The Nomenclature of Bathing Suits

• Drive again
• Get a job
• Get accepted to UCF
• Write a book
• Get feeding tube out
• Wear a bikini for the first time in 10 years (!!!)
• Be awesome

(I checked that last one off the list a lonnggg time ago. Like at birth. 🙂 )

So Logan had her transplant evaluation at Mayo Clinic in Jacksonville a few weeks ago and last week they informed us that they decided to list her! We have no idea when the transplant will happen, but it is such a relief that she is on the list. They will keep track of her degree of illness and move her up on the list accordingly. This time we are prepared. We (hopefully) won’t have to go through that whole scenario again. No more emergency transplants or near death experiences. So, you’re welcome for that.

I know Logan was more nervous to get a transplant before I received mine, but I’m still nervous for her. As terrifying as my whole situation was, the transplant itself went pretty smoothly. I have yet to have any rejection (knock on wood) and I recovered very quickly. Not all transplants go that way. I worry about her so much. We’ve always done the CF thing together. We had each other to lean on and who understood what we were going through. And we still do. But now it’s different, especially for her. She hates that she has to do the vest and nebulizers while I don’t. She hates having to do tube feeds at night and having to wear tankinis [Note: While I was typing this, the little red squiggly line that tells you when a word is misspelled came up. Obviously, this word is not likely to be recognized, but it got me thinking: Who created this word??? Like I get Bikini because bi- means two and I kinda get Monokini because you combine mono- (one) with the end of bikini to get a one piece that is the mullet of bathing suits (business in the front, party in the back) and obviously a one piece is literally ONE PIECE of fabric. But Tankini? It just sounds awful. It has a negative connotation. I think someone should come up with a new name for it. Lemme know if anyone has any ideas.], while I finally got mine taken out and can wear bikinis for the first time since growing boobs. When she coughs, I hurt for her and I know how exhausted she is and I can’t DO anything about it.

I kind of hate myself for it sometimes. Like, all these great things are happening in my life and people always tell me how amazed they are by me and how they were praying for me and that I’m a “miracle”. And I appreciate it. I really do. But I feel like my sisters feel a little left out. I try to divert the attention away from me, but I don’t want to seem rude either. Meghan especially. She doesn’t have CF, so she was never the “sick” child (though she is the most prone to get sick or weirdly injured. Like she had Shingles when she was 7, had a meningitis scare at one point, got an infected toenail in Honduras, broke her braces by running into a wall during laser tag, and other stuff that she might get embarrassed about if I put it on here). People always paid a lot of attention to me and Logan and would not pay as much to Meghan. I don’t think people meant to and she has never said anything, but I would think that this might cause a little resentment. I love my sisters more than anything and I would hate for them ever feel left out or unappreciated or unloved so I sorta blame myself if they do, even though that is irrational. Aren’t we all a little irrational sometimes though?

 

P.S. May is Cystic Fibrosis Awareness Month! So wear purple as often as you can and spread awareness!