attitude

Love is Stronger Than Pain

~ crossroadtrippers ~ Leave a comment

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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*

Critics Will Be Critics

~ crossroadtrippers ~ Leave a comment

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*

Finding the Right Umbrella for the Rain

~ crossroadtrippers ~ Leave a comment

It has been months and my son and I have been standing out in the pouring rain. The intensity of the storm brought on by chronic illness and disease increased quickly and unexpectedly as we found ourselves gathered under an umbrella barely big enough to shelter us from a light sprinkle. I was praying for sunlight and more ominous clouds were on the horizon. I felt hopeless.

In it all, I was focused. I was focused on living my life as if I were dying. My health has been on the decline, as also the health of my son. Any opportunity to wake and enjoy another day is a reason to be thankful, even on a stormy day. So, I would wake and my thoughts would focus on things like if I’d be healthy enough to throw a holiday party or if he would be strong enough to participate in the next school activity. I’d try to remind myself to make the most of of today because I know tomorrow isn’t guaranteed. And what about next year? What could be assured to us 365 days from now? I thought through our circumstances. I was given this gift to appreciate the moment and live for today, but I wasn’t happy. I wasn’t meeting my life with the satisfaction I thought would be a product of this new way of thinking. How could this be? The answer didn’t emerge until recently. Out of fear, I was living like I was dying but I wasn’t focusing on the living. It had become so easy to focus on the worst case scenario. Here we were battered by a storm and I expected he and I would be swept away.

My son and I both live with life altering diseases. Both of us have weathered our fair share of storms, my little boy more so than myself. We now stood together and wondered if we’d see the sun again. He lives with epilepsy caused by Tuberous Sclerosis Complex, a genetic disorder that causes tumors (tubers) to form in various organs. Many of his organs are effected but the thirty-five plus in his brain cause him to have a severe form of epilepsy that has been becoming increasingly difficult to control. In the last few months the seizures have caused developmental regression and physically weakened his body. He often looses all bodily control post-seizure. He is now in need of a wheelchair to help us transport him when incidents like these occur. I have Rheumatoid Arthritis so I have difficulty physically helping him when he has these seizures that revoke his ability to move. I am having trouble keeping my own body healthy as my RA has destroyed enough of my joints to warrant three surgeries in my future; shoulder and double knee replacement. I am awaiting M.R.I. results on my other shoulder. I am hoping the list of needed surgeries does not increase to four. My son is waiting for an evaluation of just one surgery, neurosurgery.

We know what is coming within the next 365 days and it doesn’t look good. I know I will hold off any treatments I may need until we take care of him. We never wanted to come to the conclusion of neurosurgery. We have tried all other methods to control the epilepsy and all have failed. Neurosurgery is now his best chance for him to be seizure free and hopefully gain back what progress epilepsy has taken. There is hope but I am also scared. It’s this fear that drove me to take on the motto, “Live like you are dying.”

It was a bad feeling; letting our health issues dictate how I approached each day. Each time my son had a seizure and it left him unable to move, I’d nervously anticipate him regaining movement and I’d pray it wouldn’t be the one seizure to send him to the hospital. As I lay him in bed, I thought of those seizures I may not hear as we sleep. Moreover, I feared my own disease would leave me unable to care for my children, especially special needs son as he requires a great deal of care. I was determined to fully live out each day but when that didn’t go as planned, I worried, stressed or got overwhelmed. At the end of the day, I’d then be wrestling with regret. I was frozen with fear of the unknown and fear of what I couldn’t control. My emotions were dictating my actions and I’d allowed my emotions to end my days in regret. I’d finally had enough. It was time to live without the fear, live without fear of dying.

How could I accomplish this? I began with a smile. When I felt like giving up or giving into my negative emotions, I’d smile. When I felt like throwing my hands up, I’d throw them around someone. When awful things happen, like when my son is paralyzed by a seizure, I’d smile to comfort him. I’d wake in the morning and focus on the endless possibilities for joy and if I felt that regret at the end of the day, I’d remind myself how hard he and I fought through the day….. together…. I told myself I can’t regret our best effort.

