Mr. “What If”

Almost everyone’s life story has a chapter titled “The One That Got Away”. The story line is almost always the same, someone amazing comes into the picture, but for some reason, doesn’t stay. The reasons for separation make up the climax of the chapter. The desire to stay with this person clashes with unforeseen events that change the course of the relationship forever. The end of the relationship writes itself a cruel paradox.

Sometimes both parties know why it ended, they were in two different places in life, one or both could not meet expectations of the relationship, or maybe there was too much distance between them. Sometimes the reason is unknown. Nevertheless, that person seems to leave a hole in the other’s life or a thought that never truly diminishes. Life goes on, other relationships come and go, but what about that “one that got away”?

I was seventeen when I met my “what if”. I had just left a relationship with who I’ll call Mr. Rebound.

(me at seventeen)

I came off of a bad breakup and ran into Mr. Rebound while out with friends. He was all wrong for me but I just had my heart broke. I wasn’t attracted to Mr. Rebound, but he made it known that he was interested in me. I felt a desperation to find someone who wouldn’t hurt me in the way I was hurt in my previous relationship and Mr. Rebound said all the right things. We dated for a while but something was missing, there was no spark and I couldn’t think of a relationship with him in the long term, so I ended it.

Some time after my break-up, Mr. What If and I were spending time together. I was a bit apprehensive because I had met him before, he was friends with my heartbreak. Spending time with him didn’t concern me, but the more time I spent with him, the more I felt a change in the way I felt with him.

When I started to have feelings, I began to overanalyze everything. Did his friend talk to him about me? Could I allow myself to be vulnerable again? Would I get hurt all over again?

His friend was my first intense relationship. I was very young and I had a hard time picking myself up after the breakup. Life for me was complicated beyond this breakup, so I decided to take everything very slow. I was afraid.

I was afraid of the feelings I was developing. I was afraid of getting hurt. I think he needed more than I was willing to give. As great as it felt to feel that spark with someone, it ended rather abruptly. He told me he decided to pursue a relationship with someone else. I was disappointed. I felt like it had ended before I allowed myself the opportunity to let go.

Of course Mr. Rebound was waiting with his promises not to hurt me. And because I believed all my fears had manifested, I went back to Mr. Rebound. The truth was, I was vulnerable and he interjected himself back into my life.

I gave up the passion I felt with Mr. What If for the promises of Mr. Rebound. I didn’t have to be afraid of my feelings when I wasn’t overrun by them. Sometimes control is lost in the moment and I tried to control too much with Mr. What If.

Many describe a good romance as a “whirlwind romance”. They get caught up in the emotions like the turbulent wind of a tornado, exhilaration and fear lift in unison. I have wondered what it would have been like if I would have just let go and let myself be taken in the updraft. I know I missed out on a passionate experience that could have broken my heart but that’s always a part of falling in love. Falling in love means letting go and losing that control. Why didn’t I see that great highs always come with the possibilities of crushing lows?

That’s essentially the mantra of a good life, live it as well as possible without fear. Fear kept me from experiencing the fullness of this relationship. Fear made me go back to a relationship that broke me emotionally and eventually ended four years later.

Staying or getting into a relationship out of fear is never a good idea because when a relationship isn’t pursued for the right reasons, red flags can be missed.

I missed lots of red flags with Mr. Rebound. I missed out on what I could have had with Mr. What If. Instead I was going through the motions, trying to convince myself that the “spark” didn’t matter. Relationships are worth going all in for, but with the right person and for the right reasons.

Once I realized I may have missed out on an opportunity to fall in love, I didn’t want to miss it again. This meant my first marriage ultimately ended in divorce. I was single for several months and I never had the opportunity to try again with him, so this chapter of my life closed when I remarried almost fourteen years ago.

Life has a way of using each experience for growth. Although I wish I could have changed some things in my past, my past helped shape who I am.

Every one of us has a story in our book of life that makes us ask, “What if I made a different choice?”

“What if I took the wrong job?”

“What if I moved to the wrong location?”

“What if it could have been wonderful?”

I don’t think the “what if” is as important as living life to the fullest to eliminate as many “what ifs” as possible.

Love without fear of heartbreak because a broken heart means one loved with all of their heart.

Live each moment to the fullest because you may not get a second chance.

So this is my chapter entitled “The One That Got Away”. Thank goodness it’s not where my story ends. There were still great things to come.

*d*

Thoughts After the Pain

While we were at Texas Children’s Hospital (my son was having neurosurgery work-up) we had at least 8 hours to occupy while my son had tests run on our last day there.. We passed by the chapel many times that week but I never had time to stop. The opportunity seemed right so my husband and I sat in the little chapel. It was round, the ceiling had tiny lights that looked like stars, and the lighting changed over the course of ten minutes or so until all the lights dimmed and the tiny stars seemed to twinkle. I admired the quaint little room for the ten minute round of lighting changes. As the lights went from dark to light, I felt a familiar presence I hadn’t felt in a while. It was the feeling of the most loved of friends. It’s the one friend that knows me like no one will ever know me and loves me more than anyone could ever love me. It was the presence of the Lord.

