Mr. “What If”

Almost everyone’s life story has a chapter titled “The One That Got Away”. The story line is almost always the same, someone amazing comes into the picture, but for some reason, doesn’t stay. The reasons for separation make up the climax of the chapter. The desire to stay with this person clashes with unforeseen events that change the course of the relationship forever. The end of the relationship writes itself a cruel paradox.

Sometimes both parties know why it ended, they were in two different places in life, one or both could not meet expectations of the relationship, or maybe there was too much distance between them. Sometimes the reason is unknown. Nevertheless, that person seems to leave a hole in the other’s life or a thought that never truly diminishes. Life goes on, other relationships come and go, but what about that “one that got away”?

I was seventeen when I met my “what if”. I had just left a relationship with who I’ll call Mr. Rebound.

(me at seventeen)

I came off of a bad breakup and ran into Mr. Rebound while out with friends. He was all wrong for me but I just had my heart broke. I wasn’t attracted to Mr. Rebound, but he made it known that he was interested in me. I felt a desperation to find someone who wouldn’t hurt me in the way I was hurt in my previous relationship and Mr. Rebound said all the right things. We dated for a while but something was missing, there was no spark and I couldn’t think of a relationship with him in the long term, so I ended it.

Some time after my break-up, Mr. What If and I were spending time together. I was a bit apprehensive because I had met him before, he was friends with my heartbreak. Spending time with him didn’t concern me, but the more time I spent with him, the more I felt a change in the way I felt with him.

When I started to have feelings, I began to overanalyze everything. Did his friend talk to him about me? Could I allow myself to be vulnerable again? Would I get hurt all over again?

His friend was my first intense relationship. I was very young and I had a hard time picking myself up after the breakup. Life for me was complicated beyond this breakup, so I decided to take everything very slow. I was afraid.

I was afraid of the feelings I was developing. I was afraid of getting hurt. I think he needed more than I was willing to give. As great as it felt to feel that spark with someone, it ended rather abruptly. He told me he decided to pursue a relationship with someone else. I was disappointed. I felt like it had ended before I allowed myself the opportunity to let go.

Of course Mr. Rebound was waiting with his promises not to hurt me. And because I believed all my fears had manifested, I went back to Mr. Rebound. The truth was, I was vulnerable and he interjected himself back into my life.

I gave up the passion I felt with Mr. What If for the promises of Mr. Rebound. I didn’t have to be afraid of my feelings when I wasn’t overrun by them. Sometimes control is lost in the moment and I tried to control too much with Mr. What If.

Many describe a good romance as a “whirlwind romance”. They get caught up in the emotions like the turbulent wind of a tornado, exhilaration and fear lift in unison. I have wondered what it would have been like if I would have just let go and let myself be taken in the updraft. I know I missed out on a passionate experience that could have broken my heart but that’s always a part of falling in love. Falling in love means letting go and losing that control. Why didn’t I see that great highs always come with the possibilities of crushing lows?

That’s essentially the mantra of a good life, live it as well as possible without fear. Fear kept me from experiencing the fullness of this relationship. Fear made me go back to a relationship that broke me emotionally and eventually ended four years later.

Staying or getting into a relationship out of fear is never a good idea because when a relationship isn’t pursued for the right reasons, red flags can be missed.

I missed lots of red flags with Mr. Rebound. I missed out on what I could have had with Mr. What If. Instead I was going through the motions, trying to convince myself that the “spark” didn’t matter. Relationships are worth going all in for, but with the right person and for the right reasons.

Once I realized I may have missed out on an opportunity to fall in love, I didn’t want to miss it again. This meant my first marriage ultimately ended in divorce. I was single for several months and I never had the opportunity to try again with him, so this chapter of my life closed when I remarried almost fourteen years ago.

Life has a way of using each experience for growth. Although I wish I could have changed some things in my past, my past helped shape who I am.

Every one of us has a story in our book of life that makes us ask, “What if I made a different choice?”

“What if I took the wrong job?”

“What if I moved to the wrong location?”

“What if it could have been wonderful?”

I don’t think the “what if” is as important as living life to the fullest to eliminate as many “what ifs” as possible.

Love without fear of heartbreak because a broken heart means one loved with all of their heart.

Live each moment to the fullest because you may not get a second chance.

So this is my chapter entitled “The One That Got Away”. Thank goodness it’s not where my story ends. There were still great things to come.

