts were singing those same lyrics, “How I wish you were here….” I didn’t have the words as I stood beside the bare earth above where he lay, so I just listened. Then, we slowly drove to the other side of the cemetery, my mind still fixated on the moment. I found my uncle’s grave and as I shifted into park, “Whiskey In the Jar” by Metallica began to play. Obviously my songs are in alphabetical order but the order and timing of what happened made me smile. I remember my uncle driving like a bat out of Hell down the interstate listening to our local rock station. He may be the reason Metallica is one of my favorite bands and why it was on that very play list. So I turned up Metallica for my uncle and stood where is body now lays. I was once again at a loss for words but I grinned thinking of my less than proper behavior at a cemetery and how my uncle was one to break the mold. The visit was humbling but not sad. My heart hurts to know that my time with these men is over but I am confident they are not confined to the grave. I know they are as free as the lyrics that filled the air.

A stroll, or drive through a cemetery can be quite humbling. If you haven’t done it, you need to. It is a good reminder that we all will eventually have the same space under the Earth to occupy. With all the running the world says we have to do and all we have to accomplish, we are just speeding closer to that hole in the Earth. STOP. Slow down, sit in your intersection and be unapologetic about it. And listen to a good song or two…… the music of life is hard to hear when you are moving too fast…..

*d*

The Easter Approach

Everyone has had rumors spread about them. These childish antics usually take place in high school, but unfortunately gossip is a nasty habit that carries well into adulthood. Rumors about me have labeled me weak, immature, inconsiderate, unappreciative, a snob, and much more. I urge you not to believe any of it, not because I haven’t been all of those things and more but because I have been forgiven for sometimes being exactly that. Easter is in six days and regardless of your religious affiliation, or not, one of the oldest stories ever told can have meaning for you.

As the familiar story of Christmas reminds us, Christians believe that God came to Earth and took human form. In one the many mysteries of the faith, He became fully man and fully God. He was also God, Son, and Holy Spirit in perfect unison, the Holy Trinity. Jesus fulfilled prophecy during His lifetime and did so to the end, suffering a horrific death. As God, He knew this was going to happen and as man, He pleaded for the suffering to pass from Him. As man, He suffered more than any human would ever endure. He was beaten, crucified, and bore the sins of the entire human existence for all time. As God He chose forgiveness instead of vengeance choosing to utter the words, “Forgive them, for they know not what they do,” in one of His last breaths. I know, this is sounding like a sermon but we need to be reminded that the Christian message is and needs to remain about forgiveness and sacrificial love as demonstrated in the Easter story. Often times we want to run our own agendas and forget the Easter message the other 364 days of the year. Christ did not say in His last breath, “forgive everyone except (insert name here)”. He made no exemptions and washed it all away. ALL of it. He took those moments when I was weak, narrow-minded, unforgiving, and sometimes ungrateful and forgave me, all I had to do was ask. I am comforted by this story because it can speak to everyone. True love is looking past all those imperfections and seeing others for who they truly are and what they desire to be. Unlike those truths and rumors about me, He knows me well enough to know the desires of my heart and gives me those desires even when I am unworthy because He loves me.

Yes, I believe in God who chose to live a meager existence, even in death by humbling Himself as man and accepting a fate that would result in Him ridiculed, beaten, and hanging helplessly to a cross. He accepted what He was given even when He could see exactly what it meant, even when He had the power to stop it. You don’t have to be a Christian to appreciate a man who lived no more than a meager existence, that accepted a sentence He did not deserve, because He loved humanity so much. We all have been given sentences we don’t deserve. I know I have but I choose to follow His example and accept it all the way to the end, even if it means to death because someone did that for me. I am also going keep trying to freely forgive others, and even myself, when I have been hurt because He offered forgiveness to the very people who chose to nail him to a piece of wood.

So I ask you to stop listening to rumors about me, each other, and Christ and see humanity and faith for what it really is; humbling, forgiving and life changing. It’s about time we stop looking at those bruises and scars we all bare and see us how we were seen over two thousand years ago, a beautiful work of creation deserving of the greatest forgiveness and love. The next time you don’t think someone, including yourself, is worth a kind word, or even forgiveness, there is a God who placed extraordinary value on each person, so much so He died to prove His love.

