Hair Wraps

Over the past few years, getting a hair wrap has become a big part of our Ocean City beach trip for Ava. It's a simple thing, which has become a summer tradition. She loves picking colors and showing friends her summer style.

It's funny what something as simple as a hair wrap can do to me now--it's a sort of emotional unraveling, full of reminders and continued gratitude.

Ava spent last August in Children's Hospital in Pittsburgh. It was sudden, unexpected, loop-throwing, reality-changing whirlwind--deep breaths and prayer material. Among my most vivid memories of that month, are those of Ava making sure that the doctors, nurses, technicians, etc., didn't mess up her hair wrap. There were times when she wasn't aware of much that was going on around her, but you better not mess with her hair wrap. Other than their having to cut off metal at the end of it so she could get MRIs, the hair wrap survived the hospital.

As her sister Anna and I sat along the Boardwalk while Ava beamed getting her new "do," my mind bounced back and forth from last year to now. It's been a great year--after missing the beginning of the school year in the hospital, she was named MVP of her field hockey team in the fall (she wasn't expected to be able to play most of the season), earned honor roll every semester at school and Principal's Honor Roll for half of them, and finished her lacrosse season this spring with a two-goal game.

It's also been a trying year as a parent. Ava still has occasional seizures, as well as more frequent "spells," where she shakes and has trouble focusing or being able to respond to what's going on around her. Despite tears and protests, she had to stay out of the ocean and the sun for a day during the beach trip this past week, because she couldn't shake a series of spells that recurred throughout the day. We don't have it all figured out, and have just switched her neurology care to a new hospital after being thoroughly unimpressed with her last one. It's a process and lessons in seizure management.

When you look at the pictures above, it's hard to notice a difference in the two years. You can't tell what her eyes have seen or what she's been through. And that speaks to Ava. It's her personality; she rolls with the punches and looks to what's next--facing forward, not backward. She has taught me more than I can put into words.

I've tried to learn a lot of letting go over the past year. I've seen and felt the power of prayer and community. I'm trying to learn to hand over to God those things that are beyond my control (which is pretty much everything big). I am grateful for both Ava and Anna and the people they are becoming, and the blessings they bring to my life every day (or at least most days ;).

Our attitude towards what we find in life can color everything we encounter. I like this thought that the internet gives to Albert Einstein:

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

This morning I am thankful for sunrises--new days, new weeks, months, and years, and enjoying them all. And I am thankful for hair wraps. And Ava showing off this year's colors.

Community and KRS-One

Sometimes it happens that your world gets upside-downed. On Aug. 6, at about 9pm, I got a call from Anna and Ava's mom as she was riding in an ambulance. She and the girls were visiting her family in Butler, Pa. As they arrived, Ava had a seizure. She has had small seizures, or something akin to them (syncope), but this was different. She wasn't coming around. They inserted a breathing tube and were going to helicopter her to Children's Hospital in Pittsburgh. I threw clothes in a bag and started driving. That was two weeks ago tonight.

Since then Ava has seen her share of the Pediatric Intensive Care Unit, neurologists, infectious disease doctors, nurses, technicians, you name it. I didn't start writing this as a medical update, family and friends have been getting those on Facebook, but the Cliff's Notes version: Ava has Epstein-Barre Virus (EBV) encephalitis (swelling of the brain), which caused her seizure and subsequent seizures while in the hospital. It could be the effects of EBV alone, or it could be EBV on top of a chronic condition for seizures. After getting doses of Keppra and phenobarbital (anti-convulsive meds) dialed in, and allowing time for her body to deal with EBV and the brain swelling, Ava has been making solid progress and yesterday was moved to Children's Home, the rehab arm of Children's, to focus on physical therapy, occupational therapy, and rebuilding her speech and cognitive skills. It is sobering to see what a trip of the brain can cause, but incredibly encouraging to see Ava coming back into her own. It just takes time.

I am writing this morning for the things that have happened while we've been here. The things that make "community" even more of a favorite word for me than it has ever been. I made a couple phone calls and sent a few texts to family, work, close friends to let them know what happened and that I was going to Pittsburgh. The response from work, the Oxford Community Center (OCC), was go, be with Ava and my family, get her better, then worry about work. More on that in a minute.

As word of what happened started to spread, there were concerned calls, texts, e-mails, so I took to Facebook as a blanket means of keeping people updated. What I sometimes forget, and don't think I was really thinking about, is the real people behind the profile pics and status updates. And I wasn't prepared for, or expecting, the way people would respond, reach out, follow along, pray, and cheer for Ava. I have been emotionally overwhelmed and buoyed in amazing ways.

In July, the girls and I moved into a new house in my hometown of Oxford, Md. We've been busy and hadn't been able to finish moving furniture. While I've been in Pittsburgh, members of the Oxford Volunteer Fire Department helped my mom and cousin finish moving us in. Family, neighbors and the Oxford Police Department have been checking in on the house and making sure all is well.

Folks who follow along here know that in March I started work as Executive Director of OCC. I've never felt more at home, more supported, more inspired or motivated to work somewhere. It has felt like exactly where I am supposed to be, professionally and personally. Both Anna and Ava have quickly become a part of the place, and with living just down the street from OCC, they can ride their bikes there.

While I have been in Pittsburgh with Ava, OCC's Board of Trustees and volunteers have made sure I have peace of mind to be here, and to know that all is taken care of at work. This week, there are shifts of volunteers covering the public office hours. I can't even begin to express what all that means or how grateful I am.

For the previous five years, I worked in, and commuted to, Washington, D.C. I made more money, but had less of a life, and certainly not a life where work, family, and play were integrated in any real sense. During the past two weeks, I have had KRS-One's voice in my head (as one does):

It's not about a salary, it's all about reality...

For the past two weeks, my reality has been around Pittsburgh, Munhall, Children's Hospital. It's been being where I need to be, when I need to be there. It's been tears, trials, triumphs, and trying to piece a new reality together, to return to life on the Eastern Shore, knowing what we are coming out of, and being thankful for what we have.

The newest part of our community includes the amazing people at Children's Hospital. The nurses, technicians and doctors who both girls look for--who have taken to Ava, and check in on her; who call her "girlfriend," and high five her; who laugh with us and are helping bring her back around; medical professionals who treat Ava like an amazing person, not just a patient; who are working at every level to get her ready to go home.

It's funny to me, how connected the words/concepts "reality" and "community" can be. Through this whole process, I have yet to feel alone, and there are so many people to thank for that. My reality is informed by, shaped by, inspired by, the community (communities) I am a part of.

When I get home, I look forward to sitting on my front steps with a beer in the evening, laughing at the girls running around the yard. I look forward to runs and bike rides around Oxford and knowing the folks I see on the way. I look forward to getting back to work, and helping define, and inspire, what community means to others. I know what it means to me.