Beauty in a Different Wrapper

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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Just a Moment

There are moments that take you by surprise with the amount of feeling they cause to rush through you. Some are more profound than others, but they’re all recognizable. I guess they’re emotional epiphanies. Sometimes, during an everyday moment, you catch a glimpse of how things really are. Like we’re all actors in this television show and that insight that rushes at you out of nowhere is like the director unexpectedly calling “CUT!”

I’ve had tons of these moments that have given me pause and I’m not going to rack my ever-tired brain trying to recall them now. But I will say that I had one tonight that was moving enough to get me to write. I’m pretty grateful for that since I’ve sort of fallen off the wagon when it comes to being a prolific writer. I was doing so well for a while there, and then, as it does, life got in the way. I’m fighting my way back. Honestly. I’m not giving up…

But anyway, I was brushing my teeth after my shower this evening, and standing in front of the sink in my pajamas. Husband was just outside the open door and we were laughing and talking about something ridiculous (as we often do). I was brushing away and I looked down at myself. I had on a thin, loose fitting tank top and no bra (it’s not as sexy as it sounds. TRUST ME). In the mirror I could see my blotchy, post-shower skin and the frothy blue of the toothpaste dripping from the corners of my mouth like a vampire who’d just fed on the entire Smurf village. I thought: This. Man. Loves. Me. Moreover, he loves me at my rawest. It’s like for a split second I’m 14 again and I can’t believe I’m standing there with my boobs hanging freely and almost under my arms, slobbering on myself, with another person in the room—let alone a man. But that’s what adulthood is. That’s what marriage is. What love is. You’re able to be yourself around another person, to the most extreme limits. It’s both weird and awesome. I mean, if you really think about it.

So I had this little moment of recognition and as I do every time one smacks me in the face, I thank it. I’m grateful for the insight, for knowledge, for the chance to really appreciate what it’s showing me.

~L~

A Note to My Groom Ten Years Later

Happy Anniversary to my husband. Ten years have gone by so fast but it hasn’t been easy. If we were to rewind and meet up with ourselves ten years ago, we would not be surprised to know that we desired all the newlywed perfections for our future; a big house, good jobs, the sleek suv filled with our 2-4 kids, maybe a Siberian Husky playing in a big yard, health and happiness. We got some of what we wanted, we finally moved to a nice sized house in a nice community, instead of the suv, we got the mini van we said we never wanted, we don’t have a dog (or any pets for that matter), we have maxed out on our dream number for children, we have had difficulty with health, but we do have happiness.

Our perception of happiness changed from ten years ago. I knew what I wanted and I couldn’t wait to get it. I was just as selfish with my desire to the check off every dream on my list as I was when I met you. I had taken a gnarly road to get to our wedding day and I wanted the road ahead to be as beautiful as the tree lined driveway we dreamed about. It didn’t always turn out that way. Every time we hit a bump on that beautiful road, I was easily discouraged. I waved my white flag and shook my hands at the sky but you reminded me to be patient. You had a positive attitude and encouraged me to pray about our difficulties. Three years into our marriage, we had struggled to get pregnant,  I had some health issues, and we learned our little guy had an incurable disease. For the first time, there was uncertainty in your eyes but you still held strong to the belief that God would see us through. The long, uncertain days became shorter and we began to adjust to our new normal. We began to bond closer together through our common struggles because no one else truly understood what we were facing. The endless nights of little to no sleep turned into years and we began to wear thin. Our special guy began to display behavioral issues, his seizures were never fully controlled and we always had questions. I would be close to losing hope and still you prayed. Your actions were and have always been selfless.

You are patient. You never complain when I need a shoulder to cry on. When those inevitable moments arrive where the world has crashed down on me and I have lost hope in myself, others, and my ability to move forward, you listen. You don’t try to fix me, you talk with me as long as I need, even when our conversation wears on into the morning. You constantly desire to do more and the only flaw I can see in you is the size of your heart. It is so big that you would give away all you have if it meant helping someone you loved. But on the other hand it isn’t such a flaw, God Himself answered prayers with self-sacrificing love.

The only question I would have for our future is, “What would I do without you?” Who would laugh at my terrible jokes, take time to pull apart my reserved personality and see me better than I could ever see myself, and who would help me carry our heavy burden? You are not just my husband, you are the perfect piece of me. I see in you all the things I wish I could be and I often lay awake wondering how I could deserve….. you……

We aren’t perfect but together, we can conquer the imperfections. We can be a cheerleader for one another when we feel like life has handed us too much, we can find a smile under the tears when disappointment once again comes marching in our door, and we can hold on to each other when we have no choice but to pray. It seems like a bulk of our marriage has been praying for answers and hoping we can pull through. In reality, I think the answers we have been seeking have been in front of us for ten years, you in front of me and me in front of you. We have been pushed, pulled and driven harder than most couples but we choose to face it together instead of turning from one another. Happy ten years. I can’t wait to see what else life hurls our way and how strong we will be because of it.

