To be quite honestly with you, I don't have much information about how my first year of life went overall. Clearly I don't remember it so well, and it's not something my parents and I have ever had a discussion about. I'm not going to sit here and make up with I think happened, because that wouldn't be genuine. Unfortunately my parents and I don't have very many open discussions about my Cystic Fibrosis. I don't think it's something they've yet accepted. Not yet being a parent myself, I can only imagine what it would be like to discover that my newborn baby had a life-threatening disease. But I don't think I'll fully grasp the difficulty until I become a parent.
For those of you who are parents to a newborn/child with CF - embrace it! Educate yourself! Be involved in your child's care, answer their questions and if you don't have the answers, ask their doctor. Fund-raise, join Great Strides, reach out to the CF community -- I promise you, it's one of the most welcoming and supportive communities I've been privileged to be a part of! Yes, CF can be scary, but it doesn't have to be! We're all here to support you and your family! :-)
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I never knew my biological father, and discussions about that fact are something my mother and her wonderful 2nd husband who adopted me could not handle. Very difficult for me despite them being good parents in many other ways. Your situation and mine are different, but in some ways the same - it's hard when you're a kid and the adults in your life are so vulnerable/hurt/scared that they can't help you understand/accept a complicated part of your life. Well, even parents are only human. I've got 3 boys of my own, now, so I should know! Reading what you wrote about your parents makes me sad, for you, but also it soothes me a bit - my parents weren't the only ones who couldn't be there for me in such an important way. Again, only human. Wishing you a happy and healthy CF Awareness Month of May!
ReplyDeleteI can relate totally to parents that don't really talk about CF. I think my mom is still in denial and it was always difficult feeling like talking about CF was off limits because sometimes you need support when it comes to the challenges CF brings. Whenever I would try to talk about the "hard stuff" my mom would simply say, "There will be a cure soon" and that was that. Finding an online CF community really changed my life :)
ReplyDeleteI couldn't agree with you more, IH!!!! I swear I thought I was the only one. My side of the family doesn't acknowledge my CF and sometimes I just think, "Who cares!?!" But that's their problem, not mine.
DeleteFinding Tim and the online CF community is what definitely changed my life! I couldn't be more thankful for either over the last 6-7 years. Thanks for sharing your personal story, too. :)
IH and Colleen,
DeleteI never experienced these things with my parents about not "accepting" my CF. But I just want to say if either of you want to talk about anything you know where to find me!!! So glad that I "met" the two of you on blogger!