Thoughts After the Pain

While we were at Texas Children’s Hospital (my son was having neurosurgery work-up) we had at least 8 hours to occupy while my son had tests run on our last day there.. We passed by the chapel many times that week but I never had time to stop. The opportunity seemed right so my husband and I sat in the little chapel. It was round, the ceiling had tiny lights that looked like stars, and the lighting changed over the course of ten minutes or so until all the lights dimmed and the tiny stars seemed to twinkle. I admired the quaint little room for the ten minute round of lighting changes. As the lights went from dark to light, I felt a familiar presence I hadn’t felt in a while. It was the feeling of the most loved of friends. It’s the one friend that knows me like no one will ever know me and loves me more than anyone could ever love me. It was the presence of the Lord.

I have always thought of myself as a woman of great faith. I had inspiration to give to others in their times of need and I believed God could cover and heal any hurt, but for the past seven years, the hurt in my own personal life had grown and finally gave way to more doubt than unfaltering belief. Since my son was diagnosed, everything became more difficult. The older he got, the harder it was to deny what the disease was robbing from him. He has been denied the opportunities that naturally come to other little boys his age. Despite it all, my husband and I continued the same plans to grow our family as we had planned before either of our boys were born. He and I were blessed with our two daughters. Our life was indeed a mixed bag of blessings and sorrow. After his diagnosis, we would be blessed greatly with things like when our girls were born, but were faced with things like mounting medical bills that strained our finances so greatly that we’d barely were able to afford groceries for the month, if at all. Life felt more like a rollercoaster than the dream we had once envisioned.

Then I got sick. Many probably thought I became incredibly selfish when I anxiously wanted to find a cure for my Rheumatoid Arthritis when my little boy was still suffering. I may have been. I had spent the last seven years fighting for him and I didn’t want a disease to change that. I also didn’t want anything to take me from him, or any of my other children. I wanted to be here to experience the joys and sorrows because this life was meant for me and no one else, despite how much I wanted to rid our life of the lows we frequently experience. I wanted so badly to assure my place on this Earth with my family, yet my faith was weak. I didn’t understand why I had been handed this illness in addition to everything else we were given. “Why Lord do you give me a disease that is wrecking my body when you know I have a son with epilepsy? Have you forgot I NEED to physically assist him?” Enough was enough and I could not understand this cruel addition to our already full plate. I had no encouraging words of wisdom or anticipation of His healing. I felt lost and alone and I felt like He had abandoned me.

Many people can quote words of wisdom like I once did, or jump out of bed with boundless enthusiasm and a positive outlook when their life doesn’t feel like a constant tug of war. It amazed me how many people became judgmental and claimed “they would have done it better”. It’s like the first time parents who sit and judge those who already have children, claiming they will get it “right” just to eventually find out that parenthood isn’t about getting it “right” as much as it is about doing the best you can. Once someone is no longer sitting on the sidelines but rather in the situation, the answers aren’t so clear and it isn’t as easy as once thought. This is where compassion and understanding grow. It grows out of the times we are at the top of the rollercoaster of life staring down from the top of the hill almost sick with the anticipation of the next steep decline. It’s when we are facing fear, and maybe the unknown, that we possibly have our best understanding of those people we once judged. To be honest, I don’t like the person I once was, I lacked compassion and understanding. I still don’t like many of my own qualities and I know I have a lot to learn, but I do know most people only desire understanding. So this was my life; I felt like the Lord had abandoned me, I feared constant judgement, and all the while my disease, as well as Aiden’s, was getting worse. I was sick of the rollercoaster and wanted off.

One of the worst days I had this last week in Texas was the first day we were admitted into the Epilepsy Monitoring Unit. We had been running nonstop since we left home. I was already hurting but when I laid down in our son’s room (on the tiny pull out sofa barely big enough for Doug and I), the pain I was already in got much worse. Nothing I could do was enough to ease my pain. my husband rubbed my hands and wrists until I fell asleep but I eventually woke and crawled into bed with our son. His hospital bed allowed me to sit up a bit and we were already playing musical beds as we adjusted to our new surroundings. There is something more than cuddling next to him that gives me comfort. I feel like I have been allowed to understand him more since my own diagnosis, and maybe he understands me, you never know…  It is a blessing and a curse because I often wonder if he feels pain like I did that night, yet he struggles to communicate. Now I am more aware where I wasn’t before because I have been allowed to suffer. My eyes have been opened to many things since I now physically suffer.

