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*

Mary, Did You Know?

There are many things to think about when recalling the Easter story; self sacrificing love, victory over death, fear, sadness, forgivenes and much more, but this Easter I want to focus on one small figure at the foot of the cross. Mary. “Now there stood by the cross of Jesus his mother, his mother’s sister, Mary the wife of Cleophas, and Mary Magdalene.” John 19:25 (KJV)

There she stood at the cross, the foot of which was most likely soaked in blood. I imagine the small divot where the cross was pounded into the ground was also pooled with blood. I can see her tear soaked face looking up, squinting in the sun, trying to catch a glimpse of her baby. She probably saw no more than his chest painfully rising upward while he was struggling to breathe. I can imagine her getting as close to the cross as she could, possibly soaking her own clothes in his trickling blood. Maybe it would have been just enough for her to feel a tip if her finger on his toe. A small touch that would say, “Mother is here.” It wasn’t likely that she would have a chance of touching any part of him, but at the very least, she probably came into contact with his blood. He was beaten severely before they nailed him to the cross and the scene that beheld his mother’s eyes was no doubt horrific. But she was his mother and that’s what a good mother does, she’s with her children in their time of need. She probably got as close as she could so her baby would know mother was there.

I know how much it hurts me anytime my children are hurt. In about a months time my youngest son will have neurosurgery, no doubt the reason why my Easter post took this topic. I can’t imagine the moment my little boy gets wheeled back for surgery without tearing up. I know my son will be in the care of the very best neurosurgeon but it doesn’t relieve most of my worries. I will have the obvious worry until I can touch him in recovery. I will feel relieved once I can touch my son and let him know, “Mommy is here.”

There is comfort in those words, “Mommy is here.” I find it a beautifully designed plan of God’s to allow the Son of Man to be born of a woman. He was God with a human mother and by every description of her, she was a wonderful mother. She was loving, honest, and faithful. She obeyed God with no thought of herself when she was told she was with child. She knew she was a virgin but what would her husband Joseph say? How did she know he’d still take her as his wife? Did she worry about these things when God asked her to carry His holy vessel? We will never know her intimate thoughts but she knew she was going to participate in a plan that would forever change humanity. I think about that when I look at the difficulty I face. My problems will not change the world and my plans will not be recounted for generations to come, but yet, I worry. I don’t think I have the faith Mary possessed. I know I am not the woman of faith God needs me to be, but I’m trying. I also know God has not asked me to sacrifice my son as he did Mary. What does this story of mother and son mean to me? Can it also have meaning for you?

I can only imagine what was also going through Mary’s mind during the crucifixion. There was little detail regarding Mary during this moment in time, but let’s try to stand with Mary and look at it through the eyes of a mother. Here she stood at the foot of a cross, watching her bruised, beaten, bloody, and dying son struggle for his life, possibly recalling the moment his life began. She may have thought of every other beautiful moment she had with her son since his birth, and now, the torment she must have felt as she was helpless to save him. I can see her anger for those who were mocking and belittling him. I can feel her agony as she realized what she was witnessing was indeed reality and when she finally could touch her boy, he’d be dead. Even if she had knowledge of his resurrection, she still had to witness his horrible death. It was a death he didn’t deserve because he was wrongfully accused. He was tortured and he was humiliated. He was an innocent man publicly shamed as a criminal and no one knew this better than Mary. This makes me think of the song, “Mary Did You Know?” Did she see what Jesus saw in the garden as he asked for this to be passed from him on the day of his birth? Did she look at the perfect son she had just delivered and see the death that awaited him? Christ did, and he was so fearful, he agonized over it. The Bible says, “And he was withdrawn from them about a stone’s cast, and kneeled down and prayed, saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done.” Luke 22:41-42 (KJV) “And being in agony he prayed more earnestly: and his sweat was as it were great drops of blood falling to the ground.” Luke 22:44 (KJV) He didn’t want to experience the pain, even when he knew the effect his death would have on mankind. This verse comforts me because Jesus had all knowledge of his death, spoke to God honestly about his fears in prayer, and asked that God’s will be done. In difficult times, I take comfort in the obedience Christ displays for us here. He felt fear over his life, just like I have. He prayed and told God how he didn’t want to experience the pain, just as I have. Then, he asked for and accepted God’s will, just as I am still trying to learn. God doesn’t ask any more from us than he did from his own son. Mary and Jesus both obeyed, even when they saw the tragedy ahead.

