Author: crossroadtrippers
A Thought About Future Posts
This year I have contributed several articles to The Mighty. My stories have discussed our life with our special needs son and I have tried to be respectful when discussing him and the issues surrounding him. I have slowed down in recent months because the content and amount of what I share has been weighing on my heart.
The Mighty has recently experienced a backlash of hurt feeling regarding a post written by a contributor who made light of autistic meltdowns. Many people who have autism were hurt by the post. Like the author of the piece in question, I have also made light of tough situations. Upon further reading and thought, I have deleted some of my posts that have more of a place in my personal archives than in that of the public eye.
My intention in writing about our lives has always been to open up and hope readers who were facing similar situations could relate and maybe not feel so alone. I have felt a great deal of loneliness surrounding our situation and I wanted to reach out to others. But…. but I do not want to do so and cause any emotional harm or backlash to my son.
I will continue to write about his bravery, strength, and how he inspires us daily. I may touch upon the difficulty of our lives, but I will try to mostly discuss my own personal issues.
I am not bowing out, just readjusting my mission to help him and assure him that I left him a positive future. I want him to know his mom wrote to get the disease Tuberous Sclerosis Complex known so a cure can be found. If he were to grow and have the ability to read my work, I want him to read first hand how much better our lives became because once he was a part of it.
Thanks again for reading and I hope to continue to contribute something good to my son’s future.
*d*
Santa is Not a Noun, Santa is a Verb
This time of year always brings up festive feelings. Most people make an effort to spread a little more joy, open up their hearts and sometimes wallets to contribute to the well being of another.
I am reminded of this anytime I read a story of an exceptional mall Santa that made an extra effort to comfort a crying child, relate to another that may be experiencing personal difficulty, or just made the visit an extra special experience. I have no doubt these types of stories and the individuals behind them aren’t new, but their stories spread much faster thanks to social media.
I personally love to see the pictures of “Santa” playing on the floor with a little boy with autism, snuggled up to another who fell asleep after a seizure, or sprawled out on his chair to create a precious moment with a sleeping infant. There are many more I could mention. With all of these unique, heart warming stories and photos floating around, does one really have to ask if Santa exists?
It is a question that inevitably comes with age in children. It’s a question posed in newspaper articles and depicted in movies. It seems a trivial question that begs a meaningful answer. I decided to give this question a go myself as Christmas is one of my favorite times of year. I am a Christian so it holds an additional meaning for me but I want to focus on just Santa here and the question, “Does Santa exist?”
For those of us who choose to urge our children to believe in Santa, we know there will be a day when they will question his existence. My oldest is eight and I have been thinking of how I want him to think of Santa and how I’d like him to see this important figure of childhood.
Santa is typically depicted as a person but I think he’s no person at all, but rather an action. Santa is a verb. A verb best defined for this illustration is this: “….a word used to describe an action….” Santa is goodwill in action. Santa is not simply confined by the traditional definition of a man who delivers gifts to children one day a year. No, he’s much more. He is the actions of all those who make the Christmas season so joyful.
It doesn’t matter if you believe in the Christian story of the birth of Christ on Christmas to spread the joy found this time of year. The generosity of spirit moves in people of various religions and backgrounds. Santa is the action in which one good hearted individual walks into a store and pays off the layaway accounts belonging to complete strangers. He is the action of people who volunteer time away from family during the holidays to provide food and shelter for the less fortunate. Santa is the stir in the hearts of many to give for the sake of giving.
Santa doesn’t move one night a year, he is in action all around us. Under the aprons, suits, pajamas, and various other typical pieces of clothing, we can find many red suits with white trim. One doesn’t have to be of any certain age to wear the persona of Santa. No one is too old or too young, too rich or to poor to spread the joy embodied in a very real figure who can be defined by the generous spirit of human nature.
Never stop believing in Santa. People will say he doesn’t exist, but Santa does exist just as much as the stir within the hearts of good and generous people who want to act on the behalf of Santa. It’s exciting to come to the realization that Santa is no longer just an individual but an action available to all.
Merry Christmas!
*d*
Finding the Right Umbrella for the Rain
It has been months and my son and I have been standing out in the pouring rain. The intensity of the storm brought on by chronic illness and disease increased quickly and unexpectedly as we found ourselves gathered under an umbrella barely big enough to shelter us from a light sprinkle. I was praying for sunlight and more ominous clouds were on the horizon. I felt hopeless.