So that afternoon when I felt the Lord’s presence so strong, I was reminded that we aren’t guaranteed an easy life. Many children in that very hospital were facing much more than I. You don’t have to be a Christian to realize this. Nowhere are we told life will be as we wish but we are given one gift, that is life itself. Life is precious. I need to accept that my life will never be free of pain, physical or emotional, but I am given the opportunity to wake up each day. Some would finish this by saying “it’s what you decide to do with it that matters”, well, I disagree. I often don’t have a choice what I can do with my day. It has been at the mercy of one disease or another for over seven years now. I just can’t wake up with a will to conquer over my disease. I can’t will my pain away anymore than my son can stop himself from having a seizure. We deal with what we can’t control first and then we decide what we can do from there. Things don’t change just because we want them to change, so reminds me of my need for people and a God who understand.

My fear of my disease has been mostly about my own fear of death. Although my faith teaches me that there is more to life after death, I was afraid. I began to allow this fear to control my faith. It was a reminder of Jesus’ prayer in the garden before his own death that allowed me to once again embrace my faith. Jesus, knowing the outcome of his own death and what it would accomplish, still agonized over it so much that he sweat drops of blood. Whether this is a metaphor doesn’t matter as much as the fear even he had over the events before him. God wanted me to know it’s okay to feel unsure of what is before me.

My son and I will still struggle but we will do it together. The path we face is unclear but we are reminded of his presence in quiet moments in a small room with twinkling lights or through people put in our lives for a reason. We are either on the sidelines watching the rollercoaster of a life someone else is living or we are in the front seat of it, it’s the understanding and unconditional loves that helps us get through because you will never know when you will be in the unexpected. All you have is right now, the precious life you are gifted. I’m going to take it, pain and all because sometimes pain is the only way God saves us from ourselves. Pain is a despised beauty that can shape our understanding and allow us great compassion. Just because it isn’t understood doesn’t mean it has no purpose. I’m grateful I still have today to learn.

*d*

To Those Who are Different

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If you are reading these words maybe it’s because you saw the title and thought, “That’s me, I’m different.” Maybe you said it with sadness. Maybe you feel like your differences have set you apart from the rest of the world and you feel alone. I want to tell you why you should say, “I’m different” with enthusiasm and joy.

At some point in history we were made to believe that it was acceptable to believe in a cookie cutter type of beauty. Beauty could be defined by some as a lack of “imperfections”. The world has gone so crazy over this concept that the appearance of people already believed to fit into the acceptable category of beauty is altered. Bodies are trimmed to a desired build, hair is colored, cut, or even added to obtain “perfection” and even the face can be altered to fit the mold. Everywhere we look we see some mythical idea of beauty. By accepting these preconceived ideals, we are denying ourselves the opportunity to witness the true beauty around us. Natural beauty. Beauty that shines so brightly on the inside, it dulls the watching world.

I want you to imagine what it looks like when you step out your front door. When I step out of mine, I step out onto my front porch. I have a swing and a wicker chair there. I can see my flowers, hear the cars driving by on my busy street, and I can barely see the horizon of the sky. The quaint buildings of our small village don’t allow me to see the wide angle view of nature but I still get to see several types of trees that line the main street in our village. The smells and sounds differ from day to day as we are a community that thrives on farming and livestock. I frequently hear a train roll through as we live only a block from the tracks. I love where I live. How about you? What do you see? Maybe you live where I have always dreamed of living, slightly isolated in a valley with a majestic view of a mountain? Or maybe you live where you had always dreamed, in a city alive with the noise of life. Maybe you don’t like what you see and are still dreaming of being elsewhere. No matter where you are, there is something to see once you step outside. Nature. Nature is all it’s own and it has been here long before we changed the landscapes outside our doors. It is full of splendid diversity. We can photoshop and edit pictures of nature but nothing compares to the real thing. A photo lacks the depth of being surrounded by the actual beauty of nature. Would the mountain look less majestic if a rock were to crumble off the face? Is the stream less blue if the leaves of fall float on its surface? Do we refuse to gaze upon the rise of an ancient tree because it’s bark has been worn from the animals that shelter in its branches?

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If your answer is “no” then I ask why our own differences are seen as anything less than beautiful. Why is a smile less warming if the face that wears it has a blemish upon it’s skin? Is the body any less than amazing just because it rests in a wheelchair rather than on two feet? Why is a the shaved head of a cancer patient less desirable than that of someone with a full head of hair? Beauty can no longer be defined by the masses idea of beauty, but by nature. The differences of all of us are natural. Why are we trying to change that? There is so much to appreciate when we step out our doors and take time to look at the unending differences of nature, isn’t it time we do the same with each other?