Jesus even obeyed while he was dying. Jesus spoke few words as he died, but he spoke these words no doubt out of love and obedience, “When Jesus therefore saw his mother, and the disciple standing by, whom he loved, he saith unto his mother, Woman behold thy son. He saith to the disciple, Behold thy mother! And from that hour that disciple took her unto his home. After this, Jesus knowing that all things were now accomplished, that the scripture might be fulfilled, saith, I thirst.” John 19:26-27 (KJV) His mother, Mary was most likely widowed at this time and would have no home and no income. It was customary during this time in history for women to be put in the care of someone else at the passing of the man who was caring for her. Jesus didn’t forget his mother standing there. He made sure he took care of her in his most desperate hour. I can recall many times where my husband and I were experiencing the same pain, yet he took care of my needs before his own. It’s hard to forget that kind of love. Jesus was displaying self-sacrificing love two times over on the cross. He was sacrificing his life for mankind and put his mother’s needs before his own while he did it. My husband’s actions will never be of that magnitude, but through his actions, I have no doubt how much he loves me. When one person puts your needs before their own, they are displaying the same love Christ displayed at the cross.

Mary saw her son give up his own life shortly after this. He was removed from the cross and it was finished. In God’s great plan, taking care of Jesus’ earthly mother was included. He didn’t say, “Thanks for carrying my holy vessel Mary, get lost.” He had a plan for her care right to the end. He honored his mother. Three days later, Jesus rose from the grave proving victory over death. He didn’t forget his mother then either; Acts 1:14 says, “These all continued with one accord in prayer and supplication, with the women, and Mary the mother of Jesus, and with his brethren.” (KJV) Jesus spent time with the disciples, and even his mother after he rose from the dead. They prayed and worshipped together until the time he ascended into heaven. Again, the Bible didn’t mention the interaction between mother and son during this time, but there must have been joy in Mary’s heart once she saw her resurrected son. All the pain, sorrow, and grief of the cross must have melted away. She may have spent her time with him, once again admiring the wondrous works God was doing through him. Maybe she finally felt the magnitude of her pregnancy and the angel’s words to her saying she was with child.

These days, motherhood begins with two pink lines, no proclamation from heaven but the news is still as sweet. God had a plan for the mother of his son and never forgot her faithfulness. I imagine he always smiled on the woman who said, “Yes” to a plan that was uncertain for a woman in her time. She had the faith to answer God’s call and follow that all the way to the foot of a bloody cross where she watched her beloved die. His life did not end in vain. No, he had a purpose and in it, so did she. It was her “Yes” that helped complete a plan put in motion before Adam ever placed his feet upon the new creation. God had Mary in mind when he decided one final sacrifice had to be made to unite man with God. He had a plan for him and he had a plan for her. There was death and tears at that cross and there was blood, a lot of blood. Mary was probably covered in her son’s blood just as we are when we say “Yes” as she did. When we say “Yes” he has a plan for us, all the way to the end because he doesn’t forget. Like Mary, he has also promised us a new home. An eternal one. Mary wasn’t afraid to come close to the cross because she was Jesus’ mother and she’d follow him anywhere. I have no doubt Mary would take our hands and lead us to the cross where we too can be covered by the blood of the one last sacrifice because there we can find love. There lies the ultimate form of love and forgiveness. Follow Mary. Take the journey to the foot of the cross with her this Easter and ask, “Mary, did you know?”

*d*

Where is Your Worth?

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Today my oldest son was sent home sick from school. I knew it was going to happen. I had seen other moms post photos of their kids next to trash cans or their status updates would warn others to stay away from the plague upon their homes. All I could do was wait for those germs to make their way through the school halls and come through my front door. Today the plague arrived.

