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*

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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?

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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*

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*

Love is Stronger Than Pain

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I was thinking about what Rheumatoid Arthritis (RA) has taken from me today. It has taken many things; my peace of mind, health, mobility, strength, and much more. It has been hard to accept that just a couple years ago I didn’t have to worry so much about my own health, the peace of mind about being able to take care of my own children was secure, and I knew I had the physical and emotional strength to take on whatever life threw at me. Now most of my day is centered around pain. I ask, if I stretch, exercise, or take the right medication or supplements, can I relieve this pain? But the day usually begins and ends the same, in pain.

I am certain I can handle what the disease takes from me, what I don’t like is what it takes from my kids. Above, I posted a picture of me holding my youngest daughter. She is our surprise baby; you know, that baby who comes along and yells “surprise” a week before a scheduled hysterectomy. My husband and I determined we were finished having children and I needed to have the surgery to take care of some health issues that have plagued me for many years. These problems were so disruptive, we are lucky to have even one child, we have four. When our youngest snuck in under the radar we were very excited. We were shocked and thrilled when we finally conceived our first and every child thereafter was equally, maybe even more exciting.

I think I do alright as a mom. I love and have loved every stage of their lives thus far, but I especially love the toddler years. I personally think too many people focus on the possible tantrums or stubborn nature of a toddler and miss all the incredible things they are learning and accomplishing in the first short years of their lives. I was always the proud mom to carry her babies around on my hip. The first three were glued to my hip as long as they’d allow me to pick them up and put them there. Unfortunately for my fourth, she hasn’t had the same. I am unable to pick her up, let alone carry her like I could with my other children and that just makes me mad. She is frequently raising her arms to me and saying, “up” and I have to say, “Sorry baby, mommy can’t pick you up right now”. Yes, I know I can find other ways to pick her up and I know it isn’t a necessity but I want to do it! I hate that my RA has taken this simple joy from me. I have accepted and smiled through many things that have spewed into my life but I am neither going to smile or accept this one.

As you can see, I try to pick her up as much as I can, pain or no pain and I often try to take a picture. I want to remember that I was blessed to have had babies on my hip. I am privileged to raise my children and I will keep doing my best despite what this awful disease does to me. I will pick them up (try to put them on my hip), hug them, kiss them, and smile at them, even if the entire day is experienced in pain. When I think hard about it, my life isn’t about me, it’s about who I have been gifted to love. The love of a child is far more powerful than any pain some awful disease tries to throw at me.

*d*

Finding Your Perfection

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

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

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

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

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

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

Love,
Mom (*d*)

Good Girl

The air was cold. Not cold like it should’ve been on the 9th of February, but cold. Sort of crisp, like fall. The whole winter had been pretty mild and the day I’d decided would be her last to suffer, was no different. I was grateful the bitter cold had held off as I stood in her stall, running my hands over her face and neck, fluffy with her winter coat. My horse stood with her head down, her nose pointed into a corner and I wasn’t sure if she even knew I was there. One week had morphed into what felt like a moment that would both never end and end too soon.

It started like colic. She didn’t eat her supper one night and began pawing and stomping. After walking her around for a bit she seemed to have interest in her hay again and started to eat. I was mistakenly relieved. By the next day, it was apparent that she was sick enough to call the vet. After treatment for colic and bloodwork, it was concluded that her liver was failing. Without sending her to the state hospital, two hours and several thousand dollars beyond my reach, there’d be no way to really know what was happening to her. And I had to take into account her age. She was going to be 25 in March. It might’ve been easier to accept if she’d been in poor health along with her advancing age, but up until the week she fell ill, she’d always had the energy and attitude of a much younger horse. I’d read that Appaloosas often lived to be 30. I felt like she was being ripped off. That I was too. But I was also glad it was happening quickly and she’d never have to face the physical breakdown of growing old.

Scribbles

Warm tears streaked over my chilled cheeks, chapping them. I rested my forehead against her neck, my arm draped over her spotted back. My heart ached listening to her grinding her teeth so hard it sent chills up my back—a sign her liver had given up, left her brain to swim in a sea of toxins and robbed her of her mind. Over the last few days, I watched her put her nose into the feed bucket, not to eat but only to go through the motions, and steadily lose weight. My heart began to tear as I tried to see that putting her down was the right thing to do. But, there was no amount of rationalization that was going to make it alright that my friend, my confidant, was losing her life. I’d cried so much that week that it felt like my natural state of being. I breathed in her scent and sobbed. Then, she moved. Her face came out of the corner and her neck bent around me pressing me against her with her ever-soft nose. And my heart broke wide open. Her hug could’ve been just another odd reflex but to me, it was everything. She did it again and was done. Somehow, even with her body failing, she found a way to give me some peace.

