hope

Letters to My Son

~ crossroadtrippers ~ Leave a comment

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*)

Journal of Emotions

~ crossroadtrippers ~ Leave a comment

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NEW ENTRY

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I am overwhelmed. If there was a day I am full of emotion, it’s today. Life has been too much and I am having a hard time taking it all in. Everything from health to finances has been difficult. I often wonder why it isn’t just one problem we have to deal with, but a mountain of them. Yesterday I went to the pain management doctor and he about came out of his chair when I told him my Rheumatologist was going to keep me on one medication and add another. He didn’t like the idea of me being on both simultaneously. It gave me a lot to ponder as I knew something wasn’t “right” with me.

This feeling is the same one I had before my last flare. Maybe the thought of another flare put me in a foul mood, I don’t know, but I do know the mood is lingering. I keep thinking I’m more tired than usual but that would not explain the lingering rain cloud over my head. I tried hard today to be positive, until this……
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……. a flat tire…..

We just started a layaway for our kid’s Christmas and now I wonder if we will be able to pay it off at the rate we are going.

I made a phone call to the pharmacy on Tuesday. I asked how much I’d be paying out of pocket for my medications once my high deductible insurance turned over. We recently paid off our van, but between the increase in our mortgage payment due to tax increases and my medication, we will see no difference in our monthly budget. We will still be broke. I looked forward to a tax refund but that will be paying for our mountain of medical debt and spacers for my oldest son. We just can’t seem to get ahead. I know we aren’t alone. Many people struggle to get by from month to month, but I wish this was the only thing that kept me up at night.

Sometimes I lie awake listening for my son in the next room. I worry about him seizing more than I admit. He was approved to get an Embrace watch but they keep pushing the date back for it’s arrival. It’s supposed to alert us to a seizure by using an app on our phone. I will breathe a sigh of relief when it comes for many reasons, but nighttime seizures are a fear (for many with epilepsy). He is so poorly controlled right now that any help we can get monitoring his seizures will help us determine how to treat him and how he is responding to that treatment.

On top of his difficulties, my health has declined shapely this summer. I know I am sick, I can feel it in more ways than one. If I don’t take some of my meds, I feel like I have the flu. I am tired and depressed. I keep praying and working with my doctors to get me the right medication to help with all my symptoms. One thing is certain, RA will not steal my voice.

Writing is all I have right now. I don’t work, and I am grateful for that, but it is difficult to be a one income family with extensive medical bills. I hope I can make something out of our difficulty. That is what I am about, making something wonderful out of the worst of situations. I am going to keep trying and I am going to keep praying for the ability to write pieces that will help others feel like they have a common ally in this world. It’s this girl. I’m right there struggling with you. Maybe we will see something great together.

*d*

I have decided to pick up and write during highly emotional times for me and see what comes spilling out. I will update this post with those thoughts as they happen. I will do mimimal editing to protect whatever voice I use while writing. Understand, what comes out of me during a highly emotional moment may not always make sense but I want to share those moments. These are moments I believe we all have. My hope is to put into words some of the issues we all experience yet rarely escape our lips.

Entry 1: Written while thinking about how I was going to move past my diagnoses of Rheumatoid Arthritis (RA) and Fibromyalgia. I have been experiencing pain I had not expected. I am experiencing an RA flare and I went downhill very quickly. I can’t get around in the morning without assistance because of the severe pain I experience specifically during the morning hours. I am struggling to find purpose in the addition of this disease on top of already having a special needs child with his own complex diagnoses. ~

A diagnosis makes me think about death. I can’t help it. When the name of disease dropped from the physician’s lips, I immediately thought about the worst case scenario. I worried about every unfamiliarity, drug, and all the new phrases thrown my direction in a language I didn’t understand. I didn’t just cry, I wept. My tears came from such a deep place inside me that it almost felt as if a piece of my soul were escaping with them. Days were blurry. All I remember is the hurt I felt after knowing nothing will ever again be the same. There will be things that will no longer be able to be accomplished, words that will now remain unspoken, and dreams that will now have to be relinquished. I was in mourning, yet I was very much alive. Mourning my life while I was still living was a contradiction. I struggled with all things and I wanted to give up on finding myself again.

