A Talk on Sunday Morning

The following is the talk I gave at church last Sunday. The pastor had a sermon on joy and he asked me to share something. I am so thankful for the opportunity. I hope I will be able to do so again.

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When is the last time you have been uncomfrotable in the passanger seat? Maybe it was with someone who had the worst sense of direction or instantly gets upset the moment they miss a turn or gets lost. I usually don’t mind the passenger seat of a car but I do not like to be the passenger on a plane. In either scenario I don’t have full control but at least in the car, I can possibly help navigate the driver and myself back to where we need to be, unlike the airplane in which all my trust is supposed to be in the pilot. If he gets lost or a problem occurs, I have no choice but to hang on and pray we get back on the ground. In the last few years I have felt like a passenger on a haphazard plane ride.

You see, ten years ago my husband and I set off for this fantastic journey of married life. We were so excited. We made plans to see and do all kinds of wonderful things but it didn’t take long for us to wonder if our pilot got lost. We took detours through infertility, postpartum depression, and incurable disease, twice. I was pretty patient with all the non-scheduled stops but I eventually became anxious. I had never been to places like this before and I had no idea, and obviously no say, in where I was going.

It was during our first detour when we felt we were on a flight plan that couldn’t have been meant for our life so we prayed, “Dear Lord please help this seriously lost pilot find his way and put our lives back to where we think it belongs.” We were elated and thankful when He answered our prayers and we had our first child but shortly after his birth I had complications. We both became fearful when we realized we were again lost. It was around this time we were also realizing prayer was becoming a valuable compass in our journey and we became to appreciate the way in which God guided us. He were drawing closer to our navigator and we were experiencing a new kind of happiness.

Seven years ago my husband and I took the biggest and most frightening detour of our marriage. Our infant son was diagnosed with a rare and incurable disease. We never anticipated that our flight plan would go this far off track. We were convinced we were headed in the wrong direction. We cried and pleaded with anyone who would listen. We’d be only happy if he’d be healed and we could go on living the life he and I had planned, with healthy children. We didn’t deserve to get so off course…… We once again pleaded with the Lord to help but our son was not healed. Instead God gave us the strength and wisdom to help us navigate our new surroundings but we still weren’t happy with that pilot.. Little did we know that we would experience a different kind of healing.

Then December came and I may as well have been sucked out my window. I found out that I too had an incurable disease. In the proceeding months my symptoms began to spiral out of control and so did I. I also made the decision to send fear up to the cockpit. I put all my trust in fear during this trip and it took over. I handed fear the controls to my life and I blamed God for it. I was tired of this kind of trip and I wanted off. Whoever thought giving an incurable disease to a mother of a special needs child obviously had no idea what my life was all about. I NEEDED to get better and I wasn’t getting what I wanted fast enough through prayer, negotiations, or hard work so I decided to have words with the pilot myself. Who in the world was driving my life into oblivion? I stood my ground and went right to the source. It wasn’t fear sitting in the cockpit, it was Christ. The whole time.

My life wasn’t going off course at all, this is where my life was meant to go and Jesus remained at the controls. Only in my desperation was I was ready to see Him and that was when I had the “Oh….. Oohhhh…..” moment. Every time I complained about the journey of my life, I was complaining about Him, every time I stomped my feet and said I knew better, I was claiming to know better than the Lord of the Universe, and what do you think happened each time I sent fear up to the cockpit to take over the job only meant for Him? Jesus remained steadfast until I realized who was really in control. You see fear never really had a chance because I put my trust in Him a long time ago, the only thing I managed to do is invite myself to an additional needless journey with fear. My doubt made me rely on other things that could never get me where I needed to go. Although I thought I knew what was best for me, He knows me better. You see, without the detours in my life, I’d have nothing special to share with you today. He planned, navigated and piloted my journey so He would have the glory and I would always reach joy. Let me repeat that, He wants us to always reach joy. That is His plan for you, to reach joy no matter how off course you think you are. He doesn’t need your guidance to give you joy but it helps when you let him have the control. My moment came when I finally heard Him say, “be obedient, I’ve got this.”

My life has veered in directions I would never have anticipated ten years ago but it has been more joyful than I ever could have imagined, and yes, that is despite of those times of trouble. It is in those times of difficulty when He does His best work in me. He wants to do the same for you. No doubt He wants to do all he can to bring you to joy, He has already done so much to win your heart.

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Pondering the “What If” in Life

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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The Easter Approach

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.