Scribbles under saddle
So many memories had battered me as I struggled for that week, and came to terms with the reality of my impending loss.

I remembered the first time I saw her at the boarding stable where I cleaned stalls, pulling the cross-ties tight, the whites of her eyes gleaming. She’d injured herself running through her owner’s fence and had nasty slices on her front and back legs. She was there while her owner repaired the fence. The weeks passed and instead of fearing her, like I probably should’ve, every time I cleaned her stall, I grabbed a soft bristled brush and carefully brushed her between the eyes. I offered her the ends of carrots from my other job in a restaurant kitchen and though it would be months before she would take them from my hand, I felt a connection to her.

Scribbles

I remember how she got her name when friend/co-poop-shoveler called her Scribbles, because “she looks like a kid drew her.”

I remembered the excitement I felt when that same friend offered a place to keep a horse so I could realize a life-long dream. Then, the giddiness when I offered to take Scribbles off her owner’s hands and she agreed.

I remembered the first time I sat on her back, after months of ground work and trust building.

I remembered when she took a carrot from my palm for the first time.

I remembered the way she’d be completely calm as I sat on the built-in feeder in her stall and scratched the place where her rump met her tail. How she’d often back herself gently toward me, suggesting that it was time for another scratch.

I remembered every fight, lie, and betrayal that she helped me through just by standing in her stall while I brushed her.

I remember the debilitating depression and how sometimes, the only thing I looked forward to was barn time.

I remembered how after every ride, she tossed her head excitedly in her stall, waiting for her apple.

I remembered the day she broke my arm, the day I learned the value of not skipping steps just to get to the fun part.

I remembered how nearly every time I came to the stable, America’s “Horse With No Name” would play on the barn radio and it became something of an inside joke with Husband and me.
Most of all, I thought about that soft nicker she gave when I came into the barn and how much of a hole its absence would leave in my heart.

Scribbles

That afternoon, as the sun was looming just over the horizon, I led her from her stall for the last time. She was very weak from not eating all week and we moved slowly through the grass. Her stablemate, Bo, was placed in a pasture near the place that had been chosen for her. They didn’t do well apart and there was hope that if he saw her fall, he would understand. As we approached the spot, she lifted her head high, her nostrils pulling in the chilled February air, and she called out to him as he grazed in the pasture they’d shared. For a few seconds, the light that her eyes always held came back and my breath caught in my throat. Then the burst of energy was gone and her head drooped again.

meNscribbles07

It was suggested to me that I might not want to be there for the euthanasia, or that I might at least want to turn around. There was no doubt in my heart that I would hold onto her as long as I could. There was an inner conflict like I’d never experienced before, as I watched the vet put the needle of the catheter into her neck. My heart was screaming “STOP” but my mind held my tongue. I grudgingly handed over the lead rope when the vet said the first injection, a sedative, would cause her to collapse and he didn’t want me to get hurt. I stepped back.
He held her head by her halter as his wife and fellow veterinarian administered the first syringe. While the visual of Scribbles’ eyes rolling back in her head and her body going limp is an image that will likely stay with me forever, I couldn’t have left her. She went to her knees first and as she fell like a marionette whose strings were abruptly cut, the vet dug his boots into the soft ground and maneuvered her to the ground. Her eyes were open but there was no life behind them. I sank to my knees at her head and stroked her face, my tears falling into her hair. The vet administered the unbelievably large syringe of pink liquid and I continued to pet and murmur that I was there and she was a good girl. And then she was gone.

Scribbles headshot
But she was a good girl. She was flighty and clingy to her stablemates. She was too lame to ride sometimes, thanks to poor care from the owner that had her first. She was as sloppy as any pig when kept in her stall. But she was my friend. It wasn’t about her perfection or her usefulness. It was about love.
The vet removed his stethoscope from her ribs and stood to let me have my time with her. While I’m not religious at all, I am spiritual. I imagined her energy leaving her broken body, flowing through me and running through the nearby field.

Scribbles running

As if my feeling was reality, Bo, who had been grazing in the pasture a few feet away, seemingly ignoring us, suddenly jerked his head up. He let out a high-pitched whinny and took off across the pasture. He ran, screaming, from fence to fence. It was several minutes before he stopped, and even then, he was alert, snorting as he looked around.

He didn’t stop looking for her for months and neither did I. I never got used to her stall being empty. Eventually, I didn’t need to come to the barn to help out anymore. And a few months later, when I felt like I could handle it, I returned for her tack.

Scribbles tack

As I entered the barn, I heard the song. “Horse With No Name” was on the radio. It felt like she was letting me know that she was still there for me, even if it was just the result of a radio station with a limited playlist. A tear rolled down my cheek and I couldn’t help but smile.

Scribbles in the barn

~L~