Exercise Your Faith

image
It seems like the most work I do with my elliptical making sure it isn't used as a coat rack. "Hummmm."

When is the last time you picked up a work out routine and stuck with it? This doesn’t mean jumping on the treadmill for five minutes once a month or purchasing a YMCA pass after the first of the year, I mean starting a workout routine and sticking with it. I have and it’s been hard, especially with small children but I can’t let them or any other excuse stop me.

So it’s a good thing that my husband and I own quite a bit of exercise equipment. I had ample space to use them when we lived in our last house because we had a nice sized unfinished basement. I couldn’t make the “I’m too scared of the creepy basement” excuse because we painted the block walls and furnished it. I had my own space and my own time to work out and I enjoyed it. I missed a day here or there but I had successfully kept up with my routine. Besides having alone time, my next biggest motivator was money. I was involved in a biggest looser contest a few times while I worked at my last job. We fairly judged the winner on the person who lost the most mass body index versus weight as we were all various sizes, shapes, heights, and weights. I never won but I felt a definate improvement in my health and well being. Despite the obvious realization that working out had made me feel better, I eventually went back to my old ways and working out was no longer on my agenda.

Old habits, or lack thereof, are hard to break, even when they are habits that improve life. If a hundred people were asked to follow a guideline to have a happy life, a guide that guaranteed happiness, I wouldn’t be surprised if more than half of those people stopped living by the guide. Moreover, I wouldn’t be surprised if the majority of those same people would then complain about any unhappiness they would then experience. I am going to be very honest, I’d be the complaining quitter. I know because I am already one. I was given a guide to a happy life and quit long before I ever gave it a chance to change my life.

When I committed to my Christian faith and was given my very own guide to life. Like many people, my Bible rests on my nightstand. I guess I think if I sleep close to it, I’ll absorb all the knowledge I need. It’s like buying a gym pass and expecting to lose weight by the mere possession of it. Staying fit in any capacity requires effort. I was putting zero work into my life and wanted to claim I was physically and spirituality fit. I was nothing more than a fraud. In many ways, I still am. By giving into my old habits and choosing inactivity, I am settling for the mere fscaud of good spiritual and physical health. Why do I settle when I can have the real thing? It takes work.

I wanted the illusion of fitness because it requires none of the work it takes to be fit. This was especially true for my physical workouts. I was already so tired before even starting my workout that I felt too tired to try. My husband told me I had to push through the fatigue and it would get better. I would grin sheepishly because I knew he was right but I also knew my body was sadly too accustomed to the lack of activity. I knew working out would eventually give me more energy, it was just too hard to get myself psyched up enough to try again. I had a hard time giving up my motto, “Plenty of rest will make me feel plenty rested.” It was a misconception based on my lack of knowledge. Plenty of rest just made me lazy. Again, the same went for my spiritual journey. I got lazy. A lot of my distress came from my lack of biblical knowledge and principles. Yes, once a week I’m the one at the edge of my seat listening to a sermon, but I wasn’t opening my bible at home. Once a week wasn’t enough! Just like my physical fitness, I was stagnant by my own lack of knowledge and I was unwilling to change.

There was one thing kept me from being physically or spiritually fit, one hour. Yes, just an hour. I was not willing to put a mere hour to strengthen myself physically and I was only willing to put in more than one hour a week spiritually. Physically, an hour a day would be enough to improve my physical well being. Here is a quote from an online article found here: http://www.fitnessmagazine.com/workout/tips/power-surge-the-hidden-benefits-of-exercise/ about the benefits of exercise within the first hour, “Within One Hour of Exercise… You’re protecting yourself against colds, flu, you name it. Exercise elevates your level of immunoglobulins, which are proteins that help bolster your immune system and ward off infection……..”

“You’re feeling zen. Mood-enhancing chemicals, like serotonin, dopamine, and norepinephrine, flood your brain for a couple of hours post-exercise and for up to a day if you’ve competed in an endurance event, like a marathon. Stress? What stress?”

Wow! One hour of exercise, even within the first hour, has great benefits! Why is it so hard to find that one hour a day if the benefits are so great? Physically and spiritually, one hour a week won’t do. It isn’t enough!

There are those times when fitness becomes a priority with ample motivation. Money was definately mine! Joining the dating pool also seems like one of the best motivaters besides a doctor’s suggestion to do so due to failing health. When someone is searching for a mate, keeping themselves physically fit and well groomed is a good way to increase the chances of getting noticed by a potential mate. When finding “the one” becomes a priority, so might other things like exercise. It’s serious business that requires some serious effort. Someone once told me, “Most people are on their best behavior while they are dating. If the person you are dating isn’t on their best behavior now, it won’t get better after marriage.” It makes sense right? A lot of people put their best foot forward when they are seeking a spouse. If they believe they found “the one” a few things have to go into the relationship to ensure they can then make it to the alter. One of the biggest and most important components needed in a relationship is time. How many couples marry immediately after the first date? Not many! Time is needed nourish the relationship. Time is also needed so the couple can be assured of their compatibility. If no time is spent on either of these, it would be a nothing but a relationship between two strangers.
The only way to turn a stranger into a friend is to spend time with that person.

