for the parents who have kids with cf

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Date Joined Jan 2006
Total Posts : 47
   Posted 4/10/2006 7:45 PM (GMT -7)   
confused  i have a question for the parents with kids with cf, well today we just found out that my lil baby brother 12 yrs old also has cf, however, my mom is feeling sorry for herself. why? thinks shes the one being punished. said she doesnt wanna see her oldest and youngest go thru what my sister did and die. hello. how are we suspose to feel? i mean dont she think i think about this all the time? im holding on to life with everything i have i mean the stupid disease is progressing fast. my eneymes arent working ne more. i have diabetes developing and they r talking about a pancreas transplant, however im not feeling sorry for my self. stuff happens life goes on. u fight and u fight and u fight until there is no fighting left in you. im gonna live to be 60 one day. just watch and see. why would someone call me crying when im barly hanging on? i know its sad my bro has it too. and i feel really bad for him. but hes like me. strongwilled. i wish none of this happened too but im not gonna sit and dwell on the past. we both lived longer than my sister. she was only 9 when she died and i was a whimp before she died but when she passed she passed something of her along to me. thats her willpower. now i have it. i just dont understand what dwelling feeling sorry for yourself is gonna achieve. can someone please explain it to me? do any of ya feel sorry for yourself cuz ya kids have cf? or is it just my mother?

Regular Member

Date Joined Sep 2005
Total Posts : 318
   Posted 4/11/2006 6:56 AM (GMT -7)   
Hi Tricia,

This is a very touchy topic for me, but, will try to answer you from how your mother feels. I cannot truely answer you on how you feel because I don't have CF.

To answer you, yes. The bond when we bear children is too strong to mention. At the moment of diagnosis of CF in our children, we start the grieving process as if we are loosing our children from that very moment, the grieving never stops. One minute we feel optimistic, the next we don't. Our feelings are like roller coasters. Since you have lost a sibling, the grieving process was very hard and you felt totally torn apart. This is how your mom feels but "worse", and yet another grieving process has begun with your brothers diagnosis. She grieves for all her children that have CF. Thats tripled.

You Tricia, is her best friend whether things are good, bad, or indifferent between you. The bond of having YOU, is still there that she holds close to her heart. She feels as tho, somehow, you will comfort her. Her feelings are torn apart right now with each diagnosis of her children. She needs you to help her sort things out to gain strength to keep going.

Often enough, I have felt so guilty and very very sad, my feelings were on the floor and in the hole. It's so hard to bear that my children will not live a long life like most children do. Thats what we expect when we decide to have children, and then boom! it hits us and drops us down like a ton of bricks. It's horrible.

A co-worker of mine, often reminds me when I am feeling down, your children are only on loan to you Kathy. You have to be strong for them. Or even sometimes, when I am feeling down, I will see other children who have it much worse than my children do. If I did not have these things happen to me, then I would not have the willpower to keep on going. I could go on with alot more, but the tears are rolling down right now just typing this post. heart goes out to you!, your mom, and your whole family!!. I cannot even imagine how you must feel. Many Many Many HUGS!! (((((((((Tricia))))))))
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough" would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
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