Love for Today

image

Tonight the phrase “live for today” has been ringing in my ears. I’m in significant pain. I have rheumatoid arthritis and it has been destroying my joints quickly over the last year and a half. I suspect I have had it longer than the year and a half since I was diagnosed but the symptoms that led to the diagnosis were too much to ignore after I stopped nursing my fourth and last child. It’s been quite a ride since. My rheumatologist thought I had a pretty mild case until last summer when my symptoms became severe. The disease has made it it’s business to deform my hands, destroy my shoulders and knees, and cause me daily pain.

Tonight I am once again in my bed watching a movie, writing, resting and desperately doing anything to keep my mind off of the pain. While my family plays downstairs, I am up here in pain, wishing the disease would go into remission. I know I am not alone. There are many people just like me who are wrestling with disease, desperately wishing the pain would stop. Each day I’m in pain reminds me of the damage the disease is doing because the deformity of my joints doesn’t happen without pain.

Pain is all I think about these days. How much pain will I wake up in today? Will I be able to get my housework done? Will I be able to handle one of my son’s serious seizures? Can I get through the day? There have been numerous days when my little girls played a game on my bed, danced around my room, and seemed more than understanding when their mommy has been unable to get out of bed. Now that summer is here and all four are at home, how will all of us handle one of those inevitable days?

Today a picture did me in. It was a photo a mom snapped and posted on social media of her daughter jumping into the pool. She captioned it something like this, “my daughter is getting braver during her swim lessons”. It broke my heart because none of my children have had swim lessons. Not one of my children from nine years old to two knows how to swim. The excuses for which have amounted to one or all of the following; too many kids for the pain, the added stress of taking a special needs child, and financial stress. My kids miss out on a lot and I know I am to blame. Now that I have rheumatoid arthritis, I’m not sure if my son will ever have the opportunity to hit a home run during summer t-ball or if I will be able to see my daughters in a dance recital. Disease has not only robbed me, but each one of my kids. On the other hand, I get to spend a lot of time with my children. I get to enjoy every last minute of their childhood and I wouldn’t trade that privilege for anything in the world. I know I can’t give them all the opportunities I think they deserve, but my husband and I have tried to give them mommy. I have been here as much as possible since our oldest was born. I had a part time job for five years but quit to take care of our medically complex child three years ago. Mommy may not be able to take them to all the places they want to go, but they know I will always be here for them.

These thoughts brought me to “live for today” and was finished with the thought “because tomorrow is never guaranteed”. Nothing drives this point home quite like chronic illness. I never forget that my disease could be damaging my organs at a speed equal to the damage it has done to my joints or epilepsy could take my little boy as he sleeps at night. It’s hard to take the advice of others who think I should “keep smiling” or say, “hang in there!”. It’s hard because no one can fill in for me and take the non-stop mental or physical pain. One compounds on the other until I finally break. About once a month my husband can expect me to cry through a box of tissues. Every last worry comes spilling out and I blame myself for all these thoughts and more. Maybe it’s then when the reality of our life becomes abundantly clear; so much has changed in very little time.

It wasn’t that long ago when I held my newborn son and he was seemingly healthy. I looked at him and saw a lifetime of memories in his little eyes. I could envision a future filled with all of those things a mom expects. It took a ten second seizure to change all of that. Our little boy had an incurable disease and the future didn’t look as certain. Two years ago I could hold each of my children and not think twice about how I was going to get through the day. Now my children crawl on my lap to be held and they know they have to be careful around their now fragile mother. I wake up wondering how hard it will be to get through the day. Did I really appreciate everything I had before it changed? Do I appreciate what I have now? I hope so but since I know how fast things can change, I try to thank God for today. Today is all I have and each second beyond that is a gift. I’m still struggling with each second but I’m glad I have another.

Disease can change the future we may have anticipated for our son, my physical appearance, and the way we look at life but it can’t take away the love in this family. Disease didn’t anticipate unconditional love. We don’t have to guess if love will prevail in sickness and in health, it already has. There is no doubt if my husband will love me even if I don’t look like the woman he married because I already don’t. Our children will never wonder if something they will do will alter our love because they have witnessed it prevail through it all. I think I should change “live for today” to “love for today”.  Disease can take what it will but it can’t take our love, nothing can take that, and for that, I am truly thankful.

