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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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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*d*

Chasing a Diagnosis

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

A Brother’s Lesson in Disability

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It's hard to believe they were once this little.

My disabled son is seven and he is the second oldest of my four children. My special needs son was diagnosed with Tuberous Sclerosis Complex at three months of age. A few of his secondary diagnoses include epilepsy, autism, and intermittent explosive disorder. He is considered multi-disabled. As he grew, his delays became more apparent to all of us, even to my when my oldest son. He and my youngest son are 17 months apart and it was very exciting for him to have a little brother of his own. It didn’t take long for him to notice that his little brother didn’t play with him as he anticipated, and that his little brother was also sick.

At four months, my youngest son developed a rare and catastrophic form of epilepsy called Infantile Spasms. These deceivingly innocent looking seizures occur in clusters and are very hard to control. He would have multiple episodes a day and the seizures would be only a few seconds apart and could last up to fifteen minutes. All of our best attempts at controlling the spasms eventually failed. This made it hard for him to reach developmental milestones. His brain was just too bombarded with epileptic activity to make any significant developmemtal progress. So as both my boys grew, the developmental gap also grew. My oldest would be playing ball, stacking blocks, or drawing and my youngest could only watch. His body was weak and he had limited mobility. He also had significant speech delays. It was obviously hard for all of us, but especially for his big brother who wanted to play with the “little buddy” he eagerly anticipated. How could I explain to a three year old why his little brother couldn’t play or talk? How could I help him grasp such a complicated subject in a simple way?

My oldest was very familiar with his room. We spent alot of our time playing there. I first asked him where all of his favorite toys were and he happily showed me. Next, I blindfolded him and asked him to bring me those same items. He did find and bring me what I asked but it took him a while and he needed my help. After that and a few laughs, I explained, “Your brother is just like you, he just sees things differently. It may be harder for him but he knows what’s around him, just like you knew your room even with the blindfold on. And just like you had to take your time, he has to take his time to do all the things he would like to do. You needed me to give you directions on where to go and we have to do the same for him. You eventually got to your favorite things and he will too. You are one of your brother’s favorite things and he will find you. Give him time.” I also reminded him that even though our experiment was hard, we still laughed and he needed to laugh with his brother, even when it gets hard. He smiled and I hoped something stuck but every day from then on I still remind him, and all four of my children, of one or all of these things when life gets hard,  give it time, offer help, give lots of love, and never forget to laugh.

*d*

A Boy Fading

It’s the first day of school and he is worried about making friends, finding classes, and navigating a world that is literally closing in on him. You are nervous as you watch him prepare for his day even though you have seen him do it many other times. Your son is different. Your son has an invisible disease that is robbing him of his sight. You have to let him go although you know he is going blind. You won’t wave overzealously to him as he smiles eagerly at the stoop of the school. No, you will hide your fear with a haphazard smile and he will crack a cautious grin and wave to you anxiously. You are not sure if you will experience the happy anticipation of hearing how wonderful his day was because his previous school proved to be a terrible experience. You pray a new year and a new school will be the right decision for you both. The question, “Why?” rings in your ears frequently and today is no exception. You know the answer, it’s because he was born with this genetic condition that is stealing his vision. And then that same sickening feeling wells up from your gut and you try to stop yourself from revisiting the same internal battle that steals your sleep. You know the conclusion is always the same, life hasn’t been fair.

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When it comes to children diagnosed with a disability that robs them of any physical or mental capability, it is often hard to see the silver lining. The hard truth remains the same, it isn’t fair. It is unfortunate that in our supposedly accepting society, people often prey upon the weak much like a lion attacks the weakest of a herd. Too many continue to act like animals when encountered with someone who shows the slightest fragility. School should be a safe environment for every child but instead many children are teased, bullied, and excluded based on differences. Parents often have to decide if they want their child to continue an education at a school that is adding unwanted stress to already stressful physical or mental health issues.