I have always thought of myself as a woman of great faith. I had inspiration to give to others in their times of need and I believed God could cover and heal any hurt, but for the past seven years, the hurt in my own personal life had grown and finally gave way to more doubt than unfaltering belief. Since my son was diagnosed, everything became more difficult. The older he got, the harder it was to deny what the disease was robbing from him. He has been denied the opportunities that naturally come to other little boys his age. Despite it all, my husband and I continued the same plans to grow our family as we had planned before either of our boys were born. He and I were blessed with our two daughters. Our life was indeed a mixed bag of blessings and sorrow. After his diagnosis, we would be blessed greatly with things like when our girls were born, but were faced with things like mounting medical bills that strained our finances so greatly that we’d barely were able to afford groceries for the month, if at all. Life felt more like a rollercoaster than the dream we had once envisioned.

Then I got sick. Many probably thought I became incredibly selfish when I anxiously wanted to find a cure for my Rheumatoid Arthritis when my little boy was still suffering. I may have been. I had spent the last seven years fighting for him and I didn’t want a disease to change that. I also didn’t want anything to take me from him, or any of my other children. I wanted to be here to experience the joys and sorrows because this life was meant for me and no one else, despite how much I wanted to rid our life of the lows we frequently experience. I wanted so badly to assure my place on this Earth with my family, yet my faith was weak. I didn’t understand why I had been handed this illness in addition to everything else we were given. “Why Lord do you give me a disease that is wrecking my body when you know I have a son with epilepsy? Have you forgot I NEED to physically assist him?” Enough was enough and I could not understand this cruel addition to our already full plate. I had no encouraging words of wisdom or anticipation of His healing. I felt lost and alone and I felt like He had abandoned me.

Many people can quote words of wisdom like I once did, or jump out of bed with boundless enthusiasm and a positive outlook when their life doesn’t feel like a constant tug of war. It amazed me how many people became judgmental and claimed “they would have done it better”. It’s like the first time parents who sit and judge those who already have children, claiming they will get it “right” just to eventually find out that parenthood isn’t about getting it “right” as much as it is about doing the best you can. Once someone is no longer sitting on the sidelines but rather in the situation, the answers aren’t so clear and it isn’t as easy as once thought. This is where compassion and understanding grow. It grows out of the times we are at the top of the rollercoaster of life staring down from the top of the hill almost sick with the anticipation of the next steep decline. It’s when we are facing fear, and maybe the unknown, that we possibly have our best understanding of those people we once judged. To be honest, I don’t like the person I once was, I lacked compassion and understanding. I still don’t like many of my own qualities and I know I have a lot to learn, but I do know most people only desire understanding. So this was my life; I felt like the Lord had abandoned me, I feared constant judgement, and all the while my disease, as well as Aiden’s, was getting worse. I was sick of the rollercoaster and wanted off.

One of the worst days I had this last week in Texas was the first day we were admitted into the Epilepsy Monitoring Unit. We had been running nonstop since we left home. I was already hurting but when I laid down in our son’s room (on the tiny pull out sofa barely big enough for Doug and I), the pain I was already in got much worse. Nothing I could do was enough to ease my pain. my husband rubbed my hands and wrists until I fell asleep but I eventually woke and crawled into bed with our son. His hospital bed allowed me to sit up a bit and we were already playing musical beds as we adjusted to our new surroundings. There is something more than cuddling next to him that gives me comfort. I feel like I have been allowed to understand him more since my own diagnosis, and maybe he understands me, you never know…  It is a blessing and a curse because I often wonder if he feels pain like I did that night, yet he struggles to communicate. Now I am more aware where I wasn’t before because I have been allowed to suffer. My eyes have been opened to many things since I now physically suffer.

So that afternoon when I felt the Lord’s presence so strong, I was reminded that we aren’t guaranteed an easy life. Many children in that very hospital were facing much more than I. You don’t have to be a Christian to realize this. Nowhere are we told life will be as we wish but we are given one gift, that is life itself. Life is precious. I need to accept that my life will never be free of pain, physical or emotional, but I am given the opportunity to wake up each day. Some would finish this by saying “it’s what you decide to do with it that matters”, well, I disagree. I often don’t have a choice what I can do with my day. It has been at the mercy of one disease or another for over seven years now. I just can’t wake up with a will to conquer over my disease. I can’t will my pain away anymore than my son can stop himself from having a seizure. We deal with what we can’t control first and then we decide what we can do from there. Things don’t change just because we want them to change, so reminds me of my need for people and a God who understand.

My fear of my disease has been mostly about my own fear of death. Although my faith teaches me that there is more to life after death, I was afraid. I began to allow this fear to control my faith. It was a reminder of Jesus’ prayer in the garden before his own death that allowed me to once again embrace my faith. Jesus, knowing the outcome of his own death and what it would accomplish, still agonized over it so much that he sweat drops of blood. Whether this is a metaphor doesn’t matter as much as the fear even he had over the events before him. God wanted me to know it’s okay to feel unsure of what is before me.

