If a Photo Tells a Story

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Here we are, my youngest son and me. It was as uneventful as it looks. We were waiting in the van for Daddy to come out of the grocery store. My buddy said he didn’t want to go in so he sat with Mommy. He did get anxious while we waited so I decided to distract him with one of his favorite activities, taking his picture. “Cheeeeese!!!” he said while sporting his best cheesy grin. Of course I didn’t like how I look in any of the photos. My hair has been falling out at breakneck speed lately. I also noticed his hair was getting a little long. I am glad his medication hasn’t been doing to his hair what my medication has done to mine. Anyway, he was overdue for his haircut. Although, he’s been doing better at getting a haircut, I thought I’d let him go a little longer before we’d give him one. Autism and haircuts don’t mix well at our house.

That’s how life is for us, things like a haircut that seem simple usually have a story behind it, like this photograph. What you don’t see in this photograph is how swollen and painful my knees were that day and how bad my shoulder hurt. My Rheumatoid Arthritis was causing me a lot of grief. The only other time I had left the house that week was to pick up my oldest son from school. By this time, I was anxious to find any reason to leave the house.

Leaving the house wasn’t what it used to be and I was wondering if I should apply for a handicap placard. You see my cutie in this photo has had a rough life. Here he is at the end of a very rough summer. He has been weaker than usual because his seizures had been increasing. He didn’t want to go in because he had a few seizures that day and he was weak and a bit tired. I wondered if I should get a placard for the times he may want to go in and a long walk to the store would be too hard for him. What about me? Some days I can barely make it down my hall to the bathroom but I worry because neither of us “look” handicap. I had a crazy vision where someone deciding to do their own sort of “justice” was yelling at me for parking in a handicap spot as I unload my kids since I may not give the world some sort of visual confirmation of our need for a placard. There is no membership card for a chronic illness club. I guess it’s best I wait. We’d be okay a while longer, I guess.  I try not to take the kids out alone, it’s too hard on my body. So I thought about another topic; how sad this summer was and how we really didn’t do anything fun. I apparently wasn’t being very positive on this day.

My thoughts were interrupted by my son spitting. Yes, he has a bad habit. I’m not surprised. He has autism and epilepsy, and I have Tuberous Sclerosis to thank for all of that. He does things to make his Mom squirm, like most kids do, it’s just a bit harder to convince him to give up a bad habit. I try to be as patient as I can because I know he has a lot going on. I am not the master of patience yet, but I was getting a lot of practice in the parking lot this day.

He wasn’t interested in much that evening, including his iPad. When we are waiting for a long stretch I usually play a movie for the kids. We got this van specifically for the DVD players. Unfortunately they stopped working. Not great news for me. It’s helpful for times like these when I am at the receiving end of spit. There would be no way we’d be able to fix the DVD system so I tried not to think about it. It would just make me mad. I pulled out the next best thing to the DVD players, my phone. Technology can sometimes be grand and seeing himself on my phone is always grand for him. We took our picture together. We are two peas in a pod, he and I….

The course of my disease is eerily mirroring the one he has already taken. He took a medication that required eye exams every three months to check for vision loss. I am supposed to do the same but we don’t have vision insurance, so I am hoping for the best. He moved on to another medication after that one failed. It is used to treat cancer. He has to have labs done every three months to make sure the rest of his body is okay with the medication. I’m right behind him with Methotrexate and looking to see if I can start, and most importantly afford, to continue to take it after the first of the year. With all of the gloomy thoughts, I’m thankful his smile can put a smile on my face.

I flipped through the photos we took and wondered if my face looked a bit more round than usual. I had been on predisone for a while and I’d rather blame the medication for any noticeable fullness in my face instead of my late night snacking. I noticed how tiny my son looks in the picture. We were at the store so his Daddy could go in to buy him his breakfast shakes. It’s the only thing he will consume consistently. We buy them to supplement his diet. It isn’t cheap but it helps him maintain his weight.

That reminded me to check our bank account. “I hope there is enough in there to buy what he needs,” I thought. I sighed and took a long look at the summer sun. It will be sad to see it go. I wished we both felt good enough to enjoy it. We did miss a lot but we do have this picture together. We can certainly look the part but rarely does anyone really know what’s behind a photo.

There is usually a story behind our photos, as there are stories behind many things in our life that no one knows about. I’m smiling but I am always thinking about our health, money, the future, and sometimes regret. I try not to be negative but it’s hard not to be on occasion. The great thing is that he can always find a way to remind me how to be happy despite the flurry of thoughts that often bring my spirits down. It’s as simple for him as taking a photo with his very best smile. Although it won’t be that easy for me, I am certainly going to give it a try. Someday we may look back at this photograph among others, and I want him to know there was a genuine smile on my face, and he was one of the reasons why. I am blessed for every last moment, even uneventful ones like this time when he and I can take a moment, forget our troubles, and smile. “Cheeeeese!!!”

