An Invitation

I want to invite you in to my life. This will be extremely difficult for me. I am a private and sometimes quiet person but what I have to show you is important. It is a glimpse into the life of someone who is living with Rheumatoid Arthritis and Fibromyalgia. I also have four children and one of them has a disease called Tuberous Sclerosis Complex. He is multi-disabled. Among several secondary diagnoses, he has epilepsy and autism.

I want to capture my life in pictures to put a face to invisible disease. I want to give a voice to others who also struggle silently. Many people, like my family, face difficult daily challenges so I hope my story will serve as a reminder to be kind to others. You never know what challenges someone else is facing.

This is how you might see me in public on a typical day.

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(I say might because with four kids, I don’t always have a lot of time to apply make-up and fix my hair before I leave the house.) Yes, I “look normal” yet I am very different. Here is life from my perspective:

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On this day I had another rheumatologist appointment. I was brought back to the exam room and four needles were arranged neatly on a tray. I have never been too excited about needles and this had me nervously thinking about the five injections I had already received since the beginning of the year. I suspected these syringes had something to do with the problem of pain in my shoulders the Dr. and I discussed at my last appointment. I tried to prepare myself mentally for what was to come. Waiting thirty minutes gave me time to doubt accepting these additional injections, but I reluctantly elected to take them in hopes of increased mobility. Unfortunately, it landed me in an ambulance with a suspected allergic reaction. It also altered how I could be treated in the future.

A few short weeks later the only positive side effects of my shots had worn off. The anti-inflammatory properties were gone and my RA took over. I was experiencing my first RA flare. I could describe it simply by saying, “it hurt to move” but I was unprepared for this kind of pain. I was shocked, reeling in pain from the smallest movements. Fibromyalgia gave me a secondary blow as it pained the area around the joint effected by RA. In a matter of weeks, I went from a 34 year-old mother of four who was keeping up with her children, to a woman unrecognizable to even myself. I revisited the rheumatologist and began physical therapy in hopes of any relief. At the advice of my physical therapist, I purchased a rollator. It would help with my mobility when the pain made it too difficult. My hands hurt so bad that I could hardly grasp the handles. My body retaliated against me and it hurt to stand up straight.

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At the peak of my flare, the morning hours gave me the most pain and I had difficulty getting out of bed so my husband began to help me….

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He helped lift me to my rollator….

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And had to help me on and off the toilet.

My knee was so full of fluid that I couldn’t get my leg over the bathtub. My hands hurt so bad that I couldn’t wash my hair, let alone squeeze my shampoo container without assistance. He waited outside the shower to help me wash my body and hair and help me in and out of the tub.

Each day would carry on and each night I would cry out and wonder, “Where is my life?!”

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Even my hands swelled to the point of making everyday tasks difficult, so I started a small dose of oral prednisone. I eventually had to take two a day. It has it’s own unpleasant side effects, like sweating and mood-swings, but it helped me function. It was enough to reduce some of the problematic swelling but I was still in constant pain.

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It wasn’t the only medication I was taking to help me through my flare…. and there were more side-effects…. My legs were bruised from taking Naproxen. I was also getting headaches from my pain medication.

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My son’s epilepsy didn’t wait for me to feel better. Sometimes he falls at the onset of a seizure. After, his limbs are immobilized and he is frequently exhausted. His seizures are physically demanding for both of us. I often have to lift, hold, or carry him to a safe place before and/or after a seizure. On this day he had a two minute seizure that took over his body. He could not move so he begged me to lay him in bed. It was hard for me to carry his worn body to his bed. We were both exhausted. It was all too much and I sobbed as he lay there.

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It was no surprise that the physical demands of motherhood and my special needs son began to take a toll. The pain became intense in my shoulder so the doctor ordered an MRI. I found out that RA has torn my shoulder to shreds. The six paragraph explanation made for interesting reading. I have refused surgery as 12 weeks of recovery and therapy isn’t realistic for a mother like me.

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(I couldn’t even get the full summary in this screen shot.)

Another doctor appointment. Here I am waiting to see a pain management doctor. Nothing seems to be as cruel as living with chronic pain. It’s a daily struggle that I am desperately trying to conquer.

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Another bad day for my son’s seizures. On this day he fell to the floor before I could reach him. My leg had been so full of fluid that I could not get to him before the seizure knocked him to the ground. Although I was thankful he was inside and on carpet, the guilt of being unable to reach him before he fell ate away at me. He is pictured here after he finally stopped shaking. He once again had no control over his arms or legs so I had to lift him to the chair and sit with him until he could move.