We need to nurture our relationship with God just as much as our most intimate relationships. We need to act as if we are dating the Lord. We need talk to the Lord, spend time asking questions and telling him about ourselves. We need to continually build trust that is made through our relationship with him. Like any other relationship, the more we know about someone, the more we can trust them. Most people would like a relationship where they can say they can trust their spouse with their life. The same should be true with our relationship with God, but most of us choose not to trust him with our lives. We worry and fret, displaying no trust relationship with our creator. I once heard that we should never worry about the outcome of our troubles because no matter what happens, we win when we trust in the Lord. If we live, we win another day to bring glory to the Lord and if we die, we win because we are finally reunited with Him in death.

Imagine a relationship with the Lord that puts you at peace with any circumstance in life. It doesn’t mean we won’t cry, hurt or feel pain, it means that we can always have the peace that comes from being in an intimate relationship with our Lord. A couple weeks ago I had a worrisome thoughts concerning my son’s upcoming neurosurgery. I couldn’t sleep and my worrying got so bad, I woke my husband from his sleep. I asked him if he thought we were making the right decision. He woke, assured me that he thought we had made the right choice and fell back to sleep. He was so confident that he didn’t stay awake to worry with me. With no one to share in my fear, I decided to simply hold his hand. In this closeness with the person I trusted the most, I calmed down.

This is what God wants to do for us. He wants a loving and trusting relationship that eases our fears and worries by our mere closeness to him. The only way we will get there is to spend more than one hour a week with him. One hour can truly change our lives in so many ways. One hour can transform our physical and spiritual being but it takes effort. What will you give up to get there? Will that couple hours of television a night bring you the peace and comfort God can bring you if you just spare him a few minutes of your time? Will time not spent on something meaningful be a regret you confess on your deathbed?  One hour………. think about it……

*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*

Letters to My Son

This begins a series as we prepare for the next step in the care of our special needs son. He is being referred for brain surgery in the next few months. To follow our journey, I have decided to express my thoughts about the process through letters I will write to my son. This is the first of hopefully many over the course of this scary and hopeful journey.

image

Letter 2:

image

Dear Little Buddy,

We are still waiting for the call to schedule your visit to the neurosurgeon. The longer we wait, the more I ponder the impossibility of this trip. There are so many things to consider; the expense, the logistics, the care of your siblings, and the possibility of being away from home for a considerable amount of time. I am very saddened that your declining health has made it necessary to go to this extreme but it’s not your fault and I don’t want you to feel bad. It can be easy to carry guilt when you need help due to your disease. I know because I also have a disease that has made it necessary for me to ask for help on occasion. I have a disease called Rheumatoid Arthritis and it has changed my life in many ways that mirror how your life has been effected because of your disease, Tuberous Sclerosis.

Since I found out that I have this disease, I have needed to take different medications, some very similar to medications you are or have already taken. One of my medications could effect my vision and I have to it checked every three months. It wasn’t that long ago when we were taking you to the optometrist for the same reason. Although our specific medications are different, I also take an anti-epileptic and a medication that is used to treat cancer in high doses. I look in the mirror and see how the appearance of my own face has changed just like yours did as an infant when you took a medication that I am taking now. The physical changes we both have experienced doesn’t end there, we are both weaker than we were a year ago. I have benefited from a rollator and we will be meeting to fit you for a wheelchair next month. It could all be a coincidence but I think it’s more. Through my struggles, I get a rare chance to understand you more.

It is also through these similarities that I can sympathize with the side effects of your medication, the frustrations when your body feels the effects of failed medications and therapy, and the never-ending rotation of doctor appointments. Unfortunately it also means all of these things double for our family. We spend twice as much time waiting at appointments, twice as much money on medications, therapy, and surgery, and double the worry over getting through each day. Those are big issues for us, but we care about you above all.

We are always thinking about how to make your life a bit easier. It is in these thoughts where I have struggled to help, and sometimes, understand you. You have done things that seem irrational; sometimes you scream, hit your face, beat your head on the wall, or you will hit me or someone else in the family. It wasn’t until I too started to feel quite irrational that I began to understand you. In the last few months I have had to start numerous medications and I didn’t anticipate the variety of side-effects I began to experience. Unlike you, I have a full understanding of what is happening to me and yet I still cried and wanted to shut down. Since you don’t understand your situation as I, it must feel like your life and/or your body is out of control. How can I expect anything but an occasional meltdown or outburst from you? I have nights where I can’t verbalize my own emotions, yet I have expected that from you. I have expected you to do more than I have been able to do myself, and for that my little buddy, I’m sorry.