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The Rose Colored Glasses

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Beautiful is the view from rose colored glasses. The dreamy spectacles enchant the lackluster world. Nothing can spoil the view when the world is tinted in the hue of rose. Storms roll in and candy colored drops fall from the sky. Just open your arms wide to receive the gifts imparted from a world radiating a floral glow. All have worn them and all have felt immune to the world. The newly in love, the couple having their first child, or maybe newly acquired wealth. While in this transient state, nothing else matters. No words or advice can penetrate the feeling. I was there many times. It felt glorious and no one could change me. All was right with the world and I had all the answers. I only wanted to do as I wished and no one could challenge my flawed beliefs.

Time still passes when in possession of new and pretty things. The dust from the journey starts to tarnish the pretty rose glass, a few stumbles toss and scratch them, and over time, they aren’t as nice as they once were. Some people rigorously try to replace the feeling with a number of different things. Yet, time wears down beauty and life refuses to stay roseate. So when it comes, maybe it’s best to celebrate and relish in the feeling. Everyone has their time when the sun shines a little brighter, the road traveled is smooth, and the air smells as fresh as a new spring day. At this time, some plead for time to crawl. Or even stop. These are the moments that make up the most perfect of memories.  Remembering can flood you with emotions and feelings just as fresh as when it happened. When things don’t seem as splendid, these are the best moments to remember. They act as a glimmer of light when it has been too long since life looked rosy. I often like to remember a time before diagnoses, the days my children were born, or when my husband and I fell in love.

Looking back can certainly swell my heart with joy but it can also remind me of my own ignorance. I don’t like parts of the person I once was. There was a time I was so high on this feeling that I thought I had it all. I had all the answers and I didn’t need anyone’s help. I was ignorant to the people closest to me and that had to change. The only unacceptable ignorance is the ignorance that refuses to be changed and I was full of it. I thought I knew more than people with a lifetime of experience, I had strong opinions of many things with no personal experience , and the only things that mattered were the ones that surrounded my life. I allowed myself to boast but was unable to look past the end of my nose. I had fallen from my perch many times and usually walked away unscathed. I had to take a few big falls before I finally broke. There were times I couldn’t get up. I spent a lot of time kneeling at my broken life, trying to put the pieces back together. Some parts of it are still not put together.

A lot of people pass along wisdom during times of tribulation. Many people quote the saying, “God doesn’t give you more than you can handle.” The more hardships I experience, the less I like this quote. I know I have been given more than I have been able to handle. This quote has made me feel inadequate. Where was this strength equal to the turmoil I was facing? Why was it so hard to pick up the pieces of my rose colored life? I was broken down until I was folded over with my face resting on my dusty hands. There was nothing left but to lay down my ignorance and plead for help. I think we will all be given more than we can handle alone. There are times we must silence ourselves, kneel down, and ask for help. I have replaced this saying with one of my own, “God will give you more than you can handle because breaking you down is the only way He can get you to kneel.”

In those most dismal moments you can choose to desperately hold on to the beauty that is slipping away or you can kneel. You can cling to the ignorance that refuses to change or give up your turn peering through the glass and find something deeper. The only way I was going to learn was to be broken.  I wasn’t changing any other way. Something terrible would occur, I would reflect and realize I needed to change. Time would pass and I began to forget. I would forget the gifts suffering allowed me and went back to my old ways. I was stubborn and it took a lot to change me. I only wanted to be happy when I was peering through the rose colored glasses. It was easier that way. These days, I try to find happiness even when I am broken and dirty from the journey. I admit, it can sometimes take effort searching for a reason to be happy. That’s when relying on those reaching out to help and something bigger than yourself is worth it.

The world can give us many reasons to lose hope. Several years ago I wanted to change everything in my life. I wanted to move, find another job, and start over. I had lost hope in other people. My plans changed when my son was diagnosed. Those same people I thought I lost hope in began to reach out to my family. I found the love and compassion I had feared was lost in this world and it took my own devastation to see it. Disparity is not the end of happiness but possibly the best way to find it in the most unlikely way.

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Fighting Fear with Two More “F” Words

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We moved recently and the best feature about this house is our front porch. We installed a porch swing shortly after our move. I like to watch the cars and people go by but I especially enjoy sitting on the swing during a storm.  I like feeling the chill of a cold front rushing along a spring storm. I will eye the trees to see if the old saying is true about leaves turning over before the rain. “When leaves show their undersides, be very sure rain betides.” I love hearing the rain on the windows and the feel of the moist wind while impatiently waiting to hear a crack of thunder. But there is a limit to my love of storms. I don’t like damaging storms and I am especially afraid of tornados. I have never seen one but my childhood was full of tornado hype. Why? I had two older brothers and what kind of brothers would they be if they didn’t exploit their little sister’s fear? I admit, they were good story tellers. Everyone from Freddie Krueger to Chef Boyardee came in on a tornado to haunt my dreams. (Yes, you read that right.) The actual chances of being amidst a tornado are pretty slim but with children, facts don’t seem to matter. The idea of what to be afraid of usually comes from the first person who plants the seed of fear. My brothers were farmers with pockets full of seeds. I am almost ashamed of the many obsurd fears I had as a child.

