Thursday, May 1, 2014

Fast MRI

Megan took Meara (along with the girls) down to Children's today for a fast MRI so neurosurgery could get a new baseline post-surgery.  Everything is looking good.  The neurosurgeon said after reviewing the images that her ventricle is small meaning that it was the right decision to install the shunt.  The shunt has been working and is keeping the CSF from building up.  Thank you to Chris Short for meeting Megan at the hospital to help keep an eye on the kids.  You are an angel.  I should also mention that I have the strongest wife on the planet.  Can't believe MacKenna is six days old and she lugged three kids down to the hospital today without me.  She's downright amazing and a heroic mother to our children.

In case we haven't shared we should let everyone know that Meara's seizures are back.  She's been having them at night and while napping.  We believe they aren't as intense as they were before, meaning that she doesn't stop breathing like she did pre-surgery and they aren't as long.  The neurologist wants to do a 2-3 day EEG hospital stay to get more information.  We will try to get it scheduled before our insurance calendar year is up (June 30).  If you are the praying type, pray that we get this stay in before that date.  It's the difference of having to meet the next year's out of pocket maximum amount or it being covered entirely because we've met our out of pocket for this year already.

One thing is for sure, we will not be pursuing a third resective surgery.  Meara's current quality of life is high and we will continue to support Meara by making medical decisions that preserve this.  We don't regret the decisions we've made because we believe that we weighed the risks and benefits and we've done our best.

I have a coworker who turned me on to a daily email blog a few years ago called Tiny Buddha.  It touts simple wisdom for complex lives.  The blog today was titled "How to Stop Feeling Inadequate and Embrace Your Imperfect Self."

The author points out her realization that "the stacks of certificates and awards collecting dust inside a drawer in my perfectly clean house weren't doing much for me…they were only temporary fixes to fill the voids of my spirit as I desperately avoided being completely honest with myself and opening up to my truth and vulnerability." 

I think of this every single day as I pursue excellence in teaching, as we send Meara off to school.  I think of my students who are growing up in a society that places so much importance on specific content and job skills that are deemed essential and mandatory for the success of our capitalistic, profit driven economy.  I think of the emptiness that they must feel as they reconcile who they want to be versus what they have to do in life.

So we have established that nobody is perfect, right?  Seriously, nobody is perfect!  So if we can let go of this self-inflicted pain due to our insane need to find approval from our achievements and what the world thinks we should be and just…well, just love each other.  Just live our lives so that we recognize and value relationships more than money, fame, success, accolades.  If we can just recognize that joy is found in our own soul.  The author, Dawn Gluskin, today in her blog writes "…if you are not living your own truth and doing things that are in alignment with your own soul's calling, then you will always be left feeling unfulfilled and always grasping for that outside validation."

Here is a proposal.  Let's raise Meara, Ainsley, MacKenna, and all of our precious children that we love and adore and just want the best for…let's raise them in a society that values this acknowledgement of the soul's truth.  Let's give our children, our future generation and caretakers of this earth, the green light to follow their heart and find validation within themselves instead of these neurotic and insane principles that have nothing to do with a more compassionate and loving society, only a society hell bent on improving the GDP.

Time to stand up.  Time to take back our community, our cities, or states, our nation, our world.  Time to tell whoever is in charge that the right decisions aren't made for money.  The right decisions are made in order to help people and provide unrestricted opportunities where kids can grow up with the freedom to make a difference in the world.  A difference that will inject joy and happiness.  Because guess what?  Money might provide convenience…its sure as heck doesn't buy happiness.

1 comment:

  1. Aaron, though we don't know each other (your mother is a dear friend) I've been following you and your family's journey for several years now. What you wrote above is so beautiful. It is beautiful because it is the truth....not sugarcoated musings. If I may, could I add or expand the thought: "THe right decisions are made....because they're right." I look at how the world shifts when great people do not budge on this point: Gandhi, Mandela, Mother Theresa (+ many more) but most recently MALALA who , when a gun was pointed to her head told her assailant: Before you shoot me, know that I support education for your mother, sisters, daughters,too. Without an education, there is no freedom..(not a direct quote but close)....and then the Taliban shot her but she survived.....with seizures, physical disabilities but ready to do battle against the lies told by the Taliban...and she's just now~ 16 yrs. old.. You , your family, Meara are also my heros......keep on your path and you will make good choices. I thank you for taking time to share your heart and soul. You certainly have touched mine.

    Love to all the Edringtons,
    trish b.