In it all, I was focused. I was focused on living my life as if I were dying. My health has been on the decline, as also the health of my son. Any opportunity to wake and enjoy another day is a reason to be thankful, even on a stormy day. So, I would wake and my thoughts would focus on things like if I’d be healthy enough to throw a holiday party or if he would be strong enough to participate in the next school activity. I’d try to remind myself to make the most of of today because I know tomorrow isn’t guaranteed. And what about next year? What could be assured to us 365 days from now? I thought through our circumstances. I was given this gift to appreciate the moment and live for today, but I wasn’t happy. I wasn’t meeting my life with the satisfaction I thought would be a product of this new way of thinking. How could this be? The answer didn’t emerge until recently. Out of fear, I was living like I was dying but I wasn’t focusing on the living. It had become so easy to focus on the worst case scenario. Here we were battered by a storm and I expected he and I would be swept away.
My son and I both live with life altering diseases. Both of us have weathered our fair share of storms, my little boy more so than myself. We now stood together and wondered if we’d see the sun again. He lives with epilepsy caused by Tuberous Sclerosis Complex, a genetic disorder that causes tumors (tubers) to form in various organs. Many of his organs are effected but the thirty-five plus in his brain cause him to have a severe form of epilepsy that has been becoming increasingly difficult to control. In the last few months the seizures have caused developmental regression and physically weakened his body. He often looses all bodily control post-seizure. He is now in need of a wheelchair to help us transport him when incidents like these occur. I have Rheumatoid Arthritis so I have difficulty physically helping him when he has these seizures that revoke his ability to move. I am having trouble keeping my own body healthy as my RA has destroyed enough of my joints to warrant three surgeries in my future; shoulder and double knee replacement. I am awaiting M.R.I. results on my other shoulder. I am hoping the list of needed surgeries does not increase to four. My son is waiting for an evaluation of just one surgery, neurosurgery.
We know what is coming within the next 365 days and it doesn’t look good. I know I will hold off any treatments I may need until we take care of him. We never wanted to come to the conclusion of neurosurgery. We have tried all other methods to control the epilepsy and all have failed. Neurosurgery is now his best chance for him to be seizure free and hopefully gain back what progress epilepsy has taken. There is hope but I am also scared. It’s this fear that drove me to take on the motto, “Live like you are dying.”
It was a bad feeling; letting our health issues dictate how I approached each day. Each time my son had a seizure and it left him unable to move, I’d nervously anticipate him regaining movement and I’d pray it wouldn’t be the one seizure to send him to the hospital. As I lay him in bed, I thought of those seizures I may not hear as we sleep. Moreover, I feared my own disease would leave me unable to care for my children, especially special needs son as he requires a great deal of care. I was determined to fully live out each day but when that didn’t go as planned, I worried, stressed or got overwhelmed. At the end of the day, I’d then be wrestling with regret. I was frozen with fear of the unknown and fear of what I couldn’t control. My emotions were dictating my actions and I’d allowed my emotions to end my days in regret. I’d finally had enough. It was time to live without the fear, live without fear of dying.
How could I accomplish this? I began with a smile. When I felt like giving up or giving into my negative emotions, I’d smile. When I felt like throwing my hands up, I’d throw them around someone. When awful things happen, like when my son is paralyzed by a seizure, I’d smile to comfort him. I’d wake in the morning and focus on the endless possibilities for joy and if I felt that regret at the end of the day, I’d remind myself how hard he and I fought through the day….. together…. I told myself I can’t regret our best effort.
Fear and regret gave us no shelter from the storm but smiles invited sunshine no matter how bad the storm. I didn’t need a motto to bring happiness, I just needed to try to bring happiness.
*d*
Letters to My Son
This begins a series as we prepare for the next step in the care of our special needs son. He is being referred for brain surgery in the next few months. To follow our journey, I have decided to express my thoughts about the process through letters I will write to my son. This is the first of hopefully many over the course of this scary and hopeful journey.
Letter 2:
Dear Little Buddy,
We are still waiting for the call to schedule your visit to the neurosurgeon. The longer we wait, the more I ponder the impossibility of this trip. There are so many things to consider; the expense, the logistics, the care of your siblings, and the possibility of being away from home for a considerable amount of time. I am very saddened that your declining health has made it necessary to go to this extreme but it’s not your fault and I don’t want you to feel bad. It can be easy to carry guilt when you need help due to your disease. I know because I also have a disease that has made it necessary for me to ask for help on occasion. I have a disease called Rheumatoid Arthritis and it has changed my life in many ways that mirror how your life has been effected because of your disease, Tuberous Sclerosis.