My son and I will still struggle but we will do it together. The path we face is unclear but we are reminded of his presence in quiet moments in a small room with twinkling lights or through people put in our lives for a reason. We are either on the sidelines watching the rollercoaster of a life someone else is living or we are in the front seat of it, it’s the understanding and unconditional loves that helps us get through because you will never know when you will be in the unexpected. All you have is right now, the precious life you are gifted. I’m going to take it, pain and all because sometimes pain is the only way God saves us from ourselves. Pain is a despised beauty that can shape our understanding and allow us great compassion. Just because it isn’t understood doesn’t mean it has no purpose. I’m grateful I still have today to learn.

*d*

Mary, Did You Know?

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

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

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

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

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

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

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

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

*d*

Where is Your Worth?

image

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

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

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

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

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

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

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

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

*d*

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*

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*

Come Down from Your Tree

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

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

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

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

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

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

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

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

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

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

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

image

*d*

To Those Who are Different

image

If you are reading these words maybe it’s because you saw the title and thought, “That’s me, I’m different.” Maybe you said it with sadness. Maybe you feel like your differences have set you apart from the rest of the world and you feel alone. I want to tell you why you should say, “I’m different” with enthusiasm and joy.

At some point in history we were made to believe that it was acceptable to believe in a cookie cutter type of beauty. Beauty could be defined by some as a lack of “imperfections”. The world has gone so crazy over this concept that the appearance of people already believed to fit into the acceptable category of beauty is altered. Bodies are trimmed to a desired build, hair is colored, cut, or even added to obtain “perfection” and even the face can be altered to fit the mold. Everywhere we look we see some mythical idea of beauty. By accepting these preconceived ideals, we are denying ourselves the opportunity to witness the true beauty around us. Natural beauty. Beauty that shines so brightly on the inside, it dulls the watching world.

I want you to imagine what it looks like when you step out your front door. When I step out of mine, I step out onto my front porch. I have a swing and a wicker chair there. I can see my flowers, hear the cars driving by on my busy street, and I can barely see the horizon of the sky. The quaint buildings of our small village don’t allow me to see the wide angle view of nature but I still get to see several types of trees that line the main street in our village. The smells and sounds differ from day to day as we are a community that thrives on farming and livestock. I frequently hear a train roll through as we live only a block from the tracks. I love where I live. How about you? What do you see? Maybe you live where I have always dreamed of living, slightly isolated in a valley with a majestic view of a mountain? Or maybe you live where you had always dreamed, in a city alive with the noise of life. Maybe you don’t like what you see and are still dreaming of being elsewhere. No matter where you are, there is something to see once you step outside. Nature. Nature is all it’s own and it has been here long before we changed the landscapes outside our doors. It is full of splendid diversity. We can photoshop and edit pictures of nature but nothing compares to the real thing. A photo lacks the depth of being surrounded by the actual beauty of nature. Would the mountain look less majestic if a rock were to crumble off the face? Is the stream less blue if the leaves of fall float on its surface? Do we refuse to gaze upon the rise of an ancient tree because it’s bark has been worn from the animals that shelter in its branches?

image

If your answer is “no” then I ask why our own differences are seen as anything less than beautiful. Why is a smile less warming if the face that wears it has a blemish upon it’s skin? Is the body any less than amazing just because it rests in a wheelchair rather than on two feet? Why is a the shaved head of a cancer patient less desirable than that of someone with a full head of hair? Beauty can no longer be defined by the masses idea of beauty, but by nature. The differences of all of us are natural. Why are we trying to change that? There is so much to appreciate when we step out our doors and take time to look at the unending differences of nature, isn’t it time we do the same with each other?

image

Beauty isn’t just what you see in a magazine, it is the resilience of the human spirit, the beauty in our personal journey. Beauty is what the journey teaches us and how it transforms us from the inside. Beauty is the scars we bare from physical and emotional wounds earned in battle. True beauty is held by those who have been stripped to their soul and have seen life in a new light. Beauty is not worn on the face or seen upon a pouty lip, it is deep within the heart. Beauty is carried by those who have given all of themselves and have opened their eyes to what really makes taking a breath priceless. Indeed it’s seeing how wonderful it is to be a unique individual.

image

We are on the brink of redefining so many things, it is about time we start redefining this archaic definition of beauty. It is time we love what makes ourselves and others unique. It is time to wake up and look at what makes you different and say, “no one else is like me” and celebrate it. Don’t be discouraged by differences. They really aren’t differences, diversity in all of us needs to be as natural as those in nature. The rocks will crumble on the mountain, so too will our bodies become brittle, but they are both beautiful. Not all birds have the ability to fly, but they are still birds just as we are no less human if we cannot walk. Hundreds of different flowers lining a hillside are not dedined as ugly because each one is different so why are some defined as such?

image

If you feel different, celebrate because you were meant to be different. Every person was meant to be unique. To define beauty in a narrow perimeter is unnatural and ridiculous and it needs to stop. We are part of the beauty and artwork of nature but yet we define our beauty on different terms. It makes no sense.

If you feel too different to be beautiful, please know that you are special because there is no one like you and there never will be again. You are like one of those thousands of flowers that grow wild in nature, without you, the hillside wouldn’t be as splendid. You are splendid, because you are you.

*d*

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*