Wolf!

Our phones are never far from us.  They are never on silent if Reagan isn’t with us.  Even when Reagan is at daycare or with a relative, we are on call.  There is always that call that she is having a large cluster of seizures and is not doing well.  That she is stumbling around and not acting like herself.  That she is sad and withdrawn and cannot be comforted.  Those calls come more often than we ever imagined.  Even though this is not the norm for her on a day to day basis, occasionally, she does have the bad day, and we get the call.  Every other day, she is a normal 2.5 year old.  Running and playing with her friends at school, testing her boundaries, asking why about everything, and just enjoying life.

With Reagan down the street from my office, I am the primary parent on call while she is at daycare.  We work on switching off who leaves work early to pick her up, or who stays home with her, but it is my number that they call.  And those calls have been coming more and more frequently with the changes in her seizures.

She originally would have a seizure every few hours, spread out throughout the day.  Recently, she has started having cluster seizures.  She will have 5 or more seizures within an hour.  This new pattern of seizures has not been easy; we are all still getting used to it.  We still panic and tense up, closely watching the clock, documenting and counting her seizures, anticipating the next one, while hoping she won’t have another one.  It is frightening and hard to watch when she is in the grips of a cluster.  They bother her; they make her tired, and she is always slightly disoriented when she comes out of them.  It can ruin a day, an afternoon,  a fun family outing.

Every time we get a panicked call from daycare or a relative babysitting, we come running.  There is nothing else we can do.  Every call could be the call that could send us to the emergency room with her.  Every call could be the call when her beast or her Epilepsy has really taken a turn for the worse.  Even with all of the panic and stress each one of those calls brings us, we would rather have everyone cry wolf a thousand times, then dismiss that one call that needs the most attention.  We will always run when they cry wolf.

Waiting in Dad’s car at school for me to get out of a meeting and bring the car seat.  She had a cluster of 5 seizures within 55 minutes when he picked her up.  Then getting to relax at home with Otto cuddles.