*d*

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*

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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A Talk on Sunday Morning

The following is the talk I gave at church last Sunday. The pastor had a sermon on joy and he asked me to share something. I am so thankful for the opportunity. I hope I will be able to do so again.

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When is the last time you have been uncomfrotable in the passanger seat? Maybe it was with someone who had the worst sense of direction or instantly gets upset the moment they miss a turn or gets lost. I usually don’t mind the passenger seat of a car but I do not like to be the passenger on a plane. In either scenario I don’t have full control but at least in the car, I can possibly help navigate the driver and myself back to where we need to be, unlike the airplane in which all my trust is supposed to be in the pilot. If he gets lost or a problem occurs, I have no choice but to hang on and pray we get back on the ground. In the last few years I have felt like a passenger on a haphazard plane ride.

You see, ten years ago my husband and I set off for this fantastic journey of married life. We were so excited. We made plans to see and do all kinds of wonderful things but it didn’t take long for us to wonder if our pilot got lost. We took detours through infertility, postpartum depression, and incurable disease, twice. I was pretty patient with all the non-scheduled stops but I eventually became anxious. I had never been to places like this before and I had no idea, and obviously no say, in where I was going.

It was during our first detour when we felt we were on a flight plan that couldn’t have been meant for our life so we prayed, “Dear Lord please help this seriously lost pilot find his way and put our lives back to where we think it belongs.” We were elated and thankful when He answered our prayers and we had our first child but shortly after his birth I had complications. We both became fearful when we realized we were again lost. It was around this time we were also realizing prayer was becoming a valuable compass in our journey and we became to appreciate the way in which God guided us. He were drawing closer to our navigator and we were experiencing a new kind of happiness.

Seven years ago my husband and I took the biggest and most frightening detour of our marriage. Our infant son was diagnosed with a rare and incurable disease. We never anticipated that our flight plan would go this far off track. We were convinced we were headed in the wrong direction. We cried and pleaded with anyone who would listen. We’d be only happy if he’d be healed and we could go on living the life he and I had planned, with healthy children. We didn’t deserve to get so off course…… We once again pleaded with the Lord to help but our son was not healed. Instead God gave us the strength and wisdom to help us navigate our new surroundings but we still weren’t happy with that pilot.. Little did we know that we would experience a different kind of healing.

Then December came and I may as well have been sucked out my window. I found out that I too had an incurable disease. In the proceeding months my symptoms began to spiral out of control and so did I. I also made the decision to send fear up to the cockpit. I put all my trust in fear during this trip and it took over. I handed fear the controls to my life and I blamed God for it. I was tired of this kind of trip and I wanted off. Whoever thought giving an incurable disease to a mother of a special needs child obviously had no idea what my life was all about. I NEEDED to get better and I wasn’t getting what I wanted fast enough through prayer, negotiations, or hard work so I decided to have words with the pilot myself. Who in the world was driving my life into oblivion? I stood my ground and went right to the source. It wasn’t fear sitting in the cockpit, it was Christ. The whole time.

My life wasn’t going off course at all, this is where my life was meant to go and Jesus remained at the controls. Only in my desperation was I was ready to see Him and that was when I had the “Oh….. Oohhhh…..” moment. Every time I complained about the journey of my life, I was complaining about Him, every time I stomped my feet and said I knew better, I was claiming to know better than the Lord of the Universe, and what do you think happened each time I sent fear up to the cockpit to take over the job only meant for Him? Jesus remained steadfast until I realized who was really in control. You see fear never really had a chance because I put my trust in Him a long time ago, the only thing I managed to do is invite myself to an additional needless journey with fear. My doubt made me rely on other things that could never get me where I needed to go. Although I thought I knew what was best for me, He knows me better. You see, without the detours in my life, I’d have nothing special to share with you today. He planned, navigated and piloted my journey so He would have the glory and I would always reach joy. Let me repeat that, He wants us to always reach joy. That is His plan for you, to reach joy no matter how off course you think you are. He doesn’t need your guidance to give you joy but it helps when you let him have the control. My moment came when I finally heard Him say, “be obedient, I’ve got this.”

My life has veered in directions I would never have anticipated ten years ago but it has been more joyful than I ever could have imagined, and yes, that is despite of those times of trouble. It is in those times of difficulty when He does His best work in me. He wants to do the same for you. No doubt He wants to do all he can to bring you to joy, He has already done so much to win your heart.

*d*