Illnesses are treated much differently in our home. We are careful to separate sick children from the well ones and clean thoroughly, but we also try our best to keep them from coming in our home in the first place. With a chronically ill child on a chemotherapy drug and a mom who has an auto-immune disease, every illness has to be treated as if it has the potential to send us to the hospital. My ritual of telling the germs they are not welcome comes via a seasonal social media update, it reads something like this, “With cold and flu season upon us, we ask that you stay away from our family if you have been sick or have been around anyone who has been sick. Please make sure you are completely free of illness before visiting our home.” It’s simple and to the point but there is always more I could add like, “We ask you refrain from our home during flu season. We are more susceptible to getting the flu, but your small flu could send those in this home with chronic illness(s) and/or autoimmune disorders to the hosptial. Your flu could be devistating to our health.” I don’t want to come off as too pessimistic but illnesses pose a higher risk for those who are already chronically ill. I take quite a bit of medication to try to build up whatever immune system I have so I can care for sick kids when the plague does arrive, but it doesn’t always work. I sometimes succumb to illnesses and I need help.

These days asking for help is increasingly hard. I was scrolling through Facebook and someone had posted a quote that read something like this, “My greatest accomplishment in life is knowing I never depended on or was a burden to anyone else…..” I read it, made a face, read it again, and mumbled something under my breath. This quote may indicate that the author is a go-getter, someone who is independent and self-reliant. Those observations could very well be true, but the statement tells the world that there should be some great pride in not being a burden to others; so much so that this quote was paired with a beautiful photo, nice enough to hang on a wall if someone so desired. What I mumbled under my breath was this, “So what if something happened to this author and he had no choice but to rely on someone else? What about those who have no choice but to rely on someone else??…..” What did this “inspirational” quote say about those who need the daily help of others? Reliance = burden?

This quote could very well be an excellent life goal for an independent person but to someone like me who increasingly relies on the help of others, it makes me feel a bit…….worthless. I can no longer proudly proclaim how I care for myself and my family with complete independence. Until my disease is better controlled, I frequently need the assistance of loved ones. I can’t even walk long distances without the assistance of a rollator! (Yes, I am the one behind the pink and sparkly rollator.) So I have felt like my life has been on hold since my diagnoses, but does that mean I’m worthless?

I have spent many evenings cuddling a tissue box because I was crying over my feelings of worthlessness. I can’t escape the fact that I have times when I need extensive help from my husband because my RA is so severe. I still look for “good days” when my pain is minimal and I am able to leave the house or do a little of what I was able to do with ease not that long ago. It’s hard to live in a society of people who value what you can do more than who you are. Sometimes it is hard to find meaning when it’s hard to fulfill a purpose my body physically couldn’t possibly fulfill.

Then one morning after reading our morning devotional, many things came into focus. My faith teaches that we are created to be loved by a God, a God who finds pleasure in our love for Him. That same morning I looked at my special needs son after our reading and said, “Your purpose in life is to love and be loved! And we love you so much!” It was then when my light bulb went off. My purpose and meaning really isn’t measured by what I can do or how I can do it, in fact, it’s not meant to be measurable at all.

My little boy may never be able to fully understand many things in life. He has limited expressive communication skills but that doesn’t mean he can fulfill the purpose we were are created to fill, to be loved. If the only thing my son ever accomplishes in his life is to be loved, it’s a pretty sweet accomplishment. No one knows the course of our lives and those who are the goal oriented, go-getters may someday find themselves relying on others to accomplish those tasks that were simple for them not that long ago. That does not mean those people have lost their worth because of it. No, their value was and will always be the same. They are valued and loved for who they are.

Don’t get me wrong, working hard and accomplishing dreams are great but there are those who are struggling to find value because we live in a society hung up on what we do more than who we are. All the valuables in the world mean nothing to someone with an empty heart. You are meant to be loved. You are loved and made for a purpose, and that purpose isn’t measurable by things of this Earth. We may not all have equal valuables but we are all of equal value. Once I realized this, I have spent less time cozy-ing up to the box of tissues. I realized that my life can be spent in love and service to others and to a God who delights in my life.

