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Any advice
- Thread starter anonymous
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First of all, Congratulations! If I had known before my daughter was born, I think one of the first things I would do is find a pediatrician that knows about cf. They all think they do, but they don't. Find the nearest cf center and ask if the pediatrician currently works with them. You will do a lot with the cf center. Try not to worry and be stressed(easier said than done) it won't help or change anything. Knowing ahead of time will help your baby and you a great deal. Prevention is important with cf. To learn more, go to the Cystic Fibrosis Foundation web site. Remember that everyone with cf is different and has different symptoms. Your child might just not have any symptoms at all when born. I would love to help in any way I can. You can e-mail me at dare2write101@yahoo.com Your child will be a true blessing to you and to others.
The first year is tough, but it is important to allow yourself time to accept it. Try to enjoy your baby and not focus so much time on his condition. He has CF, but there is so much more to your baby than this condition. Try and find another CF parent to talk to, or use sites like this one to make connections. A good dr, which is someone you are comfortable with, is key. Try to inform yourself about CF, but be careful what you read on the internet. Some of it is scary, inaccurate, and outdated.My last piece of advice would be to love your baby, as only a parent can. Enjoy every moment, because our children are our most precious gifts.Here is a writing which someone else once posted, and which I found helpful during a difficult time:Good luck and congratulations on your upcoming birth!"Welcome to Holland"by Emily Pearl Kingsley"I am often asked to describe the experience of raising a child with a disability. To try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo, David, gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland." "HOLLAND?!" you ask. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy." There has been a change in the flight plan. They have landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. Learn a whole new language. You will meet a whole new group of people you would never otherwise have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. However, after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandt. But everyone you know is busy coming and going from Italy, and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that is where I was supposed to go, that is what I had planned." And the pain of that will never, ever go away because the loss of that dream is a very significant loss. However, if you spend your life mourning the fact that you didn't get to Italy, You may never be free to enjoy the very special, the very lovely things about Holland.
Hi,Congradulations on your pregnancy. Having a diagnosis of CF stinks. But it is better to have the diagnosis early rather than late. Since you know now, you can begin to educat yourself about CF, find a doc who you are comfortable with and get info about nutrition and other CF related health matters. You can also join online CF support groups like http://groups.yahoo.com/group/cfparents or one of the others. There is a lot of info out there and some of it will apply to your child right away and some of it won't. My dsughter never really showed any symptoms until she was about 5 months old, but she wasn't diagnosed until she was 9 months.I am expecting now and will have prenatal testing to find out if this child has CF too. I want to know early one way or the other so I can be prepared.Good luck to you and please keep us posted.Andrea
Congratulations are definitely in order. I know it is a tough diagnosis to handle but as each day passes it does get better. These are very special children that have chosen us and you will be amazed at their strength and courage along the way. Please always remember that your child is still normal and can just about anything they want. They lead normal lives, have friends, and bring you as much joy as any other child you may have (if not more). Our children may sometimes be unhealthy but they are still normal.You will learn many life lessons from your child and although I wish my child was not ill, I would not change who she is, and part of who she is is a result of her CF.I wish you and your family the best of luck and much health & happiness.
To whomever wrote that last post.....that was beautifully written....I like the way you said "these are very special children that have chosen us". I was one of those children with CF. I am now 30 and have my own family. I agree that you dont want your child to be sick....being I have one of my own now....who thank God is CF free...but I also believe that this disease is part of who I am. It has made me strong...and it has given me a wonderful outlook on my life. I dont take anything for granted.Dea
DeaI couldn't agree more. I too have CF and sometimes wonder what I would be like without it, since I know CF has made me who I am more than anything else could. I thank god that I have the outlook on life that I have at this point in my life, when some people dont really realize what it is all about until they are old and grey. I am not saying I have figured it all out, but I certainly appreciate every day!
Hello, I'm a 25 yr old male with CF. I've been through a lot in my time and would be willing to talk with or answer any questions you may have about your childs future. Let me know if there is anything I can answer to try and comfort your sitution. CF treatment has come a long way in the past 25 years, I'm sure your son/daughter will recieve excellent treatment. Feel free to contact me any time at "farbeyond1978@yahoo.com"CONGRADULATIONS : )