Fear and regret gave us no shelter from the storm but smiles invited sunshine no matter how bad the storm. I didn’t need a motto to bring happiness, I just needed to try to bring happiness.

*d*

Tearing Down the Four Walls

~ crossroadtrippers ~ Leave a comment

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After sharing that our family had joined a non-denominational chuch, I had a friend ask me if we had made the right decision. Our decision didn’t come easy as I had spent the last ten years attending the Catholic church and my husband was a cradle catholic. My friend, who is also a Catholic, shared that our decision saddened her. Although I did not understand her sadness, I appreciated the concern. To be sad about my decision would indicate that I had lost something by changing churches. I will miss some things by not attending mass, but being raised a Baptist, I felt like my faith was well rooted and strong before I joined the Catholic Church.

My Baptist faith is a far cry from the Catholic Church and it’s long standing traditions. I spent Sunday mornings in fellowship around a coffee pot, our noses in a hymnals, while wearing out the pages of our Bibles. Unlike the Catholic Church where the eucharist is at the height of service, ours came when the preacher would deliver a sometimes over-zealous sermon. At the end of each service we would have alter call. The alter was open and the preacher would ask people to step out of their pews and commit their lives to Christ or come forward to pray, often resulting in an alter lined with people in prayer. In my ten years attending the Catholic Church, it was never lined with kneeling or praying parishioners in that way, rather bowed before in reverence. To me, one was no better than the other, rather, I have appreciation for both. My heart was joyful when I could physically bow before it in silence or in prayer. Yes, Sunday morning for me was vastly different than those of my husband who certainly would have been shocked by the “loose” interpretations of how services could be conducted at the church in which I was raised. The songs, prayers, and words are predetermined and unified every Sunday morning in every Catholic church. Catholics celebrate and are fed with what they believe to be the literal body and blood of Christ. A beautiful experience but it always saddened me when my family could not fully participate in mass because they were not members of the Catholic Church.

When I met Doug he was a Catholic who had never worshiped in another church. When he agreed to attend services with me at the local Baptist church, he felt like he should find a way to attend a Catholic church before our Sunday was through. I was honestly offended and puzzled as to why attending church with me didn’t “count”. We were both deeply rooted in our faith and so this began an unending conversation about faith and how we wanted our faith to grow as a couple. We had to a strip away the four walls of our faith and discuss what it was he and I believed.  We asked questions, opened our hearts and minds to how we would unify our approach to faith as a couple. It was important to us. When we announced our engagement, we knew a decision had to be made about where we would attend church and where would we be married. It wasn’t going to be an easy choice. I didn’t want to join the Catholic Church. I had spent my life worshiping as a Baptist but my faith also taught me to respect and trust the spiritual decisions of my soon-to-be husband. I also trusted that God would bless me in a new journey of faith. So after much thought, I decided to join his church. I attended meetings for a year, sometimes struggling with the differences with the Catholic faith and the one in which I had been raised. I reminded myself that he and I believed the same thing. We believed in Jesus Christ who was God incarnate and paid the penalty for our sins on calvary’s cross. We both had acknowledged this truth and we both acknowledged the strong faith we held individually. My faith was not changed once I joined the Catholic Church but the way in which I could further appreciate God did. My husband also began to form a different approach to faith through the process I was experiencing while joining his church.

He knew I missed my coffee fueled sermons and the fellowship of the Baptist faith. I missed the intimate relationship I had with God. In many ways, I felt like the Catholic Church didn’t quite fill that void I felt.  A few years after we were married, I had discussed attending bible study at the same church I attended before we got married. My husband didn’t think twice. He was very supportive and decided to attend with me. We attended Wednesday night bible study and he began to see God working through his visits there. We felt blessed. We were able to see God in action through our exploration of faith. I had joined with my husband through his faith and he reached out to mine.

It may seem hard to believe that two people who essentially believe in the same things could differ so greatly in their personal worship of the same God. Both of us were so deep rooted and change was hard because we enjoyed and appreciated what we already had. What others viewed as a conflict or confusing, he and I viewed as a blessing.

