"Don’t be afraid that your life will end, be afraid that it will never begin."
Hey there. I read ur message, and I'd like to share my opinions with you. My name is Emily, I am just turning 17, and I have CF. I have known about mine since I was 2 yrs old. I would like to start off by saying that I do not agree with abortion in normal cases, and with your case, I still don't. Don't worry this won't turn into a lecture abt reasons not to get an abortion, as that is none of my business. But I do want you to know, that I think this baby should live. Like the quote at the top, telling us to live our lives to the fullest no matter how short or long it may be. Everyone deserves that chance at life. I do see your point about your baby maybe despising you in the future, but I see that as highly unlikely. Having a chronic illness like CF helps you to realize how much your friends and family love you, and what they would do for you. Yes having CF is definetly a down side in life, but there are so many good things in life that work to balance it out. Family, friends, love and caring, sunny days, snowing days, the beauty of nature and the world around us, and even the possibility of finding that one special person are all a part of the balancing factors. Of course having this illness can mean having hard times in your life, and I don't know if your religious or not, but in the bible God tells us that he will never give us more than we can handle.
CF takes patience and support, love and care. Sometims it takes strength; strength for the patient, strength for the family and friends. Do not forget that not all CF cases are bad. While some people are hospitalized multiple times a year, others, like me, have not been since I was 2 (although there were a few close calls). I have talked to alot of people with worse cases than mine, and not once did they think badly of their parents for passing on the gene. Life is a god given gift meant to give us strength and security, joy and love, friends and family, and any other thing u can think of. Everyone has hard times, CFers just have it a bit harder; but I have no doubt that any of us can pull through.
I know this wasn't the question you asked, and all I can really tell you abt what to expect isn't all that great; but what illness is? Sure you may have to do "pat pats" 3 times a day, deal with constant colds and not to pleasant diapers, coax ur child into taking meds, going to the doctor regularly, and possibly have to be with them in the hospital occasionally. As they get older they will have to adjust to new treatment methods, and start dealing with issues of sickness during school and absences; well they have health plans to help kids like us, so don't worry to much abt that. You see I can't tell you much on what to expect, as my life is only just beginning. I can however, tell you that I believe that you and your baby can make it through this; and if God has other plans then we can't help that, he holds our lives in his hands where he nurtures and loves us all.
I would try turning to God, he really is up there.
I found out my third daughter had cf when she was in my belly too, at 18 weeks.
Today she is three and soooooo beautiful, and very healthy. she takes enzymes before she eats, and 2 drugs in the nebulizer at night before bed.
Just recently I wrote a childrens book. Kyle's First Crush, about a little boy who falls in love with a little girl in pre-k.
The girl in the book is my daughter, ashley elizabeth. Everyone loves her.
I have met many kids with cf, they are all beautiful. Yours will be too. And your baby will live to be old and gray. It is good that you know now, so that you can be prepared. the key is early intervention. The drugs today are great too.
Good Luck, enjoy your special angel.
Post Edited By Moderator (Admin) : 12/27/2006 4:10:19 PM (GMT-7)
I do not have CF but, have had two children who have passed away due to CF. The first was 26 years ago and she was only 4 months old, My son Jason passed away only this past Nov. at the age of 23. I miss them terribly but, despite all of the heartache I am not sorry they were born. My daughter was in the hospital the whole time and treatment has come so far since then. My son led a pretty normal life, only hospitalized two times until his last time. They added so much joy to my life. My son especially since he was with us 23 years. He enjoyed life to the fullest and lived life his way. He touched so many people in his short time here and is an inspiration. He was a Christian so , I know he is now in heaven "running" the streets of gold. Kids with CF are so special. I think they take each day with the knowledge that it is a gift and they know the meaning of "living'. They can teach us so much about how not to take things for granted. Each of us has only a certain number of days on this earth til the Lord takes us home. WE don't know the number of those days whether we are sick or not. There are many sorrows and struggles having a child with CF as I am sure there is with any illness a child may have but, I feel from my heart that the love and closeness and special days they bring to us so much outweigh all the bad. Have your baby and love and cherish each and every day with him/her and know what a true blessing it is.
I wanred to let you know that me and my husband found out in august that our daughter has CF. she was 17 months old. She is doing GREAT!!!! she goes to the doctors once a month. Her lungs are perfectly clear every time we go. you would never know she had the disease she is beautliful and very healthy. she has never been hospitilized with it. she is a very hyper child. she was borm weighing 5lb 15oz and now she is 24lbs and she will be 2 in march. she drinks 4-6 pediasure a day to help her gain weight. that is our biggest struggle getting her to gain. but in aug when we found out she only weighed 18 lb so she has gained 6 pounds since then which is great. she takes 2 breathing treatments a day in her nebulizer. she takes 2 meds in the am in it and 2 in the pm, she does them very well, then she gets the pats after them. she takes an enzyme with every meal and snack which she has gotten used to very well. she is also on a vitamin and zantac 2 times a day. it all becomes a routine for us now. she has not got a bad cold yet. we were upset at first but now that she is on meds for it i feel a lot better about it. I just recently had my 2nd child and we just found out that he is only a carrier of cf which we were so happy to hear, but i to was frightened when i found out about her cause i was already 20 weeks along. but we just hoped for the best but we were prepared for the disease. i wish i would have found out earlier. the earlier you start meds im sure the better. she also has the delta 508 gene. so i would tell you to keep the baby and everything will come out fine. the baby will do great im sure and hopefully they will find a cure for it in there lifetime. the median age for living goes up every year. i love my daughter to death and would never trade her for anything.
hope i helped you out feel free to talk when you need to.