It's hard to believe that Julie doesn't have CF in her lungs . We were on a walk yesterday over to our friends and as we were walking up a hill by our house, Julie and I both were amazed at how effortless it was for her. Yesterday Kelly Julie's nurse called and discontinued the nebulizer treatments that she was doing four times per day. Each treatment would take about a half hour and she would have to plan her day/evenings around them. When I walk into our room now, I don't see machines, and tubing, and a basket full of neb cups on the side table. It is so surreal. We are just about at 6 weeks post op and my life has been turned downside up. We are already getting used to how things are right now. All that 'stuff' is becoming the exception, and not the norm.
I have learned a lot from this experience. I have learned that no matter how bad things get, they can always get better. Despite the looming possibility of bad news, even now, Julie has taught me to live today, and don't stress about tomorrow. It's been in a way that you wouldn't expect though. Julie is an analyzer and a thinker. There is a lot going on in her head that I don't even know about. It is not uncommon for her to ask me questions about what she is feeling or what side effects she is experiencing. She will often state the worst possibility. I will counter that with what I think is going to happen, or what I think the side effect is from and try to lift her up with some hope. Over the years I have found that she typically already knows or believes what I tell her, but she asks me so that she can verify it in her own mind. By staying positive (partly to keep from going insane) and countering her sometimes worried question, I have come to believe it. Sometimes my response isn't what she wants to hear, but again I find it is typically what she believes already. We had to come to terms with a lot over the past 4 years. I feel like we would hash things out as they came and then in Julie's words would "Go for it". Coming to terms with having to have a transplant is a classic example. It was a real nail biter. When things gradually get worse, you adapt and deal with them. Our lives were turned upside down in November when we were told to consider this procedure. Julie had the world view that she wouldn't do this unless she was on her death bed. We had to come to terms and face the fact that despite her fight and will to live, she could easily get sick and rapidly decline. Waiting till then was as we learned was not an option. Going in and out of the hospital is actually something we got used to. It was always a goal to keep her out for as long as we could with out causing permanent damage. The window between hospital stays was narrowing, but there are great advancements around the corner with the treatment of CF so we continued to hope and fight. When this was brought to the table last year, our so called plan to get Julie better was interrupted.
This may all sound ungrateful, but I think this is what happens to a lot of us. As I have made goals and had hopes throughout my life, they seldom play out the way I want them to or think they will, but the outcome can still be there. I am overwhelmed with gratitude for this process as with the joy this outcome has brought my wife and I already. I believe it is important to have mental goals, but to be okay when things don't play out as we plan them. It is not always bad despite what is in front of us.