*d*

Goofy Grin

I’ve been ridiculously stressed, well, my whole life, but more than usual the last several months. I’ve also done my fair share of berating myself for not keeping up with this blog or any other form of writing. I kick myself about daily. I’ve had my hands full and I know that’s not an excuse. The only viable excuse would be if I were dead, or in a coma. Though I feel like I’m ready to slip into a coma on a regular basis due to a terrible quality and quantity of sleep due to allergies that never let up, I am not actually incapacitate enough to defend not typing even the smallest paragraph. I need to take time away from my hand-wringing and perfecting my resting-bitch-face, to spill onto paper what’s sloshing around in my head. There’s a visual.

Anyway, the point of this post is not to point out my short-comings but rather why I’m lucky. It’s because I have someone in my life that has it worse than I could imagine having it and she still puts me ahead of herself. *d* surprised me with flowers at work today. I read the note and got a goofy grin on my face–much like the one on the smiley face balloon attached to the bouquet–that I couldn’t shake well into the evening. It’s these sorts of things that remind me that I am loved and thought highly of even when I don’t feel that way about myself. I’m reminded how lucky I am. There is someone who thinks I’m awesome even when I’m kicking my own ass for being what I feel is lazy. I love you, too, *d*. The flowers are beautiful and you are too!

See? This guy gets it!
See? This guy gets it!

~L~

To My Craft Wife, On Her Birthday

Today, as you are wished well for your birthday, take the sentiment to heart. Enjoy the little moments you observe so well, soak up the chance at another year. Try not to let your woes overwhelm you and remember that we all love you. Remember that despite the pain and the loss, the strife that seems set on taking you down, you’re still standing. And you are who you are largely because of these trials. Never doubt the impact you have on others and the inspiration you represent in the hearts of your children, family, and friends. Happy Birthday, Craft Wife!

Happy Birthday, fellow immature, mature person! Here's to another year of ridiculousness!
Happy Birthday, fellow immature, mature person! Here’s to another year of ridiculousness!

~L~

Wait, Wait, Wait…..

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I’m waiting in the doctor’s office. It’s apparently my thing now. Some people go out to eat, some go to bars, while others go shopping, I get to wait on doctors. I should have been forewarned about my present course of lifestyle long ago. But, unfortunately, there are many things you won’t hear once you or someone you love is diagnosed with a chronic illness.

For instance, I spend a lot of time rearranging my schedule or finding someone to help me take care of my children while I wait. I wait at the doctor’s office, hospitals, pharmacies, and if I’m really lucky, I get to wait with my ear glued to the phone while on hold with the insurance company, clinics, and my personal favorite, social security (eye roll). The most frustrating part, besides all the waiting, is knowing I will be doing it all again for follow up appointments, emergencies, or fighting with insurance and social security. It’s a guarantee. Hours of my life are spent with my butt glued to a chair dealing with something associated with my illness or that of my son.

Getting my son one of his medications got bad a couple years ago. It was so bad that I was on the verge of a breakdown. My son has a severe form of eplispsy and the best medication used to treat it was offered solely through a specialty pharmacy. This pharmacy needs a disclaimer, “Warning: dealing with our business is bad for your health”. In reality, that’s a problem with a lot of businesses and people who are supposed to help those with chronic illness, they really don’t.  All the extra appointments, phone calls, and paperwork just add to the already mounting stress of chronic illness.

So people like me wait. We wait for a break in hopes that something easier will come along. We wait for improvement in health so we can wait at the doctor’s office less often, we wait for the right medication so we don’t have to deal with pharmacies, insuance, and new medication schedules. We wait, wait, wait…..

When there is little in terms of health that we can control, it’s nice when we get a helping hand, a word of encouragement, or we are at the receiving end of a kind deed. And thank goodness those nice things don’t come with a wait…. they come into our lives and remind us we are not forgotten while we spend a good part of our days doing things we’d rather not.

If I have to wait for something, I’d love for it to be a vacation, a home improvement,  an evening, or better still, a weekend away but these things are usually physically and/or financially out of reach so that’s when the company of a good friend, a laughter filled conversation, or any time we can get to enjoy the things we love are invaluable. Chronic illness changed how I look at life and what’s important. When my mom takes time out of her day to wait with me at my appointments, my husband volunteers to be the one to fight with the insurance company, or my friend drives her shoulder to my house for me to cry on, it’s a big deal. When I feel like so much has been taken away, the little things become the big things that matter.

