2016: Live & Love Between the Madness

As I look back on 2016, it’s impossible not to reflect on the testing of my spirit, and the painful days. But, at the same time, I can't help but remember the beautiful times. Not a month went by that I wasn’t blessed with the love of friends and family, adventure, and laughter. This year I opened up my life and my thoughts to all of you, in ways I never thought possible. In return, you all reminded me that there is so much incredible need in this world, not just for hopeful cases of hydrocephalus… but also for human connection and support. Obviously, hydrocephalus is not the only condition in which people feel terrible isolation and frustration. I know that by opening up about my struggle, I've been able to give complete strangers an opportunity to feel understood and supported, even if we may never meet in person. In the past twelve months, I’ve gained new friends all over the world, who find a value in following my story. That is so overwhelming, humbling, and amazing, all at once. You’ve completely blown my mind with your response to this website/blog, as we’ve exceeded 70,000 page views in the first year. I’ve received several thousand messages, emails, and comments… and you have entrusted me with knowing your stories as well. I am truly honored.

To recap the past year, I wanted to share some photos and music with you… Enjoy. 

​We entered 2016 on a bumpy path, after a difficult end of 2015. I had two shunt revision surgeries in December of 2015, only 5 days apart. In the recovery room following the second surgery, I suffered my first seizure episode. So, the first couple of months of the year were spent in pretty intense rehabilitation, and slowly getting my strength back. 

The spring brought my birthday, time with family, and a trip to Austin, TX for a friend’s wedding. Of course no trip to Austin is complete without lots of snuggle time with my twin nieces, Kylie and Kolbie. 

Throughout the first few months of the year, I dedicated myself to establishing this website - blogging and writing almost weekly, and committing myself to a more consistent advocacy role. Blogging is something that I never envisioned myself doing, and it's been more challenging than I thought it would be. I’ve journaled extensively over the past few years, and much of the writing on the blog is taken from that journaling, which I initially never planned to share. A few of the blog posts have gained a lot of attention, comments, and shares on social media. 
Link to 1/8/16 post: "When are they going to get this thing figured out??"
Link to 5/17/16 post: Trauma Healing & the Truth
Link to 10/2/16 post: The Change (my fight against an invisible condition)

At the end of May, I had a bit of a setback medically, leading to another shunt revision surgery. I healed very quickly this time, and was thankful for the hard work that my rehab team had put in after the December surgeries. It certainly pays off when I am physically and neurologically strong, going into surgery. 

I was honored to be asked by the Hydrocephalus Association to present at the National Conference on Hydrocephalus, in Minneapolis, in June. I participated in two panel discussions at the Conference. It was incredible to meet so many people who knew my story or knew me through social media. In addition to connecting with other patients, I got to spend time with some dedicated and inspiring physicians and researchers, who are working to find better solutions for hydrocephalus. It was a life changing experience I’ll never forget. 

Bella, our black lab, continues to be a constant source of entertainment (and photos). She loves to hang out with me, and forgets that she’s 14 years old the second she sees ice cream, blueberries, or the beach! 

I’m thankful to have my job as a construction designer/project manager, which gives me an opportunity to be creative and work with such talented people every day. Our company completed some exciting projects in 2016, and I love being a part of this team. 

This summer, we celebrated Clifton’s 40th birthday, and our sweet little niece Jade’s first birthday… both big milestones.

More fun with friends and family….

In July, my shunt pain had started to spike again, and I was challenged by my neurosurgeon to get as strong as possible, pending a return to the operating table sometime in the fall. The following week, I made a pact with my trainer and a few girlfriends at my gym, that I would post to Instagram every single day for the 3 month period the doctor was proposing… and the  100 Days of Strength began. It was harder than I thought… especially since I ended up having surgery on day #30. The remaining 70 days followed my recovery, and my inner battle for peace. The 100th day landed on Thanksgiving Day, which seemed fitting.

At the end of the #100daysofStrength, I made this video to document the experience. My dear friend (and fake brother) Casey Willis provided the beautiful music for the video. 

My friends, life never ceases to push us in ways that we don’t expect. The most important things have a way of revealing themselves to us, and the only constant thing is change. If I’ve learned anything in the past twelve months, it’s that I don’t know what is around the bend, and I need to focus on staying focused on the present day, the present moment. I’m grateful for the opportunity to share these moments with you, even when it hurts. If you take anything away from my story, I pray that it is this… that you have to live and love between the madness. Acknowledge and enjoy the good days, even if they aren’t perfect. Be strong. Push to be as active as your body and mind allow. Don’t be afraid to put in the hard work. Enjoy the people who surround you and fortify you, even on the difficult days. Allow the closest people to truly see you, allow them to catch you, and allow them to love you. 

Thank you for taking time to relive the highlights (and lowlights) of my 2016, as this week, we look forward to the new year ahead. 

Cheers! Here’s to the relentless pursuit of everything important. 
Stay in the arena, 
Am​