Since I found out that I have this disease, I have needed to take different medications, some very similar to medications you are or have already taken. One of my medications could effect my vision and I have to it checked every three months. It wasn’t that long ago when we were taking you to the optometrist for the same reason. Although our specific medications are different, I also take an anti-epileptic and a medication that is used to treat cancer in high doses. I look in the mirror and see how the appearance of my own face has changed just like yours did as an infant when you took a medication that I am taking now. The physical changes we both have experienced doesn’t end there, we are both weaker than we were a year ago. I have benefited from a rollator and we will be meeting to fit you for a wheelchair next month. It could all be a coincidence but I think it’s more. Through my struggles, I get a rare chance to understand you more.
It is also through these similarities that I can sympathize with the side effects of your medication, the frustrations when your body feels the effects of failed medications and therapy, and the never-ending rotation of doctor appointments. Unfortunately it also means all of these things double for our family. We spend twice as much time waiting at appointments, twice as much money on medications, therapy, and surgery, and double the worry over getting through each day. Those are big issues for us, but we care about you above all.
We are always thinking about how to make your life a bit easier. It is in these thoughts where I have struggled to help, and sometimes, understand you. You have done things that seem irrational; sometimes you scream, hit your face, beat your head on the wall, or you will hit me or someone else in the family. It wasn’t until I too started to feel quite irrational that I began to understand you. In the last few months I have had to start numerous medications and I didn’t anticipate the variety of side-effects I began to experience. Unlike you, I have a full understanding of what is happening to me and yet I still cried and wanted to shut down. Since you don’t understand your situation as I, it must feel like your life and/or your body is out of control. How can I expect anything but an occasional meltdown or outburst from you? I have nights where I can’t verbalize my own emotions, yet I have expected that from you. I have expected you to do more than I have been able to do myself, and for that my little buddy, I’m sorry.
I am sorry for all the times I haven’t been patient and understanding. I am sorry when I haven’t searched beyond your anxiety and outbursts. I am sorry when I haven’t been a safe place for you to fall. I know I have needed a safe place where I can have no fear rejection or judgement. You deserve the same. It has been hard for me when you have had terrible days and have taken it out on me. It’s hard to be hit or kicked by someone you love. It hurts my heart because I want to spend my time enjoying you, not fighting with you.
Don’t forget that little buddy! You are amazing. I may wish we could enjoy our time together without the some of the bad things that come our way, but I will take you and our situations just as they are as long as we can be together. I am also thankful for my own struggles that bring me a closer understanding of you. It makes me a better person and a better mommy. You have taught me a greater compassion for others and the value of patience. I also promise I will do my best to remember you are doing the best you can despite the mountains that stand before you. You have prepared me for all the difficulty I personally face because you have been an example of bravery. Yes, you are brave. You don’t have to know you are brave to be brave.
Thanks for being my companion in a journey two people rarely get to have together. I look forward to climbing the next mountain……together……because bravery doesn’t mean you have to do it alone.
*d*
(Mommy)
☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆
Dear Little Buddy,
It was about eight years ago when we found out that you were going to come into our family. You weren’t planned, but most miracles aren’t planned. You were born on a beautiful July morning. You were perfect. We brought you home and I imagined a bright future for you but some of those dreams quickly became lost. You were three months old when you had your first seizure and the words Tuberous Sclerosis Complex came into our lives. A few short weeks later and we learned you had also developed a rare and catastrophic form of epilepsy called Infantile Spams. These innocent looking seizures made it a very real possibility that you would experience developmental and physical delays. It was hard to imagine the same bright future as we did the day you were born. We were so very sad and the future looked as gray and solemn as our broken hearts. We had never heard of this disease and here it had changed the way we looked at you.
Yes our hearts were changed. We loved you even more and we were more determined than ever to help give you a wonderful life despite this new knowledge. Your disease was now a part of our family because it was a part of you. You weren’t the same kind of perfect we once thought you were, you were a unique and special kind of perfection. You see, sometimes the world can have a different definition of what perfect should be but that isn’t how we define it. We want to love perfectly with all our imperfections because none of us are perfect. Because you are loved so very much, this letter is now going to be even harder to write.