Our decison to join another church happened after I asked if we could go to Sunday service at our new church as a way for me to meet people and learn more about it so it wouldn’t be so intimidating for me to join a bible study. I hadn’t been to a bible study in years and I really wanted to get involved with one again. What we discovered was a community of believers that cared for us. They sent us cards thanking us for visiting, showed up at our door with meals, and greeted us with warm smiles when we came. We also enjoyed the sermons. The words spoke to our lives, almost as if the preacher had bugged our home and preached about what we needed to hear. My husband felt something there and made the decision to join the church. I was surprised that he had reached that decision but we both felt the same stir in our hearts, the church felt like home. It had nothing to do with our past or what traditions we wanted to hold on to, it was about the overwhelming feeling that we were meant to call that church home.

It has been a couple months since we joined. I have been able to participate by giving my testimony during Sunday services, talk with some of the women about my experience at the faith conference, and plenty more opportunities are on the horizon. The door to these additional opportunities has spurred us to rekindle our faith at home. We have further discussed many issues he and I had set aside. We realized he were focusing on the mounting negative in our lives and we had almost forgot to appreciate the positive things, including the blessing of faith. Faith that is not contained within four walls of one church but a faith that should be practiced when we leave the door of whatever church in which we have worshipped. Our lives should bare testimony to the grace we are given by faith and we should be able to joyfully share it with others.

What if the four walls of your church fell to the ground, what would you have left? What if you were the only example of faith to someone else? Would you be able to be a witness to your beliefs? Would your love be a testimony to His love and grace? Before you can be a reflection of Him by your life, you must have Him within your heart. Where you worship is very important, but what you take home and practice the remainder of the week speaks volumes. I can only hope others will be able to see His work and love through our lives no matter what four walls in which we worship.

*d*

Help from a Song

~ crossroadtrippers ~ 3 Comments

It took one day in mid-October to change my life. My infant son was admitted to the hosptial after having two seizures at home. After three days of scans, questions, and crying, we were given a diagnosis, Tuberous Sclerosis Complex. We left the hospital in shock. We had never heard of this disease and now it threatened our son’s life.

Nothing made sense as we drove home from the hosptial that night. As I sat next to him, I held his tiny hand and studied his perfect face. It was only three months ago when we brought this precious life into the world and we had so many dreams for him. No one could tell us how this would effect his life and we were told he could be disabled. I was heartbroken as I realized the future was uncertain at best. There was no more dreaming of tomorrow as we were uncertain of today.

As time progressed, so did his disease. He developed a catastrophic form of epilepsy, he began to exhibit behavioral issues, and efforts to control the effects of the disease kept failing. I became more depressed despite my deep faith that teaches purpose in suffering. The feeling of helplessness was overwhelming. I yearned for the days with my baby when I could still imagine him free of his disease and I could hope that he would fulfill a normal life.

We reached our emotional bottom after five years of sleepless nights and uncontrolled epilepsy. His medical team wanted to discuss the next step in gaining control over his seizure activity. It was in that room amongst the discussion of neurosurgery that helped change my perspective. I didn’t see the young boy who was hitting, screaming and injuring himself out of frustration or pain, I saw my baby. I saw him as small and innocent as the day I held his hand on the way back to the hospital and my heart broke all over again. How could this be happening? I tried to sort out the last six years of ups and downs and continual failures. Fortunately we were given the option of starting a new medication and avoiding neurosurgery. We once again left the hosptial with mounting uncertainty.

Shortly after that visit, the song, “Can We Start Again Please” from Jesus Christ Superstar popped into my head. It persistently played in my head so I scrambled to find the song online. When I heard it, I wept. I recounted six years of failures. I recounted everything from medication to my own failure as his mother. It knew this song was God’s way of telling me that it’s okay to start again. It was okay to fail because the question could always be asked, “Can we start again please?” Shortly after, I rocked him in my arms while listening to that song and I softly sang it in his ear. I then asked for his forgiveness for my own failures. I knew the frustration with his disease had also gotten the best of me. When the difficult days get the best of me, I ask to start again. Sometimes several times a day if necessary. I just keep trying. A simple song reminded me that there is always a time to start again.

