First, thanks so much for the positive and loving response. We feel enveloped by your prayers. They are making a difference already.
Second, I realized that I didn't include the actual surgery times, etc. Here is a rundown of what is happening when:
Tuesday, July 31 - CT Scan at 1:00pm and Neurology appointment at 3:00pm. Then headed back home.
Wednesday, August 1 - Arrive at Children's Hospital Denver at 6:00am and surgery will begin at 8:00am. The surgery will last 6-7 hours. They will be opening up her brain to lay down electrodes. When they sew her back up the electrode wires will be hooked up to the EEG. After the surgery she will likely sleep throughout the remaining afternoon/evening and through the night. She will be in the ICU that night and then moved to the epilepsy unit after that.
During the course of the week the doctors will capture seizure activity and then conference to determine how much of her brain they will remove. The second surgery is tentatively scheduled for August 8. It could be delayed if they need to capture more activity. No matter what, they won't allow her to go longer than two weeks with the electrodes in. The second surgery will also last about 7 hours.
After the second surgery we will know the extent of our hospital stay for recovery. The amount of rehabilitation will dictate how long we need to stay.
We probably won't post again until Wednesday (surgery day) but wanted to say once again how grateful we are for your thoughts and prayers.
Aaron & Megan
Sunday, July 29, 2012
The purpose of this blog is to accomplish a few things. One of them is to keep our friends and family informed on a daily basis about Meara's journey and eventually her recovery. Another purpose is to allow Megan and I the opportunity to share what is on our mind and what our hearts intend to unload on us (whether we are prepared for it or not). Hopefully, it will serve as an avenue of communication, reflection, and strength throughout this journey that we have put our little shining star upon.
For those of you who know Meara, you are aware that she has a beautiful, wild soul. She showers it with love and attention. She has this way of letting go of things and as a result she has this wonderful generosity and openness about her. She loves her friends and everyone is in that category, even the new friend met at the park. Megan and I have learned that this is her lesson to us. Her journey, her purpose in life, her ultimate gift to our family is the unveiling of life unfolding in the moment.
For me, finding the gift in my brother's terminal disease was hard to do but eventually I was able to recognize the profound impact in had on shaping who I am as a person, husband, father, son, teacher, and friend. But Meara's journey through epilepsy has given Megan and I an additional gift. It has given us the understanding that she is teaching us a profound truth about living life. She is teaching us to let go so we can be wonderfully generous and open. She is teaching us not to stress about mounting medical bills or how we aren't saving for her college education. Her lesson to us as parents is to love and let go. To be aware of the amazing life worth living that surrounds us. To embrace kindness, empathy, compassion, and connection in this exact moment. To notice the simple pleasures like snuggling during a disney movie and exploring the shores of a mountain lake. She is teaching us to find happiness wherever we are, whatever state of living that we are in. Everyone knows that it isn't easy to accomplish this but it just might be worth trying to arrive in that place, at least if momentarily to remind us how simple happiness can be.
Our daughter is a gift. I'm pretty confident to declare that every parent shares this sentiment about their children. Whatever happens after surgery and whatever the physical and emotional challenges that we may face as a family as a result…we will be better off for it. So this is for you Meara, our shining light, the one who has taught us about how to really live life. You are only four years in your physical body and you have so much more to teach us. We love you forever and always. Mom, Dad, and Ainsley love you and are right here by your side. We are walking this journey together and our strength is mighty in numbers. You are the "a ghra mo chroi".