-Bill Gates
I find that I am constantly having to remind myself that life isn't fair. I think it should be fair. If life were fair we would not have war. We would not have discrimination, and we would not have a crazy mommy ranting and raving on her blog about the unfairness of life!
But hey, life isn't fair, so here I go!
I'm not trying to be a Debbie downer, rather an honest Anna. I am so confused by Jonah's illness. I know so much about it but still find myself knowing nothing. How can this be?
First off I have yet to find a child who is where Jonah is, illness wise. It seems that the people I have "met" who have Non CF Bronchiectasis are learning that they DO in fact have Cystic Fibrosis. I am feeling more and more alone and abandoned with this disease my son has. Where are the answers? Why can't it be clear cut? Why is my son who was just as sick as another little one doing so poor, and the other child doing so well and thriving? Why is Jonah still on oxygen after two years? I believe I was told he would need just a whiff for about 2 weeks and then he would be fine. Why won't his lungs improve? When will the antibiotics and steroids stop? I'm just at a point where I can no longer cry tears of sadness but tears of desperation.
The uncertainty that I feel day to day about Jonah's health is a hard cross to carry. I find that I go through waves of emotion. I am reminded daily that life is indeed not fair. Luckily I do have a sweet boy to remind me that it is all so worth it. Because of him I will continue to ask all of my questions... even if there is no one to answer them.
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Hello there, I have just read your post here and want to help if I can, I am a bronchiectasis sufferer myself and felt so alone with it I am 29 myself so not a child. But coming up for 6 years ago I set up my own website to help other Bronchiectasis sufferers out there as there was no web based forum support at all. I know have over 1500 members and people from all over the world ranging from all ages. I have members on there also with young children so it's up to you but feel free to pop over and see us at www.bronchiectasis.info
ReplyDeleteKind regards
Charlotte.
Thank you Charlotte, I have infact signed up with the group and have met some pretty amazing people through your website. I think its an awsome support group!
ReplyDeleteI don't know if you know Phoenix, but he also has been on oxygen since birth, unusual for CF'rs. Sometimes our kids take paths we don't understand. Let me know when your free and we will look at shirts!
ReplyDeleteJessica, I wish so much that things were more clear for you. In all your research's have you found a doctor, or been told of a doctor, that is the best of the best with either his diagnosis or CF? Maybe you can have Dr. Pfeffer get you a consult over the phone or something with him. Maybe you could get answers that way. I don't know what else to tell you. I just agree with you that Life is not Fair and maybe I should get over the thought that one day it will be. I am not in the same place as you are totally, but I do know how hard it is to have a child who follows no known path or fits in any particular catagory. It's hard and it sucks. The end. I am so excited to see you today!
ReplyDeleteHello! Thank you for visiting Phoenix's blog! If there is anything I can do please feel free to ask.
ReplyDeleteI know it's hard to imagine sometime with all that our amazing kids go through, but they were given to us for some wonderful purpose. They are fighters from the word go, and teach us about living in the moment. I know it's hard, but you are doing a great job.
I'm here if you ever need to vent!
Give that adorable little guy of yours big hugs from Kansas!