Yet, it happens every day and the above llustration is a very certain reality for a little boy living with a rare genetic disease. His name is Avery, he is 10, and he was born with a condition called Retinis Pigmentosa. This inherited disease causes severe vision impairment by retinal degeneration of the eye. During the course of the disease, the cone and rod (photoreceptor) cells die which causes a decline in vision. The landscape of life for individuals with this disease slowly turns into a confined view of reality. Life that was once bright and colorful slowly turns into a channel of black.

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Even his favorite things are fading from view.

Avery is as bright and as inquisitive  as any other child his age. Through it all he has tried not to let his disease define him or what he wants to accomplish. But, Avery’s vision is slowly fading and with it, it takes the spirited independence of a little boy. He no longer rides a bike or a scooter because his disease has progressed enough to make these iconic childhood activities risky. At his young age, he now has to be more cautious because even walking into a new environment creates challenges.

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Sometimes he feels very alone.

And so brings us to Avery’s first day at a new school. He leaves behind students who heckled him for understandable clumsiness associated with his disease, parents who allowed and contributed to the bullying, and impatient teachers. He now has to familiarize himself with a new school, make new friends, navigate a completely different environment, just because he was born with an incurable disease. That is when unfairness is caused by the actions of those who made him to feel unwanted over no fault of his own. Disease and disability are never an elected decision of life, but the unfair treatment makes it seem that way. Teach your children about acceptance. Teach them to love one another regardless of differences. Even a child can be a bright light, and they too can make a difference in someone else’s life. And yes, a bright light for a child whose world is growing dark.

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Avery with his brothers.

If you wish to support this little boy and his family’s difficulty paying for his medical care, please visit their page:
http://www.gofundme.com/uqm3u7f3u

*d*

Beautiful as a Flower

I love my flowerbed. Around March, I get excited about the endless planting possibilities. My favorite color is pink so I usually find a variety of shades and flowers in my favorite color. As much as I adore the color pink, I also know I can improve upon my flowerbed master piece if I added a few complimentary colors. With creativity fueling my spring time thoughts I forget one thing, I don’t live alone. I have five other people who may interject their opinions and since I want to teach my children to share, I must also share. “Darn it!”

This year when I went to the store where I wanted to purchase the perfect pieces to my creation, the kids also came along. If you have ever been shopping with a kid, you know they either want to buy or help pick something out. On this trip, they wanted to put their favorite picks in the flowerbed and plant them themselves. My oldest daughter won over my heart as she asked to plant additional pink flowers. My oldest son decided he wanted orange marigolds. I don’t like marigolds. It isn’t that I don’t like seeing them, I just don’t like seeing them in my flowerbeds. He wanted the dark orange, as to exclaim, “These are mine!”.

“Darn those orange flowers,” I thought. “Why wasn’t his favorite color green like it once was?” I knew how important this was to all of them so I needed to let go and find a way to make us all happy. Then I remembered something about myself.

While planning my wedding ten years ago my husband and I went to a department store to add items to our registry. The woman helping us was probably old enough to be a grandmother. She was sweet like one until she asked us if we wanted to register towels. I was reluctant as we had already purchased towels for the apartment we would share after the wedding. After some pushing, she won over the approval of my husband to register towels. She then inquired of us what colors we were using in our wedding decor. When I answered, “none,” she got annoyed. I explained that I had seven bridesmaids with seven different colored dresses and I used several different shades of pink for the bouquets. She made me feel like a criminal for not conforming to tradition. I wasn’t going to change because she disapproved. And with that, I registered every variety of color towel I could find.

My son was like his mother, different and not bending to conformity. I planted his flowers next to the walkway leading to our house, they look beautiful. I see how they pop out and exclaim, “Different is beautiful!”

