Love for Today

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

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

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

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

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

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

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

*d*

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*

Finding Hope

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There are times like tonight when the reality of my own life is overwhelming. It usually happens when the house is quiet and all the kids are in their beds. It’s at this time of night I have a chance to really think about things. Every day seems to move faster and more furiously toward too many events I cannot understand or control.

In the quiet night air is where anxious and stomach churning thoughts often disrupt what should be a peaceful end to the day. It’s hard to ignore the pain I feel at the end of each day when my body starts to feel the repercussions of any physical activity I may have been a part of. It can get so intense that it feels like punishment for participating in my own life.

It’s when I retire to my own bed earlier than almost every other person my age that I think of my sick little boy sleeping in his own bed. I worry about seizures that may go unheard. I sicken over the knowledge of my own weakness when he is in need. If an emergency arose, would I reach him fast enough? Could I physically do what is necessary if needed? I usually push these thoughts from my head the moment my husband appears in the doorway of our bedroom. “What would I do without him?” A thought of appreciation but also a bit of a morbid one, but a thought most parents with a sick child have frequently. We wonder how the delicate balance of our family could be repaired if we lost one of us. The magnitude of such a reality is frightening.

Often, when I recall my own thoughts of the day, I realize death lingers in my own mind more often than I am willing to admit. I have a chronic disease. My disease is running rampant while I am holding on with any last scrap of optimism I can muster. I wonder how I have any thoughts that even resemble positivity because life certainly hasn’t handed out a fair share of difficulty. It seems like the scale is not tipped in our favor. When one terrible event happens, another is rushing toward us.

The big issue with chronic illness is the “chronic” part of the phrase. It’s definition; constant or having a long duration tells me what kind of hope my son and I have at a release from disease and pain. With incurable disease, the disease never ends and freedoom from it comes only through death. With pain a constant companion to incurable, chronic disease, it isn’t a wonder why my thoughts seem quite morbid. It’s also easy to understand why I’m depressed. There isn’t an end to the pain or side effects of disease…….. there is no end. There are no cures or a remission for us. Medicine and surgery only treat the symptoms and based on the drastic measures we are taking to treat our son’s symptoms, it sometimes doesn’t feel like much of a life at all.

Dreams are put on hold, plans are cancelled, and hope seems lost. But it’s that small word almost at the end of the last sentence that have given strength to so many in worse circumstances than my own. Sometimes it’s the only thing people who feel weary and burdened use to overcome. Hope.

Hope is a word manifested through people, actions, and words. Hope is sometimes given, sometimes it’s stumbled upon, but hope is often the only thing left when everything else feels lost. On those days when I am focused on going back to bed because of the relentless pain, I cling to the hope that tomorrow will be better. I have hope that I can make each day wonderful in spite of it. Hope is the echos of a good deed. Those echos reverberate in my heart, especially in recent times, and have often brought me to tears. From gesures of kind thoughts or prayers to giving generously with no ask of recognition, we have felt more love than we may have felt in a lifetime with no difficulty. We have been humbled by pain but also by love. What a feeling it is to have a breaking heart also feel so full.

When it feels like life is too much, I don’t have to look far to find happiness. It’s the smile on our children’s faces. It’s their endless desire to love and be loved. It’s those who see past our absence from their lives due to the circumstances we can’t control and choose love us anyway.  We feel loved when we finally crouch out of our darkness and into the world and there are people still waiting with open arms.

I have hope when our children display compassion learned through circumstances that ask them to miss out on so many things by no fault of their own. Every time they offer me one of their little hands so they can help me up the stairs or care for me in concern, I have hope. They have compassion learned by trials. They don’t get to do many of the things other kids their age do like play summer T-ball or take swimming lessons. Our abnormal circumstances don’t always allow normality. I make myself sick thinking about what disease takes from everyone in this family. I feel like the little part of their childhood taken away will be the big things when they get older so I hope we offer them other beautiful memories in return. Right now, it’s that quiet time of night when they are asleep and I am awake to think of these things. I think about the smiles on their faces. I think about how much love they have for me regardless of how I feel about myself, or still, how others feel about me. They see me at my worst and still love me and I them. I realize I have much to look forward to tomorrow.

***Look for hope, even of you have to make yourself. Wake up and make the best of the day, even if you require help to do it. This doesn’t mean trying to do things beyond your capabilities, it means trying to smile or laugh, even of you have to spend the day in bed. Love to the fullest of extent, even when you feel like you have nothing left to give. You aren’t guaranteed a long life, you’re not even guaranteed a fair life. Take it from someone who knows how unfair life can be, good things are not promised and someday, the end may seem closer than it has ever felt before. Take time to cry when needed. Don’t expect to feel great about every person or thing that comes into your life. Sometimes you have to work at what’s important and let go of the rest. Most importantly, find what makes today beautiful, I bet it’s closer than you think.***

*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.

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

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

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

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

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He helped lift me to my rollator….

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And had to help me on and off the toilet.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*d*

Faith Not Fear

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

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

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

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

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

Age: Timeless

Physical Attributes: Heavy. Intimidating. Strong.

Best quotes from fear:

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

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

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

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

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

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

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

Age: Eternal

Physical Attributes: Scarred while making the ultimate sacrifice.

Best quotes to describe Jesus:

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

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

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

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

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

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

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

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

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

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

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

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

*d*

More Than Just Coffee

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

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

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

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

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

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

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

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

*d*