This last week, a friend of Blaine's added me to a Facebook group for CF Wives. It's a small group, closed, and all of the members are just that: wives of men who have Cystic Fibrosis. From the beginning, I have resisted being called a wife of a Cystic, because I am not that. I am, but, really, I am simply Blaine's wife, and I don't think there needs to be a Facebook group for being Blaine's wife. I do not feel defined by the disease. I do not think that Blaine is merely a Cystic. He is so much more. He is sunshine.
Every morning, Blaine completes his hour-long nebulizer and vest treatments while I get ready for work. In the evenings, we catch up on our internet reading or watch a show while he completes his night-time regiment. I sleep with the white noise of machines in the background. Our bedroom has a (mostly) contained tangle of cords.
I don't mind at all. It's our normal.
So, I am in this group. I have been silent for several days, reading the frequent posts but not contributing. Today, I offered a quick question about the CF clinic in Denver and was met with an overwhelmingly positive response. From people who KNOW.
I'm not wanting to hug them and sing Kumbaya, but I will probably keep reading. Because their normal is the same as my normal.
Subscribe to:
Post Comments (Atom)
-
Ultimately, the most useful articles/websites were those that talked about recycling programs that have existed in other areas. As I started...
-
I am fairly sure that I should not be allowed to blog right now because at present I am surviving on a mixture of liquid Lortab, IB 800 and ...
-
So, these are my mock ups of graduation announcements I am considering. I think I like #2 the most. In the blank white spaces, there will be...
The group isn't meant to define you as "a CF wife". It is meant to support you when Blaine get's sick and you need someone there who understands. It is there if you have questions such as when you did about Denver clinic. I didn't know I needed support until I became a member of the group. There are several other couples there from our clinic and most have had problems with the clinic itself. It has been nice to voice my concerns about the deterioration of the care I have received as well as my husband's. This is why you were invited. In no way was I trying to give you or Blaine a title. I hope you didn't misunderstand my intentions. It is about support. I thought you might enjoy it and it might help you as it has help me.
ReplyDelete