I know how hard it can be to find the right words when someone is struggling. In truth, there are no right words, what matters are those well intended actions. Even if you don’t know what to say, pick of the phone and try something like, “I wanted to see how you were doing today,” send a text, mail a card of encouragement, offer a smile, or volunteer a few minutes out of your day to wait along with someone like me or my son who spend a lot of time doing it alone. Don’t be discouraged if you don’t know what to say or do, being in the company of a friend is always worth the wait.

*d*

Journal of Emotions

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NEW ENTRY

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I am overwhelmed. If there was a day I am full of emotion, it’s today. Life has been too much and I am having a hard time taking it all in. Everything from health to finances has been difficult. I often wonder why it isn’t just one problem we have to deal with, but a mountain of them. Yesterday I went to the pain management doctor and he about came out of his chair when I told him my Rheumatologist was going to keep me on one medication and add another. He didn’t like the idea of me being on both simultaneously. It gave me a lot to ponder as I knew something wasn’t “right” with me.

This feeling is the same one I had before my last flare. Maybe the thought of another flare put me in a foul mood, I don’t know, but I do know the mood is lingering. I keep thinking I’m more tired than usual but that would not explain the lingering rain cloud over my head. I tried hard today to be positive, until this……
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……. a flat tire…..

We just started a layaway for our kid’s Christmas and now I wonder if we will be able to pay it off at the rate we are going.

I made a phone call to the pharmacy on Tuesday. I asked how much I’d be paying out of pocket for my medications once my high deductible insurance turned over. We recently paid off our van, but between the increase in our mortgage payment due to tax increases and my medication, we will see no difference in our monthly budget. We will still be broke. I looked forward to a tax refund but that will be paying for our mountain of medical debt and spacers for my oldest son. We just can’t seem to get ahead. I know we aren’t alone. Many people struggle to get by from month to month, but I wish this was the only thing that kept me up at night.

Sometimes I lie awake listening for my son in the next room. I worry about him seizing more than I admit. He was approved to get an Embrace watch but they keep pushing the date back for it’s arrival. It’s supposed to alert us to a seizure by using an app on our phone. I will breathe a sigh of relief when it comes for many reasons, but nighttime seizures are a fear (for many with epilepsy). He is so poorly controlled right now that any help we can get monitoring his seizures will help us determine how to treat him and how he is responding to that treatment.

On top of his difficulties, my health has declined shapely this summer. I know I am sick, I can feel it in more ways than one. If I don’t take some of my meds, I feel like I have the flu. I am tired and depressed. I keep praying and working with my doctors to get me the right medication to help with all my symptoms. One thing is certain, RA will not steal my voice.

Writing is all I have right now. I don’t work, and I am grateful for that, but it is difficult to be a one income family with extensive medical bills. I hope I can make something out of our difficulty. That is what I am about, making something wonderful out of the worst of situations. I am going to keep trying and I am going to keep praying for the ability to write pieces that will help others feel like they have a common ally in this world. It’s this girl. I’m right there struggling with you. Maybe we will see something great together.

*d*

I have decided to pick up and write during highly emotional times for me and see what comes spilling out. I will update this post with those thoughts as they happen. I will do mimimal editing to protect whatever voice I use while writing. Understand, what comes out of me during a highly emotional moment may not always make sense but I want to share those moments. These are moments I believe we all have. My hope is to put into words some of the issues we all experience yet rarely escape our lips.

Entry 1: Written while thinking about how I was going to move past my diagnoses of Rheumatoid Arthritis (RA) and Fibromyalgia. I have been experiencing pain I had not expected. I am experiencing an RA flare and I went downhill very quickly. I can’t get around in the morning without assistance because of the severe pain I experience specifically during the morning hours. I am struggling to find purpose in the addition of this disease on top of already having a special needs child with his own complex diagnoses. ~

A diagnosis makes me think about death. I can’t help it. When the name of disease dropped from the physician’s lips, I immediately thought about the worst case scenario. I worried about every unfamiliarity, drug, and all the new phrases thrown my direction in a language I didn’t understand. I didn’t just cry, I wept. My tears came from such a deep place inside me that it almost felt as if a piece of my soul were escaping with them. Days were blurry. All I remember is the hurt I felt after knowing nothing will ever again be the same. There will be things that will no longer be able to be accomplished, words that will now remain unspoken, and dreams that will now have to be relinquished. I was in mourning, yet I was very much alive. Mourning my life while I was still living was a contradiction. I struggled with all things and I wanted to give up on finding myself again.