*d*

I’m Not Terrible, I’m Two!!

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My baby is going to be two soon and I get tired of hearing about the “terrible twos” or the look of remorse on people’s faces when they find out I have a two year old. Two can be a trying age for parents, but imagine what it’s like for a two year old. These little ones are growing and doing so much for the short two years they have been alive. I feel blessed and honored to have her so I wrote a post of what a two year old, like my daughter, may say to their parents if they could.

I am not a nuisance.
I want your attention because I need you.

I am learning.
I have to test what’s around me to find out how it works.

Let me drop things and make messes.
I won’t know how messes are made until I have made some. (Oh, and I don’t understand gravity.)

I need to explore.
I won’t learn or understand if you contantly yell at me for exploring my environment.

I will throw tantrums.
The world can be overwhelming for someone who’s only been in the world two years. I also don’t understand all of my emotions. These things aren’t easily understood by adults either.

Don’t expect perfection out of me. I can’t be held to an unrealistic standards unobtainable for even you.

I can be demanding.
I get mad when I don’t get my way and I think everything is “mine!”. How do I know who is in charge and how to share unless I am taught those things?

I need a nap!!!!
I’m learning a new language and how to use my body. I’m also growing very fast. All of this makes me tired! Please, give me a break and let me rest!

The world is a very big place for me and I need a break from it.
People and places can overwhelm someone as small as me. I often need to spend time in a familiar and comfortable place.

Don’t forget that everything around me is four times my size.
Sometimes it’s nice for me to be in a safe environment just the right size for me. Why not buy me my own chair or a toy at my height? It helps me learn how things work at my own level and it makes me feel special.

I spend lots of time climbing.
I have to climb to use those big things around me but keep a close eye on me because I think it’s my job to conquer everything in the house!

Stop acting shocked when I’m upset when I don’t get the rest I need.
I’m too little to keep up with your pace. My emotional state often reflects my physical state. I feel better when I can rest when I’m tired, don’t you?

Look at how much I am doing AND I’M ONLY 2!!!
I am an amazing work of art, sometimes you just have to stand back and look at how beautiful I am!

Praise me!
In my two years of life, making you happy is the greatest thing! Let me know you are happy with me.

I like attention.
I’ll behave well or poorly to get it, so you may want to recognize the good things I do to get it.

You are my whole world!
Really, you are. There is a reason I want you to give me all of your attention. You are my first true love!

*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*

Questioning Faith

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I was six years old one summer evening in 1987 when I stepped out of my pew and made my way to the front of my childhood church. I nervously stepped out to pray with the guest preacher that evening, he also happened to be nearly six feet tall. I don’t remember much about the message that finally spurred me out of my seat that evening, but I do remember the clicking sound my purple flip-flops made as I walked past the pews full of parishioners. I remember how my heart told me there was something I needed to do. I could no longer silence a stirring within my little heart and that urge could only be met with a simple prayer. So there I stood with a preacher who could barely bend down far enough for me to whisper my request in his ear. I wanted to open my heart up to God and follow him the rest of my life.

Despite my age, I changed that night. I finally answered the call God had been placing upon my heart, a unique calling that is hard to describe. I can only describe it in a single word that shouts from within. It says “Move!”. It was a move that only I could make, a move that declared I’d live my life for God. In obedience to scripture, I was baptized a few weeks later.

I was baptised in June. I wore a blue button down shirt with crayons on it. I was to dress down as I was to be submerged in the baptismal. Although I was quite young, I remember the feeling following my baptism. As I emerged from those waters, that old shirt no longer felt tattered, and neither did I. I felt clean, I felt peace and a renewed desire to change. As I rode back from my baptism, I thought about all the ways I could change for the better, or as much as a six year old could change.  It sounds a bit unreal for a little girl to feel such things, but I assure you they were real. Maybe that’s why I have such a clear memory of it almost 30 years later.

