Wishes and Blessings

A new week has set in and with it so has reality. I have signed a release of information form for St. Louis Children's Hospital. Tomorrow I will sign 3 more from Methodist Hospital, University Hospital, and Methodist Specialty and Transplant Hospital. From there all my medical records will be sent to Barnes-Jewish Hospital in St. Louis, MO. We are putting all this information into their knowledgeable hands and minds. And while most 22 year olds are wishing for a new iPhone, Kindle, or just lots of cash, I'll be wishing this Christmas that these doctors miles away see something that my doctors have yet to find. A treatment and a possible cure; that is all that most of my family and myself want this Christmas.

People say depression increases during the Holiday season and I certainly see why. It isn't what you were expecting in so many ways. It's the end of the year and there are inevitable shortcomings and I have no shortage of those. I am still not well, I didn't complete the past college semester, people have disappointed me, and so on....

But to counter all the sadness we may face at the end of a long year, I have to focus on what does matter the most. I am alive. I am alive in my smile and my laugh. I am alive with my little dog, and with my friends, and with family. I am alive to get better so I can get back to everything that I know I will be great at. That is first and foremost in my mind. I am so blessed to still have this life. Cause it's still an opportunity to make things/love/memories happen until my heart stops beating. And I try my hardest not to focus on the people that have let me down when I know that I have so many wonderful people in life that haven't. Friends, my sorority sisters, my ACTUAL sister, my parents, my brother who has concern for every aspect of my health, my sister-in-law that I feel like I can always talk to and be real with, my constant prayer warriors who probably pray more for me than I pray for myself, and of course you know I'm going to mention my sweet dog. My little Abel who has healed more pain and melted away more anger than he will ever know just be being a presence in my life.

With these records being looked over, my case being considered, and the possibility of going up to St. Louis looking more and more realistic, there is a natural response to feel nervous. Traveling, hotels, doctors you've never met, in a hospital you haven't been inside for 10 years. But that's what the paragraph above is for: to remind me that I am blessed and I am loved. That is enough comfort to get me through these scary times. That, and of course, my faith in God.

In this season, I remind myself that Mary had to go to Manger in Bethlehem to deliver her son. This was obviously not her ideal scenario. She never pictured delivering her firstborn this way.

But maybe God's plan is just as mysterious for me. I may have to go to St. Louis and see unfamiliar faces, do unfamiliar tests. I'll feel uncomfortable, I'll feel scared. But possibly in the end, something great will come of it. I can only have faith.

live with hope

I had a weekend in Austin that was packed full with plans to see my sorority sisters and favorite frat boys. It became clear to me that by doing the things which gave me the most joy, I wear myself back down to not being able to those very things. I feel so high driving up to Austin and so drained driving back home. Even a few days on my own prove to me that despite my best efforts, I am not better. Being completely responsible for myself and my high maintenance body just reminds me how much I still need help. Then, what I think is a realistic goal to claim my independence, is pushed back once again. It becomes slightly depressing that the healing is so slow or that it has possibly plateaued. Sadly, this plateau is not one that I am satisfied with. I cannot live where I am constantly gasping for air doing simple tasks. I cannot live huffing and puffing trying to keep up with my friends as they shuffle down 6th street. Something soon will have to give in. A change will need to occur.

And in all this frustration, I have some inspiration from a very unlikely source. Elizabeth Edwards is not someone I have a lot in common with. We have very different opinions on almost everything. However, she too, has been suffering with a critical illness. Today, she posted this on her Facebook page:

"The days of our lives, for all of us, are numbered. We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful."

So as I continue to struggle and suffer with my disease, I am reminded to live with hope and not be discouraged in the coming days, however many there are left for me. If a woman who has suffered this much can utter these words, surely I can try to live it out.