Then creeped in a small glimmer of light. It was hope. It was the knowledge that life is not over but still meant to be lived. I could not live my days as if it were already gone. If I kept choosing to mourn life, I had already given up on hope. So I chose hope. I chose faith. I chose to live. I chose to use those words that choked meaning out of my life to find a new purpose.

I see who I am. I see who I was. I had to change. I wanted to stop distracting my life with things that kept me from fulfilling this life. When life changes so dramatically, the span of a lifetime shrinks. There is no forever, there is only today. There is today to make a positive change in the lives around me. There is today to show others love. Death usually stirs up these same feelings in so many people but after waking away from the casket, much is forgotten. What changes are made are often temporary and life goes back to the same distractions taking away from a life rich with meaning.

Fear of death also ruins many things. Death hurts. It especially hurts when we have loved the deceased so much. To avoid that deep anguish, we pull away to protect ourselves from feeling that way again. But pushing away others to avoid future pain limits the joy that should be experienced now.

I have been depressed, have had panic attacks, and worried myself into distress over the unknown of diagnoses and of life. In essence, I robbed myself time to trust, the ability to have faith, and additional moments to love.

I essentially drew myself so close to the only dark spot in my life that it shrouded every last bit of light. I decided to hide in the only dark corner and hold onto my fear. I also hid there alone. I wanted to stay in my pity and cry about how unfair life had become while refusing help. It felt good to finally take a hand and say, “I can’t do it alone.”

Asking for help is a hard thing to do but it is a freeing moment. I didn’t have to stay alone in my dark. I could embrace those trying to pull me into the light. In the shadow of life is no place to be. When facing a challenge, go where the path can be seen, don’t walk in the dark. Choose to press against that darkness and love despite the hurt. Pull those hands close and love those who follow you anywhere. A lifetime of love is worth any eventual pain. Pain is better handled when leaning on love. No diagnosis or pain is worth giving up this life. It may make it harder. It may be lonely but run toward the light. Run toward love, don’t stop living because of one speck of darkness.

*d*
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Beauty in a Different Wrapper

We sat alone and waited for the neurologist. “My son has a neurologist,” I thought, “how did this happen?” We stared at the computer sitting on a long table. Shortly we’d be able to see what was causing our baby’s seizures. It was like waiting to unveil and unknown enemy. The neurologist would soon come in, press a few buttons on that computer, and show us what was so different about our little boy. He had a number of different tests over the two days we had been at the hospital but only the M.R.I. would allow us to actually look at what this Tuberous Sclerosis Complex was doing to our baby. The name was foreign to us but yet it was suddenly going to be a part of our lives. A mere three days ago we had a normal little boy but now we had that little boy plus a rare disease unknown to us and most of the hospital staff.

We spent several hours on the phone trying to explain what our little boy had and what it meant for his future but we only managed to muddle through the numerous conversations with family and friends. Whatever this Tuberous Sclerosis was, I hated it and I wanted no part of what it was doing to my son.

My husband and I looked at each other. We gave one another the same look; the look that asks, “What are we going to do?” I am sure I had just as much desperation in my eyes as I saw in his. We felt defeated, broken, and very much alone.

It was in those moments after receiving that terrible news that our life seemed to stop so abruptly. It stopped, we stopped, and for the first time, we had no clue as to where our lives were heading. The addition of this terrible knowledge gave us a heightened awareness of how normal the lives were of those same family and friends we had those muddled conversarions with in those first few hours after we arrived at the hospital. Our normal was gone. I realized everything had changed and life would not go on for us as it once did. We were handed back our life in shambles as it was our turn to get the terrible news. Why did we have to be the ones? Why did our son have to be sick? Things like this don’t happen so close to home, let alone in our home. What was worse was the terrible feeling of isolation. No matter who called us, hugged us, or offered comfort, no one could stand in and take our pain. The gnawing yearning to find someone, anyone who would intimately understand our pain was overwhelming. We didn’t want to feel so….. alone…..