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I pray for days when we cuddle just for the sake of cuddling, not because a seizure has prevented him from moving his own body.

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I may not be strong but I am determined to hold my baby when he needs me…

Between my special needs child and I, we spend a lot of time at doctors’ offices and in hospitals. What’s startling still is the realization that we will never get a financial break from the burden of disease and disability. It’s disheartening when my medicine cabinet is fuller than our pantry.

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In the evenings the kids often find me elevating my leg. Since my scare with steroid shots, I have been trying to allow my body to absorb the excess fluid naturally. It hasn’t been easy and I often need to elevate it to find relief. I also have a cyst on the back of my knee that may never go away, or so I have been told. On this night, my daughter found me, and I’m glad she did.

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Most of the time I look like a normal mom. I snuggle with my babies.

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That’s my family posing for lots of pictures during a rare trip away from home.

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I can also be found at the bowling alley with my family although you won’t see me bowl. My hands hurt too bad to pick up a bowling ball and my body hurts too bad to roll one down the lane.

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….but I am still much different. I know, it can be hard to see. And although I am allowing a glimpse into my life in hopes of changing the way others perceive it, there are still those remaining invisible facets to my life that are the most important.

In the early morning hours during my RA flare, my husband got out of bed and helped me do things he never would have imagined when we wed a short ten years ago. The jokes we made about caring for each other in old age have abruptly ended–just like my once healthy youth. And I realize in my worst moments, love and the affectionate care of my spouse intertwine much like his arms embracing my weak frame. In our darkest and hidden moments, we find love. It triumphs over every minute I wake in pain and he comes to my side, over every seizure that crushes the delicate body of our little boy, and any doubt that we will make it through every last setback together. So when I am asked, “How do you do it?” I may not always have the best answer but I do know I will make it because I don’t have to do it alone. I know I am loved unconditionally. And that is the most important thing you should know about my story…true love is not conditional…true love sees past differences, disability, fear, sadness, and disease. Love is my husband looking past my suffering and weakness and still seeing the woman he loves. Love is the confidence I have in his fulfillment of the promise to love me “in sickness and in health.”

Today, I am getting better and working with my specialists to find the right plan to manage my disease. This will not be the last flare I will see but the goal is to reduce the number of them, manage my pain, and slow the progression of my disease. The most important goal for my health is to be a productive wife and mother. I most likely have a lifetime of care with my special needs son and I want to have that privilege as long as my health allows. We also continue to work on improving his life despite his disease. It has been hard but I look forward to every moment I am given, good and bad. The good times give me hope and the bad times allow me an appreciation of them. And love sees me through it all.

*d*

Come Down from Your Tree

One of the nicest things others have done for our family is bring a meal to our door when times are difficult. It was especially helpful when I was in the middle of my first, ugly Rheumatoid Arthritis flare. My family was able to enjoy a meal without the fuss of putting it together. We are equally grateful when we are invited to eat a meal with someone else. The invitation itself comes with the mutual understanding that mealtime with our family isn’t always seamless. We have four children under the age of 10, one of which is disabled. He has a great deal of anxiety at mealtimes and sharing a meal with him does come with a fair share of comprises. Having children of any age or ability can come with challenges but mealtime for us can be anything but relaxing. This may be why we are more than excited when we are extended an invitation.

This same excitement was especially true over two thousand years ago when mealtime was a priority and sharing a meal had great significance. In fact, hospitality should be an active practice in the Christian faith. Luke 14:12-14: “He said also to the man who had invited him, ‘When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you. You will be repaid at the resurrection of the just.” This verse reminds me of the story of Zacchaeus. He was also someone who was rarely invited to a meal but got a big surprise when he was asked, and even more by who extended the invitation.

Zacchaeus’s story began with him cowering in a tree. Can you imagine a grown man hiding in a tree? That’s exactly what Zacchaeus did. He shyly hid away from a crowd that gathered in the streets to see Jesus. Zacchaeus wasn’t someone who was well liked. Zacchaeus was a tax collector. His unpopular profession had him hiding from a crowd that despised him and his shame could have also had him hiding from the Lord. Jesus did arrive and although Zacchaeus may have been able to hide from the crowd, he wasn’t able to hide from Jesus. Jesus saw Zacchaeus and called him down from the tree. Can you imagine the fear and anxiety that overcame Zacchaeus? Was Jesus wanting to make an example out of him? Would the crowd tell the Lord his indiscretions? Zacchaeus must have been astounded by what Jesus did next. Jesus asked to be a guest in Zacchaeus’s home. Now Zacchaeus and the crowd must have been puzzled by the actions of Jesus. Maybe they all stood puzzled and possibly wondering, “Isn’t there someone more righteous for Jesus to dine with?”