Then creeped in a small glimmer of light. It was hope. It was the knowledge that life is not over but still meant to be lived. I could not live my days as if it were already gone. If I kept choosing to mourn life, I had already given up on hope. So I chose hope. I chose faith. I chose to live. I chose to use those words that choked meaning out of my life to find a new purpose.

I see who I am. I see who I was. I had to change. I wanted to stop distracting my life with things that kept me from fulfilling this life. When life changes so dramatically, the span of a lifetime shrinks. There is no forever, there is only today. There is today to make a positive change in the lives around me. There is today to show others love. Death usually stirs up these same feelings in so many people but after waking away from the casket, much is forgotten. What changes are made are often temporary and life goes back to the same distractions taking away from a life rich with meaning.

Fear of death also ruins many things. Death hurts. It especially hurts when we have loved the deceased so much. To avoid that deep anguish, we pull away to protect ourselves from feeling that way again. But pushing away others to avoid future pain limits the joy that should be experienced now.

I have been depressed, have had panic attacks, and worried myself into distress over the unknown of diagnoses and of life. In essence, I robbed myself time to trust, the ability to have faith, and additional moments to love.

I essentially drew myself so close to the only dark spot in my life that it shrouded every last bit of light. I decided to hide in the only dark corner and hold onto my fear. I also hid there alone. I wanted to stay in my pity and cry about how unfair life had become while refusing help. It felt good to finally take a hand and say, “I can’t do it alone.”

Asking for help is a hard thing to do but it is a freeing moment. I didn’t have to stay alone in my dark. I could embrace those trying to pull me into the light. In the shadow of life is no place to be. When facing a challenge, go where the path can be seen, don’t walk in the dark. Choose to press against that darkness and love despite the hurt. Pull those hands close and love those who follow you anywhere. A lifetime of love is worth any eventual pain. Pain is better handled when leaning on love. No diagnosis or pain is worth giving up this life. It may make it harder. It may be lonely but run toward the light. Run toward love, don’t stop living because of one speck of darkness.

*d*
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Faith Not Fear

~ crossroadtrippers ~ Leave a comment

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

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

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

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

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

Age: Timeless

Physical Attributes: Heavy. Intimidating. Strong.

Best quotes from fear:

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

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

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

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

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

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

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

Age: Eternal

Physical Attributes: Scarred while making the ultimate sacrifice.

Best quotes to describe Jesus:

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

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

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

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

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

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

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

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

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

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

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

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

*d*

More Than Just Coffee

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

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

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

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

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

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

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

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

*d*

Beauty in a Different Wrapper

~ crossroadtrippers ~ Leave a comment

We sat alone and waited for the neurologist. “My son has a neurologist,” I thought, “how did this happen?” We stared at the computer sitting on a long table. Shortly we’d be able to see what was causing our baby’s seizures. It was like waiting to unveil and unknown enemy. The neurologist would soon come in, press a few buttons on that computer, and show us what was so different about our little boy. He had a number of different tests over the two days we had been at the hospital but only the M.R.I. would allow us to actually look at what this Tuberous Sclerosis Complex was doing to our baby. The name was foreign to us but yet it was suddenly going to be a part of our lives. A mere three days ago we had a normal little boy but now we had that little boy plus a rare disease unknown to us and most of the hospital staff.

We spent several hours on the phone trying to explain what our little boy had and what it meant for his future but we only managed to muddle through the numerous conversations with family and friends. Whatever this Tuberous Sclerosis was, I hated it and I wanted no part of what it was doing to my son.

My husband and I looked at each other. We gave one another the same look; the look that asks, “What are we going to do?” I am sure I had just as much desperation in my eyes as I saw in his. We felt defeated, broken, and very much alone.

It was in those moments after receiving that terrible news that our life seemed to stop so abruptly. It stopped, we stopped, and for the first time, we had no clue as to where our lives were heading. The addition of this terrible knowledge gave us a heightened awareness of how normal the lives were of those same family and friends we had those muddled conversarions with in those first few hours after we arrived at the hospital. Our normal was gone. I realized everything had changed and life would not go on for us as it once did. We were handed back our life in shambles as it was our turn to get the terrible news. Why did we have to be the ones? Why did our son have to be sick? Things like this don’t happen so close to home, let alone in our home. What was worse was the terrible feeling of isolation. No matter who called us, hugged us, or offered comfort, no one could stand in and take our pain. The gnawing yearning to find someone, anyone who would intimately understand our pain was overwhelming. We didn’t want to feel so….. alone…..