My oldest is eight.  He often comes home from school asking if things like warewolves and vampires are real. Even with his limited personal knowledge of such things, other children seem to know enough to make him squirm. I admit, he is gullible. We limit the nightmare inducing programming, probably because we enjoy our sleep. The Indiana Jones movies were popular when I was his age. My parents didn’t allow me to watch some of the more graphic parts of these movies, if we can even classify them as graphic by today’s standards. I was exposed to the horrors of life at the times my parents felt I could handle them maturely. I was probably watching a limited amount of Rated R movies by the time I was as a fourteen. I will probably do the same with our children. (There are the fears we must explain appropriately to children as soon as possible but maybe I will further discuss those in a later post.) So as soon as I was allowed, I wanted to watch all the parts of Indiana Jones I had missed. I wanted to know for myself if there was really something to fear. I will note that I have since viewed the films numerous times and they remain some of my favorites today. I learned to fight fear with knowledge and what facts could not explain, I relied on faith.

These days I obtain a great deal of my knowledge by being a Google junkie. I am not proud to admit my vast knowledge of useless movie info or what syptoms may or may not be associated with certain ailments. During my fourth pregnancy I could be counted on to stuff my head with pregnancy related articles. I should have been an expert by then, more like a baby factory, but it puzzled me to why I still felt the need to investigate. I ended up blaming heredity. When my dad was in charge of the remote control we would be stuck watching PBS, but then again, we only had five channels. And my mom, she owned a large medical dictionary. Since we couldn’t afford impractical  doctor visits, she relied on her outdated mammoth to self-diagnose our illnesses and reassure us we weren’t going to meet an early demise . As much as I claimed that I would not turn into my parents, my viewing choices are reminiscent of PBS and I am reminded of that larger than usual medical book every time I open my WebMD app.

Adulthood reminds me of why I searched for the truth when I was a kid. I am closely effected by three incurable diseases. While I do admit my own fear of these diseases, I won’t be crippled by them. I am fighting with facts and relying on faith. I will keep searching and asking, but I will probably never be satisfied. I know all the knowledge will never rid these diseases, or even tornados, from my life but I have the power to control my fear. The control over fear must also be rooted in faith because sometimes no matter how much I dig, there are things I cannot control. So I choose to teach my children about fear in a positive manner. Unlike those times as a kid, I cannot run screaming every time the unknown jars my senses. I have to teach by example and I am frequently tested watching my son lose control to epilepsy. I don’t consider it bravery as much as necessity. Once fear comes over my face, it will soon be on theirs.

I will always be afraid of tornados but I am not afraid of every thunderstorm as I was as a child. I have educated myself and know the difference. I now enjoy what I once feared and have prepared myself for the worst.

As for the leaves turning over before a storm, deciduous trees, or leaves with soft stems, often turn over as a result of the humidity that precedes a heavy storm.

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Grandmas

*My friend and I have a deep love and appreciation for our grandmothers. Here is my contribution to jointly acknowledge these lovely women.*

Dear Grandma:

Your life is a story of subtle grace. This is a rare quality and one I someday hope to acquire. I am afraid I will never achieve the grace and wisdom I have found in you.

You have fought many battles with quiet faith. When my life feels like it is out of control, I remind myself of how you patiently handled each difficulty with a humble spirit. You didn’t complain about the injustice you were handed but remained thankful for the blessings of each experience. It is uncommon to know one who speaks not of her own pain but asks how to heal another. In a world full of people who ask to put their own needs before all others, you gladly set aside your own. You exemplified this by giving your all to those around you. You gave freely of your possessions, home and especially your love.

When I need to be reminded of kindness left in the world, I recall your life in opposition to the negativity. You try to see the purpose in the worst of things but when there is no obvious reason, you have faith that someday you will grasp what you do not understand. As a little girl, I watched you quietly kneel beside your bed in evening prayer and recently listened to your prayer the night grandpa died, thankful for your many years of marriage. You have given me lifetime of examples of faith.

As I age, I grow a deeper appreciation of you and regret that this appreciation wasn’t sooner realized. Maybe then I could have taken time to talk a little longer, consume your wisdom and further enrich my life just by being a part of yours. You are older than I remember in my childhood but you are not forgotten. You are just as beautiful and a true treasure in my life. You allowed me to grow in my own time and navigate my mistakes even when you had the wisdom to correct me. You gently guided me and encouraged the best decision but always offered a hand when I faltered.

Thank you Grandma, for living by example. I will continue to follow in your footsteps but I know I will always remain small in your shadow.

Love,

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