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Think about the sky. On most occasions it’s blue or maybe gray, but at sunset, it is sometimes painted in brilliant colors. Hills and roadways can be lined with vivid wildflowers. These are most picturesque, and yet, they are naturally occurring in nature. My favorite is seeing tiny infants grow into unique individuals with distinct personalities. Nature is beautiful because it is different, and so are we. Whose standard are we comparing ourselves to anyway? Do we really all want the same hair, skin, and shape? That would be like me missing out on the surprising beauty in contrast I found in my little flowerbed and it only took a simple change of heart for me to truly enjoy it.

*d*

P.S. After my grandfather passed away, I framed a picture of he and my grandmother’s wedding. She had four bridesmaids in four different colors. I guess I take after someone too.

A Very Happy Birthday Little Buddy

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It’s a quarter till eight in the evening and three of my children surround my husband in our living room. Each are taking turns blowing out a birthday candle and singing the Birthday Song. My special needs son is singing his very best version of the song and inserting various family member’s names into the chorus. No one is celebrating a birthday today, no one is celebrating a birthday this week but we are celebrating.

My son has struggled with autism for the last five years. For the first two years after his primary diagnosis, he was not diagnosed with autism despite his self-injurous behavior. As he grew, additional autistic behaviors became more evident. It was clear he was having a hard time dealing with the world around him. From a terrible experience at Disney World to family gatherings, he was unable to tolerate loud noises and crowds. Birthday parties were the worst, even his own. He didn’t like singing or clapping and the appearance of a birthday cake sent his anxiety skyrocketing. We decided after many attempts to encourage him to participate, we would leave the room with him during the singing and blowing out of the candles. It was hard for some family members to understand this when we celebrated his birthdays but we found other ways to acknowledge his special day.

Since the addition of a new medication to treat his disease, we have slowly seen developmental progress. He has been on it for over two years and his language has improved, he has gained some understanding of the world around him, and he has been able to tolerate noise and crowds much better. We will never be able to redo our vacation…. but we can help him enjoy those experiences he once missed out on.

Last Christmas my son was six and it was the most amazing Christmas with him yet. He was interested in opening gifts where he hadn’t been before, he was excited about the Christmas lights, and he was able to sing us numerous songs he learned at school. It was a holiday of many celebrations. We also noticed he began to enjoy birthday parties and we were stunned when he refused to leave the room for the birthday song. We expected tension and got excitement. So on his seventh birthday, one he shares with one of his little sisters, we made up for the previous years. He was very excited to open gifts on his own, socialize with family, and blow out the birthday candles after singing the Birthday Song. We sung and blew out the candle six times. He was excited each time.

Disability can take these kind of moments away, little moments most people may take for granted. Experiencing these once seemingly unobtainable moments is where I find joy. I cried when I watched him independently write his name, watched in amazement as he sat peacefully playing with toys he has never touched, felt my heart jump in excitement as he ran upstairs to get the Barbie car out of his sisters’ room so he could play with them. It’s those moments when I can let go of the worry and see the little boy under the disease. It’s the little boy who likes the color purple, who loves trucks (he was recently able to verbalize this to me), enjoys watching and playing bowling, loves everything Barbie, and is wonderful just the way he is. It’s time for the world to stop pointing out the same mundane differences. Experiencing deep joy with someone usually happens when we accept and celebrate one another just the way we are, even if it means celebrating the little things that give us that joy together. Happy birthday little buddy!

*d*

September and the End of Life

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The red horizon was pressing up against the darkening blue sky. Wispy clouds floated along the cool air. Soon the grass would cool beneath bare feet. Now was the best time to experience the crisp air.

He would never experience another day like this. It was beautiful outside his hosptial window. It was September. My swollen eyes gazed drearily out his window and I imagined myself walking in the courtyard below, my bare feet making circles in the grass and my face toward the sky. The sun would warm my face and dry my tears. I would close my eyes and see the red of light and breathe in as I did many times on the hill outside his house.

