It seems like forever that I have had something decent to write about. I have some things that I have written in my journal but the thoughts, the experiences are just too depressing or deep to share. Those things I write down and then lock away, burn and bury. There is nothing good in those things and only someone that has experienced them would understand. I do save the experience and the spirit of hope in my heart when I talk with others in similar situations around the world. When you are not going through this type of thing you don’t think so much about what pain people really go through in this world. But when it happens to you or someone you know, the realization becomes up front and center.
We have been through the ringer with all the things that come with dealing with a long-term disease. Our needs are great, our resources few and on top of that there are those sneaky wants and desires that edge their way in too. Hey, we are only human. We try not to have the mindset that we “deserve” certain things but you do have to do certain non-need things to keep life for the kids somewhat normal and to relieve some of the tensions that are constantly trying to pull you and your family apart. So we ask for certain things to help cover our needs and we have been fortunate enough to receive things as they in a timing that can only be explained as beyond explanation. We have also received things that go beyond what we have asked for and what we could imagine. Things like my good friend Amy Hitchman paying for our family to go down to Serenbe so that the kids could go to the camp that they love and we could stay there and just be separated from our daily ritual. Kristin Quintero has given us so many flights on Delta that I have lost count. We have had friends that I won’t name because I haven’t asked their permission, but they have given us things that have kept us moving financially, spiritually and have given us the love and prayer that we need desperately above and beyond measure.
There have been so many things that people have done for us, some that we don’t even know about, and it has made our lives easier than doing this alone. Because you can’t do any of this alone. I’m not saying that there is never a feeling of loneliness or hopelessness, but it is the people in our live that are the greatest gifts in themselves. The little prayers at night, the moments in thought while looking out a window, and the calls, emails, Facebook, Twitter messages at just the right moment, this things have helped fill the loneliness and give us hope in the face of this disease. I put no gift above another. To me, a simple prayer is no different than a million dollar donation, although we haven’t gotten the latter, they mean the same. Support for our hearts, our spirits and the financial aspects of our lives. This stuff is personal. People are giving from their hearts and praying from the deepest part of their souls to help us. If that isn’t the greatest reason for living and fighting for this life, there isn’t much more that can help you. It is the people that we meet, the people that are all around us that give us life and affect us in so many ways. It humbles me to think of all the open hearts out there to our situation. It humbles me to no end and it drives me to want to be able to help others as others have helped us. Humanity and grace are the sustenance of our very souls.
There is one gift that has opened my eyes to a whole new perspective on how much people care about not only us but those that are in need. Lynn and Eric Stover brought to us a gift that caught me off guard, in a good way. Lynn came over one day and gave me a gift personally and called it “A Prayer Shaw”. It is a hand woven shawl that is big enough to cover me as a blanket. They made it in as manly of colors as they could and it is quite beautiful. What is truly beautiful is the story behind it. The women in her church made this hand-woven shawl for me. In my mind, I can see them making it and praying over every turn and every weave, every knot and every new color. They pray as they make it, praying for my health and healing and for my family as well. When they finished the shawl, her church prayed over it. Every fiber of this shawl represents the prayers that are not only from them but all the people that know us well all the way to people that have only heard of our situation. It is to me a representation of the fabric that connects us all. The way that when one bad things happens, the people connected to your life help to bring strength to the weakness in the fabric. They tighten the fabric to hold you and support you. When you get better you do the same to help support others. It is the fabric that binds us all. Author Brian Greene would call it the “Fabric of the Cosmos” and explain it as the superstring theory. That everything is connected by string-like particles smaller that the parts of an atom. They connect the parts of every atom to each other so that if something happens on one side of the world, or the universe, it affects the entire fabric and in order to bring stability to the fabric, things must give way or help support deficits and also help distribute abundance.
When I first received the shawl, my daughter Reese quickly grabbed it and slept with it every night. It had my smell on it and she said that it helped her sleep and she didn’t have nightmares anymore. Reese has seen the gamut of this disease. She remembers when I was well and we actively did so many things. She tries to deal with the now daddy. The current dad spends most days in bed and doesn’t always make it to her plays and doesn’t take her to the all the cool places. Both of my daughters Reese and Lakin love the shawl. A few weeks later we received a shawl for Mary, Lakin and Reese. They are each beautifully and wonderfully made.
Tonight, several people are having a fund raiser tonight to help pay for my August 30th scoliosis surgery costs and costs surrounding it. Our friend Joe Mayernik designed the beautiful poster shown above for the event. It is based off of a new theme for our cause called “Be Strong. Take Heart” and the image is similar to the tattoo on my forearm that says “May Grace Free You Forever” (something that I have to constantly look down to remind myself to do!). “Be Strong. Take Heart” is about not only our vision of my recovery from this disease but also us getting to the point to where we are helping others in our situation. Ryan Snuffer has been gracious enough to allow us into his Appalachian Community Mission to help with local fundraising. If you can’t make it to the fundraiser tonight and want to give then you can click on the link above to do so. If you need to make payments by credit card then please use the Helping Hands Ministry that is listed on my home page. Of course this is if you want to and I don’t expect you to. We are trying to just have a good evening of music and community with our friends Mandy and Kevin Mann from Nashville. Mandy played at my last benefit in December 2009 for those of you that were with us there in Atlanta.
Mary and I will try to blog as much as we can in the coming weeks and especially as the surgery starts and as I go through a very tough recovery period. Prayers will be needed above all so keep this in mind or on your mind in the coming weeks and especially on August 30th when the 8-12 hour surgery will be performed.
Love you guys!