I made a commitment to God at a young age but it didn’t save me from making many mistakes in my lifetime. Mistakes are why I needed God, why I wanted to be saved. I understood that I was imperfect and there would be times when I would need forgiveness and I wanted to follow a God who understood my imperfections. I decided to follow a God who I was taught not only created us, but lived among us and personally understood the hardships of the human existence.  I have known for almost 30 years that I didn’t have to face the tribulations of life alone, I felt the God of the universe cared for someone as small and flawed as me.

With such a longstanding relationship with God, it has been hard for to me admit when my faith has faltered. Questioning my relationship with God and, His very existence, may seem like a big failure as a Christian but to me it has been a necessary part of my faith journey. In recent years I have asked the same questions I did before I took that walk before the church at the age of six. Health and financial issues of my own and those around me have made me realize I didn’t have the unwavering faith I thought I had. I started to think deeply about what it was I claimed to believe. I became scared when I did not understand things beyond my comprehension. I wondered how a God who was supposed to care for me so intimately could allow me to experience such suffering. I was becoming more angry and questioning what I believed down to the very existence of God.

Were my questions a symptom of a weak faith? What good could come from questioning a faith that has carried me through many difficult times since the day I walked to the front of the church on that summer evening? Some may say it’s because my faith is weak but I dare to believe that the deepest of convictions come when they are questioned, examined, and re-examined. What is a blind faith that is never re-examined, especially in difficult times? Questioning my beliefs would either solidify what I believed to be true or it would fall apart under the weight of the pressure.

Christianity believes that Jesus is God who came to earth to live as a human. He was one percent human and one hundred percent God. He felt the same human emotion as we do while having the diety of God. He had the full human experience and a frightening human death. He felt joy and happiness. He experienced great fear and loss. Knowing these things, I asked him to show me the meaning of my own suffering but before I could utter the words from my heart to my mouth, I saw Christ praying in the garden before he was arrested. I saw his agony over the death he knew was before him and there is no doubt he also knew of the torture he would endure. I saw him on his hands and knees, pleading for the cup to be passed from him as he sweat his own blood. He was physically manifesting symptoms of his internal struggle. He lived and understands by experience. When I accepted Christ, I accepted that he didn’t blindly ask me to suffer. He did it himself. He was born into this world and immersed himself in life. He was here and he understands. He suffered more than I could ever imagine. He was arrested, beaten, and crucified. I remember then the feeling I had when I decided to follow God at such a young age, I knew he loved me because he knew me. He was gracious enough to give me life but he never promised a life without strife, as he himself was not exempt. He promised to be with me always and he hadn’t broke that promise, I just forgot it.

In the last few weeks, my life has quite possibly become more difficult as my body is continuing  to experience widespread pain and my son’s seizures continue to increase, making neurosurgery look like the last, best hope but God has renewed so much in me. He answered my prayers. What was his answer? “Keep questioning.” What a wonderful response! So I am picking up my Bible, books, praying and asking questions. I am renewing my faith through questioning my own beliefs. Doubt made me search and through that search, I renewed my relationship with God. It is a relationship that gives my life purpose, even my suffering.

So I challenge you to do the same. Question why you follow your own personal convictions. Once you examine your beliefs, ask if those convictions make sense and bring you contentment. If your beliefs ask you to follow blindly, I’d question them even more. What good is an unexamined life? Take a chance and ask the hard questions. I guarantee if you are looking in the right place, those questions won’t be too hard to find.

*d*

Love is Stronger Than Pain

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I was thinking about what Rheumatoid Arthritis (RA) has taken from me today. It has taken many things; my peace of mind, health, mobility, strength, and much more. It has been hard to accept that just a couple years ago I didn’t have to worry so much about my own health, the peace of mind about being able to take care of my own children was secure, and I knew I had the physical and emotional strength to take on whatever life threw at me. Now most of my day is centered around pain. I ask, if I stretch, exercise, or take the right medication or supplements, can I relieve this pain? But the day usually begins and ends the same, in pain.