I spent many summer days playing outside my grandparent’s house.  I would scuffle up and down the hill littered with stones along the edge of their house and down to the small pool my grandfather purchased for my grandmother. I would frequently put my hot feet into the cold water and my body would involuntarily pull back. I would dance my feet lightly on the water’s surface as I took in my surroundings. This was one of my favorite places to be. A creek ran through the back of the property,  while numerous trees, bushes and flowering plants, mostly Mother’s Day gifts to my grandma, lined the edge of a field. Well manicured grass extended in both directions and behind me stood their little house on the very top of a hill. They sold the house the year of my high school graduation and it has since gone into disrepair. Nevertheless, some of the best memories of childhood still reside there.

I couldn’t return there or escape to the space below so I stared across the sprawling garden and over to the stained glass windows of the chapel. I closed my eyes and wondered if I should enter and fall to my knees before the alter. I would kneel until my knees hurt and my back ached if God would just take this day away. How could something so terrible happen on a day a vision to the contrary? Could I get him away from his bed and out to the garden below? I wanted the sun to warm his face. I wanted him to feel the grass and experience more than the space between the hospital walls before he would no longer have the opportunity.  Maybe I could ask to move his bed next to the window. With multiple lines feeding his veins I knew it was impossible. His fingers were turning blue and his blood pressure was slowly dropping.

I had never before experienced the anticipation of death. It was awful and cruel. I told myself to be brave. I would stand at the window or wander down the hall in a futile attempt to collect myself and accept what was happening. I tried to fool myself into thinking I had been through plenty of hardship and could be an example of strength. My eyes would flit around the shocked faces surrounding his bed and I accepted the weakness we all shared. Every face was distraught and terrified. Many could hardly speak. I did not want to accept it but I pleaded for the day to end. My mind looped, “I can’t do this.” Then I would try to rationalize my thoughts so I could quickly return to his bedside. We had spent several hours watching him try desperately to acknowledge our presence despite his own agony. We knew the inevitable finish to this normally beautiful day was creeping closer with every tick of the clock. He stopped trying to speak and stopped opening his eyes. The clock grew louder and it became difficult to ignore amidst the deafening silence.

The awareness of death was strange knowledge. My grandmother paced the halls and nervously fidgeted. She could hardly stand to stay in the room and watch over sixty years of her life slip away. We prayed,  shared stories, and told him we would be okay. My mom tenderly cared for her father and only briefly left his side. She undoubtedly suppressed her own fear to make sure his hands were held, he was comfortable, and aware of her love. I wondered how someone who always took up such a large part of my life could be reduced to a small space aloft a hospital bed. We sat in a circle surrounding his bed, holding his hands, touching his feet, and crying until my mom raised her head from his chest and sad, “He’s gone.” It felt like we all exhaled simultaneously in disbelief and our breath lingered stale in the room. It was over and so was more than eighty years of a meaningful life. A part of me also died with my grandfather as happens with all those who share our lives. It was sad to think that his memories, experiences, and wisdom just died with him.

We stayed for an hour. My grandma started calling loved ones shortly after his passing. Her busy hands didn’t make a happy heart but it helped her deal with her new reality. I kissed his forehead and held his hand while he was still warm. His head was moist from fever. I told him that I loved him and hoped he would somehow hear me. This was one of the most defining losses in my life.

I have lost others I have loved. My uncle (my mom’s brother) died unexpectedly three years prior as did my paternal grandfather, but I was very close to he and my grandmother. I spent a great deal of time at their home and it became a place of refuge for me. That comfort was now broken and so was my grandma.