Last year I had an idea, I wanted to start a blog. At first, I really didn’t want to share it with the world. I wanted to keep it within a limited reach. My friend and I loved to write and what better way to turn what we love into a little more. Over the years I have wrote a few thought-filled pieces for my Facebook friends updating them on the condition of my son but the response was minimal at best. I thought that maybe I should be the one reaching out to others searching like me.

So we decided we would write. To keep our little blog confidential and comfortable, we began to use just an initial as our names, *d* and ~L~.  This was good for many reasons; we could have the freedom of writing without backlash from hyper-critial people and if we were at the receiving end of negative feedback, they would be cutting down these alternative personas of us, not the actual us, my friend and I could be viewed as equals in our pieces and we would be able to blur the lines of our differences and write cohesively, and hopefully readers could identify with us much easier. We wanted anyone to say, “Yes, I could be *d* or ~L~ and I feel the same way”. A few months after we began our venture, I decided to submit my work and try to reach a little further out into the world. Since my first submission to The Mighty in June, I have twelve pieces on their site and one of those went on to be successfully picked up by Yahoo Health. I am amazed my voice has made it that far. But there is so much more we want to do. There is a definite purpose in our writing, maybe we don’t fully understand what it is, but I know what I would like it to be….. I don’t want anyone to feel as alone as my husband and I did when our son was diagnosed. I want others who feel alone to find a common thread in our writing. The story of my life is a mess but I feel like I need to share it. I want others to know there is hope and happiness in what seems to be the most difficulty.

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I am often in awe of humanity. It’s easy to get tangled in all the bad news shared on television and social media. It makes me sad when stories highlighting the resilience and goodness of humanity occupy only a few short minutes of our day. We are beautiful creatures. My faith teaches me that we are perfectly designed and created but I also understand that my opinion is as different as we are from each other. Nonetheless, we cannot deny the genuine beauty we all possess. We have and inner strength and beauty that makes us move forward in the face of the most impossible feats and dares us to move even further to explore ourselves. Despite the vast array of our own kind, we hold many unspoken, common bonds. Most of us want commpanionship, we want to feel loved, and we are looking for ways to become better versions of ourselves.

No doubt evil has encroached on the heels of humanity. It tempts us to turn our backs on one another, deprive the needy, and think only of what is good for ourselves. The battle of good and evil will exist long after our generations have passed so that means we have to work that much harder, no matter what you believe, to ensure humanity can continue to shine as a beacon of love and grace.

Finding our purpose isn’t always easy. As a child, we think about what we would like to do when we grow up. When we listen closely to our little ones, a good majority of them want to help others in the future. As we grow we learn and change our opinions of what would be best for us. We also think about if what we want to spend the rest of our lives doing is best for us. We take into consideration finances, schooling, and where we would like to live. But we cannot forget those first thoughts we may have had about our future. The possibilities were endless. Today we may not want to pursue a career in service to others but we can still do great things for each other. These acts may only require a moment of your time but they can impact the world one moment at a time for the good of our future.

I want to write. I want to expose the raw nature of my life and sometimes open myself up to critics to be a voice of hope. While I have come to terms with the very real possibility and reality that I will be at the receiving end of negativity, it all becomes worth it when I have successfully reached across the small screen of my phone to put out my virtual hand to another human being that needs to hear the words, “You are not alone.”

We were not meant to be alone. We were gifted one another. Yes, it’s hard when we are gifted with something that is sometimes difficult to understand or appreciate. Sometimes those gifts aren’t as we imagined but once we take the time to unwrap what we have, we can see the goodness under any wrapping. We sometimes have to tear off shame, guilt, fear, and a common flawed nature to find the treasure inside. We have to take the time to understand that an unexpected gift is sometimes the best gift of all.

Life comes with shocking and truly terrifying moments. These moments can sometimes pull us to the edge more times than we would rather admit but if we are all honest with one another, we would say that our toes have all been dangling over that edge. We have all felt the disparate loneliness that we must face alone. No one else can stand in if and when the word cancer, disability, or death is directed at us. No one else can stand alongside the casket of our precious loved one and receive condolences. There are times when we have to stand alone but that doesn’t mean we have to be alone. We can find comfort when a hand reaches out from across that chasm and a voice says, “I have been there too”.