I am certain I can handle what the disease takes from me, what I don’t like is what it takes from my kids. Above, I posted a picture of me holding my youngest daughter. She is our surprise baby; you know, that baby who comes along and yells “surprise” a week before a scheduled hysterectomy. My husband and I determined we were finished having children and I needed to have the surgery to take care of some health issues that have plagued me for many years. These problems were so disruptive, we are lucky to have even one child, we have four. When our youngest snuck in under the radar we were very excited. We were shocked and thrilled when we finally conceived our first and every child thereafter was equally, maybe even more exciting.

I think I do alright as a mom. I love and have loved every stage of their lives thus far, but I especially love the toddler years. I personally think too many people focus on the possible tantrums or stubborn nature of a toddler and miss all the incredible things they are learning and accomplishing in the first short years of their lives. I was always the proud mom to carry her babies around on my hip. The first three were glued to my hip as long as they’d allow me to pick them up and put them there. Unfortunately for my fourth, she hasn’t had the same. I am unable to pick her up, let alone carry her like I could with my other children and that just makes me mad. She is frequently raising her arms to me and saying, “up” and I have to say, “Sorry baby, mommy can’t pick you up right now”. Yes, I know I can find other ways to pick her up and I know it isn’t a necessity but I want to do it! I hate that my RA has taken this simple joy from me. I have accepted and smiled through many things that have spewed into my life but I am neither going to smile or accept this one.

As you can see, I try to pick her up as much as I can, pain or no pain and I often try to take a picture. I want to remember that I was blessed to have had babies on my hip. I am privileged to raise my children and I will keep doing my best despite what this awful disease does to me. I will pick them up (try to put them on my hip), hug them, kiss them, and smile at them, even if the entire day is experienced in pain. When I think hard about it, my life isn’t about me, it’s about who I have been gifted to love. The love of a child is far more powerful than any pain some awful disease tries to throw at me.

*d*

Finding Your Perfection

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Today I watched you stand in front of your mirror, your face barely reaching above the top of the dresser – in one hand you hold your plastic curling iron, pretending to fix your long, dark hair for whatever pretend adventure you and your baby sister have planned for today. I know you both will grow up way too fast. I imagine you both crowding in that same mirror that will someday be too small for both of you to use. One day you will have no use for the plastic curling iron and pretend makeup you adore now. You will leave it and your childhood behind. Soon, you will quietly whisper about the boy or boys you are preparing to see. I know one day you may not want to tell me about your dates, and especially the young men that await you, but I’ll still be there, even if I’m still just watching you from the doorway.

Right now a young man can be anything you imagine. He can be as handsome and brave as one in a functional movie, but someday the choices of whom you will want to be with will be more complicated than you realize. I want talk to you about when you give your heart to another person. Your heart is beautiful and precious. I can only hope that you know exactly what you deserve. You won’t learn the majority of it from me, you will learn the most about men from the most important man in your life right now, your dad. I hope when you decide to date, you are willing to wait for someone who is as wonderful as your father.

I had a hard road before I met the man that I’d love forever. Once we met, it didn’t take me long to fall in love with him. It isn’t hard to love your dad, he has a generous smile and a warm personality. Of course, I thought he was the most handsome man I had met but it wasn’t just those things that made me fall in love with him. It was also his generosity, his willingness to give of himself selflessly, and his big, big heart. When we were together, it was like I found a missing part of myself, the best piece of myself. I knew quite soon he and I were supposed to be together.

When he and I met, dated, and fell in love, he demonstrated qualities that assured me he was a trustworthy man. His actions defined him as a man and who he would be as my husband. I was his equal, his partner, and I never worried about what he would do once he held my heart. He didn’t just compliment me, he helped build my confidence. He didn’t just talk with me, he had a genuine interest in me. This is all important because when the time comes, you will want to know if you are with someone who is just as interested in you as he is himself. You will know the relationship will last through the best and worst times because he made time to know you and hopefully you will have done the same. All of this is important because bad times in a relationship will inevitably come. If what is supposed to be the best part of a relationship brings out the worst in someone, don’t be surprised what the worst times in a relationship will bring out. You will want someone who cares about your well being as well as his own during hardships. I know because your Daddy and I have been through a lot together. When we vowed to love one another better or for worse, we didn’t realize how important that vow would be.