After seven years, we have been unable to control the seizures that are a biproduct of your disease. Daddy and I have tried very hard to get you every resource possible to help you in your fight. We made big changes when we decided to take you to a clinic that specializes in Tuberous Sclerosis. We did this so you could be in the care of neurologists that are the best at treating others just like you. We have spent the last seven years exhausting every avenue and turning over every stone to control your epilepsy and help you make the most developmental progress possible. You have worked very hard too. You have been in numerous therapies since you were a baby. You have fought hard after every seizure increase and every regression that happened as a result of those increases. We have all fought so hard together for a very long time. I am so sorry that we couldn’t make it all better. This reality makes me sad when I see the look in your eyes during a seizure. You want Mommy and Daddy to make it all better and we can’t. All we can do is be strong and comfort you.
Because of all of this, a big decision had to be made. We know the last few months have been hard for you. Your epilepsy has been making you weak. On school mornings, I see how hard it is for you to walk down the steps and up into the bus. I see how hard it is for you to do so many things that were simple to you just a year ago. I cry at night because I know it’s been harder for you to understand and communicate with me. I see all the terrible things epilepsy has done to my wonderful boy. But I know there is still fight left in you, I can see it. I see your fight every time you get angry and scream in frustration or have an outburst of anger. I cannot imagine how difficult it is to have so many things going with you and to you while having no control over what happens. I try to remind myself of this every time you get angry with me. I try to remember that you need me to be strong because you are still so little and you really have no way of understanding what has been happening to you. I will continue to be strong with you because we have one more fight we need to face together.
We are going to see another doctor in another hospital that may be able to give you another chance at living a life free of the seizures that done so much to you. He is a neurosurgeon. He may be able to get to the root of the problem and remove what is causing your epilepsy. It is a long trip and we may be gone a long time but there is hope. This is just the beginning of a long process and we have no idea how we are even going to make this happen. The wheels are in motion and it began with a referral to this hosptial. There are still a lot more details to work out and a lot of people want to help you little buddy. Many, many people would like to see you seizure free and making developmental progress.
Remember when I said you were a miracle? Well, you are for many reasons. At one time I thought a lot of good was gone from this world. I had lost a lot of faith in myself and in others. Then you came along. In the middle of all the tears, worry, and sadness surrounding your life, many people came to help. Friends and strangers alike reached out to give us hope. When we needed hope and love, someone was always there to show us that there was indeed good still left in this world. You taught us many wonderful things too. You changed the person I am and who I want to become. You make me see that every single day is a gift. Through you, I have a daily reminder that I can only appreciate those things that are here today. I wanted so badly to live in a future made up of my dreams. When you were diagnosed, I could no longer do that. At first I was sad that I could no longer clearly envision your future, but now I see the true blessing of living for today. Your life is a miracle because of how you have changed lives just by being here. You may be small, you may deal with more than most do in a lifetime, but you are capable of doing even more. We may be in charge of seeking the best help possible and doing it in a big way, but in the end, you will have the victory because you will win this fight.
I know I may never read this letter to you. I really don’t know if you would understand. I’d like to think that despite your developmental delays, you do hear and understand more than I know. So we will talk about the next battle we will face together. I will remind you of how strong you are and how much we love you. Your daddy and I would give all that we have to help you. It seems like an impossible journey but we will get there one way or another because you are worth it. Don’t ever forget that. Even when you have had the most terrible day and you take it out on one of us by hitting, screaming, or spitting, or even when you have a terrible meltdown because life is overwhelming, we still love you. We see the hurt under it all and we want to help. No matter what happens, you will always be our little buddy and you will always be loved. Remember this when the next leg of our journey becomes difficult. Sometimes we must decide to take the most difficult of roads because they lead to the most hope. I pray we get there and the best is waiting for you at the end.
Love,
Mommy
(*d*)
It’s that Kind of Day
It’s a little after three in the afternoon and nothing can go right. Do you ever have one of those days? No decision made is the right one, nothing said gets heard, and there are no smiling faces. I don’t like days like this but they come, I can count on it; days where I want to hide in mid-afternoon. I can’t help but fixate on rest, maybe just fifteen minutes of sleep because I am so tired. Maybe I’m deliriously daydreaming but nothing that comes from someone as tired as me can be right. No, it’s a nightmare and the best I can do seems like trying to find my way out of a smoke filled building. I know what I need to do, I am just disoriented from the smoke, or in my case, fatigue.