*d*

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.

image

(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:

image

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.

image

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….

image

He helped lift me to my rollator….

image

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?!”

image

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.

image

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.

image

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.

image

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.

image
(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.

image

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.

image

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.

image
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.

image

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.

image

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

image

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

image

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.

image

….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*

Extra Baggage

So this was the weekend. The weekend my husband and I would spend a night away from home. It has been six years since we were able to do it last. Six years ago we only had one child. In that span of time we had three more children and life got much more complicated.

It’s the added stress of a son with complex medical issues and my own chronic illness that made a small getaway so important to us. My husband and I arranged this special weekend months ago and we have been talking about it ever since. We have been dreaming about uninterrupted sleep, a schedule free of obligations, and most importantly, much needed time alone. I have been begging for a weekend away for a couple years now. I think the guilt of being away from home and asking someone else to care for the kids, especially one with special circumstances, kept us from following through. It has also been hard to set aside money to fund a weekend away. We were determined this time and we set a little money aside and took family up on their offers to spend the weekend with our kids.

Unfortunately, my RA had decided it too wanted a vacation. It reared it’s ugly head Saturday morning. The pain was so intense that it took me twice as long to do my usual morning preparations. Door knobs and car doors looked more like thorns and sandpaper. During what felt like a grudge match with my make-up and curling iron, it struck me that I may have to cancel our long awaited get away. We weren’t going far, only twenty minutes from home, but when experiencing that much pain, it’s hard to leave the comforts of home.

I decided I wasn’t going to cancel although I was disappointed and upset that I had to be in so much pain on such an anticipated day. I had to understand that I can take a vacation, illnesses don’t. I was upset because I thought my illness should. So despite the setbacks, we enjoyed our time together. We came home early the next day because I was too sick. We came home before lunch and I fell asleep on my chair.

I realized I wasn’t *d* with Rheumatoid Arthritis and Fibromyalgia, I was *d* living along side those diseases. I didn’t want to make room for either in my life. I was trying to set myself apart from the diseases in hopes that I would get better and it would just be “me” again. It’s all quite silly because my son has an incurable illness we have learned to accept. My problem is denial. On our last overnight stay six years ago we stayed near an amusement park and I was riding roller-coasters, walking long distances and I took no medication. Six years passed and changed very quickly. I’m not sure how I’ll finally accept sharing my life with these diseases.. maybe I never will.

That’s the way life is, things change and we have to learn to live with those changes we can’t do anything about. My grandmother had to adjust to life alone after my grandfather passed away. She learned to drive his lawnmower and drive herself where she needed to go because he wasn’t around to do those things with her anymore. It’s been a hard two years but she is adjusting. I have always thought of my grandmother as a strong person. Among many things, she is a beast cancer survivor but you’ll never hear her complain. I know I want to be more like her. Both she and my mom are strong women, and it’s usually not by choice. They have been forced to make room for the unexpected trials of life

This weekend had a good lesson for me; keep going despite the unexpected. I didn’t expect to be in terrible pain the day of our departure, but I can never anticipate what days will be the most difficult. I have to keep trying to enjoy what I can, when I can. I was in a lot of pain the entire weekend but I wouldn’t trade a minute of the time I got to spend with my husband.

I guess I need to think about whether I make room for the unexpected  gracefully or make it come by force; either way it’s coming. I like it when I can do it with something to look forward to or at least with a smile on my face.

*d*

Questioning Faith

image

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

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

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

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

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

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

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

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

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

*d*

Finding Your Perfection

image

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

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

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

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

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

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

Love,
Mom (*d*)

Critics Will Be Critics

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

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

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

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

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

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

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

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

*d*

Finding the Right Umbrella for the Rain

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*

The Clean that Holds the House Together

image

If someone were to walk in my house, they may be tempted to say, “Wow! Her house is so clean and organized, she must have herself together!” And that’s exactly what I’d want you to think. The honest truth; what is going on inside of me looks nothing like what I allow to show on the outside. In fact, if I kept my house in the same condition as my mind, I’d be the next to appear on a television show that exposes hoarders. I can imagine a host strolling up to a tiny little door and hyping up the audience at home by saying, “This will be the worst hoarder ever exposed on television!!” The door opens and there I am in my ratty pajamas standing knee deep in the dark and dirty crevasses of my mind. Spiderwebs hanging where a college degree should be, rodents are gnawing holes in the time I take to care for myself, and I’d be balancing knee deep in the garbage of disease. Behind him come all those shocked faces of my family and friends who thought they knew me better.