*d*

Journal of Emotions

~ crossroadtrippers ~ Leave a comment

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NEW ENTRY

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

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

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

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

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

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

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

*d*

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

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

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

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

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

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

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

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

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

*d*
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Faith Not Fear

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After a summer sprinkled with fear and anxiety, I wanted to discuss fear in hopes that maybe I could encourage someone else from giving into fear as I did. I gave into it months after I was diagnosed with Rheumatoid Arthritis and the disease began to progress quicker than I anticipated. Instead of trusting that God was in control, I decided I was better off fixing the problem myself and I began trying to negotiate a different outcome. I began working like mad to show God how serious I was about changing everything in my life if he would just spare me this disease. When things did not change in the way I wanted them to, I became fearful and I began to shut down. I spent more time crying and less time enjoying my kids. I worried about myself so much that I neglected to see those who were suffering around me. I was crippled by fear and blinded by my illness. It all came to a head while folding my laundry on a Thursday afternoon. My anxiety suddenly boiled over and I became an emotional disaster. I began pleading with God, tears landing on the laundry piled up on my lap. “Why Lord?” I asked, “How will I ever be happy again? Don’t you know my struggles and you choose to give me something else?! IT ISN’T FAIR!!” Did He forget that I have four children and one is disabled? He has a health issues, including epilepsy, and the addition of my illness seemed like a cruel slap in the face. I cried so hard that I felt like a piece of my soul could have been torn out with my tears.

I was supposed to attend my first Women of Faith Conference in a day and something was trying to convince me not to go. If I hadn’t, I wouldn’t be writing this today. It took one weekend to change my perspective. It took a few hours to remind me of all the things I somehow forgot. It took only a few minutes for me to realize I was not a woman of fear, I was a woman of faith.

I want to start by running down a short list of the benefits to beginning a relationship with one of women’s favorite bachelors, fear. Fear is a seductive and mysterious partner. Many women enter into an often secret relationship with fear while juggling relationships with a spouse, children and/or their friends. It’s a relationship familiar to most women. One thing is for certain, it’s hard to hide this secret affair women have with this sly beau because there are signs that she is indeed cozying up to fear. Women will make time to meet regularly with this companion; in the middle of the night instead of sleeping, nervously inviting it along to appointments, hiding it in a drawer while it dictates her at work, or she can be seen fighting with it while she anxiously watches her kids at the park. The question is, what is so great about fear that makes women want to wedge it, if necessary, into their life? And once there, stubbonrly hold on to it?

Lets expose fear for what it is by illustration. If fear were on a dating website, I will guarantee the profile would read something like this:

Name: Fear (a.k.a. Anxiety, Distress, Doubt, Panic, Unease, and Worry) ~Sounds great thus far, right?~

Age: Timeless

Physical Attributes: Heavy. Intimidating. Strong.

Best quotes from fear:

“I want to change every last bit of you. For example, I can help rid you of that haircut one handful of hair at a time. I can also help you lose weight by reconditioning your digestive system one stomach ache at a time.”

“I will occupy every last of your thoughts. You will no longer have to crowd your mind with nuisance pleasantries.”

“Eventually it will just be you, me, and our blossoming relationship. You won’t have time for anyone else.”

“I want every moment with you and it’s okay if you want to stop doing those annoying daily responsibilities.”

Wow! Doesn’t every girl dream of a controlling relationship with something or someone who wants to change every last bit of the person you are or want to become? If your answer is “no” then you need to reconsider what kind of relationship you are seeking when you allow fear into your life.
Why do we keep choosing fear from the list of available companions? Why do we fool ourselves into thinking that choosing to partner with a controlling emotion is normal and acceptable. We deserve better!

If it were up to me, fear like all emotions, would be defined like a drug rather than an emotion. Emotions would be required to list all potential side effects, then we would know the long term effects of every emotion. It’s no wonder women have such difficulty navigating through life being the emotional creatures we are. I know I can be a ball of numerous different emotions at the same time which means I am also experiencing a great deal of side effects. So instead of choosing to look at the dating profile of another emotion, let’s look at this profile.

Name: Jesus (a.k a. Savior, Son of God, Hosanna, Friend)

Age: Eternal

Physical Attributes: Scarred while making the ultimate sacrifice.

