Last week was an adventure in survival. I had a paper due for a class I had taken, my wife had back surgery, I flew out of town and back for a meeting, and preached on Sunday morning. By Sunday afternoon, I was passed out on the couch. I had nothing left in the gas tank.
Life is like that. There are times that we just coast through, but more often than not schedules are rarely predictable. Such is the life of a pastor. The only thing that we can do is be present in the moment. Anxiety can sometimes take over, and I can easily forget to simply breathe and enjoy where I am at the moment I’m there. Now is what counts.
As I rattled off my busy schedule, I didn’t talk about the blessings that came my way as a result of my crazy time. I celebrated another academic course completed. I gave thanks that my wife had a very successful surgery. I met new friends, and spent a few moments with some great friends. My flights, while adventurous, got me safely to and from my destinations. Sunday morning was filled with celebration and joy. These are the wonders that come with a busy and fulfilled life.
I give thanks to God this day for the gift of servanthood, that I was asked to take part in a consumer panel in the bleeding disorders community. I am grateful that I can connect with a community who longs to hear my story, and the story of my family. I was honored to hear other’s journeys, and the strength and hope that they find on their paths. Their stories are an amazing tapestry of an incredible society of men and women who struggle to make their lives rich and meaningful despite the presence of a bleeding disorder.
I think it is safe to say, that we are a part of many different cultures and societies. It was great to be reminded that I am a part of the hemophilia community. I struggle, just as those around me, to find normal in a world that involves daily infusions, hospital visits, and a medicine closet packed full of medical equipment necessary to give my children a chance at their best lives.
My hope is that through all of the chaos we may remember to find the beauty in the moment. Let us never throw away a single second. Let us give thanks for what we are given. Praise be to God, who never ceases to amaze his children.
My youngest son was hospitalized earlier this week. He is having another break thru bleed in his right knee. The complications that he deals with are painful and seem to never let up. There is no down time in our world when it comes to internal bleeding. Bleeds happen often and without warning. Each episode is unique unto itself and comes with its own share of physical and emotional issues.
Despite the hospitalization of my youngest son, this week I had several meetings scheduled with members of the hemophilia community. I had been asked to motivate people to take part in a first annual Walkathon for the Sangre De Oro Chapter of the National Hemophilia Foundation. (I will be posting how to participate in our Walkathon in a separate entry on my Facebook page).
As I was preparing what I would say, I was overwhelmed with the question, “Why do I participate in this community?” I do it primarily to stay informed on the latest treatments and programs related to hemophilia. Knowledge is power. The more I know the better I can treat my sons disorders.
Another reason I participate in the Sangre De Oro Chapter is because I remember what it was like to have a newly diagnosed son with hemophilia. I lived in Houston (a town of approximately 4 million people) and had never met anyone, to my knowledge, who had a bleeding disorder. I felt alone and completely lost. My emptiness was transformed into something I could never have imagined by a simple phone call. It was the voice of another parent who reached out to my family. Her child had hemophilia and assured my wife and I that we would be fine. Our son would live a good life.
I was then invited to participate in the Houston area chapter of the bleeding disorders community and began helping out by working events. With every project I learned more about my son, about hemophilia and I even learned about myself. My goal was to ensure that no one needed to feel alone again. I serve the community to help empower families who feel alone. I want others to experience the message of hope. I want people to know that they are not alone, and there is a community that longs to embrace everyone who struggles with bleeding disorders. We want to journey together.
My message of service is so intertwined with my faith. Our source of strength comes from the Divine promise that we are not alone. We are called to be much more than we can be as a single entity. Christ calls us into fellowship with one another. At the center of our faith community we discover this message of hope and Good News. At the core of our fellowship, we find the Gospel of Hope.
As he walked along, he saw a man blind from birth. 2His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him. (John 9:1-3 NRSV).
Deborah Creamer’s interview brought to light that those with disabilities may read certain Biblical passages differently than those without disabilities. Many of you know that both of my boys have severe Hemophilia Factor VIII Deficiency. Basically, there is a clotting shortage in their blood. They must take medication in order to clot. Unfortunately, the only way to be cured of hemophilia is to have a liver transplant. It is a life time disorder and does not change severity. The recessive gene which carries the code is passed along the X chromosome and the mother is the one with the altered DNA. When a child is born with hemophilia, there is a tremendous amount of guilt that many women suffer because of the genetic circumstance.
I discovered the above verses from John and read them with new eyes. As Debbie mentioned in her interview, we tend to generically read many of the scriptural texts. This particular scripture (John 9:1-3) provided tremendous insight into my own life as to the reason behind my children having hemophilia. In some ways this was a source of comfort, but in other ways was a source of anger. Why did my children have to be born so that “God’s works might be revealed in them?” Wasn’t there another way that God’s works might have been shown?
Debbie’s interview reminded me that, like my children, I read the passages on healing with a different lens. My oldest son is 13 years old. I wonder how my son read the passages regarding healing. Does he struggle with some of the questions that Debbie brought up regarding healing? In the interview she addresses several different ways that someone with disabilities may respond to the Biblical text. There are some who dismiss any problems with the text in a generic sense. There are others who call their faith into question. If one is faced with the kind of faith that measures the amount of faith to the amount of healing, there is the potential for enormous damage when healing does not occur.
The interview made me realize that I need to be sensitive to my sons and how they interpret the Biblical passages of healing. I must be able to hear their struggles with the passages in which healing brings wholeness. The Biblical text from John 9:1-3 is a very good beginning to understanding how our fellow believers with disabilities interpret the texts of healing.