Life

Insurance Rant

~ crossroadtrippers ~ 4 Comments

I want to discuss a growing problem for many who care of or live with chronic illness. This is a growing issue that poses a particular problem with those who require on-going medical care, but it is effecting a large number of people.

I have Rheumatoid Arthritis. I was diagnosed in December of 2014. I began treatment after my initial appointment with a rheumatologist in April of 2015. Within this last year I have started therapy with multiple medications to help control the disease and slow the destruction of my joints. Unfortunately, the time required to wait for my initial rheumatologist appointment and the severity of my disease had already destroyed multiple joints to the point of needing multiple surgeries. Disheartening still is realizing at the end of 2015, I would no longer be able to afford my healthcare, with insurance.

I’m not the only one. In a recent thread on social media, a friend shared about how upset she was about the $800 bill she received from one test to a recent trip to the children’s hospital with her daughter. This sparred a conversation with numerous other people who were experiencing the same thing. All those responding had insurance with high deductible plans. The families and their employers are paying premiums for plans that don’t pay anything until a deductible of several thousand dollars is met. This is sadly becoming the norm for families like mine that live on a limited budget and don’t have the money to meet the financial burden required to use the health care system.

I have a disabled child and I have a chronic illness. Thankfully our state offers assistance to children with medical handicaps that helps assure my son doesn’t go without the medication he needs, but the system isn’t perfect. Social security and insurance isn’t automatically provided to underage children with disabilities. Many times the only coverage is through private insurance. I can recall many of our own horror stories as well as those of other parents with special needs children who have had to fight with insurance only to run out of medication for our children. It isn’t right.

I spent the better part of December wondering how I was going to continue my medical care. We have since received generous help from friends who helped meet some of our financial needs, but we still don’t have enough money to pay for the necessary doctor’s appointments and medication I require. Now we have to see if my doctor’s will work out payment plans, see me less often, and reduce my medications to help me try to meet the financial demands of my illness and those of our family.

I guarantee many people are lying in bed with the same worry, how can I afford to pay for my care and still buy groceries or pay my mortgage? I know because I’ve talked with them. Parents are sick over the large bill they received because their child had an unexpected visit to the hospital, the caregiver to an aging parent is worried because they have to figure out how to pay mom or dad’s mortgage while they spend time at a nursing home in rehab, or a parent of a child with severe epilepsy is crying because insurance is using every last tactic to stop shipment on the only medication keeping their child seizure free. How is any of this okay? Is anyone else ready to speak out about this? I hope so because no one should ever have to compromise their health care but sadly this is happening every day.

*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*)

Critics Will Be Critics

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Have you ever felt like no matter what you say or how you say it, there is that one person that will always find fault with you? Have you ever tried to please this person by asking how and why they are offended and try to change it? I have. The only thing I manage to do is make things worse. That one person usually ends up getting upset even further because the additional effort is viewed as offensive or I then looked like I was trying too hard. The truth is, there are people we can never do right by because they just don’t like us. Another truth, the more people we open up to means we are more vulnerable to these type of critics. If you want to test this, go to any article online and read the comment section. Find the most feel good story the Internet has to offer, scroll down to the comment section, and read feedback. Even the heart felt story about a little puppy who wandered away and was brought back home by the kind-hearted neighbors will be torn down by the critic who wanted to know how the irresponsible owners didn’t keep better track of their pet or why it took so long for the neighbors to bring back the puppy. There are people in this world that simply can’t be pleased.

When my friend and I decided to venture out into the blogging world, this was a natural concern of mine. In recent months, I have had to reconsider what and how I write, who I submit my work to, and what it is I want to accomplish with my writing. My primary focus recently has been the stories I have shared with The Mighty. There has been a flurry of negative feedback surrounding The Mighty in recent weeks. I submitted my first story to The Mighty in June of last year and since then I have had 14 stories published. I was shocked and proud to have my work shared on a bigger platform. Prior to these publications, I wrote only for myself. I didn’t write for an audience and I didn’t write to accomplish certain goals. After my first story was picked up, I continued to write as I had before; I thought could make a difference to others who could relate to my personal journey with disability or my journey as a special needs parent. I did begin to write more about my experiences as a special needs mom or an individual living with chronic illness because more of my stories were being picked up because I felt like I was making a difference.

In the last few weeks, some critics of The Mighty have used some poor tactics to drive their point home including plucking out and tearing down stories published by The Mighty by people like me. I have personally steered clear of these pages and care not to know of any attack of my own stories. I think the tactic is a poor way of demanding change. Change in my opinion is best served by open and honest dialog about concerns that effect numerous people. Change happens when disagreement comes and those from opposing parties can fight, but do so honorably. This is especially important when both or all sides are supposed to be working on the same goal: in this case tearing down the stigma of disability and disease. This current attack seems to separate members of the same team, further, attack people who are obviously already suffering.

