Dealing with this all....

[anonymous]

I am the mother of a little girl named abby who is 16 months old. She was diagignosed with CF right after birth, although I was told the amnio showed nothing(they never tested for the CF...) So I knew that she could have it, and then when I was told no after the amnio, I stopped preparing myself for it. I had to go through it all over after she was tested positive. She has been relatively healthy. One bout of pseudimonis and nothing else so far. I am having a touhg time dealing with the thought that I could loose her someday. I am in the health field and know the great advanses they had made and are making, but I find my mind wondering alot latley that "what if's..." How can I help myself get through this? Please help.
Monica

 

[JazzysMom]

As a mother, in general, I understand the worries. You would have those worries regarding your child having to face the world not including the CF. I have those worries about leaving my daughter without a Mom or my husband juggling things as a single Dad. However; I also found that we have some of the best relationships I know. I am one that even tho I would like a lot more time with someone, I will take whatever time I have as long as its quality. You could drive yourself insane with allowing the "unnecessary" worrying to infiltrate your life. There will be times to worry & times to be concerned (there is a difference) & times where you dont have to do either. Enjoy your daughter. If you feel yourself panicking---literally stop yourself. Talk to yourself & realize that everything will be ok. You cant predict the future. I lost my oldest nephew in a car accident 8 years ago. A few months later I was pregnant. Who would have ever thought?! Some people call it destiny, luck or some think we decide our own fait (sp?).

 

[anonymous]

it's not about "what if", it's about "what is".

 

[proudmom2lilCFer]

I agree with the original poster. Always in the back of my mind there was the thougt that someday I would loose my son. It recently became more real to me, when my 4 week old niece passed away this last Tuesday. My family is grieving this horrible lose, and I see how torn apart her mother is, and I think, that could be me. The only death we have ever had in our family was my great-grandpa who was very very ill, and nearing 100 years old. So it was sad, but not a huge shock to us. I have never known a lose of a child. I know life has to go on, but I don't know how. Is their anyone on here that has lost a child? Is there anything that I can do or say to help anyone in my family with this grieving, and how do I stop thinking that this may happen to my son?

 

[proudmom2lilCFer]

I was asked today to write the obituary for this little girl. Has anyone ever had to write one? I feel like there is nothing in the world that I can write that would be good enough. You can't put into words how special your children are.

 

[anonymous]

I am so very sorry for your loss. I lost my niece several years ago. She was also about 4 weeks old. They labeled her death as SIDS. I think only time will ease the pain. As for the obituary, I'm not sure. I would say just write from your heart. Good luck and God bless you. I will be thinking of you and your family.