Last year I had an idea, I wanted to start a blog. At first, I really didn’t want to share it with the world. I wanted to keep it within a limited reach. My friend and I loved to write and what better way to turn what we love into a little more. Over the years I have wrote a few thought-filled pieces for my Facebook friends updating them on the condition of my son but the response was minimal at best. I thought that maybe I should be the one reaching out to others searching like me.

So we decided we would write. To keep our little blog confidential and comfortable, we began to use just an initial as our names, *d* and ~L~.  This was good for many reasons; we could have the freedom of writing without backlash from hyper-critial people and if we were at the receiving end of negative feedback, they would be cutting down these alternative personas of us, not the actual us, my friend and I could be viewed as equals in our pieces and we would be able to blur the lines of our differences and write cohesively, and hopefully readers could identify with us much easier. We wanted anyone to say, “Yes, I could be *d* or ~L~ and I feel the same way”. A few months after we began our venture, I decided to submit my work and try to reach a little further out into the world. Since my first submission to The Mighty in June, I have twelve pieces on their site and one of those went on to be successfully picked up by Yahoo Health. I am amazed my voice has made it that far. But there is so much more we want to do. There is a definite purpose in our writing, maybe we don’t fully understand what it is, but I know what I would like it to be….. I don’t want anyone to feel as alone as my husband and I did when our son was diagnosed. I want others who feel alone to find a common thread in our writing. The story of my life is a mess but I feel like I need to share it. I want others to know there is hope and happiness in what seems to be the most difficulty.

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I am often in awe of humanity. It’s easy to get tangled in all the bad news shared on television and social media. It makes me sad when stories highlighting the resilience and goodness of humanity occupy only a few short minutes of our day. We are beautiful creatures. My faith teaches me that we are perfectly designed and created but I also understand that my opinion is as different as we are from each other. Nonetheless, we cannot deny the genuine beauty we all possess. We have and inner strength and beauty that makes us move forward in the face of the most impossible feats and dares us to move even further to explore ourselves. Despite the vast array of our own kind, we hold many unspoken, common bonds. Most of us want commpanionship, we want to feel loved, and we are looking for ways to become better versions of ourselves.

No doubt evil has encroached on the heels of humanity. It tempts us to turn our backs on one another, deprive the needy, and think only of what is good for ourselves. The battle of good and evil will exist long after our generations have passed so that means we have to work that much harder, no matter what you believe, to ensure humanity can continue to shine as a beacon of love and grace.

Finding our purpose isn’t always easy. As a child, we think about what we would like to do when we grow up. When we listen closely to our little ones, a good majority of them want to help others in the future. As we grow we learn and change our opinions of what would be best for us. We also think about if what we want to spend the rest of our lives doing is best for us. We take into consideration finances, schooling, and where we would like to live. But we cannot forget those first thoughts we may have had about our future. The possibilities were endless. Today we may not want to pursue a career in service to others but we can still do great things for each other. These acts may only require a moment of your time but they can impact the world one moment at a time for the good of our future.

I want to write. I want to expose the raw nature of my life and sometimes open myself up to critics to be a voice of hope. While I have come to terms with the very real possibility and reality that I will be at the receiving end of negativity, it all becomes worth it when I have successfully reached across the small screen of my phone to put out my virtual hand to another human being that needs to hear the words, “You are not alone.”

We were not meant to be alone. We were gifted one another. Yes, it’s hard when we are gifted with something that is sometimes difficult to understand or appreciate. Sometimes those gifts aren’t as we imagined but once we take the time to unwrap what we have, we can see the goodness under any wrapping. We sometimes have to tear off shame, guilt, fear, and a common flawed nature to find the treasure inside. We have to take the time to understand that an unexpected gift is sometimes the best gift of all.

Life comes with shocking and truly terrifying moments. These moments can sometimes pull us to the edge more times than we would rather admit but if we are all honest with one another, we would say that our toes have all been dangling over that edge. We have all felt the disparate loneliness that we must face alone. No one else can stand in if and when the word cancer, disability, or death is directed at us. No one else can stand alongside the casket of our precious loved one and receive condolences. There are times when we have to stand alone but that doesn’t mean we have to be alone. We can find comfort when a hand reaches out from across that chasm and a voice says, “I have been there too”.