I am sorry for all the times I haven’t been patient and understanding. I am sorry when I haven’t searched beyond your anxiety and outbursts. I am sorry when I haven’t been a safe place for you to fall. I know I have needed a safe place where I can have no fear rejection or judgement. You deserve the same. It has been hard for me when you have had terrible days and have taken it out on me. It’s hard to be hit or kicked by someone you love. It hurts my heart because I want to spend my time enjoying you, not fighting with you.

Don’t forget that little buddy! You are amazing. I may wish we could enjoy our time together without the some of the bad things that come our way, but I will take you and our situations just as they are as long as we can be together. I am also thankful for my own struggles that bring me a closer understanding of you. It makes me a better person and a better mommy. You have taught me a greater compassion for others and the value of patience. I also promise I will do my best to remember you are doing the best you can despite the mountains that stand before you. You have prepared me for all the difficulty I personally face because you have been an example of bravery. Yes, you are brave. You don’t have to know you are brave to be brave.

Thanks for being my companion in a journey two people rarely get to have together. I look forward to climbing the next mountain……together……because bravery doesn’t mean you have to do it alone.

*d*
(Mommy)

☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆

Dear Little Buddy,

It was about eight years ago when we found out that you were going to come into our family. You weren’t planned, but most miracles aren’t planned. You were born on a beautiful July morning. You were perfect. We brought you home and I imagined a bright future for you but some of those dreams quickly became lost. You were three months old when you had your first seizure and the words Tuberous Sclerosis Complex came into our lives. A few short weeks later and we learned you had also developed a rare and catastrophic form of epilepsy called Infantile Spams. These innocent looking seizures made it a very real possibility that you would experience developmental and physical delays. It was hard to imagine the same bright future as we did the day you were born. We were so very sad and the future looked as gray and solemn as our broken hearts. We had never heard of this disease and here it had changed the way we looked at you.

Yes our hearts were changed. We loved you even more and we were more determined than ever to help give you a wonderful life despite this new knowledge. Your disease was now a part of our family because it was a part of you. You weren’t the same kind of perfect we once thought you were, you were a unique and special kind of perfection. You see, sometimes the world can have a different definition of what perfect should be but that isn’t how we define it. We want to love perfectly with all our imperfections because none of us are perfect. Because you are loved so very much, this letter is now going to be even harder to write.

After seven years, we have been unable to control the seizures that are a biproduct of your disease. Daddy and I have tried very hard to get you every resource possible to help you in your fight. We made big changes when we decided to take you to a clinic that specializes in Tuberous Sclerosis. We did this so you could be in the care of neurologists that are the best at treating others just like you. We have spent the last seven years exhausting every avenue and turning over every stone to control your epilepsy and help you make the most developmental progress possible. You have worked very hard too. You have been in numerous therapies since you were a baby. You have fought hard after every seizure increase and every regression that happened as a result of those increases. We have all fought so hard together for a very long time. I am so sorry that we couldn’t make it all better. This reality makes me sad when I see the look in your eyes during a seizure. You want Mommy and Daddy to make it all better and we can’t. All we can do is be strong and comfort you.

Because of all of this, a big decision had to be made. We know the last few months have been hard for you. Your epilepsy has been making you weak. On school mornings, I see how hard it is for you to walk down the steps and up into the bus. I see how hard it is for you to do so many things that were simple to you just a year ago. I cry at night because I know it’s been harder for you to understand and communicate with me. I see all the terrible things epilepsy has done to my wonderful boy. But I know there is still fight left in you, I can see it. I see your fight every time you get angry and scream in frustration or have an outburst of anger. I cannot imagine how difficult it is to have so many things going with you and to you while having no control over what happens. I try to remind myself of this every time you get angry with me. I try to remember that you need me to be strong because you are still so little and you really have no way of understanding what has been happening to you. I will continue to be strong with you because we have one more fight we need to face together.