Best quotes to describe Jesus:

“….He will not grow tired or weary and His understanding no one can fathom.”

“For his anger is but for a moment, and his favor is for a lifetime….”

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you….”

“The Lord is slow to anger and abounding in steadfast love, forgiving iniquity and transgression….”

“….I have loved you with an everlasting love….”

Which of the two profiles would you choose? Would you choose the one that will take over and control your life or the one that loved you before he met you? Do you choose the one that will build upon the ashes of the broken person it makes you or builds you up and loves you unconditionally? One cannot coexist with the other. The Bible is full of versus telling us not to fear. Here are a few more examples.

“Do not be anxious about anything, but in everything by prayer and with thanksgiving let your requests be known to God, which surpasses all understanding, will guard your hearts and minds in Jesus Christ.”

“Humble yourselves, therefore, under the mighty hand of God so that at the proper time He might exalt, casting all of your anxieties on him, because He cares for you.”

“There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love.”

“I say to those who have an anxious heart, ‘Be strong, fear not! Behold, your God will come with vengence, with the recompense of God. He will come save you.”

God knows the profile of fear. He knows how it destroys lives. He knows how it will destroy your heart. He understands how crippling fear can be. He is concerned over the power fear can have over you. You could read a verse where God encourages us not to fear at least once a day for over a year. Choosing a relationship with God means that you no longer need a relationship with fear. A relationship with fear is a destructive affair. Fear wants you to doubt God. Fear wants to you think there is no joy left when times are difficult. God says that the most joy is found in times of deep dispair. God wants us to know he cares deeply for us and he will show you victory in all circumstances. He wants us to know that the true love of God is free from fear. His love is confident and sure, and He loves you exactly the way you are. When you choose Christ over fear, when you give God control, no matter what happens, there is victory in Him. We can have the confidence to call ourselves women of faith when we obey His words and put our trust where it belongs, with Him.

I came back from the conference that weekend with a changed heart. I let go of fear and grabbed onto my faith. I have confidence that my life has purpose and meaning, especially with the difficulty that ultimately builds my faith. Each day I remind myself to lift my thoughts to Heaven and see the one who loves me enough to allow suffering that brings me to joy.

*d*

More Than Just Coffee

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Lately I have been wondering if I have been truly in love with something or just the idea of that something. For example, I decided at our last monthly grocery run that I wanted to try to be a coffee drinker. It isn’t that I haven’t had coffee before, I was one of those people who got a coffee maker for a wedding gift ten years ago and used it maybe twice. I love going to our local specialty coffee shop and indulging once a year but making my own wasn’t anything I was ever interested in. Now I thought I’d give it a try for a number of reasons; I would rather get a small boost of caffeine from a small cup of coffee versus pop first thing in the morning, my RA has had me running on fumes, and I love the smell of coffee. I have been spawned by long and large group of coffee drinkers. I would smell the lingering aroma of it from home to the home of a relative, and every Sunday morning at church. The Baptist couldn’t wait for a coffee fueled sermon followed up by coffee fueled fellowship. The thought had occurred to me that I had an emotional attachment to the smell, and not the taste. It’s probably true. We were between housing when we lived with my eighty-something year- old grandparents who brewed coffee in the morning, reheated it in the afternoon and anytime they got a chill, which was quite often for my late grandfather. I miss him dearly and my decision came upon the heels of a year since his passing.

So we’re at the grocery and I stopped and stood in the coffee aisle taking in my limitless possibilities. I admit that I was a bit shocked by the number of choices I had and I am not a decisive individual. My son cheered me on as any bad influence of an eight year-old would. Apparently drinking coffee is a huge thing for third graders at his school…. So after telling him to stop taking out every interestingly packaged coffee and coffee mug for his new habit, I chose a very girly vanilla cupcake flavor coffee. Heaven forbid my coffee would actually taste like coffee. One package of coffee filters and a over indulgent container of chocolate caramel creamer later, we were headed home.