Eventually those voices and hands that reach out to grab us at our most vulnerable moments are those hands that welcome us home. Home indeed can be made of walls, windows, and our personal memories but home is a place where we feel like we belong. I recently had a conversation with my aunt who has struggled most of her life. She, like many people, have felt isolated and alone because she was different. During a recent conversation she said, “For years, all I wanted was my family.” It took years and a lot of heartache but she has found love and acceptance. And she feels like she has a home. She has a place where she is loved beyond the wrapping she had felt was too different to love.

In the reach of our progress, it is sad when there are people who still feel unloved and alone because their wrapping. They are those who identify themselves as “different” or were gifted something precious in a different wrapper. We must not forget, when we are all stripped down to the core of our humanity, we want to be loved, we want to be accepted, and we have fought for a place to belong. So don’t believe the headlines that scream to the masses that life is only for those who come from a predetermined mold. Humanity is for everyone. Life is meant to be cherished and enjoyed and you don’t have to fit a hypothetical criteria to do that.

We learn to grow and truly appreciate what we have when our toes are dangling over the edge. It is then we look back and yearn for that solid ground. Too soon life can change and you may be asked to break the mold. If that time comes, take all the strength of humanity and break it across that divide. Will you help bridge the gap and fill the void with all the wonderful things that make you different and a beautiful part of us all?

*d*

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Pondering the “What If” in Life

~ crossroadtrippers ~ 1 Comment

It’s Monday and Kristie’s day began before most of the world opened it’s eyes. It’s 2 a.m. and one of her two sons is ready to start his day. Kristie rubbed her eyes, dreary from numerous days of scattered sleep.

“Can I get up?” asked her youngest son Blake standing next to her bed

“Go back to bed, it’s too early.” As he wandered back to his room, Kristie knew she shouldn’t get too comfortable. She knew he would come back and he’d probably ask to go to the toy room. Several minutes later, he was back. ” Come on,” she said as she walked with him to the toy room. She laid on the couch and he grabbed his iPad. She didn’t look forward to the next four hours of interrupted sleep on the couch.

On this morning Kristie couldn’t sleep. She settled on the couch and made her best attempt but couldn’t.  Instead she ended up watching her little boy. Her mind began to wonder about all the things surrounding Blake and her oldest son, Drew. She began to rehash the “what-ifs” and all the other parts of her life she tries not to think about. It’s the same inner monolog that plagued her when her oldest son Drew was born, it’s the same crushing thought that wonders what life would be like without Fragile X Syndrome. What if their two boys never had it and what if she never carried it? “What if,” she wispered to herself.

She began to wonder what their life would have been like without all the harsh looks, awful critism, and impossibly difficult days in the  fifteen years since Drew was born. She recalls the worst of moments when a harsh stare was enough to make her family feel unwelcome and how a terrible comment like, “You should stop having those defective children,” seemed to cut her to her soul. She could still feel the same sting she felt fifteen years ago when it was confirmed that Drew had Fragile X.

She sleepily closed her eyes and  began to dream, or maybe it was her imagination but when she opened her eyes, both of her boys stood in front of her. “Hi Mom!” They spoke with unbelievable clarity, each offering arms open wide. “Thank you,” she heard from both boys harmoniously. In her  confusion she also heard, “We know it’s been hard, sorry Mommy.”

“No babies, don’t say that.” She thought she had spoke but the words didn’t come out.

“I love you.”

“I love you ”

Each boy embraced her. The very real feeling startled her awake. It was Blake. He was pushing on her arm. He wanted to watch a movie. It was 4 a.m. She got him settled again, all the while playing back the vivid vision in her head. She returned to the couch and now she really couldn’t sleep. She felt a gnawing in the pit of her stomach. If getting carried away with an impossible notion where her boys weren’t plagued with Fragile X wasn’t enough, she felt like she got a very real glimpse of it. She was very certain her boys would never fully understand the difficulties their family faced daily. The boys didn’t know life without Fragile X, it’s all they knew, but Kristie couldn’t help but wonder.

