Saturday, February 16, 2013

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...

Saturday, February 2, 2013

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)