We are going to see another doctor in another hospital that may be able to give you another chance at living a life free of the seizures that done so much to you. He is a neurosurgeon. He may be able to get to the root of the problem and remove what is causing your epilepsy. It is a long trip and we may be gone a long time but there is hope. This is just the beginning of a long process and we have no idea how we are even going to make this happen. The wheels are in motion and it began with a referral to this hosptial. There are still a lot more details to work out and a lot of people want to help you little buddy. Many, many people would like to see you seizure free and making developmental progress.

image

Remember when I said you were a miracle? Well, you are for many reasons. At one time I thought a lot of good was gone from this world. I had lost a lot of faith in myself and in others. Then you came along. In the middle of all the tears, worry, and sadness surrounding your life, many people came to help. Friends and strangers alike reached out to give us hope. When we needed hope and love, someone was always there to show us that there was indeed good still left in this world. You taught us many wonderful things too. You changed the person I am and who I want to become. You make me see that every single day is a gift. Through you, I have a daily reminder that I can only appreciate those things that are here today. I wanted so badly to live in a future made up of my dreams. When you were diagnosed, I could no longer do that. At first I was sad that I could no longer clearly envision your future, but now I see the true blessing of living for today. Your life is a miracle because of how you have changed lives just by being here. You may be small, you may deal with more than most do in a lifetime, but you are capable of doing even more. We may be in charge of seeking the best help possible and doing it in a big way, but in the end, you will have the victory because you will win this fight.

I know I may never read this letter to you. I really don’t know if you would understand. I’d like to think that despite your developmental delays, you do hear and understand more than I know. So we will talk about the next battle we will face together. I will remind you of how strong you are and how much we love you. Your daddy and I would give all that we have to help you. It seems like an impossible journey but we will get there one way or another because you are worth it. Don’t ever forget that. Even when you have had the most terrible day and you take it out on one of us by hitting, screaming, or spitting, or even when you have a terrible meltdown because life is overwhelming, we still love you. We see the hurt under it all and we want to help. No matter what happens, you will always be our little buddy and you will always be loved. Remember this when the next leg of our journey becomes difficult. Sometimes we must decide to take the most difficult of roads because they lead to the most hope. I pray we get there and the best is waiting for you at the end.

Love,
Mommy
(*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*

Wait, Wait, Wait…..

image

I’m waiting in the doctor’s office. It’s apparently my thing now. Some people go out to eat, some go to bars, while others go shopping, I get to wait on doctors. I should have been forewarned about my present course of lifestyle long ago. But, unfortunately, there are many things you won’t hear once you or someone you love is diagnosed with a chronic illness.

For instance, I spend a lot of time rearranging my schedule or finding someone to help me take care of my children while I wait. I wait at the doctor’s office, hospitals, pharmacies, and if I’m really lucky, I get to wait with my ear glued to the phone while on hold with the insurance company, clinics, and my personal favorite, social security (eye roll). The most frustrating part, besides all the waiting, is knowing I will be doing it all again for follow up appointments, emergencies, or fighting with insurance and social security. It’s a guarantee. Hours of my life are spent with my butt glued to a chair dealing with something associated with my illness or that of my son.

Getting my son one of his medications got bad a couple years ago. It was so bad that I was on the verge of a breakdown. My son has a severe form of eplispsy and the best medication used to treat it was offered solely through a specialty pharmacy. This pharmacy needs a disclaimer, “Warning: dealing with our business is bad for your health”. In reality, that’s a problem with a lot of businesses and people who are supposed to help those with chronic illness, they really don’t.  All the extra appointments, phone calls, and paperwork just add to the already mounting stress of chronic illness.

So people like me wait. We wait for a break in hopes that something easier will come along. We wait for improvement in health so we can wait at the doctor’s office less often, we wait for the right medication so we don’t have to deal with pharmacies, insuance, and new medication schedules. We wait, wait, wait…..

When there is little in terms of health that we can control, it’s nice when we get a helping hand, a word of encouragement, or we are at the receiving end of a kind deed. And thank goodness those nice things don’t come with a wait…. they come into our lives and remind us we are not forgotten while we spend a good part of our days doing things we’d rather not.

If I have to wait for something, I’d love for it to be a vacation, a home improvement,  an evening, or better still, a weekend away but these things are usually physically and/or financially out of reach so that’s when the company of a good friend, a laughter filled conversation, or any time we can get to enjoy the things we love are invaluable. Chronic illness changed how I look at life and what’s important. When my mom takes time out of her day to wait with me at my appointments, my husband volunteers to be the one to fight with the insurance company, or my friend drives her shoulder to my house for me to cry on, it’s a big deal. When I feel like so much has been taken away, the little things become the big things that matter.

I know how hard it can be to find the right words when someone is struggling. In truth, there are no right words, what matters are those well intended actions. Even if you don’t know what to say, pick of the phone and try something like, “I wanted to see how you were doing today,” send a text, mail a card of encouragement, offer a smile, or volunteer a few minutes out of your day to wait along with someone like me or my son who spend a lot of time doing it alone. Don’t be discouraged if you don’t know what to say or do, being in the company of a friend is always worth the wait.

*d*

Faith Not Fear

image

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*