What would it feel like without the cloud of anxiety that seemed to hover over her boys. The anxiety that make daily schedules a must, especially when plans change outside the normal routine, small difficulties a big deal, and outings that often feel more like a production. The anxiety that causes fear of the unfamiliar. The same fear that causes tension between the boys and sometimes leads to physical outbursts. Most importantly, what would life be like without her own anxiety over every decision made in regard to her boys?

Kristie and her husband wanted to be prepared because they knew they could not afford take the trial and error approach to parenting. They knew they would need support and help with the decisions they would have to make for their boys and a foreknowledge of how to deal with the issues that come with Fragile X. They have attended meetings and conferences to help navigate life with their two special boys. She and her husband couldn’t simply ask, “When will Drew start school?,” they asked questions like, “What’s an IEP?” and “Will this school be able to accommodate his special circumstances?”. They couldn’t anticipate developmental milestones, they had to work hard to help the boys reach them. Each day is hard work and she and her husband often feel like they are fighting an uphill battle. They fight everyday to make life fulfilling for their boys while trying desperately to somehow fulfill their own needs. So they do wonder what would life be like if every decision didn’t feel like a thread that could pull the complex tapestry of their lives apart.

Kristie blinked heavily, “It’s six Blake, let’s get a shower.”

At this age both her boys should be taking showers independently but both boys need help as developmental delays and anxiety keep them from doing it without assistance. Soon she would have to wake Drew who is often hard to get out of bed and often difficult to bathe.  After the routine of morning showers, Kristie either feels ready to approach the day or ready to go back to bed. Today was difficult. Both boys needed plenty of help and verbal cues to prepare for the morning. It felt like an entire day was packed into a mere few morning hours. Already tired and exhausted, she began to make a schedule for the day, but today was proving to be too much. She began to cry.

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Drew and Blake saw her crying. Drew nudged her and said, “You’re a sad little Mama,” and stormed off but Blake stood for a moment, looked at her, and began to cry.

She couldn’t help but smile through her tears. She looked at Blake and just like any other mom, she saw her baby and wiped away his tears. But Kristie became especially grateful for this moment. There was no anxiety, schedules, or questions, just a moment where she could cry with her little boy. It was a moment when he was moved by her sadness. This small moment reminded her of a great many things.

What would she be like without Fragile X? Would the small and grace given moments such as these be as special? Would she see the world with the same set of eyes if her life wasn’t entwined with it? Undoubtedly, the disease has laced each day with challenges most families will never face, but it has also allowed life with her boys to teach her many things.

She knows patience is not given but learned. She knows even when she has felt like she has failed, there is always an opportunity to try again.

Grace is invaluable. She knows why it is needed because she knows she has needed it.

Love should be given blindly and love is not defined by another’s capacity to reciprocate that love.

“I love you Blake,” she said as he left the room. Kristie wiped her own tears, reminded of why she makes it through each day.

She has been given a gift and although she can’t help but occasionally wonder “what if”, she knows she is filling a greater purpose. Kristie is the woman God has intended her to be, a woman who serves as an example of His unending love and grace. Kristie sees the world with compassion because she has needed compassion, she has patience because she has to endlessly practice it, and she loves her family as selflessly as God wants to love each of us.

Yes, Kristie has grieved the life she envisioned for her boys, she still prays for easier days, and still desires understanding from those she comes into contact with, but with it, she has an opportunity. She knows there will be days when she will wish the world would love and accept her boys as she has but it won’t, she struggles with the inevitable bullying and dirty looks that frequently come their direction, but you won’t see her deny the blessings she has received through each of her boys. Life for Kristie and her family can be hard but they truly love the life they have been given despite the difficulty. They have been given the rare opportunity to show others that true joy comes from the foundation in which you stand.

Kristie knows that on days where she feels like she has had enough, she can still stand because she chose a solid foundation in her faith. It is faith in a God who provides the most joy in what seems to be the most difficult of situations and shines an example of His love through her life. God often uses the broken to do His best work because oftentimes the broken are already asking for His guidance through prayer. No doubt this is Kristie.

At the end of the day, she can look back and thank God she was blessed with another and thankful for the strength to endure. Soon enough the day will start again and she may be tempted to wonder “what if” but she can be assured she will remember why she wouldn’t want to be anywhere else.