With chronic illness comes fatigue, as with having a special needs child. I have both so I don’t think I need to explain why I’m so tired. To sum up how I feel can be best described by the look on my face when I hear someone complain about how they didn’t get to bed until midnight after their fun evening out and they just couldn’t get out of bed that morning. It’s an unsympathetic face and maybe one of envy, but it isn’t nice. I still try to throw on a fake smile and do my best to be sympathetic. I assure you most people can see through my fake smiles.
In a world like mine, a fake smile is necessary, almost a requirement. Who wants to be around someone whose mouth is frozen in a downward curl? Personally, I smile in hopes that the remainder of my body gets the hint. “Hey brain, look!! See this smile??? Now perk up!” Don’t get me wrong, I have plenty to genuinely smile about but I’m trying to be honest. Days like today come and I have got to grin and bear it. That’s what a mom with a chronic illness and a special needs child has to do, it’s what a mom with a special needs child or a chronic illness does, it’s what a mom does.
Being a mom is a wonderful but thankless job. I worry about how I’m doing as a mom all the time. They can certainly tell my real smile from the fake. They must know what takes the genuine smile from my face. One kid gets off the bus and I get screamed at, spit on and kicked. That’s in the first fifteen minutes. He’s had a bad day and now I know it. The other comes home and lies about his homework or is defiant when I ask him to help with chores. All the while the baby is pulling on my leg and the oldest daughter decides she feels left out and gets herself into trouble too. Yes, on most days I put on my faux grin and handle it as calmly as expected but sometimes that fake smile isn’t enough and everyone knows it. I yell, cry, or hide in the bathroom a little longer than it took me to go, just so I can let off a little steam. Sometimes, like today, it comes rolling off one. word. at. a. time.
I admire all parents that put up the good fight, fall asleep in tears, and keep doing it all again because they love their children. It’s not the same kind of love that made the family, it’s the love that binds it once it’s formed. It’s the love that keeps going after getting slapped in the face. It’s the love that will repeat the homework assignment for the tenth time, cleans up the mess for the twentieth time and is thankful for it all when the time to go to bed finally comes.
I get it, it’s hard sometimes. We think we have to do everything right all the time or we are going to have children who will resent us later or won’t become productive members of society. When these thoughts bombard my head, I frequently have to give myself a time-out and a pep talk. “You are doing the best you can and with circumstances that are extraordinary. Keep trying!” That’s all I can do. Keep trying.
The difficulty is worth it. People often tell me they don’t know how I do it. To be honest, I don’t know either. I get through the day and sometimes I make a mess of it. At the end of the day I try to remember to be thankful and thankful again when the sun rises so I can try again.
Today wasn’t such a good day. I wish it was easier. I wish I didn’t cry and feel hopeless but I know I’m not alone and neither are you. Keep going. Keep trying. It’s worth it. One day at a time.
*d*
Stand Wisely
The Clean that Holds the House Together
If someone were to walk in my house, they may be tempted to say, “Wow! Her house is so clean and organized, she must have herself together!” And that’s exactly what I’d want you to think. The honest truth; what is going on inside of me looks nothing like what I allow to show on the outside. In fact, if I kept my house in the same condition as my mind, I’d be the next to appear on a television show that exposes hoarders. I can imagine a host strolling up to a tiny little door and hyping up the audience at home by saying, “This will be the worst hoarder ever exposed on television!!” The door opens and there I am in my ratty pajamas standing knee deep in the dark and dirty crevasses of my mind. Spiderwebs hanging where a college degree should be, rodents are gnawing holes in the time I take to care for myself, and I’d be balancing knee deep in the garbage of disease. Behind him come all those shocked faces of my family and friends who thought they knew me better.
As sad as that exposition would be, it wouldn’t be too far from the truth. I admit that I am sometimes a prisoner to my need to keep the world around me in order. If I know someone is coming over, even if I know they won’t be coming into the house, I straighten it up. I make sure I include cleaning the house as part of my afternoon routine. I squeeze it in between baths, making supper, starting homework, and all before my husband gets home. I’ll even do it if I am already running on fumes. He never asks to have the house clean when he comes home and he knows the mess I can be on the outside and inside but I still want him to know I am trying. I still want to feel like I have a purpose despite my disease or difficulty.
