I find it hard to express everything I am and to the depths of were my emotions reach. I spend my days positive and focused mostly and fighting, which is how I roll. I am a blessed person and I know this very much so. I am thankful daily for what I have been given and for what God has put on my heart. My husband and I talk frequently about how terrible I am at always thinking "best case" senerio, when his training in the military has led him to "worst case" senerio. I guess we balance each other out. I also am an answer girl. If I don;t know it I want to and WILL find one. I remember learning of this gift way too late in my life. Had I known I was good at it I wouldn't have procrastinated on so many papers in school. Although I believe that my grammar always tossed my smartness out the window. I found it silly that if I couldn't write it the right way then it was wrong even when it was right.
So I have had many people asking me lately about Georgia.... When you going? Are you still moving? Isn't it going to be hard? WHY?
So here it is all the answers you all wanted to know :)
we are going to GA, I pray for sooner than later, but it will happen when it is right. The truth is it could be only months away or it could be next spring or even further from that. I know it may sound wild and crazy to many but it is a God guided path, and I trust that he knows the right time, and we are just working with what we have. Our house needed many things done to make it marketable. We have been working strong and hard at getting these things done.
It will be hard, really hard! We both have family here. I find it very hard because for once in both Matt and my life we feel that things are "in place", when i say this I do not say it loosely either. I am close to my family and we are getting closer with Matt's family. I have a bond with many of them and Love being an Aunt. My sister and I have become close and I really have come to enjoy the guy she will be marrying some day. I have great friends that I truly enjoy for the first time ever. I have a church family in which I have yearned for my whole life. I love the house we live in now and really thought I was going to get old in this house.
So if everything is so great why would I leave it? That is the question these days more than any other. Here is the upside and the good part of leaving..... I must start with the most important part and that is Brandon. I know Brandon is doing well right now, but I also know that he can be doing better. He has been in the hospital 2 times which I agree in the CF world isn't extremely bad, but it isn't the greatest either. Here in Fort Wayne our hospital knows that they will see their CRF'ers in for their winter visit. This year we almost spent Christmas in the hospital. Once we returned home we were told by Brandon's Dr. to stay home and keep Brandon away from the public, especially with the flu outbreak this winter. For a small child this was easier to do, but I cannot take "life" away from my son. He deserves to be able to live as we do. Because of his orders we missed out on several family events and several nights at church due to possible exposure to illness. This to me was and is unacceptable. It broke my heart and made sense as to why we needed to leave. I agree that Brandon's DR can be extreme with CF care, get rid of the dog, if you can have hard floors, keep away from triggers, don't dangle upside down, don't eat Cheetos and so on, you really have to choose your battles with this disease. Every one is also very different with this disease, it is not a cookie cutter type thing. MY son does not do well here. The first hospitalization he had they were struggling to find something to clear him out and get his cough to stop. They started Tobi and it still didn't help. Finally after many thoughts they decided to just see what Hypertonic Saline would do for him, and the cough was gone. This was Brandon's miracle drug. This is a salt water solution that he breathes in 2x a day.
Salt air was a HUGE deal for him! We took a trip to Jacksonville FL to visit my father. It was when Brandon was 6 months old the first time. I was nervous and worried about him getting sick away from his clinic. Thew first several day were really bad I remember needing to increase treatments for Brandon and he seemed to be just coughing and gagging, one night he was sounding weird and I was scared. I went to the living room and started albuterol and percussion when I had Brandon in a down position pounding his back mucus started pouring out of him in handfuls. I couldn't understand how so much junk could come out of such a tiny body. The next day we went to the beach thinking the fresh salt air would do some good, but Brandon just slept all day. After this he was full of energy and a different child, more at ease. I still was unsure of what really happened but he was better. When we got home I took him in to the clinic to just get him checked out. They said he was fine and that the beach was the best thing to do for him. As we took trips to my dads i realized B had a pattern of a few days down and clearing out then that ease and peace came back. Last year we visited GA as we considered a move down south. We are partial to Ga and its 1-2 hours from my dads. I wanted to see how B was there. He did a similar cycle of clearing out and ease just as he had done in FL. We learned at this point the kids were both beach kids, especially B. He loved to be in the water and swim and be out doors. I have to say watching my child who has struggled to breathe have it easier (for him) was something I wanted for him. I had and understanding, as I do now, that I may not be able to control the quantity of B's life, who could ever know or guess at to what that is. What I can control is the quality of his life. As a parent we all wish only the best for our children and if that means offering your child simply the ease to breathe just a little easier, we will do it! I agree I am blessed to be able to do so for him, and I would be a fool if I was given the opportunity and had the means and didn't do so.
Of course there has been doubt and questions and many things on my mind. While in GA last year there was some doubt even though all things pointed to moving to GA. A friend of mine prayed that we would be shown if this is where B needed to be. The next day my friend and I went to the beach with the kids. Her younger son had gotten stung by a baby sting ray, yeah not too fun. I had my 3 year old and this 7 year old in my arms walking in from the water. (I felt like super woman.haha) I had a woman offer to help midway and carry my 3 year old. I had gotten my friends son to the life guard and swapped spots with her. This was all very fast and I packed her 3 year old, B and my 3 year old up and had her older boy help me. The younger boy who was stung was driven up to my friends van on an ATV with the life guard. When we got there ourselves the life guard looked at me and said, which boy has CF? I was a little floored and pointed out B in the stroller. He said "oh the little guy!" He told me he was 30 with CF and went on to how well this salt air is for him and how well he does. I really had wish I could have talked longer, but we did still have a screaming 7 year old with a sting.. I then realized this was my answer. This was gonna be home someday.
To really drill my answer in I took B into clinic once we returned and the DR told me his lungs were clear, as in VERY clear. My husband and I just knew that for him, GA is better for him. We enjoy GA as well and to say that this is ONLY for B would be a lie, but it is mostly for B. I noticed other things while we were there, the rest of us felt better as well. We most likely would have never made the move for ourselves.
I want to say that this is what works for Brandon's CF. This is such a different disease fro each one living with it. We know it is hard for all you out there wo love us. It is hard for us too. We are struggling to leave all the people we love here. I know its hard to support someone who is leaving you. I know it is hard to remain or develop a closeness because the fear of loss is soo great. SO I thank you and appreciate you all who have lovingly supported us in this path.
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