Hospital Stay

Last time I wrote (concerning medical treatment) we had a January stay to follow up on Meara's seizure return. They determined from the EEG that the seizures are coming from the insula area. 

Today we checked in for a five day stay to have spect scans and EEG. The spect scans will include an injection of radioactive dye at the onset of a seizure and then she will be wheeled down for the scan. These scans will determine a "address" within the insula.

Then, once the the doctors have conferenced and determined whether she is a surgery candidate once again, Megan and I take a long hard look (along with a massive amount prayer and reflection) to determine if we feel it is in Meara's best interest to go in and remove more (and incur more deficits) or if we should let her continue to live with the seizures. 

No decisions to be made this week. Just information gathering. She's a trooper. She's excited to be in the hospital and be pampered. 

Love to all! Courage and peace in abundance...

Aaron & Megan

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.

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.

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.

Keeping it simple...

Love is a navigational tool.  Love is the driving force, the guiding light if you will.  There have been moments in my life when I have felt like the walls would just give in at any time for a myriad of reasons.  I don't feel that way anymore.

In the middle of dinner tonight as the four of us sat I just lost it.  I started weeping because it hit me in the gut that this beautiful miracle has endured more in her four years than many of us (me included) have endured in our lifetime.  She is a walking miracle full of hope and strength.

I am so grateful for her bringing this meaning into our lives.  I can't tell you how much of my life I have spent worrying.  Worrying about things that seem to matter in the world of material possession, professional and personal achievement, and expectations set by human standards.

You know what matters to me now?  That my daughter loves the tire swing at school and that when I see her on it she is living life that is rife with meaning and cannot be quantified.  It cannot be scored or rated on an index of happiness.  No, it is just what it is.  It is living.  It is breathing in the fact that in this very moment the only thing that matters is that I have a heart at full capacity for love.  That if I died tomorrow I would know that i lived my last day in constant presence of beautiful things that bring unbridled meaning to my life.

My expectation is not to have mind blowing experiences every day of my life.  In fact, I want to live if possible with very little expectation.  Only living in the moment.  Breathing in gratitude and awareness for just the ability to be and love.

She is a shining star.  Meara guides us to that place of realization and depth where on the ground level everything becomes clear and simple. So much of my life has been spent on the search for complexity, success, approval, and acceptance. The hope being that there is a correlation between these things and ultimate happiness, fulfillment, and peace. I can't possibly waste any more of my precious time on that. It's about the tire swing. It's about being grateful for the bike ride home from work. It's about laughing hysterically at our "talking armpits". It's about watching Ainsley doing her own version of breakdancing to the ending credits of a movie. Meara has a scar from her ear to the back of her head to the top of her forehead. I see it every day. I look at my beautiful daughter with her beautiful scar and I feel my knees buckle from the gratitude I have for her and her journey. It is a constant reminder of what is truly important. It is a reminder to keep life simple. No amount of complexity will help me live my life with absolute meaning and absence of regret. Only the simplicity of living in the moment.

This is the plan. I'm absolutely convinced. I am convinced that what we have learned as a family and individually throughout our daughter's journey with epilepsy has been a necessary and defining ingredient in helping us realize true meaning in our lives.

When I die I want my children to remember me for how I loved, not for my personal or professional accomplishments. I just want them to be convinced that in every waking moment of their lives that I loved them without limit and that I was present in our moments together.

Life is full of distraction and it is impossible to live harmoniously every second of the day. But I do have this small and mighty navigational tool in my life and her journey with epilepsy is a constant compass that I can always come back to when I veer off course.

Love can carry us far, like winds that carry our whispers. It can only reveal to us when we are trying, really trying, to listen. I'm listening.

I love you Megan. I love you Meara. I love you Ainsley. My compass...

EMU Stay: A walk in the park?

It's hard to imagine a 24 hour video EEG as being a walk in the park, but after watching Meara undergo two brain surgeries, a brain infection, and spending the entire month of August in the hospital, one night was a piece of cake.  Is it odd that when we arrived on the floor it felt like a second home? The walls are all too familiar. The pull out "bed" is still uncomfortable. The view is the same. Thinking back to our first EMU admission in October 2008 when Meara was only three months old, everything was new and unfamiliar and unsettling. This time we knew what was going to happen and had some familiar faces along the way. The nurses and EEG techs are so wonderful. Several of them remember Meara and were happy to see her, although not under these circumstances. Meara is so amazing. What kid loves to go to the hospital? Meara was excited to go spend the night in the hospital. She enjoys the bed, food and special attention. Luckily she didn't have to worry about any pain this time around. In the less than 24 hours we were there she got a little backpack with a bear and other goodies, made valentines for her classmates, as well as a surprise visit from Colorado Rockies Outfielder Erik Young Jr. Meara happily walked out of the hospital, excited to go pick up Ainsley and head home. Thank you to the Brittenhams and the Shorts for taking such good care of Ainsley so we could focus on Meara. I don't even think she missed us, although we did miss her. For now, we continue on with a higher level of medicine to see if it will help stop Meara's seizures. For now, we continue to watch Meara love, laugh and live. We are so lucky to be her parents.

(Note: Just to prove I'm not a blog hog - Megan wrote this one)

The Journey Continues...

This Thursday we admit Meara to Children's once again.  For some time we've suspected that she's been having seizure activity. When they first reappeared back in November we just couldn't talk about it. Now, we are starting over essentially and realizing that we aren't done learning and Meara isn't done teaching us. Thursday she has an overnight EEG and video monitoring to hopefully capture seizure activity and guide the doctors to decide what we can do from here. Meara is thriving. As usual she lives in the moment and exudes a free spirit that baffles us every day. In a world where nothing is promised it takes strong courage to stay focused on what really matters. I can say with every ounce of my being that I've been struggling to find the meaning in this journey with my beautiful, I mean extraordinarily beautiful,  daughter. Although I can honestly say that I've felt defeated and that I've failed her as a Dad...I've never stopped believing in her courage and her ability to grow that enormous heart even bigger through every difficult turn in her few short four years. She's bigger than epilepsy and she's not a victim. She's a child who's soul has taught Megan and I more about living than any person or experience in our lives. There is no timeline to this journey. It's not easy but the clarity is enormous. Prayers and positive vibes are always appreciated. Nothing like brain surgery this time around. Only the realization that we start over with where to go with treatment again. Love to all.

(Photo by Laurel Riffey)