Sunday, November 17, 2013

Going Home...

Dear All,

Yup, we are going home. We are cleared with all of the doctors and we are packing our bags.  We are excited to get home and start getting back to a normal routine.  Meara's incision will take time to heal but it isn't anything we need to be in the hospital for.  She is now off of the heavy meds so we can give the over the counter stuff at home.  Meara is still having seizures but we'll wait and see what happens.  Megan and I refuse to give up hope that we will get seizure control.

As we leave the hospital after a second brain surgery (third, technically) we are parting ways with medical staff that are out for the same result that we are:  a thriving, happy Meara who has a great quality of life.  And some things that Megan and I have learned along the way...

To be vulnerable is a scary and rewarding thing. Like the warm sun on your neck when you didn't realize just how cold you felt. This journey is bit like that...taking the time and risk of being honest and vulnerable. Allowing that "warm sun" to comfort and ease the burden.

Epilepsy, like any disorder, disease, medical condition...especially concerning your own child is tricky...and frustrating on so many levels. Not having a definite cure. Not having a treatment that provides 100% chance at the outcome you'd like. You second guess yourselves as parents so many times.

And then you restore yourself to the faith that it will work out. That Meara, your child, will live happy and fulfilled...independently of outcomes and roads taken. You believe, without reserve, that your child is the ultimate gift in a world filled with so much uncertainty. You get up and charge forward with unlimited love and embrace...never allowing yourself to miss the opportunity for living this life in the moment knowing it's not how long or how much you get out of this life. It's about what you do while you are in it. It's how you love and are present in every moment.

This is what it is...a journey. No destination in sight...that's okay.

Perhaps another update when we are home and settled...along with some more pictures of Meara post surgery to show you how well she's doing.

Love, peace, and gratitude,
Aaron & Megan

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