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*d*

Chasing a Diagnosis

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We sat on her family room couch sorting through her photos. Occasionally one of us would stop and show the other a photo, laughing or reminiscing about the story behind it. I felt like a kid again, sitting in my childhood home reliving old and happy memories with my mom. Then she paused, her fingers resting on a photo. The smile had vanished from her face. “What? What is it?” I asked. I noticed her demeanor had changed.

“I don’t remember having this taken,” she said in a somber voice. I leaned over to look at the photo she still had between her fingers. It was a photo of her at the hospital two years ago after a major surgery called a Whipple Procedure. She looked at me as if to question if she was really the one in the photograph.

“That’s you,” I assured her. “You looked awful,” I said, trying to hold back my tears. “I am glad you don’t remember.”

“Me too,” she said as she slid the picture from her fingers into my hand.

I sat and studied the photo for what seemed to be an eternity. She was sitting upright in a chair next to the bed in her hospital room, a pillow draped over her lap. The hospital gown barely covered all that was coming out around her. A tube was coming out of her nose and one was also coming out of her neck. Looking at the photo seemed to leave my mom in some sort of disbelief. She had no recollection of the days following this surgery and although the photo looked like her, she acted as if she had just seen a ghost. I knew it was my mom in the photo, but I too thought she looked like a shell of the woman I have always known. Her pain was so intense after this surgery that I can only describe the look in her eyes as empty pain. It’s the kind of pain that demands complete submission to it. And there she was in a photograph, a momento of pain.

She and I had a haunting glimpse of a time two years ago we would both prefer to forget. It was the first time I seriously doubted whether or not my mom would make it through a surgery. This surgery was different than the ones she’s had previously. This was a rare procedure that required a skilled surgeon and would not guarantee her a better future or survival. When faced with such uncertainty, I thought about the holidays we had shared over the last year and wondered if we had truly enjoyed those moments together. I didn’t want to think about having the next holiday without her. It also made me think about my own selfishness and the times I didn’t grasp what life has been like for her. As long as I can remember my mom has been battling an invisible enemy. My mom was born in 1953 and in 2008 she finally found out what has been causing her life-long pain. She has a hard to detect birth defect called Pancreas Divism (an abnormality of the ducts of the pancreas) and Spincter of Oddi Dysfunction (a dysfunction of the muscle(s) that help control the flow of pancreatic juices). This and the treatment of which caused Chronic Pancreatitis. These abnormalities cause the syptoms she has felt since childhood: pain in the upper right quadrant of the abdomen or in the back, epigastric pain (especially after meals), abdominal swelling, nausea and/or vomiting. All of these symptoms during her lifetime were mistaken for various other ailments, so mom spent 55 years of her life undiagnosed and suffering.

“I’m sorry,” I whispered from under my tears.

“About what?” she asked, sounding surprised.

“For not being more supportive,” I continued. “I can’t imagine what it was like to be in so much pain, especially when so many people stopped believing you.”

“I had to keep going. I knew something was wrong, but I hate that it took so long to find out what it was.”

Her problems began in childhood. She had unexplained pain that grew more intense into adulthood. Because she so desperately sought an answer, she has had a staggering number of surgeries in her lifetime. Some surgeries to fix specific problems and others were an attempt to find the source of the returning pain. There is no doubt it was hard for her to continue to fight for her own health when others had given up.

She hugged me and we sat silently, maybe pondering the moments we lost. Her story has touched me more deeply in the last year. I was recently diagnosed with Rheumatoid Arthritis and I too will most likely be dealing with a lifetime of chronic pain. The difference between her story and mine is defined by one word: diagnosis. When my blood was drawn last year, I didn’t want a diagnosis but once I got it, I was validated. My pain wasn’t an illusion and I could begin treatment. My mom had spent most of her adult life chasing a diagnosis.

So, why was it so hard for her to chase a diagnosis? The hospital and medical bills became a rotating door for my mom even though she and my dad were already struggling financially. Money wasn’t the only reason she was discouraged from returning to the hospital or seeking out another specialist. She’d frequently hear comments like, “If they can’t find anything wrong, then what is it?” or, “You don’t look sick.” And all the while she would feel discouraged and invalidated for her suffering. Years of hearing other’s doubt made her doubt herself and that led to depression.

“How have you done it over the years?” I asked. “How did you live with chronic pain, especially when you had no idea what was wrong? Weren’t you angry?”