I will make my statement clear, I write what I want because I believe in sharing my life, and yes, sometimes my life with my special needs child in an effort to help others. I read comments from people who think that parents like me share our lives with our special needs children to somehow promote ableism or write to make the masses feel better about themselves through our work through a tactic called “inspiration porn”. I can only speak for myself and I don’t know if my work falls into any of these examples, but I am simply writing about my own experiences and how they make me feel. I have no ulterior motives but the feeling that I am unwelcome to write as a special needs parent is hard to ignore.

Picking apart one article of one writer is a poor way to get to know that person and understand their experiences. I have a blog for this very reason. I have it because my life is full of unique experiences. They are spelled out throughout many posts that are sometimes written in a flurry of emotion or written calmly at the end of a day filled with inspiration. Yes, some stories are sad, exciting and sometimes just laughable. The bottom line is clear, they are my experiences and this is my life. I don’t write to please the masses, I can’t. It would be impossible for me to make everyone happy. At times, I’m not happy with even my own work but when I came across The Mighty a few months ago, I felt like my personal journeys could have a place in the bigger world. I felt like I could share even the messy, and nearly impossible parts of my life, and they could mean something. Maybe my struggles could serve a bigger purpose. Maybe the story I wrote about how I broke down while picking the kids up from school after a day of setbacks could help the mom browsing the internet with eyes swollen and red from tears feel like she isn’t the only one having a bad day. Maybe the person who just got back from the doctor’s office after hearing the severe pain they have been experiencing is caused by Rheumatoid Arthritis came across my personal journey with the same disease after typing Rheumatoid Arthritis into a search engine. Maybe most of my stories will sit on my blog and never get picked up by another website and never get read by another soul. It’s the most likely possibility and that’s okay with me.

I started a blog hoping it would help me deal with all that was going on in my life, and if someone happened to stumble across it and it helped them too, it would be an added bonus. I didn’t think any of my pieces were good enough to be shared by a bigger community but my first published piece has been shared over one hundred thousand times. That’s pretty amazing! It’s an honest piece about the feelings I have had as a special needs parent. Some may want to say I am complaining about being a parent to a child with numerous challenges and maybe they are right, but I also know how very blessed I am to have the opportunity to raise him. Reading more of my journey would make this point very clear.

It’s through our unique journey that I learn more about the type of person I need to be and how my son’s life has impacted mine in so many different ways. People may disagree when I write about how my son inspires my life, or they may say I shouldn’t use his life to inspire others. I write about his life, he just happens to be an amazing young man that deals with extraordinary circumstances. Someday I will read him every last word. He may not understand it and he may never be able to articulate his own journey, but I will continue. Why? Like any parent, I want to give my child all I think he deserves. If I write about my son’s journey and how it has effected him, maybe I can draw awareness to his disease, Tuberous Sclerosis Complex. No one will know of the disease or how it effects someone in real life if no one talks about it. I’m talking about it!!! I am sharing how it effects a real little boy who has real feelings, who experiences real hardships at the hands of his disease, and needs a real cure!

So, critics will be critics. I have read some honest feedback from the critics of The Mighty and I have made some decisions about my writing based on those who are like my son and grew up with disabilities. I appreciate helpful feedback, but not feedback that hurts the entire community. Not everyone is going to like me or like my work, that’s okay, I don’t like everything I read either. The Mighty may not be for everyone but I have no doubt the founder has good intentions. I hope those who have legitimate concerns continue to voice those concerns in a constructive manner and will stop trying to take down the entire mission of the site. The Mighty is on new territory and it can be a great place to connect with people who will help us all feel like we are not alone when dealing with the difficulty of this life. I guarantee every contributor already has difficulty and putting their stories out there for further scrutiny is hard. I barely have time to write, I have a full plate but you can be sure that my intentions are good. If all I leave in this world are a few stories about my life with my own illnesses and the life of my little boy struggling with his, it’s well worth it when I read that one comment that says, “Thank you!” In that one moment when that reader no longer felt lost, it became worth it. I know what it’s like to feel lost and afraid, several times over. I had never heard of Tuberous Sclerosis Complex and I would have done anything to connect with someone who understood our pain the moment we heard our little boy had that disease. I am still fighting to understand Rheumatoid Arthritis and how debilitating the disease really is. It helps me to connect with another person who found treatment when they too were feeling as hopeless as I do because they too were watching their body waste away at the hands of the disease. I am leaving what I am searching for, giving what I take…. and I won’t stop… I have a voice, I am going to continue to use it, and yes, I feel mighty!

*d*

A Thought About Future Posts

~ crossroadtrippers ~ Leave a comment

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

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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

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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

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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.

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Letter 2:

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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.

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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

~ crossroadtrippers ~ Leave a comment

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*

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