*d*

Unfinished

It has been nearly six months since my maternal grandfather passed away. It has taken this long for me to process the shock of his death. The grieving process is long for me because it takes me a long time to grasp the reality of a death. In the past six years I have adapted to my son’s diagnosis by detaching myself from emotions when terrible events occur, including death. I guess it is a type of defense mechanism for me. I put my head down, push forward and deal with the emotional consequences later. When my emotions finally catch up with me, it takes me a while to recoup. Several events this month have me thinking about death.

People don’t like to talk about death. It’s scary. Death is a good reason I cling so hard to my faith. I believe in something that gives purpose to all things, even something as deviating as death but it’s still difficult to handle. As much as I believe it to be a natural part of life, there is no perfect way to grieve. It took two years after my uncle’s death for the reality of it to set in and I am now feeling it six months after my grandfather’s passing. It usually takes something to set off the chain reaction of grief in me. This time it was taking my grandmother to run errands. I drove her van (something my grandfather only did) and upon pulling out of the garage, I noticed my grandfather’s neatly organized garage. He had just started to put all of his nuts and bolts in little jars. He had hung several items on the wall for easy access and neatly arranged all of his tools on the shelf. He and my grandmother sold their home in Florida and moved everything back here last spring. My grandfather was in the process of merging his dual collection of items when he passed away. My grandfather was meticulous, a trait in which I can relate. I love seeing how he took pride in what little he had by caring about how it was placed. As I sat in their van, I realized he would not be able to finish organizing his garage. It would remain unfinished. His life was finished but now he had unfinished work. My grandfather didn’t leave work unfinished. That is what death is good at, leaving life unfinished.

With everyone so readily connected to one another, death is something  we can’t sweep under the rug and ignore.  I checked in on a woman who has been posting updates about a friend of hers who had recently been diagnosed with a rare form of cancer. Her friend had been sedated and clinging to life. She ended up passing away. She is in her early fifties and has two grown children. She lost her fight with a sudden disease that robbed her of her life and possibly some meaningful final moments with her family. Recently I received a newsletter from the alliance associated with my son’s disease and it’s cover story was about a 17 year-old girl who just lost her fight with the same incurable disease. It is scary and humbling. Life surrounds us with death. If it isn’t before us, it is around us. Sometimes death is one of the strongest reminders to enjoy life.

Several weeks ago my son had a seizure that stopped his breathing. This is the first time this has happened. I became so worried that I began researching how to help finance a seizure monitor for his bed and I am trying to get him on a list to receive a new epilepsy wrist monitor coming out in the spring. The concern was there prior to this incident but this made me rehash all the fears I had when he was first diagnosed. I felt like I did before I learned how to build up a wall to guard my emotions. I once again feared that a seizure will take him from me while we slept or if he were to seize away from home, I wouldn’t be there if he were to cry for his mommy. These and many other fears could paralyze my life. Just like a preoccupation with death, it could control my living but these thoughts have done something profound. Facing the fear of death and the mortality of those I love has made me want to fulfill my life. Without having to look death in the face, I am certain I would not be so appreciative of life. At the end of the day, I don’t think about the housework I have to do or what I need to plan for supper the next day, I worry if I put my best effort into making today the best it can be for my family. I think about how I can try harder to better myself for my family with anticipation. I try to remind myself that no one is guaranteed a tomorrow so if I am fortunate enough to open my eyes in the morning, I need to make it count. If tomorrow didn’t come for me, what can I show for it besides a list of unfinished projects? My goal is to find a way to live with our hindrances and find a way to live beyond anticipation. Can I live in manner in which my kids will know I fought for happiness? Can I teach them to strive to do something everyday to make life count for something more? Or will I hand over my life and my son’s life to disease and hoist up the white flag until death? Despite what made-up fantasy has us believe, death is harsh and unbiased. It doesn’t care if my son hasn’t had a chance to experience life, if I have four children that need me, or if we need our best friend. In the end, life is a blur of memories. Choose to make those mirrors into the past count. Don’t wait until disease or death rattles you awake. Wake up and live now. Finish the projects that have meaning and appreciate the outcome. Unlike my grandfather’s unfinished garage, our lives don’t have invoke sadness. Those unfinished projects he left may never be finished since no one could finish them as he had planned but we can appreciate what he did accomplish. I can use what I have learned from him and put the finishing touches on my life, even if it is just for today. Everything is worth the meticulous work, even my unfinished self.

