Still Waiting...

Hi All,

Wow, the last post was long.  Thanks for reading.  Comparing these posts to the Olympics, some have been 10Ks and others marathons.  Perhaps I can keep this one to a 100m.  

So, I was watching a documentary on PBS this evening about a boy with sensory processing disorder.  At the end the Dad said that one thing he has learned is that his role is to support him, not to try to fix him.  Well, I think that pretty much sums it all up.  As Meara's Dad all I've wanted to do these last four years is fix the situation and take the epilepsy away from Meara.  As she sits here in bed ping ponging from sleeping, watching TV, going potty, eating a few tiny bites of food every now and then, and thankfully snuggling more I'm realizing that is true!  We are here to support Meara.  We are here to lift her up, provide her strength, and give her the unconditional love that is flooding from our hearts like a gigantic fire hose.  God, the universe, fate, destiny (I don't care what religious or spiritual reference you give it) has given us this path for reason.  We accept it and we support our beautiful daughter every step of the way.

I think that for the first time today I thought about the wheelchairs outside the rooms of the other grid surgery patients here on the floor.  And then I thought about the ridiculous amount of stairs in our house.  But you know, the one thing that I know for sure at this point is that my love and Megan's love, and Ainsley's love, and her grandparents love, and everyone's love for her is never going to to change.  That is a constant.  Everything else can shift and be difficult and challenging but her heart will still be there and so will ours.  That's it.  That's it.

Now for less emotional stuff.  She pooped last night!  That is a big deal.  BIG deal.  We are still trying to get her to eat but at least she was more awake today than she has been any other day.  We snuggled more too. That matters.  That matters a lot.

Still no seizures but the doctor said that they are picking up activity on the EEG in the areas of the brain where they have found seizures in previous visits.  Maybe its percolating and we'll see some soon.  

Grandma Janet and Pop Pop John made their daily visit with Ainsley today.  Thanks to my parents for being there for us and keeping Ainsley incredibly happy and safe.  She is sleeping through the night for them.  Figures.

Chris and Emily also came by with a beautiful card from the gang.  By gang, I mean the very talented bunch of musician friends that we surround ourselves with.  You are like family.  Thanks for the very heartfelt words and the encouragement that continues to provide us strength.  Dave, you are correct.  There is no right way.  Just the way.  Bam.  Love you for that.

I included more pictures below.  I also included a video of Pop Pop John puling Ainsley in the red radio flyer wagon.  My Dad is currently Ainsley's favorite.  If he leaves the room she unleashes the waterworks.  Both my Mom and Dad are taking such good care of her.

Well, here I go destroying any attempt to keep this post short.  Grateful, happy, blessed to have all of you in our lives.  Especially thankful for taking the time each day to check in on us and lift our sweet girl up in prayer and hope.  

Peace and Love everyone,

Aaron & Megan