Eventually those voices and hands that reach out to grab us at our most vulnerable moments are those hands that welcome us home. Home indeed can be made of walls, windows, and our personal memories but home is a place where we feel like we belong. I recently had a conversation with my aunt who has struggled most of her life. She, like many people, have felt isolated and alone because she was different. During a recent conversation she said, “For years, all I wanted was my family.” It took years and a lot of heartache but she has found love and acceptance. And she feels like she has a home. She has a place where she is loved beyond the wrapping she had felt was too different to love.

In the reach of our progress, it is sad when there are people who still feel unloved and alone because their wrapping. They are those who identify themselves as “different” or were gifted something precious in a different wrapper. We must not forget, when we are all stripped down to the core of our humanity, we want to be loved, we want to be accepted, and we have fought for a place to belong. So don’t believe the headlines that scream to the masses that life is only for those who come from a predetermined mold. Humanity is for everyone. Life is meant to be cherished and enjoyed and you don’t have to fit a hypothetical criteria to do that.

We learn to grow and truly appreciate what we have when our toes are dangling over the edge. It is then we look back and yearn for that solid ground. Too soon life can change and you may be asked to break the mold. If that time comes, take all the strength of humanity and break it across that divide. Will you help bridge the gap and fill the void with all the wonderful things that make you different and a beautiful part of us all?

*d*

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Stay Tangible

I can remember what the term Best Friend meant when my age was still a single digit or long into the doubles. It was whoever you liked the best at the time. I’m not sure when that superficial notion dissipates, and I know that there are people older than me that still believe that. I can’t really pinpoint when I realized what having a “best” friend really meant but I guess to me it means no amount of distance or disagreement can change how I feel about that person. It’s like having a spouse, that’s not my spouse (but who would grow old with me and my 30 cats if for some reason we both became spouse-less). It’s unconditional.

crazy cat lady
Something else that I’ve realized is that best friendships are not necessarily exclusive. My definition of best friendness allows for more than one person to fill the role. While there will always be that one person that survived me during my most moody and awkward teen years, and vice versa, that doesn’t mean that new friendships can’t become just as bonded. When you find someone you can trust, someone who makes you better and tears the duct tape from the mouth of the voice in your heart, you cherish them and hold on tight.
But this isn’t about somebody’s traveling pants or divine secrets. It’s about how if I’m not careful, all that will remain of that solid pact of mutual adoration, is a thumbs-up on a newly posted Facebook photo. The internet has given opportunities, where there were next to zero, insights I may never have had otherwise, and the choice to be the best, or worst, version of myself behind the comments I wield. It’s allowed me to stay in touch with people I might’ve otherwise lost contact with, and to find again, the ones I lost years ago.
But a side effect of all this digital interaction is that what was once a tangible human being becomes a series of “lol’s” and emoticons. The constant connection I feel with the web and my smart phone give a false sense of friendship. It sets me up to go months without actually seeing someone and to somehow be okay with that.

thumbs down
Well, until this morning. I had another one of those face-slapping epiphanies while I stared at the chat window on my computer screen. Messages from ol’ Trixie (from Silhouetted In The Background), making me laugh mostly because I could hear the exact way she’d say the words. I’d “lol’d” and that got me thinking about how our friendship had been relegated to interactions of the electronic kind. While it hasn’t happened yet, I started to worry about forgetting the way her laugh sounded. In the years passed, we may not have always had time for each other but we still talked on the phone semi-regularly. There’s something about hearing someone’s voice that all the texting and messaging and commenting and poking will never be able to replace. I almost typed, “I miss you.” Instead, I took my turn in Words With Friends.

Like hell! We never let each other win! Battle to the death!!
Like hell! We never let each other win! Battle to the death!!

I will never let her go. Of that, I’m sure. What seems unclear is if it will only be her cleverly typed responses on social media and an occasional email that will be the friend that I cling to.
Life is hard right now. I’m diving into my new career and she’s excelling at hers, all while raising a family. But when will it get easy? It seems like I was citing the hardships of existing several years ago and for totally different reasons. I don’t think life ever gets un-hard.
I can’t rely on the hope that she too has had this epiphany, that all the people I’m close to in the physical world as well as the virtual understand how important it is to keep ourselves tangible. If we dissolve into electronic hearts and smileys, I want to know that I did my part to reach out, to touch—to literally laugh out loud alongside someone who knows exactly how to make me giggle.

~L~

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