“It isn’t easy,” she explained. “Getting angry about it wouldn’t have helped. I knew my body and I did what I had to do. I have also learned not to hide from my depression.”

When my mom finally had diagnosis in hand, the only treatment available was risky and didn’t guarantee a better quality of life. The first procedure landed her in the hospital with acute pancreatitis. I visited her during this acute flare in 2008. Her pain was so intense that she was given large doses of pain medications and food was held until her pancreatic levels decreased. When I saw her, she was out of her head and desperate for food. Every year since 2008 is speckled with memories that she and I would rather forget. Awful memories where my mom and I began having an unspoken understanding about her health and death. These moments would shame the people that would doubt her illness when they’d say, “You don’t look sick,” doubt her pain because she wasn’t constantly folded over from it, or those who were perplexed because they couldn’t see her disability with their eyes.

“Mom,” I said, “you are amazing. I can only hope to have half of your strength.”

“I’m not any stronger or braver than you.”

I heard what she said but doubted the truth in it. I didn’t have the same difficulty before I had my answers. There are many people, like my mom, who are chasing a diagnosis. They spend every day in real pain and desperate for answers. They persevere even if they have to do it alone. My mom did what she knew was right despite adversity. Fighting the unknown is one of the bravest battles one can face. She isn’t the only undiagnosed individual fighting for answers so don’t judge someone based on outside appearances or speculation. Offer support because even when someone is fighting the unknown, they are still fighting.

*d*

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Why "You don't look sick" isn't a good thing to say.

Signs of acute pancreatitis:

Sudden intense pain in the middle of the upper abdomen and the pain may radiate to the back. This pain may begin 12-24 hours after a large meal.

Fever, nausea, vomiting.

Cammy skin or rapid pulse.

Tenderness or distention of the abdomen.

Signs of chronic pancreatitis:

Abdominal Pain that may radiate to the back or chest that is intense and long lasting. It may be intermittent or persistent.

Stools that are excessively foul or bulky.

Nausea, vomiting or abdominal distention

Weight loss because of malabsorbtion of foods

Development of diabetes if pancreas becomes damaged.

Source: webmd.com

The Road of Suffering and Honesty

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There have been plenty of times when I have wished I could be someone else. This usually happens when the “envy monster” whispers in my ear, “Look who has it better than you,” or “They have it all!”  and I get the feeling in the pit of my stomach that groans about how life has been unfair to me. It’s hard when I hear when these same people have purchased a new car or won the lottery and the only “lottery” I feel we have won is that of incurable and obscure diseases. While other parents think about vacations, taking kids to practice, and play dates, we may never afford future vacations, I am often debilitated due to my Rheumatoid Arthritis, and I have to consider my son’s medical and behavioral issues if the rare opportunity for a play date arises. I think about illnesses every day. It is consuming and it eats away at my me. Bit by bit, the worry, guilt, and fatigue has at times compiled into depression. It would seem happiness is far fetched on the uphill battle we often face, but it isn’t. I can affirm that I have experienced envy, guilt, anxiety, depression, and sadness at the hands of multiple diseases. They have robbed me of sleep, peace of mind, and the luxury of quick decisions. Everything in our life has to be carefully thought out and planned. Life is lived one day at a time and we are sometimes barely getting through the day. So why am I so happy?

For one, I live by faith and believe my life has a greater purpose. I believe I have learned to be a better person through all of my suffering. Suffering is inevitable and to many, suffering is pointless but I dare you to consider the contrary. I have had a better look at the lives of others who have suffered around me by experiencing the same. I was ignorant and there was so much I didn’t understand until I also had to experience my life at it’s lowest. It was from the bottom where I could appreciate the strength of people who were experiencing great difficulty. It was also there where I became more aware of my weaknesses and failures and desired to be a better person. I learned how to find strength and happiness in the face of adversity.

It sounds simple but I no longer hold myself to an unrealistic standard. I allow myself to feel envy, sadness, and heartache and it doesn’t make me a bad person.  Too often, I feel like I have to live up to some ridiculous, unspoken standard that says I have to be happy, or at least pretend to be happy all the time. I don’t. Life has been unfair, other people do seem have it better, and there are numerous health issues in my family. The pain is real so shouldn’t the acknowledgement of my own feelings also be real? Once I decided this, I also stopped sugar-coating my response to the question, “How are you?” I give an honest answer and if someone didn’t really want to know, they will not likely ask again. When did it become necessary to omit difficulty out of normal conversation? Difficulty is a part of life. Why should I feel guilty about talking honestly about my life?