“What could Jesus want with a cowardly tax collector?”

In that time, it was an honor to house such a guest, let alone the son of God! The son of God just called down the most well known sinner in the crowd and asked to come to his home. What does this say about Jesus? What message was he trying to give to the watching crowd?

I think it says many things about him. First, it says that Jesus did not let the disapproval of the crowd sway his decision. He knew what murmurs would come from the crowd once he asked Zacchaeus down from the tree. He knew it may cause a disruption and rumors, but he did it anyway. Jesus had a plan and that plan was for all people, especially those who feel like they have the most to hide.

Second, it proves God can see the hiding sinner. Can you imagine what would drive a grown man, an employee of the government, up into a tree? He had a terrible job. He was the first person people would see when they had to hand their money over in taxes. Can you imagine the reception he received when there was a tax increase? The people of the time worked hard for their money and the taxes were not always fair. Zacchaeus had to collect the money one way or another, with no ability to be sympathetic with the people. Zacchaeus was well aware of his reputation. Who knows, maybe he had been in that tree since the middle of night as assurance he wouldn’t be seen. He was most likely a desperate man for a number of different reasons.

It also shows how Christ lived by example. The above verse is summarized by specifying who should be invited to a meal. The ones we should be extending a meal to are those who are unable to repay the kindness. It’s easy to invite those we know and like to our table but how many meals would we extend to our enemies or a hungry stranger off the street? Jesus knew Zacchaeus was not offered invitations to dine with those who disliked him, yet he was the one person Jesus wanted to share a meal with that day. He didn’t ask us to do something he didn’t do himself. Maybe he knew how much could be learned about someone by sharing a meal. Imagine what could be accomplished by extending an invitation to those who feel like an outcast. It could very well save lives as Christ lived to save all people.

Lastly, it shows that even the sinner who has the most obvious of sins are welcome to dine with the Lord. Jesus did not lay out criteria he required of Zacchaeus before he would dine with him, he just called him from the tree. Jesus reflected these actions on the day of his death. Two sinners were crucified on either side of him. One taunted Jesus and the other asked for forgiveness. Both men were obvious sinners and deserved death. Jesus extended forgiveness to the man who asked. With no strings attached, he said to the repentant man, “Verily I say unto thee, To day shalt thou be with me in paradise.” Luke 23:43

Too many of us feel like Zacchaeus. We are ashamed and hiding. We think there is no way we are worthy to be in the presence of the Lord. Our sin, disappointment, and the opinions others have us scampering and hiding away from life. What we don’t realize is that Jesus sees where we are hiding, and most importantly, he sees what we are hiding. He already knows our deepest of secrets and he knows what we deserve and wants us to let him in. He did make an example of Zacchaeus that day, an example that is still true of the nature of the Lord. God seeks out all people. No one is too righteous or too sinful to be excluded from the love of the Lord.

Jesus is standing under your tree. How will you answer his request to come into your home? Will you open your door or keep trying to hide all what he can already see? If you have already invited Christ in, what are you doing with his words? Who have you invited to your table? Will you be an example to the waiting crowd?

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*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*

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*

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?

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A Brother’s Lesson in Disability

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It's hard to believe they were once this little.

My disabled son is seven and he is the second oldest of my four children. My special needs son was diagnosed with Tuberous Sclerosis Complex at three months of age. A few of his secondary diagnoses include epilepsy, autism, and intermittent explosive disorder. He is considered multi-disabled. As he grew, his delays became more apparent to all of us, even to my when my oldest son. He and my youngest son are 17 months apart and it was very exciting for him to have a little brother of his own. It didn’t take long for him to notice that his little brother didn’t play with him as he anticipated, and that his little brother was also sick.

At four months, my youngest son developed a rare and catastrophic form of epilepsy called Infantile Spasms. These deceivingly innocent looking seizures occur in clusters and are very hard to control. He would have multiple episodes a day and the seizures would be only a few seconds apart and could last up to fifteen minutes. All of our best attempts at controlling the spasms eventually failed. This made it hard for him to reach developmental milestones. His brain was just too bombarded with epileptic activity to make any significant developmemtal progress. So as both my boys grew, the developmental gap also grew. My oldest would be playing ball, stacking blocks, or drawing and my youngest could only watch. His body was weak and he had limited mobility. He also had significant speech delays. It was obviously hard for all of us, but especially for his big brother who wanted to play with the “little buddy” he eagerly anticipated. How could I explain to a three year old why his little brother couldn’t play or talk? How could I help him grasp such a complicated subject in a simple way?

