“Playing the Cards Life has Dealt”
The guy who I was dating throughout junior high and high school proposed to me the summer before my senior year and we set a date for the wedding after I graduated from high school. January of my senior year I had the opportunity to go to Hawaii through the Dream Factory. The Dream Factory is a wonderful organization that gives kids who are sick with incurable diseases their wish like the “Make a Wish Foundation” does. My wish was to go back to Hawaii. I have family that lives in Hawaii and it is my favorite place in the world. I haven’t been anywhere outside of the US but still it is my favorite place to go/be. The only weird thing was my fiancé went with me, not so much of a kid thing to do. In July of 1998 we got married in a big catholic ceremony. We moved to Pittsburg, KS two days after getting married. My husband was going to start college at Pittsburg State University and wanted to walk on the football team.
While I was living in Pittsburg I hung out with my aunt a lot since she lived there. She invited me to a women’s bible study. I was very interested because I had a lot of questions that I wanted answered. One of my questions was, did God give me this disease and why? I began to find comfort in knowing that God did not “give” me CF as some kind of punishment and that I won’t know why I have CF until I have a chance to ask him when I get to heaven. I am sure that I will see all the people that I affected and encouraged because of CF so I decided to stop wasting my time worrying about that. I know there is a reason I have CF I just cannot see the magnitude of why yet. I have a major compassion for sick people, people who are in the hospital a lot, people who have no energy due to illness, and even the caretakers of the sick people.
When my husband married me he knew what he was signing up for and all that it involved. We had the dreaded talks of “what if and when” with more participation on my part than his. He got very use to me being in the hospital, whether he wanted to or not because it was happening no matter what.
He was supportive in the beginning of our relationship then grew distant over time. He stayed the night with me when I was inpatient. Over the years I believe he got a little more annoyed by the hospital stays each time. I also believe that he began to resent CF and all the things it limited him from doing.
After a year of being in Pittsburg we moved back to Olathe, KS, our hometown. My husband did not want to play football or go to school anymore so there was no reason for us to live in Pittsburg anymore. A few months after moving back to Olathe our friends invited us to church and we began attending church and got very involved.
We had what I thought was a pretty normal marriage. Of course we would fight and I was always right, just kidding. We had financial problems which was the caused of a lot our fights. Sometimes when you think everything is okay, you then have something happen that makes you realize that it wasn’t what you thought.
For anyone whose husband, wife, or significant other has CF or any other disease/illness, be their strength when they have no strength. Be their voice when they have no voice. Be their everything when they cannot give anything.
For loved ones of someone who has CF, remember that they never forget what they are feeling every day. Their reality is not your reality. Being the one with an incurable progressive disease takes a toll on your mind and body. No, we do not live everyday as though we are going to die tomorrow but we thank God for another day. We have to live like there may not be another day so that we do not miss anything but we cannot be depressed all the time about having CF. If you are still angry with God or just angry in general that you have CF or any other disease/illness you need to take a deep breath and take a step back and be thankful for everyday that you have with the people you love. It does not have to be scary if you seize the day, every day. Live as though you are going to live one hundred twenty years, not like you are dying in twenty years. Try everything you want to try so that you can say that you did all you wanted to in life even though you had limits. Nobody knows when our time is but the more you sit around worrying about it, the sooner it will come. Live life.