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Tip on the Tightrope

Welcome to Anthony's Army
November 16, 2017
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There’s a thin line between proper protection and encouraging independence when it comes to epilepsy. It’s like a tightrope. Suspended at a dangerous height. Nothing to catch your fall. An adrenaline driving, seemingly impossible feat. To bravely walk across the rope safely. Without error. Summoning the most courageous talents in the circus of life. Calling them to step up to the thin line and take the risk.

In reality, there is a thin line we walk when it comes to epilepsy. An invisible line that seems to lay vertically from my head to my stomach. The balancing act that exists to avoid crossing this line cuts through my vital organs. It often leaves me paralyzed. At times, it seems more like a thin razor blade.  It’s ready to shred us to pieces the minute we press the wrong way.

The Vertical Line of Epilepsy

The line begins at the tip of my brain. It haunts me. Asking me what I have determined will be the best option for each specific moment in our journey. Have I properly weighed every unique risk? Some days, my motherly instincts make me a tight rope walker that is truly teetering on that thin line. I’m swaying. Swaying ever so gently from side to side. Trying to find my center. Looking to locate my balance. Working to be able to take my next step with confidence.

From there, the line travels straight to my heart. At times, this seems to be the more complicated organ. At least when you weigh the heart against the brain. The line balances the weight of this love. A love that suffocates you as fear uses its heavy force to bear down on you. Forcibly, regrettably throwing reason to the wind. Balancing this suffocating fear with a motherly love that tip toes around her little boy. Quietly nestled in the background of his journey through life. Waiting for him to spread his wings and soar into the amazing individual you know he is destined to become.

Once the heart finds its balance, the line continues straight towards my stomach. It creates a battle between trusting my gut and wondering if the complicated organ at the beginning of this line is tricking me into making more of this choice than needs to be made. When you spell it out it seems so simply. But it’s not. The thin, invisible line seems quite visible and far from minuscule. It seems complicated. Heavy. Weighted.

The Boy vs. His Description

Epilepsy has that effect. It’s fake, ya know. It presents itself that way. It shows up as an active, happy, vibrant, thriving three-year-old boy who is the picture of health. Epilepsy creates a visual impression that tricks those around it into believing things are okay. But, below the surface, they aren’t. Things are not okay because epilepsy takes that vibrant, outgoing, friendly little three-year-old boy and transforms him. It transforms him into a helpless child who’s stripped of his strength, his energy, and…unfortunately. Sometimes. His courage.

As the parent of a boy who presents a striking resemblance to the child I just described. In both cases. So contradictory when you compare the two. An oxymoron when you think about it. There are days, as that parent, that the thin lines seems to have no center. No balance. And when that line is crossed. One way or another. There is no turning back.

The line creates a wall that consumes my life. Leaves me panicked. Running from the front to the back of that wall. Desperate. Can I just rethink this decision? Can I have another chance? Find my balance. Possibly sway my decision towards the other side of that line. This is the vicious cycle of life with epilepsy.

Don’t Lean

Coulda. Woulda. Shoulda. A constant balancing act. One that leaves me tumbling, at a freight train rate of speed, off my tightrope. If I lean the wrong way to the right, I plummet to the side of protection. Shackling my son to my side with a breathtaking certainty that tragedy may strike if I don’t protect him…myself. Keeping him planted in my circle of safety. Safe. But restricted.

If I lean the wrong way to the left, I’m gracefully tumbling towards the side of encouragement. Watching my precious little guy take flight with all his amazingly positive, hardworking, and intelligent qualities. Seeing him come into his own. A proud mother that watches his independence forcefully say, “this will NOT define me.” But he’s not fully safe. Not protected.  

In all three of our scenarios. Leaning to the left. Leaning to the right. Finding our balance. There are good days and bad days. Good days filled with confidence in my exaggerated shift that blatantly ignores balance. Knowing without question that there is no better option than the one I chose. Good days where I find just the right balance to keep us all safely centered in the middle of that tight rope. Good days where I let my son be independent. Free. Happy. Himself. Letting nothing hold him back. Not even my own fear or worry or doubt. 

And bad days. Bad days filled with regret. Bad days knowing you were way too overprotective. Days filled with questioning. With wondering. Worrying. Is it me who lacks the balance that will cause everything to fall apart? Bad days where I wonder why I couldn’t be better. A better person. A better decision maker. A better Mom. Better at creating that right balance that helps everything work perfectly. Bad days where my decision towards independence leads towards unexpected seizures. The mind of reason telling me it would have happened even if I held him back. The mind of guilt telling me it’s all my fault. I made the wrong choice. 

There is a thin, thin line when you are dealing with epilepsy. An invisible line. A line that makes every part of you want to be an overprotective, helicopter Mom. Knowing damn well that everyone will understand. Ensuring that your child is safe. Protecting him. Watching him. Treating him. Like NO ONE else can. Keeping your baby here. Breathing. Alive. 

The helicopter Mom who simultaneously wants to give your child the encouragement they need to become their own independent human being. Teaching him that he can do anything he puts his mind to. Giving him the self-confidence to know that he’ll be okay. Encouraging him to stand tall and face anything that comes his way. With courage. With strength. With the faith to assure him that nothing will hold him back unless he allows it. Certainly not a line that doesn’t even exist in the physical world.

Obstacle vs. Blessing

Some days my tight rope is a welcomed obstacle that we so proudly overcome. Suspended high in the sky. Looking down at a world so far below. Unable to imagine our fall. Other days it’s a razor blade. Keeping us fearfully focused on balance. Avoiding the cut that will tear us apart. Balancing, but applying just enough pressure to leave a nagging pain. A reminder to think and rethink and double check every decision we make. Because we don’t want to get cut. 

Call us crazy. And I certainly don’t blame you. But at the end of our days. Balanced on our tight rope. Falling to the right. Falling to the left. Feeling failure. Feeling victory. Balanced on what seems to be a razor blade of daily existence with epilepsy. Sliced by the necessary decisions that burden every parent. At the end of the day, this is all a beautiful adventure.

An adventure lead by a sweet, amazing little boy who has brought his family on a journey towards a breathtaking view. One we sit back and cherish. One that has us marvel in our luck. The luck of being a parent to a super hero. A hero named Anthony Michael. And pain, worry, wonder, regret, confidence, pride, or fear in tow. None of them. No feelings. No emotions. Nothing can take away from the pride of being the Mom to a boy I get to call mine. Even on the worst days. 

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  1. Tom Intelisano says:

    You are the best Mom that I know,, just know that,,

  2. Tom Intelisano says:

    You are the best Mom I know,, just know that!!

  3. Mom says:

    You are awesome, Sarah. So beautifully captured…. the never-ending struggle to balance.♥️😘

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  5. Chris Robinson says:

    Sarah, you are a wonderful wife, mom, daughter and sister..what I just read is that of a very sincere loving person whom I am so proud to know….The inspiration that you emit is nothing less than wonderful….Anthony is so lucky to have you for his Mommy… And I find myself thanking God that through my Mom I can call you a friend…..Hang in there Sarah and never second guess yourself….Love you, Chris Robinson (Babe’s daughter)

  6. […] I wonder whether my decision will lead to a medical emergency. The mom guilt is real when trying to protect your epilepsy warrior while simultaneously allowing them to spread their […]

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