Mom life: I’m an Epilepsy Mom

One of the hardest things I ever have to do as a mother is being a patient parent to my son.  The minute he was born, I knew he was different.  He was born fast and furious and did not slow down.  As a baby, he was happy one minute and screaming the next.  He was intense and I couldn’t figure him out.  “He’s a boy,” people would say to me and I would nod my head and agree.

My mom came over one afternoon during one of his screaming spells and I analyzed it with her, “There’s no pattern, so it’s not colic.  Could he be gassy?  Is he reacting to a food I ate?  Maybe he’s overtired?”  The spells happened, I continued to analyze and until he started seizing I would dissect, question and misinterpret all of his behaviors to try and explain why he behaved the way he did.

And then the seizures started….

The first seizure he ever had shook me to the core and when I reflect back on that day in June of 2016, I think about how I feared he was dying in my arms. I didn’t know what was happening and he continued to prove his intensity through this seizure.  He was shaking uncontrollably, losing control of his body, turning blue and then suddenly he stopped.   He was in overdrive for minutes and then motionless the next.

A few weeks later he was diagnosed with epilepsy and it finally gave me explanation as to why he is the way he is.  It all finally made sense.   He is relentless, he is strong willed and he is two steps ahead of me with a plan and purpose of his own.  He can’t control it, his brain is wired that way and this is him. 

Understanding him at this level gave us an entirely new viewpoint to try and help him better.  The type of epilepsy he has, generalized, means that his entire brain seizes and neurons fire when he is having a seizure.  Just like he can’t control that behavior, we are learning he can’t control other behaviors that other children do.

HE NEEDS ME…

He hits the ground running, generally at 6 am or earlier, and HE NEEDS ME,  is what I have begun to think when my frustrations are mounting at 6:05 (actually let me be honest, ever since the arrival of the baby, my husband is generally with our son for that first early hour in the morning).  I truly believe my accident and resulting injuries are allowing me to be a better mom to him. I am able to relate to him at an entirely different level than I ever could because we are in the same boat.  Over stimulation, impulsivity, anxiety, forgetfulness, mood swings, difficulty concentrating and focusing- all of my struggles since being diagnosed with post concussion syndrome.

HE NEEDS ME  to help him, I think to myself every day, at the moments I need it most.  This thought centers me and brings me to a positive purpose, with a greater intention and desire to help him, rather than explode with frustration.  I am determined to make his life easier, to help him understand his big feelings and to love him, just as intensely as he lives his life.

He is destined for great things and I am so very grateful I get to be his Mom.  No one else could love him like I do and I have my TBI to thank for that.

More about our journey with epilepsy can be found here.

 



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