Right away I want to change the title. The word feeling makes me cringe a little. Feelings change. Am I feeling this way because I’m tired or overwhelmed? Am I sad or lonely? I think all are true and then add a handful or other various emotions to the mix and that might be a good picture of where I am today. I don’t like being a “single parent”. I am thankful that my husband is providing for us financially, but it isn’t the same as having him here. I want him to come back but it isn’t that easy. I try to understand but sometimes it’s just hard. In less than two years, I have gone from a 5 person household to just Rosie and I. It’s very weird knowing that I am married but not living with my husband. I try to think that this is what it is like for military families or women married to men who travel for business. Not everyone has the typical mom, dad and children living under the same roof everyday life. And maybe it is just me missing that life. We used to have that. Dad had the typical 9-5, I stayed home with the kids. But now everything is so different. I hope I’m not coming across as being negative toward my husband. I appreciate what he does for our family. I just wish the timing could have been different. I know he is doing what he thinks is right and even though I may not agree I try to respect his choices. Sometimes I just feel like we are business partners and I wish it were different. I don’t blame him, it’s just the cards we have been dealt and we are trying to play them the best way we know how. I need to focus more on relying on God.
On the other hand I am thankful to be home and I feel like and am making progress on my mile long list of things to do. Rosie seems to be doing better now that she has been home for a while too. Yesterday, after seeing a then and now picture of herself from Halloween before transplant compared to this year, she said”Maybe I’m not as sick as I think I am”. That is a huge mental hurdle for her to overcome. I am working on getting her into see a therapist who has experience with CF patients and she is trying some different essential oils to help her stay calm. They seem to be helping her sleep well at night and having a restful nights sleep is very important to having good health. I’m happy to be back Stage Managing and to be back around my extended family. Our trip to New Mexico was nice for the most part. Some stressful situations came up but we were able to get thru them as a team and enjoy our time together. I’m happy to have been able to have spent time getting to know my cousin and her daughters better while we were in New Mexico. And someday I hope to live there and be able to spend a lot more time with that part of my family.
It’s so hard to know what the future will bring. Well, impossible really! I see 3 possible paths. Rosie could continue to do photopheresis in St Louis and live her life with a 21% lung function, she could decide that she had her second chance and now we are at the end, or she could decided she wants to try for a second transplant. If she decides this is the end, I’m torn between moving now to be with Dad or staying here in the comfort of the home she grew up in and close to family and friends. If she wants to just keep doing photopheresis, we can start the moving process after the first of the year, but that is going to be a long commute once a month to St Louis. If she wants to try for a second transplant, we will have to find a center who would be willing to list her. St Louis has said no, so we will have to look at Philadelphia or Pittsburgh I think. And if that happens Rosie and I would have to live in that city while she is on the list. So that brings me back to my feeling that this is not the right time to move to New Mexico. As much as I want to be there, the timing is just not right.
I know I might be ruffling some feathers by writing this, but I hope everyone can understand that this is my way of dealing with my feelings.