I returned home more than eager to brew my first cup, but where was that coffee maker? I had a frightening thought that I may have pitched it in our last move. Why not? I never used it anyway. I kept frantically searching as I secretly began to repremand myself for throwing it out. I don’t like throwing anything out for this very reason, I’d have to buy another one and I know that wasn’t going to happen anytime soon. Finally, I found it! But then I didn’t know how to use it. Luckily the people at the girly coffee factory want to make sure all of us novice coffee drinkers could make a cup so we could thus get hooked. Great idea! I got it ready and began to unload groceries as it brewed. My husband thought I’d surely made it wrong when it only took a few minutes to brew my quarter pot of coffee. Then I had to find a cup to put this newly acquired liquid gold in. I certainly had some coffee cups as I am avid cocoa drinker in the winter months. One coffee cup is all I found. Darn. Then by chance I found an awesome mug fit for a coffee pro. I washed it, poured my first cup, and it was weak. I made it too weak. I was going to need more zing than that keep me going during the day. The second cup was amazing and I felt special sipping out of my fancy cup. For the next few mornings my coffee was already auto brewed by the time I came downstairs. I had a bit more zing in the a.m. and I began to see why people insisted on starting their mornings with this stuff. Then the disappointing happened, I started having terrible heartburn. I cringed when my mom suggested it was the coffee. After all that trouble, it was causing me heartburn that could be mistaken for a heart attack.

This afternoon rolled around and in the true spirit of the Midwest, it was below normal temperatures and a hot cup of coffee sounded great. I brewed it and it is still sitting there an hour later. I haven’t touched it. Do I dare chance the feeling of looming death for my newly acquired taste? Today I may be satisfied with my emotional attachment to the smell.

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I am more disappointed that I once again can’t be like all the other “cool” people and start my day off with a jolt of girly coffee goodness. I can live with reducing my consumption but what about that smell? It reminds me of home, loved ones, and a church family that felt more like my real family. Maybe I need to think a little harder about sporadically falling in love with an idea because it seems like those ideas for me don’t pan out in real life.

My daughters have been playing together more as my “baby” is now a year and a half of busyness. She follows her big sister with her ride on toy, they play with the tea set together, and they frequently say “Bye!” as they leave for their pretend jobs . It makes me wonder what it would have been like if I had a sister. I have been in love with the idea of a having a sister forever. I have seen cute little posts on social media comparing a woman without a sister to one without an arm or some other nonsense. Like I had a choice about how my family dynamic played out. I hoped I’d someday have that faux sister that I could go shopping with, call on the phone, and we’d celebrate all of life’s joys together. But from what I see, it isn’t as glamorous as I had imagined. Sisters fight. I don’t like to fight. But I still wonder.

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And then I wonder about all the things I may have missed out on; a college degree, a full time job, and all the dreams I watch others live out. Those notions are so much harder to live out than buying a four dollar package of coffee off the shelf. So I learn to accept life as I have it. I have notions about what I think life is all about and no one knows what my life is really like. So I keep dreaming about those little things. Are they what I really want or do I just like the idea of it all?

I am awful good at looking idealistic. I often seem like a pillar of strength or maybe a beacon of hope, but I complain about the circumstances out of my control just as well as the rest. Why does my coffee have to give me heartburn? Why am I not worthy of meaningful friendships with other women? Why am I sick? Why are we drowning in medical debt? Why are we not living out this dream life? And on and on….. The truth is, things aren’t easy. We spend time doing a lot of things we’d rather not. Last night we spent three hours preparing and sorting paperwork to fight social security. Yes, they want to take back payments from two years ago just in time for the holidays. My desk is full of paperwork only special needs parents or the chronically ill can appreciate. “Here is your half ton of paper work Mrs. M.! Good luck with all of that because life understands how easy you already have it.” Yes, nothing is easy or as it seems. I can be joyful in the face of adversity but I can be equally as disappointed in those things beyond my control. I just keep trying. I keep smiling and I try putting my faith in things that have a special place in my heart whether it be a friend as close to my heart as a sister or my husband who spends three hours on the floor digging through paperwork. As for the coffee, the trouble was almost worth that smell of home but then again I guess I can find a candle for that.

*d*

Beauty in a Different Wrapper

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*d*

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