1 year, but really 5.5

Today marks one year since Amalea had her first seizure.  I call that night the worst night of my life (I posted about it here) and one year later I still consider that to be true. Even though she has had 2 more seizures that first one – one year ago today – will forever be etched in my memory.  I was reading my post about it and realized how I still remember every little detail from that night. My dad standing in the kitchen holding Maya, my mom standing in the street waiting for help, Jim cradling Amalea as she seized, me clutching the phone frantically talking to the 911 operator hoping that my water would not break.  All of us worried and panicked and so so scared.

Every time I see an ambulance with it’s lights on, my stomach drops.  I know that feeling of waiting for help to arrive.  I’ve waited 3 times.

Today is not a one year anniversary I am particularly happy to “celebrate” and yet it is a day that is significant for our family.  We still have so many questions and there may not ever be answers (I heard that 70% of the time you never know what causes seizures).  The thing is, this fear about Amalea’s health did not start just one year ago.  Her journey and special health needs actually started when she was just 2 weeks old.

When Amalea was just 2 weeks old her pediatrician found that a light did not reflect when shined in her eye as it should. They sent us the next day to the hospital for a CT scan as it was possible that she had a brain tumor.  I will forever remember that 30 minute drive on a Saturday morning (my 26th birthday – October 20) to the hospital as I sat next to my beautiful 2 week old baby.  I was so scared and confused.  My body was still a wreck from her traumatic birth and now there was a possibility that she had a tumor. Luckily, the scan was clear.  Further testing showed that she had a retinal hemorrhage and that hemorrhage was removed through surgery when she was 6 weeks old.  I will forever remember sitting in her hospital room as they wheeled my 6 week baby away to put her under full anesthesia.  Then we sat and waited – waited for her to return, waited to hear how it went, waited to hold our precious baby girl.

I share all of that to say that Amalea has had quite a journey in her 5.5 years of life.  There are scary moments that I will forever remember, but they are all moments that we have come through.  That she has come through.  She is resilient and truly if you didn’t know this part of her story you may never know she has seizures or that she is blind in her left eye.  I am so thankful for that.  I am thankful that she won’t remember a lot of the scary parts of her journey.  They are more of a burden for Jim and I to bare at this point. And that is ok. She doesn’t need to deal with all these scary realities yet – she just needs to play and be free and fall more in love with life.  That is her job for now.  It is our job to research medicine and treatments and determine what is best for her.  We are her parents and we will do everything we can for our sweet Amalea.

May 18th, 2013 by Robin Leave a reply »

1 comment

  1. myr says:

    this is beautifully written. it made me cry. and you’re right, if you don’t know, there’s really no way to know. she’s as vibrant and vivacious (at least) as any other 5.5 year old i know!

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