I have also put unnecessary guilt to rest. I have spent too much time feeling guilty about things I could not prevent or did not cause. Guilt by its own definition should only be felt when one purposefully does something in contrary to what he or she knows is right. Trying my best is not something I should feel guilty about. Life should not be based on hypothetical scenarios that can’t changed. What’s the point? I also stopped feeling guilty about what I could not do. If life demands that I leave the laundry pile up and the house remain dirty, so be it. My house and my laundry will wait for another day.

On that note, I stopped telling myself that I had to maintain the perfect image. I made myself crazy cleaning house, painting walls, and making everything around me look perfect when I was falling apart on the inside. Yes, sometimes having other areas of my life in order helps me feel better but it should never take priority over my own or the children’s needs.

Lastly, I remind myself that everyone is struggling with something, even those people I envy and people like me who try to maintain that perfect appearance on the outside. Honesty can be very freeing. I appreciate those who are also honest when I ask, “How are you doing?” It helps to know I’m not walking the difficult road alone.

*d*

The Easter Approach

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Everyone has had rumors spread about them. These childish antics usually take place in high school, but unfortunately gossip is a nasty habit that carries well into adulthood. Rumors about me have labeled me weak, immature, inconsiderate, unappreciative, a snob, and much more. I urge you not to believe any of it, not because I haven’t been all of those things and more but because I have been forgiven for sometimes being exactly that. Easter is in six days and regardless of your religious affiliation, or not, one of the oldest stories ever told can have meaning for you.

As the familiar story of Christmas reminds us, Christians believe that God came to Earth and took human form. In one the many mysteries of the faith, He became fully man and fully God. He was also God, Son, and Holy Spirit in perfect unison, the Holy Trinity. Jesus fulfilled prophecy during His lifetime and did so to the end, suffering a horrific death. As God, He knew this was going to happen and as man, He pleaded for the suffering to pass from Him. As man, He suffered more than any human would ever endure. He was beaten, crucified, and bore the sins of the entire human existence for all time. As God He chose forgiveness instead of vengeance choosing to utter the words, “Forgive them, for they know not what they do,” in one of His last breaths. I know, this is sounding like a sermon but we need to be reminded that the Christian message is and needs to remain about forgiveness and sacrificial love as demonstrated in the Easter story. Often times we want to run our own agendas and forget the Easter message the other 364 days of the year. Christ did not say in His last breath, “forgive everyone except (insert name here)”. He made no exemptions and washed it all away. ALL of it. He took those moments when I was weak, narrow-minded, unforgiving, and sometimes ungrateful and forgave me, all I had to do was ask. I am comforted by this story because it can speak to everyone. True love is looking past all those imperfections and seeing others for who they truly are and what they desire to be. Unlike those truths and rumors about me, He knows me well enough to know the desires of my heart and gives me those desires even when I am unworthy because He loves me.

Yes, I believe in God who chose to live a meager existence, even in death by humbling Himself as man and accepting a fate that would result in Him ridiculed, beaten, and hanging helplessly to a cross. He accepted what He was given even when He could see exactly what it meant, even when He had the power to stop it. You don’t have to be a Christian to appreciate a man who lived no more than a meager existence, that accepted a sentence He did not deserve, because He loved humanity so much. We all have been given sentences we don’t deserve. I know I have but I choose to follow His example and accept it all the way to the end, even if it means to death because someone did that for me. I am also going keep trying to freely forgive others, and even myself, when I have been hurt because He offered forgiveness to the very people who chose to nail him to a piece of wood.

So I ask you to stop listening to rumors about me, each other, and Christ and see humanity and faith for what it really is; humbling, forgiving and life changing. It’s about time we stop looking at those bruises and scars we all bare and see us how we were seen over two thousand years ago, a beautiful work of creation deserving of the greatest forgiveness and love. The next time you don’t think someone, including yourself, is worth a kind word, or even forgiveness, there is a God who placed extraordinary value on each person, so much so He died to prove His love.

*d*