My son was diagnosed last November, and I have yet to talk with any other moms who are dealing with CF. I would really appreciate some input. Thanks!
All i can really say is to pray to god about it and he will make everything okay. It may not happena s fast as you'd like it to, but trust me if you believe in him and when you pray about you have to calim it in jesus name and he will make sure he takes care of you and your children. Trust me i've been there before. My mom died when i was only 12 and all i knew was my mom and my older brother as my everything and god made it better for us sooner than we thought. So just pray and don't forget to claim whatever you need to happen in jesus name and it will soon happen for you. No joke my friends dad was diagnosed with colon cancer and she didn't even cry she just prayed and claimed it in jesus name and the next the doctor told him he didn't have it and that it was only scar tissue. Wow huh?
I am a grandmother of a CF child not Mom, but I do know how hard it is. They have come so far in the last 20 years we are just praying for a cure. My grandson is not quite 2. Just learn all you can about this awful sickness.
kathy
My husband is 24 years old and we just found out that he has CF. I know most people would ask why he did not find out while he was a child, but he has it in his reproductive system not his lungs. This has caused him to be infertile. We have been trying to be possitive about what is going on. I could only imagine what you are going through as a mother
we aren't dealing with CF ,but have 2 grands who have JD ...juvenile diabetes .... so we along with the parents had to find a new norm also ... they were diagnosed 5 yrs ago and are doing very well.... the best advice we got was to take one day at a time , live it to the fullest and not worry what will be or could be in 5 yrs from now with them ..In reality you have to look ahead , but the 'what if's etc' part we can't dwell on ....I understand your 'new' feelings and will pray for you .Its not easy to watch your child or grand dealing with such ..... we moms are fixers' and want the very best for them ..... God bless you as you deal with this every day ...... I don't think I gave you any help, but wanted to let you know I'm here if you need someone to listen ...Mir B
Hi Holli,
My youngest daughter has Congenital Muscular Dystrophy so I can totally sympathize with how you feel. You never know what is going to happen next. My daughter uses a machine called the Vest that from what I understand a lot of CF patients use to help keep thier airways clear. I live in Louisiana and here we have a program for children birth to 3 years old that is called Early Steps. It is an early intervention program that will help you get the services that you need for your son thru the state. You may want to check in to that if one of your sons docs hasn't already mentioned it. Our new definition of normal is doctor visits every 3 to 6 mos and watching every cold and cough to make sure it doesn't turn in to anything worse. Please feel free to email me if you want to talk. I understand how nerve racking and heart breaking having a special needs child is.
Holli,
I grew up with CF in my family, so somewhat know what you're dealing with although both my children are cf free. If you are in Tulsa area, the following link may be helpful. They
could probably even direct you to other groups etc.
God bless you & your little angels.
http://cf-solutions.org
Contact Haley's Mom at this website....http://www.caringbridge.org/visit/haleypalmer Haley lives here in Owasso and has been through the ringer. Her Mom can give you lots of info and resources. Her Mom's name is Jennifer (goes by Jenn).
There is a website you can check out, and it is called caringbridge.org. There are people from all over who are in the same situation, and they can keep you updated, and you can keep others updated on everything that's happening. My cousin's daughter was born with a heart defect, and they used this website. There will probably be a lot more moms able to help with advice through thst website, because it is set up specifically for that reason. Good Luckto your family!!!!
Hi! I am a mom of two children with CF, my son is 9 and my daughter is 12. I am here for any questions, concerns or venting you may have!
Trish J in Arkansas
[email protected]
Im so sorry that you are having to deal with this with your baby!! I had to deal with it with my ex husband who is now 24 years old and holding up just fine but he does other things that he shouldnt do especially having CF so now I think that what ever happens happens but he was really scared when he was about 22 going on 23 cause his brother died of CF at 23. But I know his sister could have been CF doctor if she wanted to be she knew so much about it and in return tought me so much about the disease and its horrible, but I know that they are working hard on treatments ect. I used to be apart of the CF orginization and we did lots of fundrasiers and things like that it was alot of fun and I loved it but as time goes by you realize that the person with CF just isnt going to be there forever and it hits you hard and I know this all to well! Alot of the times they are steril so will never have children atleast for the mans side of it Im not so sure on the womens side and they just get so caught up in dying that they dont care anymore, thats where you step in and say no this is worth the fight its worth all the treatments you might go through its worth everything and that gives them hope for the future....so they dont go down the same path my ex did and decided that he was going to die anyways soon. So why not live life to the fullest and Im not against that in any way I think that anyone with CF should live life to the fullest but not the way he was talking...hes now in prison and has been transported many times to the hospital for phnemonia which is not rare in CF..and sadly he will probably spend the remaining of his life there and thats not living life to the fullest in my eyes, I dont mind wanting to go places and do things but what he was doing was the wrong things to handle his desease ie; drugs, breaking into homes 100,000 dollars worth of things stolen ect. I would encourage your daughter to do the things she has always wanted to do and let this be a good time for her you know sports and things like that are what a doctor would say out of the question because of all the breathing problems but if thats what she wants to do let her, worry for her like any mother would do but try and keep that to you and not show it to her or scare her, I dont know how old she is but but if she is old enough to understand her disease maybe she should do some research on it with your help and learn more about what is going on with her body especially her lungs so that she can make the right choices in life and not smoke or do anything that could harm her lungs in any way since of course she has this disease...I really am sorry that you are going through this is was really hard for me just with my husband at the time and I couldnt imagine it being one of my children, there is another group I dont know if you have heard of it but its called mommyspace.com and its kind of like myspace only its for mommies and I am almost positive that there is a group for moms dealing with their childrens diseases or something and if not by all means create one and that way you have the support of the mommyspace group and the people are all wonderful and I really think that, that group is more what your looking for and I really think that you find more mommies dealing with the same issues as you and your baby. So check it out and you can look me up or I will know when you have logged into or "joined" the group and I can kind of guide you around a little and show you how to start a group if there isnt already one there! I hope this helps and although I havent dealt with it with my own kids I have met sooooo many children with CF and of course dealt with it with a husband and I know how terrible it is but I do have to say that the statistics are going up of how many children live long after 18 and thats a blessing all in itself, so keep your chin up and check out the site and see if you like it I really think it would help you and other mommies talk about this horrible disease!! GodBless and give your daughter lots of hugs and kisses for me cause I can only imagine how she feels about all of this!! I hope this helps a little bit!! Oh and sorry I now realize it is your son so change all the shes and her to his or him!! Sorry hunny godbless you and your children I only wish the best for them!! WWW.Mommyspace.com
My friend is dealing with this same thing. I dont know where you are located but i could see if she would allow me to give you her phone number she lives in Ada, Oklahoma. Let me know if that is something that interests you. Her son is 10 months old.
Hi, my name is Stephanie. My son Mark is 9 and has CF. He was disgnosed when he was 2. My email is [email protected] if you want to talk sometime. I completely understand about redefining the word normal.