We have faced an artillery of difficult circumstances. For example, we never anticipated having a child with a life altering medical condition, or that I would also be diagnosed with one, all within ten years of our marriage. Both diagnoses bring stress to our marriage in various ways.  It is in these times that I have seen the best, not worst, in your father. He has been an example of how to truly love another. He gives of himself and his love selflessly and meets each challenge with understanding and prayer. When there is nothing but pain and hurt on the faces of those he loves, he is patient and non-judgmental. It may sound easy, but it isn’t. It is hard to smile when there is pain inside and I know he hurts too. It’s not easy to be the one person an entire family looks to for guidance and your dad does it so well. When he smiles and says, “It will get better,” and you can have confidence in his words. He can tell me he loves me and thinks I more beautiful than the day we met and although I don’t believe I am, I believe him.

So girls, one day I hope you will wait and seek a man much like your dad. He isn’t perfect, no one is but he’s pretty close. We are all very flawed but love and the love of someone who truly loves you can make a relationship that feels nearly perfect. Until the day you leave us for a family of your own, we want to love you the same…….. imperfectly perfect

Love,
Mom (*d*)

Critics Will Be Critics

Have you ever felt like no matter what you say or how you say it, there is that one person that will always find fault with you? Have you ever tried to please this person by asking how and why they are offended and try to change it? I have. The only thing I manage to do is make things worse. That one person usually ends up getting upset even further because the additional effort is viewed as offensive or I then looked like I was trying too hard. The truth is, there are people we can never do right by because they just don’t like us. Another truth, the more people we open up to means we are more vulnerable to these type of critics. If you want to test this, go to any article online and read the comment section. Find the most feel good story the Internet has to offer, scroll down to the comment section, and read feedback. Even the heart felt story about a little puppy who wandered away and was brought back home by the kind-hearted neighbors will be torn down by the critic who wanted to know how the irresponsible owners didn’t keep better track of their pet or why it took so long for the neighbors to bring back the puppy. There are people in this world that simply can’t be pleased.

When my friend and I decided to venture out into the blogging world, this was a natural concern of mine. In recent months, I have had to reconsider what and how I write, who I submit my work to, and what it is I want to accomplish with my writing. My primary focus recently has been the stories I have shared with The Mighty. There has been a flurry of negative feedback surrounding The Mighty in recent weeks. I submitted my first story to The Mighty in June of last year and since then I have had 14 stories published. I was shocked and proud to have my work shared on a bigger platform. Prior to these publications, I wrote only for myself. I didn’t write for an audience and I didn’t write to accomplish certain goals. After my first story was picked up, I continued to write as I had before; I thought could make a difference to others who could relate to my personal journey with disability or my journey as a special needs parent. I did begin to write more about my experiences as a special needs mom or an individual living with chronic illness because more of my stories were being picked up because I felt like I was making a difference.

In the last few weeks, some critics of The Mighty have used some poor tactics to drive their point home including plucking out and tearing down stories published by The Mighty by people like me. I have personally steered clear of these pages and care not to know of any attack of my own stories. I think the tactic is a poor way of demanding change. Change in my opinion is best served by open and honest dialog about concerns that effect numerous people. Change happens when disagreement comes and those from opposing parties can fight, but do so honorably. This is especially important when both or all sides are supposed to be working on the same goal: in this case tearing down the stigma of disability and disease. This current attack seems to separate members of the same team, further, attack people who are obviously already suffering.

I will make my statement clear, I write what I want because I believe in sharing my life, and yes, sometimes my life with my special needs child in an effort to help others. I read comments from people who think that parents like me share our lives with our special needs children to somehow promote ableism or write to make the masses feel better about themselves through our work through a tactic called “inspiration porn”. I can only speak for myself and I don’t know if my work falls into any of these examples, but I am simply writing about my own experiences and how they make me feel. I have no ulterior motives but the feeling that I am unwelcome to write as a special needs parent is hard to ignore.