*d*

Sweet, Sour, and Everything Between

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My husband and I call our disabled child the “Sour Patch Kid.” If you have seen the commericals, you will know why. The slogan for the candy is, “sweet on one side, sour on the other” and their commercials usually show one of the little candy kids getting into trouble followed by a cute hug or something similar. I believe my son has studied these commercials in depth so he can perfect the art of the dual personality.

Typically he saves his sour behavior for home. From the time he started early education (at 4 months – he’s been working at it a long time) he was often praised for his good behavior while at school. My earliest memory of his “patchy” behavior began in the first year of early intervention. One of the biggest issues I saw at home would be him beating his head on the floor. I would take him to class and discuss the matter with the therapy staff and they could not believe he would exhibit that behavior. He would continue to do exceptionally at school and when we got home, he would be at it again. Even as he got older, he would have the staff wrapped around his finger and again when he got home, he’d do something like whack me. We have discipline in place and he sometimes ends up in time-out frequently. Most of the time it helps to curb his behavioral problems but he is continually testing the water with me. Today for example, we were waiting for his bus and it was running late. He was waiting inside dressed in his outerwear. I know it can be hard for him to understand why he has to wear it when he feels like he is going nowhere. He had taken off his gloves numerous times, threw his hat, jumped on his sister and other little things to show his displeasure of having to feel like a penguin. I sat him in time-out twice and the last time he sat he was working at taking his gloves off again. I reminded him that I wanted the gloves on his hands and he needed to behave. (I should mention the bus was a half-hour late). He didn’t like the whole morning and head-butted me in the face. I have a high tolerance for all kinds of ill behavior but getting hit in the face in any capacity is my least favorite. He got more time on the timer for hitting his mom. Shortly after, the bus finally arrived. He gets to the bus and out comes his sweet side. “Sigh.” Fast forward to this afternoon, the bus pulls up and he is happily calling for me. He waves goodbye to his friends and jumps in excitement as the bus pulls away. On the way back to the front door, he whacks me. “Really, little dude?”

This behavior has baffled us since he started showing signs of behavioral issues. We were assured it is normal but no one has any real advice. They refer to the period of time before the kids are ill behaved at school as a honeymoon phase because they eventually start the same problems at school. I am thankful that has not been the case with my little guy. He is still just as sweet as can be while he is at school and much more rotten for me. It is sad because I often feel like everyone else gets the best of him. The most frustrating thing is hearing from family how well he behaved he was until we walked in the door. That comment happens a lot and we always have the same answer as to why it happens. “We don’t know. We are just as lost as you.” We have no answers, just theories.

On top of trying to unravel his medical issues, we have the behavioral problems as the cherry on top. It’s daunting. Some days I feel like he is in time out three times more than the other children, but we have decided to be consistent as possible and require him to follow the same rules as the other children. Although he is allowed an additional warning or redirection of behavior. Nonetheless, he requires and demands a lot of attention, sometimes using the sweet and cuddly side or the sour side. I prefer the cuddly side and no matter his mood, I try to sneak a hug and kiss in, even if he doesn’t like it.

He recently started objecting to everything that happens around him. The staff at school have been trying to teach him how to use his voice to ask someone to stop bothering him (an issue because he is in a specialized classroom with other special needs children and he does get hit). That is all he does at home now. He understands the words, just not when he should use them.

I hug him. “Stop!”

I tell him, “I love you.”

“Quit it!”

One of the other kids sit next to him. “Knock it off, okay?!”

The baby cries. “Stop it, baby!”

He is learning what they are teaching very well. I just wish I could interact with him with less yelling.

My theory – he knows home as his soft place to fall. He is comfortable here and he knows he can take his frustrations to me, or slap them on me, whatever works. He has a gap of cognitive development that has slowed his language and prevents him from being able to communicate how he feels or what he wants. If I tell him that he can’t throw a ball in the house, I could explain why but he doesn’t understand. He has bad days where he is more tired or weak than usual and he is unable to convey that to me. He has no way of understanding why he feels that way. He has to be frustrated so he takes it out on the one person with whom he feels the most comfortable, me (or his dad when he’s home). I am stern with him and I have yelled. Every scream, hit, head-butt, and slap I take chips away at me. It is a crash course in patience every day.

Today when he came home, he crawled in his beanbag chair, covered up and fell asleep before I had time to ask about his day. It happens a lot. He comes home from school and crashes. Today he had a seizure at school so when he got here, maybe that smack was his way of telling me about that unpleasant event and how it bothered him or made him tired. He comes home and he feels like he can be himself and isn’t that what we all want? I don’t like his ill  behavior and we will continue to work on it but I know it’s something we just have to deal with. Maybe I will get lucky and he will let me off with just a “You be nice, Mom,”  as he pulls away from another one of my attempts to hug him. I will take what I can get and readily volunteer to be his safety net. Tonight he slept through the noise, dinner, baths and craziness of our evenings. It breaks my heart. His disease steals so much from him. It steals time with him away from me. My time with my little buddy is precious. People close to our family forget how sick he is. If he seems or looks okay than they think he is okay. The truth is, he has more going on than most people have to encounter in a lifetime and does pretty awesome. I wish more people would look past the sour patch and remember there is a little boy inside missing out on so much at the hands of his disease. I know I’d take any additional time with him I could get, sour patch and all.

*d*