I have been this way for a long time, way before my son or I was diagnosed. It started with a family saying, “Everything has its place, everything in its place.” I think I was told this every time my childhood room looked like a disaster, and that was most of the time. I had the smallest room in the house and the most junk. Trying to keep it organized and clean was like trying to take out the weekly trash in a lunch bag. No matter how hard I tried, I never could get it clean. I eventually mastered the art of making things look clean when they really weren’t. I learned many tricks to accomplish this task, there was stuff the closet and hurry up and shut the door before it all comes out, shove it all under the bed and leave the comforter hang over to hide the mess, or my least favorite, don’t play with anything. I never really dealt with the mess, I just mastered how to keep it looking like I didn’t have the said mess. I was a kid, I hated getting rid of anything. I am still that way. I won’t get rid of anything that could be of use to me someday (yes, this thinking has come in handy). My house has refurbished decor of all kinds. I use and reuse things when I can. I don’t like to re-purchase something I once owned.
I get my hoarding tendencies honestly. My paternal grandmother is known for her need to collect things she sees as valuable. Anything antique is her specialty. I admit, the older the better when it comes to many items I wish to collect, but with limited funds and space, big or expensive items are not for me. I, like my maternal grandmother, find value in the little sentimental items that are easily collected and easily hid. My attic is full of school papers and artwork of my children that I don’t want to let go of. This spring I bought two extra large three ring binders and filled them with my favorite papers that the boys brought home from school. I filled up both binders right away. I know I should let go of certain items, stop cleaning my house to portray a less than chaotic life, but it’s how I cope.
Everyone has their own ways of coping with life. Some people shop (yes I have been known to do a bit of that when I have been depressed), my husband prays, some people drink, and other shut down. The list is limitless. It is important to cope with the difficulties of life in a healthy manner. Poor methods of dealing with these issues can lead to further destruction. I don’t know of any cleaning anonymous groups out there but if my habits were going to further stress my life, I’d find one. Thus far, I take the hurt or negative energy and channel it through a can of dusting spray or a vacuum cleaner. A can of cleaner is the only thing that has to worry about meeting my angry or distressed hand. At then end of my cleaning rage I can look around and feel a small sense of accomplishment. I know that sounds silly. There are many things in my life that feel out of control; my health and the health of my son, his autism, and our mounting financial concerns worsened by the burden of our diseases so I keep trying to do my best at those things I know I am good at like loving my children, trying to be a good wife, and yes, keeping our home kept nicely. It reminds me that I am still trying my hardest despite my difficulty. Since my job is to be a wife and mother, I’ll do the best I can at what I have been given. The day of concern will come when my house really does look like it should be on a hoarding show because that will be the time I have given up. Sadly, the illusion of a put together life is the only thing that sometimes holds me together. There are so many days when I feel like I can’t give anymore and any bit of accomplishment is a big deal.
I am continuing to work on those areas of my life that seem out of my control. Every day is a new chance for me to clean up those tattered crevasses of my mind and not just my house. Someday, I do dream of having the confidence of being able to open up my mind without fear of the mess inside.
*d*
Tearing Down the Four Walls
After sharing that our family had joined a non-denominational chuch, I had a friend ask me if we had made the right decision. Our decision didn’t come easy as I had spent the last ten years attending the Catholic church and my husband was a cradle catholic. My friend, who is also a Catholic, shared that our decision saddened her. Although I did not understand her sadness, I appreciated the concern. To be sad about my decision would indicate that I had lost something by changing churches. I will miss some things by not attending mass, but being raised a Baptist, I felt like my faith was well rooted and strong before I joined the Catholic Church.
My Baptist faith is a far cry from the Catholic Church and it’s long standing traditions. I spent Sunday mornings in fellowship around a coffee pot, our noses in a hymnals, while wearing out the pages of our Bibles. Unlike the Catholic Church where the eucharist is at the height of service, ours came when the preacher would deliver a sometimes over-zealous sermon. At the end of each service we would have alter call. The alter was open and the preacher would ask people to step out of their pews and commit their lives to Christ or come forward to pray, often resulting in an alter lined with people in prayer. In my ten years attending the Catholic Church, it was never lined with kneeling or praying parishioners in that way, rather bowed before in reverence. To me, one was no better than the other, rather, I have appreciation for both. My heart was joyful when I could physically bow before it in silence or in prayer. Yes, Sunday morning for me was vastly different than those of my husband who certainly would have been shocked by the “loose” interpretations of how services could be conducted at the church in which I was raised. The songs, prayers, and words are predetermined and unified every Sunday morning in every Catholic church. Catholics celebrate and are fed with what they believe to be the literal body and blood of Christ. A beautiful experience but it always saddened me when my family could not fully participate in mass because they were not members of the Catholic Church.
