A Thought About Future Posts

This year I have contributed several articles to The Mighty. My stories have discussed our life with our special needs son and I have tried to be respectful when discussing him and the issues surrounding him. I have slowed down in recent months because the content and amount of what I share has been weighing on my heart.

The Mighty has recently experienced a backlash of hurt feeling regarding a post written by a contributor who made light of autistic meltdowns. Many people who have autism were hurt by the post. Like the author of the piece in question, I have also made light of tough situations. Upon further reading and thought, I have deleted some of my posts that have more of a place in my personal archives than in that of the public eye.

My intention in writing about our lives has always been to open up and hope readers who were facing similar situations could relate and maybe not feel so alone. I have felt a great deal of loneliness surrounding our situation and I wanted to reach out to others. But…. but I do not want to do so and cause any emotional harm or backlash to my son.

I will continue to write about his bravery, strength, and how he inspires us daily. I may touch upon the difficulty of our lives, but I will try to mostly discuss my own personal issues.

I am not bowing out, just readjusting my mission to help him and assure him that I left him a positive future. I want him to know his mom wrote to get the disease Tuberous Sclerosis Complex known so a cure can be found. If he were to grow and have the ability to read my work, I want him to read first hand how much better our lives became because once he was a part of it.

Thanks again for reading and I hope to continue to contribute something good to my son’s future.

*d*

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Santa is Not a Noun, Santa is a Verb

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This time of year always brings up festive feelings. Most people make an effort to spread a little more joy, open up their hearts and sometimes wallets to contribute to the well being of another.

I am reminded of this anytime I read a story of an exceptional mall Santa that made an extra effort to comfort a crying child, relate to another that may be experiencing personal difficulty, or just made the visit an extra special experience. I have no doubt these types of stories and the individuals behind them aren’t new, but their stories spread much faster thanks to social media.

I personally love to see the pictures of “Santa” playing on the floor with a little boy with autism, snuggled up to another who fell asleep after a seizure, or sprawled out on his chair to create a precious moment with a sleeping infant. There are many more I could mention. With all of these unique, heart warming stories and photos floating around, does one really have to ask if Santa exists?

It is a question that inevitably comes with age in children. It’s a question posed in newspaper articles and depicted in movies. It seems a trivial question that begs a meaningful answer. I decided to give this question a go myself as Christmas is one of my favorite times of year. I am a Christian so it holds an additional meaning for me but I want to focus on just Santa here and the question, “Does Santa exist?”

For those of us who choose to urge our children to believe in Santa, we know there will be a day when they will question his existence. My oldest is eight and I have been thinking of how I want him to think of Santa and how I’d like him to see this important figure of childhood.

Santa is typically depicted as a person but I think he’s no person at all, but rather an action. Santa is a verb. A verb best defined for this illustration is this: “….a word used to describe an action….” Santa is goodwill in action. Santa is not simply confined by the traditional definition of a man who delivers gifts to children one day a year. No, he’s much more. He is the actions of all those who make the Christmas season so joyful.

It doesn’t matter if you believe in the Christian story of the birth of Christ on Christmas to spread the joy found this time of year. The generosity of spirit moves in people of various religions and backgrounds. Santa is the action in which one good hearted individual walks into a store and pays off the layaway accounts belonging to complete strangers. He is the action of people who volunteer time away from family during the holidays to provide food and shelter for the less fortunate. Santa is the stir in the hearts of many to give for the sake of giving.

Santa doesn’t move one night a year, he is in action all around us. Under the aprons, suits, pajamas, and various other typical pieces of clothing, we can find many red suits with white trim. One doesn’t have to be of any certain age to wear the persona of Santa. No one is too old or too young, too rich or to poor to spread the joy embodied in a very real figure who can be defined by the generous spirit of human nature.

Never stop believing in Santa. People will say he doesn’t exist, but Santa does exist just as much as the stir within the hearts of good and generous people who want to act on the behalf of Santa. It’s exciting to come to the realization that Santa is no longer just an individual but an action available to all.

Merry Christmas!

