Lemonade

8:35 am  Mary Clare is soundly sleeping as I type this.   She and McCanless quickly fell into summer schedules last week.  (Yes, it only took my not-so-morning girls merely days to succumb to lazy summer mornings.)  After this hospital stint, however, I’ve got myself a full fledged, self-proclaimed “almost four-year-old” night owl.  She and her Daddy stayed up well into the dark night watching movies, giggling, and hiding under stiff white hospital blankets.

After her load of Keppra yesterday…  (They wanted to get it in her system, so an “IV load” is a way to quickly achieve this.) Mary Clare had fewer Myoclonic seizures.  Yay!  It makes me breathe a bit easier and hopefully not have to watch her like a mamma hen when we return home.  As Dr. Turner said, “She still has an “off” EEG.  The Keppra doesn’t “fix” her EEG reading or Epilepsy, it merely stops some of her seizures.”  I”m hoping Keppra is the answer and it stops all of her seizures!  It still amazes me that she has been having so many seizures and many times we don’t even realize that she is having them.

Thinking back to when we learned of her HLHS.  I realize it has been an evolution.  I don’t think I will ever become “used” to her having a half heart.  I will always hope and pray that somehow, we will wake up one day and her heart will be complete, low Oxygen levels won’t linger and she’ll no longer need her daily orange pill.  I’ll be able to dream of her having her own children and living to be 100 with no further complications or procedures.  But.  I’m a realist.  I know that it will be a lifelong struggle for her.  It took me most of my pregnancy to accept this and while it isn’t what I dreamed for her, she is what I dreamed of.

If I had my choice, sure, I’d not want Epilepsy to be in her thick medical charts.  But it is.  Mary Clare has HLHS and Epilepsy.  I’m still learning to embrace it.  Like I said, it’s an evolution.  I’m hoping that in a few months, maybe years, I’ll be able to say, “Sure, she has Epilepsy and it certainly doesn’t slow her down.” Just like I’ve learned to proudly tell people that she has overcome three reconstructive heart surgeries in her three years of life and is great!  “Her heart is fabulous, just like her.”

Her EEG may be far from normal, but what is “normal” anyway?  How boring would life be if my children both behaved every minute of the day (or even half the day for that matter), or painted inside the lines or kept quiet when they should, or dressed in perfect coordination with well groomed hair?  My girls choose to sing loudly in crowds, they fight for what they want, can be outspoken and very opinionated, and they sleep in.  They dance and play, often barefoot, and love socializing and sweets.  How amazing it is to know that one day I can look back and know that it’s okay.  Life handed us HLHS and Epilepsy and all of the amazing and wonderful things right along with them and it’s okay.  Look at all of the fun we’re having.

Below, she was admiring herself in the mirror on her bed tray.

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