I saw a quote on Facebook one sleepless night that summed up my current life situation pretty perfectly.
It’s my soul that’s tired. I sit and wonder why I’ve been circling the house for three weeks now. No success in overcoming this feeling of sheer burn out. Depressed. Numb. It should have been obvious to me that it’s because my soul is tired.
I hate to even say this because I love my medically complex child more than any other thing on this earth. But, sometimes it’s SO hard being this mom. It makes it easier to say knowing in my heart that it’s my intense love for my son that makes it so hard.
Lately, I’m just not that great at navigating it all.
It frustrates me.
I’m usually so on point when it comes to juggling this life. I guess that’s where the tired soul comes in. I’ve been juggling this life for four and a half years now, and my soul’s just SO tired.
I have no doubt that I will miraculously rally at some point. Hell, I may even start tomorrow completely transformed. But, right now…at this moment…I feel that I’m burdened. And it sucks.
I’ve said this before, the nights are hard. Tonight is one of those nights. Having been fully immersed in the epilepsy awareness community, I know too well the statistics that surround this terrible disease. The statistics lead me to the miserable land of what if’s night after night.
While you may wonder why I’ve tortured myself with facts, it’s the knowledge I’ve gained through epilepsy awareness, despite knowing these devastating statistics, that has gotten us this far.
So, I continue to educate myself on epilepsy, not knowing if I’m doing us more harm than good. But, that’s the struggle in this journey. The constant unknowns.
I can’t erase the moments that haunt me. As time goes on, there are parts of our past that only seem to haunt me more. As each day comes to an end, I find that I only love my son more. As I love him more, I’m so obsessed with trying to make sure he’s safe. Yet, it’s that safety obsession that leaves me burdened.
The stories, the facts, the studies, the families, the victims, they all haunt me. Our own struggles. They haunt me. Yet I know how important it is to raise epilepsy awareness, so we can have a future. And that pretty much sums up today’s definition of epilepsy for this epilepsy mom.
Epilepsy- (n) a life consumed by fear-inflicting what if’s that haunt you daily.
The current status of our existence seems to be that the what if’s are lingering around every corner. They cloud my mind. They creep up just when it seems we can let our guard down. They are slowly sucking every ounce of sanity from me as I desperately try to make my way in a world where I’m obsessed with doing everything I can to make sure my son doesn’t become a statistic.
Day by day.
Moment by moment.
Will MY epilepsy warrior become a statistic? What am I going to do to make sure he doesn’t? What can I do to guarantee that? The burden becomes heavier as insomnia gets worse. It seems you can only get so far in your day when you’re fueled by caffeine and a fading glimpse of hope. You can’t really go far on a big old tank of empty!
I’m certain it’s the lack of sleep, the loss of faith, and the lack of security that lead me to this feeling I have right now. Somewhere on the journey to tomorrow, my empty tank of gas caused me to lose my drive today.
Maybe that’s what frustrates me even more.
I recently read an article from another mom whose child fights epilepsy. Another mom doing her best to keep her kid safe and raise epilepsy awareness for others. When talking about how she does it, she said she surrenders her child to God every night. She trusts that if she closes her eyes at the end of the night to get her own rest, God will keep her child safe. She believes that the new day will come, and her child will wake once more because God has held her child in the palm of His hands-keeping her child safe until the sun rises.
All the power in the world to this faithful mama, but I just can’t seem to gather up that same strength in my faith. I can’t seem to find the same strength to trust Anthony’s safety in the hands of a protector I can’t see. At least not today.
I have grown up my entire life in a faith-filled home. But, I have struggled on a roller coaster of faith that dips between certainty and uncertainty when it comes to the question of God’s existence.
My biggest question? If there were a God, why would He make my son suffer so much? The flip side of it? I’m grateful for that same God-crediting him and our surgeons for leading us from a 50% chance of life or death to this journey of survivorship.
Judge me ALL you want, but the God I’ve been taught about since I was a child is the one who gives us the freedom to question our faith at times. I think I’ve earned that freedom in these moments.
Right now, I find that I’m stuck in the dip of our rollercoaster of life. Not quite at the end of the ride, not at the peak of the lift hill, not catapulting through a loop at full speed. I’m just kind of teetering in the middle of that ride. Stuck. Knowing that there are sure to be some thrill-inflicting twists and turns ahead. Understanding that they’ll be different than that initial thousand-foot drop I was not expecting at the beginning.
I’m craving the feeling of security that riders get when the harness unhooks and they hop out of the roller coaster car unscathed, excited to share the story of the crazy ride they just survived. I’m grateful for the moments that have given me a second to catch my breath as we transcend another hill, allowing me to pause and reflect on the blessings we’ve been awarded in the midst of this chaos.
I am FOREVER worried that my safety straps will come unbuckled somewhere along the tracks, bringing us to the moment where our luck simply runs out.
I’m burdened by the loss of hope I once had. I troubled by doubt. I’m exhausted by fear.
Epilepsy is slowly robbing me of who I once was. It’s stealing away that and every ounce of my sanity. That’s the struggle with this disease. It’s overwhelming. It’s unpredictable. It’s life-threatening. It’s chronic.
I’m not expecting any of this will change any time soon. Although I’m driven to find new advances, to test new safety methods, to find a solution, I’m not sure I will ever have the peace of mind I so desire.
So, for now, we continue to put one foot in front of the other.
Raising epilepsy awareness where we can and when we can along the way.
Knowing that the light at the end of my tunnel will always be the boy behind it all. The warrior who makes every struggle worth it…no matter how hard that struggle may be.
I’ve never doubted that my son will give me the strength to fight on.
Lucky for me…
…my soul’s never been tired enough to doubt that either.