My oldest was very familiar with his room. We spent alot of our time playing there. I first asked him where all of his favorite toys were and he happily showed me. Next, I blindfolded him and asked him to bring me those same items. He did find and bring me what I asked but it took him a while and he needed my help. After that and a few laughs, I explained, “Your brother is just like you, he just sees things differently. It may be harder for him but he knows what’s around him, just like you knew your room even with the blindfold on. And just like you had to take your time, he has to take his time to do all the things he would like to do. You needed me to give you directions on where to go and we have to do the same for him. You eventually got to your favorite things and he will too. You are one of your brother’s favorite things and he will find you. Give him time.” I also reminded him that even though our experiment was hard, we still laughed and he needed to laugh with his brother, even when it gets hard. He smiled and I hoped something stuck but every day from then on I still remind him, and all four of my children, of one or all of these things when life gets hard,  give it time, offer help, give lots of love, and never forget to laugh.

*d*

A Boy Fading

It’s the first day of school and he is worried about making friends, finding classes, and navigating a world that is literally closing in on him. You are nervous as you watch him prepare for his day even though you have seen him do it many other times. Your son is different. Your son has an invisible disease that is robbing him of his sight. You have to let him go although you know he is going blind. You won’t wave overzealously to him as he smiles eagerly at the stoop of the school. No, you will hide your fear with a haphazard smile and he will crack a cautious grin and wave to you anxiously. You are not sure if you will experience the happy anticipation of hearing how wonderful his day was because his previous school proved to be a terrible experience. You pray a new year and a new school will be the right decision for you both. The question, “Why?” rings in your ears frequently and today is no exception. You know the answer, it’s because he was born with this genetic condition that is stealing his vision. And then that same sickening feeling wells up from your gut and you try to stop yourself from revisiting the same internal battle that steals your sleep. You know the conclusion is always the same, life hasn’t been fair.

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When it comes to children diagnosed with a disability that robs them of any physical or mental capability, it is often hard to see the silver lining. The hard truth remains the same, it isn’t fair. It is unfortunate that in our supposedly accepting society, people often prey upon the weak much like a lion attacks the weakest of a herd. Too many continue to act like animals when encountered with someone who shows the slightest fragility. School should be a safe environment for every child but instead many children are teased, bullied, and excluded based on differences. Parents often have to decide if they want their child to continue an education at a school that is adding unwanted stress to already stressful physical or mental health issues.

Yet, it happens every day and the above llustration is a very certain reality for a little boy living with a rare genetic disease. His name is Avery, he is 10, and he was born with a condition called Retinis Pigmentosa. This inherited disease causes severe vision impairment by retinal degeneration of the eye. During the course of the disease, the cone and rod (photoreceptor) cells die which causes a decline in vision. The landscape of life for individuals with this disease slowly turns into a confined view of reality. Life that was once bright and colorful slowly turns into a channel of black.

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Even his favorite things are fading from view.

Avery is as bright and as inquisitive  as any other child his age. Through it all he has tried not to let his disease define him or what he wants to accomplish. But, Avery’s vision is slowly fading and with it, it takes the spirited independence of a little boy. He no longer rides a bike or a scooter because his disease has progressed enough to make these iconic childhood activities risky. At his young age, he now has to be more cautious because even walking into a new environment creates challenges.

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Sometimes he feels very alone.

And so brings us to Avery’s first day at a new school. He leaves behind students who heckled him for understandable clumsiness associated with his disease, parents who allowed and contributed to the bullying, and impatient teachers. He now has to familiarize himself with a new school, make new friends, navigate a completely different environment, just because he was born with an incurable disease. That is when unfairness is caused by the actions of those who made him to feel unwanted over no fault of his own. Disease and disability are never an elected decision of life, but the unfair treatment makes it seem that way. Teach your children about acceptance. Teach them to love one another regardless of differences. Even a child can be a bright light, and they too can make a difference in someone else’s life. And yes, a bright light for a child whose world is growing dark.

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Avery with his brothers.

If you wish to support this little boy and his family’s difficulty paying for his medical care, please visit their page:
http://www.gofundme.com/uqm3u7f3u

*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.