Monday, March 18, 2013

Intuition...our sacred gift?

"The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift." - Albert Einstein
There might be some skepticism about whether Einstein actually said this but it doesn't matter in the case of my thoughts and emotions unleashed here in this blog. So whoever said this…thank you for the catalyst.
I'm not going to imagine or dare paint a picture of idealistic roses concerning our present state of decision-making about Meara's treatment.  It's been hard.  There have been moments of complete loss…the moment when you think to yourself that the anchor has been dropped and you just hope that it doesn't take the ship down with it.
I think that the reason I've had this uneasy feeling is because in our gut, in our hearts, Megan and I know (and are completely aware) that we are blessed for Meara to come out of her first surgery with such few motor deficits.  Well, we think very few deficits at all.
The doctors conferenced.  They determined that the current seizures are coming from the insula.  Meara's first surgery was a partial resection of both the insula and temporal areas.  The insula was the reason the second surgery itself was so risky (the resection surgery).  The insula is where her motor strip is and where major personality components are placed (empathy, romantic love, etc.)
The thought of having to remove more of her insula and incur these deficits is tough.  Mainly because of how well she came out of the last one.  Also, the actual surgery is risky…lots of major blood vessels to navigate through to get there.  To be fair, we haven't met with the surgeon yet and we are still in the process of determining if she is has a strong chance of seizure control from a second resection.  We have a week long hospital stay the week of Memorial Day to complete a spect scan (similar to a petscan). This test will give the doctors more specific location and address to where the seizures are coming from within the insula.
So what do we do?  What do we decide?  What path will provide Meara the best quality of life?  Who knows.  Megan and I don't.  That's for sure.  It's a best guess.  It's intuition and rationale in perfect balance.  And what is the recipe for that balance?  What is the most appropriate solution to the problem?  What will she say to us when she is 18 and looks back on the decision we made?  Will she be happy with the path we chose for her?  Or will she have wished that we had made a different decision?
She really is a beautiful, kind soul.  Ridiculously silly in nature but a friend to everyone.  She's perfect.  Now, how do we make sure she stays that way?  Is it by trying to take the seizures away (further surgery) and risk losing a part of her perfect nature?  Or is it to let the seizures be a part of who she is and hope that they don't take away a part of her perfect nature?
So, Mr. Einstein (or whoever laid this thought to pen and paper), I think that you might have a point.  I just hope that our intuition serves Meara best and that the rationale will provide peace for it.
Love to everyone.

Saturday, March 9, 2013

Medical Update on Meara

Meara's neurologist explained on Thursday that we have essentially three meds left to try. They all have undesirable and pretty serious side effects.  She also mentioned that a second surgery would likely be an option.  All of the tests that have been done so far (from our January hospital stay) have informed the doctors that the seizures are coming from the edge of the resected area.  In layman's terms:  they didn't remove as much as they needed to the first time around.  They will conference on it and let us know what they think.

Rock and a hard place. Either we try meds with nasty side effects, give the surgeon another chance to go in and remove more of the affected area of her brain in the hope that we will get actual seizure control, or let Meara live with epilepsy for the rest of her life as a result of choosing neither one.

I can't lie. This is hard.

Love to everyone.

Sunday, March 3, 2013

The Intersections of Life

My sister posted a link on my Mom's timeline tonight and it is a page called Mitchell's Journey.  Mitchell passed away on March 2nd.  He is a son, a brother, a grandson…a courageous human being.  He had Duchene muscular dystrophy.

It got me thinking about how life intersects.  On Mitchell's page are pictures of his Mom, his Dad, his younger brother by his bedside holding his hand…comforting, holding, embracing…soaking up his warmth and love.

It made me think of Christmas 2011 when we thought we'd lose Ben for sure.  There were many late nights of him having seizures and crying out that he wasn't ready to die.  He would apologize for not being stronger and for bringing the muscular dystrophy into our lives.  I remember one particular night where we were holding his hands and just crying together.  It was late…1am in the morning.  He is 28 now.  Somehow his heart has determined that it isn't quite ready to give up.

I also think to before Meara's hospital stay in August that Megan and I would have discussions in our bedroom about the what ifs of Meara's brain surgery.  What if she didn't make it.  What if she came out of the surgery without motor function.  What if she changed and wasn't her normal self.  What if…what if…what if.

I remember thinking that if I lost her I wouldn't be able to breathe.  I wouldn't be able to take five steps without losing complete control.  I remember thinking that if she didn't make it through the surgery that I'd never forgive myself.

My brother has brought both pain and healing into my life.  Pain due to the incredible amount of grief that I've been through seeing him battle his disease and the loss that I will incur when he is gone.  But healing because of the love and gratitude that I have for being blessed to have him as a brother and to be loved by him.  He is such a soldier.  A courageous soldier.  And he has given me so much.

It is harder to think about Meara's surgery after the fact.  It is harder now to think of what could have happened than when we were in that moment in the hospital by her bedside.  When she was in the ICU after the resection and we were finally allowed in to see her she was almost immediately whisked away for an emergency CT scan.  The doctor's were concerned that she wasn't responding as quickly as they would have liked.  I remember being both being out my mind worried and at the same time resolute that she was going to be okay.

The intersection of life is like witnessing beauty and mayhem all at the same time.  Without dark, there is no light.  Without death, there is no life.  

I am grateful for this day.  For this day to hug my beautiful and strong wife.  I am grateful to embrace my two daughters and wash their hair at bath time.  I am grateful for the opportunity to be a son, a brother, a father, and a husband.