*d*

Finding the Right Umbrella for the Rain

It has been months and my son and I have been standing out in the pouring rain. The intensity of the storm brought on by chronic illness and disease increased quickly and unexpectedly as we found ourselves gathered under an umbrella barely big enough to shelter us from a light sprinkle. I was praying for sunlight and more ominous clouds were on the horizon. I felt hopeless.

In it all, I was focused. I was focused on living my life as if I were dying. My health has been on the decline, as also the health of my son. Any opportunity to wake and enjoy another day is a reason to be thankful, even on a stormy day. So, I would wake and my thoughts would focus on things like if I’d be healthy enough to throw a holiday party or if he would be strong enough to participate in the next school activity. I’d try to remind myself to make the most of of today because I know tomorrow isn’t guaranteed. And what about next year? What could be assured to us 365 days from now? I thought through our circumstances. I was given this gift to appreciate the moment and live for today, but I wasn’t happy. I wasn’t meeting my life with the satisfaction I thought would be a product of this new way of thinking. How could this be? The answer didn’t emerge until recently. Out of fear, I was living like I was dying but I wasn’t focusing on the living. It had become so easy to focus on the worst case scenario. Here we were battered by a storm and I expected he and I would be swept away.

My son and I both live with life altering diseases. Both of us have weathered our fair share of storms, my little boy more so than myself. We now stood together and wondered if we’d see the sun again. He lives with epilepsy caused by Tuberous Sclerosis Complex, a genetic disorder that causes tumors (tubers) to form in various organs. Many of his organs are effected but the thirty-five plus in his brain cause him to have a severe form of epilepsy that has been becoming increasingly difficult to control. In the last few months the seizures have caused developmental regression and physically weakened his body. He often looses all bodily control post-seizure. He is now in need of a wheelchair to help us transport him when incidents like these occur. I have Rheumatoid Arthritis so I have difficulty physically helping him when he has these seizures that revoke his ability to move. I am having trouble keeping my own body healthy as my RA has destroyed enough of my joints to warrant three surgeries in my future; shoulder and double knee replacement. I am awaiting M.R.I. results on my other shoulder. I am hoping the list of needed surgeries does not increase to four. My son is waiting for an evaluation of just one surgery, neurosurgery.

We know what is coming within the next 365 days and it doesn’t look good. I know I will hold off any treatments I may need until we take care of him. We never wanted to come to the conclusion of neurosurgery. We have tried all other methods to control the epilepsy and all have failed. Neurosurgery is now his best chance for him to be seizure free and hopefully gain back what progress epilepsy has taken. There is hope but I am also scared. It’s this fear that drove me to take on the motto, “Live like you are dying.”

It was a bad feeling; letting our health issues dictate how I approached each day. Each time my son had a seizure and it left him unable to move, I’d nervously anticipate him regaining movement and I’d pray it wouldn’t be the one seizure to send him to the hospital. As I lay him in bed, I thought of those seizures I may not hear as we sleep. Moreover, I feared my own disease would leave me unable to care for my children, especially special needs son as he requires a great deal of care. I was determined to fully live out each day but when that didn’t go as planned, I worried, stressed or got overwhelmed. At the end of the day, I’d then be wrestling with regret. I was frozen with fear of the unknown and fear of what I couldn’t control. My emotions were dictating my actions and I’d allowed my emotions to end my days in regret. I’d finally had enough. It was time to live without the fear, live without fear of dying.

How could I accomplish this? I began with a smile. When I felt like giving up or giving into my negative emotions, I’d smile. When I felt like throwing my hands up, I’d throw them around someone. When awful things happen, like when my son is paralyzed by a seizure, I’d smile to comfort him. I’d wake in the morning and focus on the endless possibilities for joy and if I felt that regret at the end of the day, I’d remind myself how hard he and I fought through the day….. together…. I told myself I can’t regret our best effort.

Fear and regret gave us no shelter from the storm but smiles invited sunshine no matter how bad the storm. I didn’t need a motto to bring happiness, I just needed to try to bring happiness.

*d*