Thursday, October 24, 2013

Exhaustion and Fleeting Thoughts

This is strictly Aaron speaking...pretty sure Megan doesn't want me to post this but I'm having a hard time faking it lately.

I'm just so tired of pretending that everything is okay.  I'm tired of always trying to find the meaning in all of this.

Can I say that sometimes there are things that just suck.  Is that a crime?

I'm tired.  I'm tired of the medical bills that arrive in the mail that we just can't pay and then fall deeper into debt over. 

I'm tired of not sleeping through the night because Meara needs us or if she happens not to come into our bedroom that it's because my worst nightmare has come true. 

I'm tired of having to make medical decisions that an average parent with average kids with no major medical issues don't have to make.

I'm tired of waking up every single day having to accept the fact that I won't hear my little brother's voice again.

I'm tired of giving my all to a profession every day that is absolutely completely obsessed with the most useless time consuming worthless devices for "reforming" or "fixing" the education system.  Let me spell it out for those in charge of bringing all of this uselessness to us: GIVE US THE TIME TO KNOW OUR STUDENTS.  It isn't rocket science.  If I have meaningful, let me say that again, meaningful (!) time with my students I will teach them effectively.  Teaching the individual child means having the time to learn who they are and for them to learn who you are.  You'd be surprised what can happen in learning when the environment is set up to be meaningful.  You don't fix the "achievement gap" by ignoring the human essence of the child.  They are humans.  Not a case study or a carbon copy of some ideal high achieving pretend student that everyone thinks will be the saving grace to our greedy capitalistic economy driven society.  Let teachers teach.  Let them spend time with their students in meaningful work that they (the teachers) decide will work for their students.  And for goodness sake, can we please stop using "achievement" as a marker for success?  I'm nationally board certified.  Do you think I feel like a complete success right now in life?  If you are reading this post then you know the answer to that question.

I'm tired.  I'm sure after a good night's rest I'll post something more inspirational or positive.  But even a good night's rest won't take all of this stuff away…

I'm not the inspiration or strong man that everyone makes me out to be.  I'm just someone who's trying to not fail every single day. 

I know it could be worse. 

Saturday, October 12, 2013

Tides, depths, and navigating these seas...

I imagine (and hope) that there will be day when I can explain to Meara that I am sorry for the mistakes I've made as parent.  For all the times I've gotten frustrated with her for not paying attention or for not listening.  There is that deep divide.  The one that spells out the fact that she isn't sleeping at night and therefore has a tired brain during the day.  The fact that the medications she is on are designed to slow her brain down.  Then there is me…perfectly imperfect me.  The dad who loses it and makes demands of my daughter that should normally be made…"you need to be a better listener", "You need to be better behaved in the store"…you know, all of the things that we try to do in order to avoid looking like inept parents out in public.

I imagine (and hope) that there will be a day when I can sit down with Meara and apologize.  Apologize for all of the times that I let her down.  Apologize for all the times that I forgot that she has been through more than any child really deserves and that she continues on a daily basis to defy the odds.  That she is a warrior princess who has built this beautiful life from what seems to be sometimes…falling embers and scattered debris.  

She is our warrior princess.  I hope that there will be a day when I can sit with her across the table sharing coffee and explain to her that I love her more than words will ever be able to capture.  And that I'm sorry for all of the times that I got it wrong.  And to acknowledge the difficulty in this journey for all us.

She is our warrior princess…

Tuesday, October 8, 2013

Simple shades of things...and the complexity of it all.

Meara's been having quite a few seizures during awake hours now.  We might have shared that, can't remember honestly.  She is aware when they are coming and will typically bury her head into Megan's chest when she's having one.  She's having them in the car, in her chair at dinner time, and playing with Ainsley down in the family room.  

She's also been having so many during her sleep lately that she's been coming into our bedroom around 12:30am or so to sleep with us.  This has been going on for about a month or month and a half now…hard to keep track after awhile.  She's had five since I put her to sleep tonight which was an hour ago.

After Meara had one in the car with Megan last week she told her that she really wants to go the hospital to have her seizures taken away.  So, if that isn't affirmation that we are making the right decision for her…when then…not sure what is.

So, we are tired.  Been a busy cycle with her lately.  Seems like the seizures are taking over a bit.  We are almost a month away from her resection and it seems as though everything is telling us that we need to do this surgery. 

She's still got a lifetime ahead of her.  She's beautiful.  And challenging.  And lovely.  She draws every morning before school.  She's riding her bike without training wheels like a bat out of hell.  Our neighbor Matt always remarks how she rides her bike without any restraint.  Like she's got nothing to be afraid of.  Normally I'd be worried about the lack of restraint but then...

That's what I imagine for her…that she has nothing to be afraid of.  She's so energetic…and complex…and yet so simply…amazing at living in the moment.  I hope that her wonder, discovery, and difficulty in life is something that she'll hold onto.  That she'll live in a world full of imagination and magical territory.  I hope that she'll always dream and keep her sense of surprise and novelty close to her. I hope that her journey through epilepsy will be something that she doesn't see as a stigma but rather something that has given her a wisdom and understanding that will bring her shining stars against a dark night sky.  It might take her a lifetime to unpack…but she'll be stronger.  That is what I believe.