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Beauty isn’t just what you see in a magazine, it is the resilience of the human spirit, the beauty in our personal journey. Beauty is what the journey teaches us and how it transforms us from the inside. Beauty is the scars we bare from physical and emotional wounds earned in battle. True beauty is held by those who have been stripped to their soul and have seen life in a new light. Beauty is not worn on the face or seen upon a pouty lip, it is deep within the heart. Beauty is carried by those who have given all of themselves and have opened their eyes to what really makes taking a breath priceless. Indeed it’s seeing how wonderful it is to be a unique individual.

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We are on the brink of redefining so many things, it is about time we start redefining this archaic definition of beauty. It is time we love what makes ourselves and others unique. It is time to wake up and look at what makes you different and say, “no one else is like me” and celebrate it. Don’t be discouraged by differences. They really aren’t differences, diversity in all of us needs to be as natural as those in nature. The rocks will crumble on the mountain, so too will our bodies become brittle, but they are both beautiful. Not all birds have the ability to fly, but they are still birds just as we are no less human if we cannot walk. Hundreds of different flowers lining a hillside are not dedined as ugly because each one is different so why are some defined as such?

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If you feel different, celebrate because you were meant to be different. Every person was meant to be unique. To define beauty in a narrow perimeter is unnatural and ridiculous and it needs to stop. We are part of the beauty and artwork of nature but yet we define our beauty on different terms. It makes no sense.

If you feel too different to be beautiful, please know that you are special because there is no one like you and there never will be again. You are like one of those thousands of flowers that grow wild in nature, without you, the hillside wouldn’t be as splendid. You are splendid, because you are you.

*d*

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*

Beautiful as a Flower

I love my flowerbed. Around March, I get excited about the endless planting possibilities. My favorite color is pink so I usually find a variety of shades and flowers in my favorite color. As much as I adore the color pink, I also know I can improve upon my flowerbed master piece if I added a few complimentary colors. With creativity fueling my spring time thoughts I forget one thing, I don’t live alone. I have five other people who may interject their opinions and since I want to teach my children to share, I must also share. “Darn it!”

This year when I went to the store where I wanted to purchase the perfect pieces to my creation, the kids also came along. If you have ever been shopping with a kid, you know they either want to buy or help pick something out. On this trip, they wanted to put their favorite picks in the flowerbed and plant them themselves. My oldest daughter won over my heart as she asked to plant additional pink flowers. My oldest son decided he wanted orange marigolds. I don’t like marigolds. It isn’t that I don’t like seeing them, I just don’t like seeing them in my flowerbeds. He wanted the dark orange, as to exclaim, “These are mine!”.

“Darn those orange flowers,” I thought. “Why wasn’t his favorite color green like it once was?” I knew how important this was to all of them so I needed to let go and find a way to make us all happy. Then I remembered something about myself.

While planning my wedding ten years ago my husband and I went to a department store to add items to our registry. The woman helping us was probably old enough to be a grandmother. She was sweet like one until she asked us if we wanted to register towels. I was reluctant as we had already purchased towels for the apartment we would share after the wedding. After some pushing, she won over the approval of my husband to register towels. She then inquired of us what colors we were using in our wedding decor. When I answered, “none,” she got annoyed. I explained that I had seven bridesmaids with seven different colored dresses and I used several different shades of pink for the bouquets. She made me feel like a criminal for not conforming to tradition. I wasn’t going to change because she disapproved. And with that, I registered every variety of color towel I could find.

My son was like his mother, different and not bending to conformity. I planted his flowers next to the walkway leading to our house, they look beautiful. I see how they pop out and exclaim, “Different is beautiful!”

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Think about the sky. On most occasions it’s blue or maybe gray, but at sunset, it is sometimes painted in brilliant colors. Hills and roadways can be lined with vivid wildflowers. These are most picturesque, and yet, they are naturally occurring in nature. My favorite is seeing tiny infants grow into unique individuals with distinct personalities. Nature is beautiful because it is different, and so are we. Whose standard are we comparing ourselves to anyway? Do we really all want the same hair, skin, and shape? That would be like me missing out on the surprising beauty in contrast I found in my little flowerbed and it only took a simple change of heart for me to truly enjoy it.

*d*

P.S. After my grandfather passed away, I framed a picture of he and my grandmother’s wedding. She had four bridesmaids in four different colors. I guess I take after someone too.