When I met Doug he was a Catholic who had never worshiped in another church. When he agreed to attend services with me at the local Baptist church, he felt like he should find a way to attend a Catholic church before our Sunday was through. I was honestly offended and puzzled as to why attending church with me didn’t “count”. We were both deeply rooted in our faith and so this began an unending conversation about faith and how we wanted our faith to grow as a couple. We had to a strip away the four walls of our faith and discuss what it was he and I believed. We asked questions, opened our hearts and minds to how we would unify our approach to faith as a couple. It was important to us. When we announced our engagement, we knew a decision had to be made about where we would attend church and where would we be married. It wasn’t going to be an easy choice. I didn’t want to join the Catholic Church. I had spent my life worshiping as a Baptist but my faith also taught me to respect and trust the spiritual decisions of my soon-to-be husband. I also trusted that God would bless me in a new journey of faith. So after much thought, I decided to join his church. I attended meetings for a year, sometimes struggling with the differences with the Catholic faith and the one in which I had been raised. I reminded myself that he and I believed the same thing. We believed in Jesus Christ who was God incarnate and paid the penalty for our sins on calvary’s cross. We both had acknowledged this truth and we both acknowledged the strong faith we held individually. My faith was not changed once I joined the Catholic Church but the way in which I could further appreciate God did. My husband also began to form a different approach to faith through the process I was experiencing while joining his church.
He knew I missed my coffee fueled sermons and the fellowship of the Baptist faith. I missed the intimate relationship I had with God. In many ways, I felt like the Catholic Church didn’t quite fill that void I felt. A few years after we were married, I had discussed attending bible study at the same church I attended before we got married. My husband didn’t think twice. He was very supportive and decided to attend with me. We attended Wednesday night bible study and he began to see God working through his visits there. We felt blessed. We were able to see God in action through our exploration of faith. I had joined with my husband through his faith and he reached out to mine.
It may seem hard to believe that two people who essentially believe in the same things could differ so greatly in their personal worship of the same God. Both of us were so deep rooted and change was hard because we enjoyed and appreciated what we already had. What others viewed as a conflict or confusing, he and I viewed as a blessing.
Our decison to join another church happened after I asked if we could go to Sunday service at our new church as a way for me to meet people and learn more about it so it wouldn’t be so intimidating for me to join a bible study. I hadn’t been to a bible study in years and I really wanted to get involved with one again. What we discovered was a community of believers that cared for us. They sent us cards thanking us for visiting, showed up at our door with meals, and greeted us with warm smiles when we came. We also enjoyed the sermons. The words spoke to our lives, almost as if the preacher had bugged our home and preached about what we needed to hear. My husband felt something there and made the decision to join the church. I was surprised that he had reached that decision but we both felt the same stir in our hearts, the church felt like home. It had nothing to do with our past or what traditions we wanted to hold on to, it was about the overwhelming feeling that we were meant to call that church home.
It has been a couple months since we joined. I have been able to participate by giving my testimony during Sunday services, talk with some of the women about my experience at the faith conference, and plenty more opportunities are on the horizon. The door to these additional opportunities has spurred us to rekindle our faith at home. We have further discussed many issues he and I had set aside. We realized he were focusing on the mounting negative in our lives and we had almost forgot to appreciate the positive things, including the blessing of faith. Faith that is not contained within four walls of one church but a faith that should be practiced when we leave the door of whatever church in which we have worshipped. Our lives should bare testimony to the grace we are given by faith and we should be able to joyfully share it with others.
What if the four walls of your church fell to the ground, what would you have left? What if you were the only example of faith to someone else? Would you be able to be a witness to your beliefs? Would your love be a testimony to His love and grace? Before you can be a reflection of Him by your life, you must have Him within your heart. Where you worship is very important, but what you take home and practice the remainder of the week speaks volumes. I can only hope others will be able to see His work and love through our lives no matter what four walls in which we worship.
*d*
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.
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.
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.
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.
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.
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.
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.
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.
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.
~L~
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