*d*

Three is a Crowd in the Legend of Me

Everyone has a brood of exes and as my co-blogger has pointed out in her last post, running into one can be, well, interesting. I have three major exes in my life, one ex-boyfriend, one ex-fiancee, and an ex-husband. I have been fortunate to avoid all three for the last twelve plus years. Sure, there is Facebook with the occasional photo but that is a picnic compared to the awkward confrontation. Fortunately my ex fiancée (I will call him Penny Roller) moved out of town and then out of state, my other two exes are still local but I moved away for ten years, thus making a run-in very unlikely. I have since moved closer to my hometown so running into my ex-boyfriend (we will call him Duff) and ex-husband (Holes) a real possibility.

I don’t look forward to the awkward day I am face to face with my past so I hope it never happens. Running into Duff wouldn’t be so terrible. Despite my memories of his rather mopey mug, he was a nice guy and I worked with his wife after high school and I really like her. After sixteen years, I wouldn’t know what to say to him. The last conversation he and I had, we were high school freshman. Penny Roller would be an interesting encounter. We got engaged in high school and he abruptly ended our relationship. I found my own type of closure but there is too much in our past that would be hard to avoid. There are more humorous moments in our shared past as his nickname implies. He dropped out of high school and joined the army while we were together but between these adventures, he worked sporadically. I remember him rolling loose change to afford to put gas in his noisier than necessary truck to “go mudding” (yes, driving your big ol’ truck in an overabundance of mud is a thing in our state) or buy cigarettes. What I boiled down to was a literal notch in his headboard (he had quite a few). The dreaded meeting would be with my ex-husband, Holes. The darker details to this relationship are spelled out in one of my previous posts. He was the man who had obvious red flags that I somehow ignored. I married him out of guilt and fear of hurting his feelings. I ignored the moldy dishes that were rotting in his sink, the odd collection of figurines (earning him the more humorous nickname Senior Nutcracker), and obvious self-centered behavior. I didn’t want to be another disappointment in his life so I chose to turn a cheek to his lack of interest in aesthetics. Holes had a regular rotation of holey clothes and stories by the time I walked out the door. I know how he is and I anticipate an encounter would entail him telling me how terrible of a person I am.

My trio of exes are a string of examples of my self-loathing behavior. I ended the relationship with my ex-boyfriend after we dated a good portion of my freshman year. Things got awkward with Duff when we stopped socializing with friends and I began to feel like I was married at 15. I left him and began dating Penny Roller. I was taken with him, so much so that I often thought of him long after I married Holes. Penny Roller was one of the many reasons I ran away and right to Holes. I had little confidence in myself and thought I needed to settle for the dependable Holes over the Penny Roller’s antics. I didn’t give myself a chance to swoon over other boys (aside from my life long obsession with Wesley from The Princess Bride), but I did have my share of dates between the three. My legend was just a fable, tucked quietly away in the corner of my mind.

It took a few hundred half-witted smiles, several empty boxes of cigarettes, and a shelf load of odd knick-nacks later to finally break free of my trio and meet my legend. I am still amazed by him today. The day may come when I encounter one or all three of the ghosts from my past but despite what happened, I am finally confident in the decisions I have made. I know a chance encounter will no longer bubble up lingering feelings because I know I am exactly where I am meant to be. What memories I choose to hold on are the ones I can laugh at and others that solidify the best decision I ever made.

*d*

image

Wesley: “As you wish.”
Me: “Giggle, giggle.”