The day he died was gorgeous. I often try to imagine him rising above his bed and lingering in that courtyard outside his window. Maybe he went into the chapel and prayed for all of us still lingering beside his broken body. Maybe in our sadness he was freed and as joyful as he had ever been. Death is an awful truth none of us can avoid or understand until we are looking out to the broken faces surrounding our own deathbed. Maybe I too will be released from life in a hospital bed like my grandpa or at home like my uncle but it really doesn’t matter. What matters is who will surround us when it is time. I would be so blessed to pass like my grandpa. It was awful for those who joined him on his last day but he did not face it alone. The love of family gathered with him on that beautiful September day and remained to his earthly end. My grandma recently told me that she is starting to forget things about my grandpa. I told her it is more important to remember how he made her feel. It is hard to forget the warmth of a loved one.

This was the first time I had been at another’s passing. On the drive to the hospital I had no doubt what I would witness and I knew it would change me. I returned home that night eager to embrace my family. I had an earnest desire to enjoy those I love because my time with my grandpa wasn’t long enough. I wanted to keep everyone within my reach but it didn’t last. I also began to forget and a part of me has yet to accept. It will eventually sink in and I will inescapably be in the throes of grief. For now, I am reminding myself of how fast a life ended on that September day. Today I try to enjoy what time I have been given. I am sure the morning he walked into the hospital for surgery, he didn’t realize he would never leave. He had come in the doors and felt the last breeze on his face, slept his last night in his own bed, and took the last steps to a completion of life. He was a faithful man and I know there was more for him beyond his death but he didn’t want to die. Most people don’t. There is always more to do and another life to touch. There are more gorgeous days to see and grass begging to be tread upon. It is time for me to stop looking out the window and take in life.

*d*

Granny

In response to the post “Grandmas,” *d* is right. We’re both very lucky to have the love and influence of such wonderful women in our lives.

For me, my grandmother, or Granny, is all the more special because she raised me. I lived with her from second grade until I was 20. To me, she’s always played a dual role of mom and grandma. Not that my mom isn’t around. That’s a complex story for another blog.

I realize how lucky I am to have grown up with Granny. She worked at a restaurant for 25 years, eventually earning a place in management, but we never had a lot. We always had enough, but nothing over-the-top. I know if I’d asked for something, she’d have done her best to get it for me because that’s the kind of lady she is. But I rarely asked. Even back then I was content to wear my clothes from Goodwill and Kmart and never expected an overpriced sweatshirt from Aeropostale or American Eagle, or Nike shoes and Levi jeans. I was happy with what I had.

While I didn’t recognize it at the time, I can look back and see just how special and valuable her guidance was. She and my grandfather had divorced before I was born and he died around the time that I was a toddler. She never had another man in her life after her marriage to him ended. She was content with her own company. She owned her home and worked hard to pay the bills and take care of me, all the while, squirreling away money.

I learned from her a simpler way to live. To be good to other people. To appreciate my family, as broken and scattered as it is.

I’d like to say that I followed exactly in her footsteps, but I am my mother’s daughter and my daddy issues coupled with a stubborn wild streak ensured that I would make my own path strewn with men and debt and heartache. I still live simply and prefer shopping at thrift and dollar stores to the big department stores. I respect my elders and have an innate desire to help others. I’m grateful to be the person I am and even more grateful to Granny for giving me such a strong example to follow.

As an adult, I find myself wanting more for myself than I did as a kid. I’ve been in the workforce for 17 years and I know what money can do. I still could care less about name brand clothes. I’m dreaming bigger. I want to fix up the house we’re in now, sell it, and buy something bigger, in the country. This has probably always been a goal for me but now, as Granny ages and keeping her in her house trailer has become increasingly difficult, I have an additional objective. I want someplace big enough where I can have Granny live with us. I know she doesn’t want to give up her independence but if we can obtain a place big enough that none of us are uncomfortable, that might help her relinquish living alone. I want her where I know she’s safe, where I know she’s fed, and where I can enjoy her company. Maybe that’s selfish. I don’t know.

That dream is why I keep trying. Despite pitfall after pitfall, and often debilitating depression, I’ve never given up that dream. It’s that dot on the horizon I keep moving toward, doing everything I know how to do to bring it closer and into focus.

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,

*d*