No matter how many times I witness a seizure, I am traumatized and terrified. EVERY SINGLE TIME. When someone you love lives with this disorder, there is an ever-present heaviness.
And it’s so much more than just the actual seizures.
Parenting a child with complex special needs and an Epilepsy diagnosis means a heart filled with unrelenting worry.
It means the presence of a constant, nagging fear…knowing that seizures, even when hidden away for a long stretch of time, still lurk quietly in the shadows.
It’s learning to live in a state of chronic, traumatic stress.
It’s managing to keep every aspect of life as meticulously regimented and routine as possible.
It means tapping into a strength for your child that you never thought you’d possess. It’s never giving up and never backing down.
It’s being afraid to drive away from my daughter’s school, with a paralyzing anxiety of being out of her reach.
It’s feeling my heart drop into my stomach when her school calls in the middle of the day. Then, it’s driving at ridiculous speeds to get to her side, and the need to comfort her. The powerful, unstoppable need to hold her and tell her she’s going to be ok.
It’s not knowing when a perfectly normal day will turn into an ambulance ride to the ER. Not knowing when her happiness will be unexpectedly thwarted, in an instant.
It’s the heartbreak of watching seizure freedom being snatched away from her, as she again suffers the aftermath that the frightening event leaves in its wake.
It’s the recovery period that keeps her heartrate high and her breathing shallow.
It’s the medication increases that bring agitation and days of recovery from drowsiness.
After the dust settles and normalcy has finally been restored…it’s the setbacks.
My daughter has regressed in areas and lost valuable skills after having seizures. Each time, I feel defeated and heartbroken; grieving the abilities that disappear before my eyes. Skills that she worked so hard to attain seem to vanish, bringing us back to square one.
I’ve watched chewing fade away. I’ve witnessed severe anxiety return in social situations and when outdoors. Months and months of OT aimed at promoting self-calming skills have been washed away in minutes. Weeks of potty training and its long-awaited success have come to an immediate, crashing halt.
It’s easy to give into the heartache and frustration these setbacks bring. It’s easy to be sad and to get bogged down in things that are taken away. When this happens, I remind myself who my daughter is and all that she is capable of.
She is courageous in every facet of her life. She consistently pushes through. She overcomes. She gives me the determination to try again. Her tenacity reminds me that she has mastered impossible feats before.
With love and lots of time, she can master them again.
Our most recent setback was with potty training. That familiar fear crept in as all progress seemed lost. Had the skillset and understanding that she worked so hard to attain been erased? Potty training has been a monumental win for her and a life-changer for her health. It once seemed an impossible feat; it had finally become a reality. Thankfully, and to my great surprise, this newfound life skill and ability shortly returned.
Seizures did not win. Setbacks did not win.
We can never let them win.
We’ll fight back against them, time and again. We’ll keep a watchful eye out for their unwelcome return and try with all our might to keep them at bay. We’ll do everything in our power to always rise above the seizures and setbacks.