As sad as that exposition would be, it wouldn’t be too far from the truth. I admit that I am sometimes a prisoner to my need to keep the world around me in order. If I know someone is coming over, even if I know they won’t be coming into the house, I straighten it up. I make sure I include cleaning the house as part of my afternoon routine. I squeeze it in between baths, making supper, starting homework, and all before my husband gets home. I’ll even do it if I am already running on fumes. He never asks to have the house clean when he comes home and he knows the mess I can be on the outside and inside but I still want him to know I am trying. I still want to feel like I have a purpose despite my disease or difficulty.

I have been this way for a long time, way before my son or I was diagnosed. It started with a family saying, “Everything has its place, everything in its place.” I think I was told this every time my childhood room looked like a disaster, and that was most of the time. I had the smallest room in the house and the most junk. Trying to keep it organized and clean was like trying to take out the weekly trash in a lunch bag. No matter how hard I tried, I never could get it clean. I eventually mastered the art of making things look clean when they really weren’t. I learned many tricks to accomplish this task, there was stuff the closet and hurry up and shut the door before it all comes out, shove it all under the bed and leave the comforter hang over to hide the mess, or my least favorite, don’t play with anything. I never really dealt with the mess, I just mastered how to keep it looking like I didn’t have the said mess. I was a kid, I hated getting rid of anything. I am still that way. I won’t get rid of anything that could be of use to me someday (yes, this thinking has come in handy). My house has refurbished decor of all kinds. I use and reuse things when I can. I don’t like to re-purchase something I once owned.

I get my hoarding tendencies honestly. My paternal grandmother is known for her need to collect things she sees as valuable. Anything antique is her specialty. I admit, the older the better when it comes to many items I wish to collect, but with limited funds and space, big or expensive items are not for me. I, like my maternal grandmother, find value in the little sentimental items that are easily collected and easily hid. My attic is full of school papers and artwork of my children that I don’t want to let go of. This spring I bought two extra large three ring binders and filled them with my favorite papers that the boys brought home from school. I filled up both binders right away. I know I should let go of certain items, stop cleaning my house to portray a less than chaotic life, but it’s how I cope.

Everyone has their own ways of coping with life. Some people shop (yes I have been known to do a bit of that when I have been depressed), my husband prays, some people drink, and other shut down. The list is limitless. It is important to cope with the difficulties of life in a healthy manner. Poor methods of dealing with these issues can lead to further destruction. I don’t know of any cleaning anonymous groups out there but if my habits were going to further stress my life, I’d find one. Thus far, I take the hurt or negative energy and channel it through a can of dusting spray or a vacuum cleaner. A can of cleaner is the only thing that has to worry about meeting my angry or distressed hand. At then end of my cleaning rage I can look around and feel a small sense of accomplishment. I know that sounds silly. There are many things in my life that feel out of control; my health and the health of my son, his autism, and our mounting financial concerns worsened by the burden of our diseases so I keep trying to do my best at those things I know I am good at like loving my children, trying to be a good wife, and yes, keeping our home kept nicely. It reminds me that I am still trying my hardest despite my difficulty. Since my job is to be a wife and mother, I’ll do the best I can at what I have been given. The day of concern will come when my house really does look like it should be on a hoarding show because that will be the time I have given up. Sadly, the illusion of a put together life is the only thing that sometimes holds me together. There are so many days when I feel like I can’t give anymore and any bit of accomplishment is a big deal.

I am continuing to work on those areas of my life that seem out of my control. Every day is a new chance for me to clean up those tattered crevasses of my mind and not just my house. Someday, I do dream of having the confidence of being able to open up my mind without fear of the mess inside.

*d*

Tearing Down the Four Walls

image

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*