Picking apart one article of one writer is a poor way to get to know that person and understand their experiences. I have a blog for this very reason. I have it because my life is full of unique experiences. They are spelled out throughout many posts that are sometimes written in a flurry of emotion or written calmly at the end of a day filled with inspiration. Yes, some stories are sad, exciting and sometimes just laughable. The bottom line is clear, they are my experiences and this is my life. I don’t write to please the masses, I can’t. It would be impossible for me to make everyone happy. At times, I’m not happy with even my own work but when I came across The Mighty a few months ago, I felt like my personal journeys could have a place in the bigger world. I felt like I could share even the messy, and nearly impossible parts of my life, and they could mean something. Maybe my struggles could serve a bigger purpose. Maybe the story I wrote about how I broke down while picking the kids up from school after a day of setbacks could help the mom browsing the internet with eyes swollen and red from tears feel like she isn’t the only one having a bad day. Maybe the person who just got back from the doctor’s office after hearing the severe pain they have been experiencing is caused by Rheumatoid Arthritis came across my personal journey with the same disease after typing Rheumatoid Arthritis into a search engine. Maybe most of my stories will sit on my blog and never get picked up by another website and never get read by another soul. It’s the most likely possibility and that’s okay with me.

I started a blog hoping it would help me deal with all that was going on in my life, and if someone happened to stumble across it and it helped them too, it would be an added bonus. I didn’t think any of my pieces were good enough to be shared by a bigger community but my first published piece has been shared over one hundred thousand times. That’s pretty amazing! It’s an honest piece about the feelings I have had as a special needs parent. Some may want to say I am complaining about being a parent to a child with numerous challenges and maybe they are right, but I also know how very blessed I am to have the opportunity to raise him. Reading more of my journey would make this point very clear.

It’s through our unique journey that I learn more about the type of person I need to be and how my son’s life has impacted mine in so many different ways. People may disagree when I write about how my son inspires my life, or they may say I shouldn’t use his life to inspire others. I write about his life, he just happens to be an amazing young man that deals with extraordinary circumstances. Someday I will read him every last word. He may not understand it and he may never be able to articulate his own journey, but I will continue. Why? Like any parent, I want to give my child all I think he deserves. If I write about my son’s journey and how it has effected him, maybe I can draw awareness to his disease, Tuberous Sclerosis Complex. No one will know of the disease or how it effects someone in real life if no one talks about it. I’m talking about it!!! I am sharing how it effects a real little boy who has real feelings, who experiences real hardships at the hands of his disease, and needs a real cure!

So, critics will be critics. I have read some honest feedback from the critics of The Mighty and I have made some decisions about my writing based on those who are like my son and grew up with disabilities. I appreciate helpful feedback, but not feedback that hurts the entire community. Not everyone is going to like me or like my work, that’s okay, I don’t like everything I read either. The Mighty may not be for everyone but I have no doubt the founder has good intentions. I hope those who have legitimate concerns continue to voice those concerns in a constructive manner and will stop trying to take down the entire mission of the site. The Mighty is on new territory and it can be a great place to connect with people who will help us all feel like we are not alone when dealing with the difficulty of this life. I guarantee every contributor already has difficulty and putting their stories out there for further scrutiny is hard. I barely have time to write, I have a full plate but you can be sure that my intentions are good. If all I leave in this world are a few stories about my life with my own illnesses and the life of my little boy struggling with his, it’s well worth it when I read that one comment that says, “Thank you!” In that one moment when that reader no longer felt lost, it became worth it. I know what it’s like to feel lost and afraid, several times over. I had never heard of Tuberous Sclerosis Complex and I would have done anything to connect with someone who understood our pain the moment we heard our little boy had that disease. I am still fighting to understand Rheumatoid Arthritis and how debilitating the disease really is. It helps me to connect with another person who found treatment when they too were feeling as hopeless as I do because they too were watching their body waste away at the hands of the disease. I am leaving what I am searching for, giving what I take…. and I won’t stop… I have a voice, I am going to continue to use it, and yes, I feel mighty!

*d*