Anyone remember me?

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mom2my3kids

New member
I am not sure if anyone remembers me but I was active before we lost my infant son Xander but I withdrew away after his death (grief..ugh) but I find myself needing support because my daughter has been dealing with CF issues and I find myself worried so worried I am totally freaked out over losing her...how does one not worry over CF?
 
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cgarne01

New member
I can't tell you how to handle it, but I can tell you how I do. I consider my daughter a gift. A blessing to me and my family. I feel like I am lucky to have her as a part of my life for as long as she is a part of my life. I also have faith that new treatments are coming out. People are living longer healthier lives with cf, and I never treat her like a sick kid. Once I accepted all that, it became much easier to not worry. Besides, worrying doesn't help anything, right?
 
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patpatstoo

Guest
My daughter is a blessing. I cherish each day and thank God that he gives me the strength to handle this. My friend just lost her 10y/o to a brain tumor. I live each day as it comes. My favorite verse: I can do all through Christ who strengthens me! My thoughts are with you and your family.
 
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kitomd21

New member
I certainly remember you and actually think of you often!! Lost you on Facebook, too. I'm sorry about your fears...which are totally justified. But, I totally agree with PatPat. God has gotten us this far. I'm glad you're back - I hope you find comfort here...
 
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Cherylwithone

Guest
I remeber you. Welcome back<img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" /> I wish I had words of wisdom for you. I have just my
daughter with CF. I have gotten to the point that I let her live her life as if she does not have CF. Mind you, it is always ticked in the back of my mind. I would rather have her live her life to the fullest then to keep her locked up and die with regrets. That has how I started to look at life with her. She will get sick and we just deal with it as it comes. I stopped living with the "What if's" and started dealing with the here and now.
Keep in mind it is easy for me because I have not lost a child to CF. If I had I might look at things in a different way.
Bless you for having the strength that you do.
 
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rubyroselee

New member
Welcome back Jana - yes, I remember you as well! So glad you decided to join us again <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Mommafirst

Guest
Hi Jana -- I remember you!!

I honestly don't know how you can lose a baby to this disease (and therefore the idea that medicine is better now isn't really going to make you feel better) and NOT worry about your daughter's CF. I guess the only thing you can do, like so many of us, is take it day by day. Some days are easier, some days are much harder. On the hard ones, be good to yourself. On the easier ones enjoy what you can.

(((HUGS))) CF bites and its not just the actual illness: the treatments that are time consuming and the fear that consumes our emotions are both just as real.
 
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all4Eden

Guest
The best thing for us to do is to pray. To pray for all of you and all of you out there.
 
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LittleLab4CF

Super Moderator
Please accept my sympathies. Sort of like the unseemly hot weather, a rash of forum topics recently have brought the sad realities of CF to the surface. Certain talented people, close to the hard realities CF have risen to the occasion and posted some words of great comfort. No child should precede their parent in death. I have read and learned so much from some surprisingly young CFers as well as teens and young adults. I hope your children get to be among these brilliant, insightful and well grounded people. Do not let them be defined by their bodies' challenges but reinforce their personalities. Amazing how far a person can go by shear force of personality. I am 62years old and I hope to see a genetic based drug for my particular CFTR gene mutations. Just knowing their are 52, 62 and 72 year old CFers participating in this forum site, some of which were lifetime at risk CFers are living quality lives.
 
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LouLou

New member
Welcome back Jana. You and your experience are an asset to our community. I hope you'll stick around albeit it is difficult I am sure. Do you see a counselor regularly? I would think it would be helpful to have a person you can vent to and who can help you track your progress from a professional perspective. But please know we are here for you to vent as well. I think of Xander often.
 
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