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Angry
- Thread starter anonymous
- Start date
Getting a CF diagnosis is like losing the perfect child you thought you had, you will grieve for them and anger is part of the grief process. Soon you will realize that it is better to have the diagnosis because you will be able to get your son the treatment he needs. I am sorry to hear that your son has CF.Andreamom of Rachel, 5 with CF If you need a great online support group check out http:/groups.yahoo.com/group/cfparents The folks there are great!
The first time you hear that your child has CF it overwhelms you with guilt. You find yourself asking why your child? And what did you and your child do to deserve this? It's good to be angry to a certain degree. Angry people fight harder than most. Read and learn all you can about this disease, and know this......A child today with CF has so much better care than in the past. Do what you can to get the best doctors you can find, ask alot of questions. Don't be afraid to change doctors if your doctor cannot answer your questions. My son will be 3 years old in January. We moved over 350 miles to get better care for him, and it was worth every mile. I would have took a job at Circle K to have made it work. Another thing that has worked for us, Don't treat your child any different than you would another child just because they are sick. Let them live, Let them learn, and Let them eat. My heart goes out to you and yours. Keep your chin up.Sincerily,Troy Father of a beautiful son with CFPS: My wife also has a brother that just turned 32 with CF and is doing great.
When we got the diagnosis I can remember exactly the moment, where I was looking, what I felt. The cold, white wall of the hospital exam room is all I could see and there was no sound coming from my wide open mouth (picture Munch's The Scream).10 years later and I almost forget she has the disease. Then we go to the hospital and I have to remind her to eat, and I realize how thin she is.Anger? No. Sadness? Occassionally. Hopeful? Always.Allen
Angry...That is an understatement. It is a mix of emotions that you must go through before you "accept" (if that is ever possible) the diagnosis. Our daughter was diagnosed 3 years ago and I too can remember the dr., the cold hospital room, and the feelings I felt. I would be more worried if you weren't angry. If I have to give you any advice it would be to allow yourself time to grieve. Although it is a disease you must still allow your self time to grieve the loss of your childs health. I never allowed myself time to deal with and accept the CF. Three years later I found myself burnt out and unable to take care of my daughter. Thankfully my husband took over and I learned that as important as it is to take care of my daughter, I must also take care of myself. They learn by example and if we take care of ourselves then we show our children how to take care of themselves.Do not feel guilty, but accept it as part of the process. Your son will lead a normal life. These children choose us and they are so special. As much as I wish she wasn't sick, I would not change anything about her. CF is part of who she is and has affected our family profoundly. Some days are difficult but you cherish the days when your child is healthy. My personal experience is that the first year was the hardest and Xmas is the worst time of year for me because nobody can give me what I truly want (a cure). Other than that it is part of our lives and who we are.I wish you the best of luck. A cure or control is around the corner, and we will all celebrate together.AM
Yes, anger is a very normal emotion to experience with your child's dx. of CF. I can clearly remember the day my son was dx. Fortunately, I live in WI, one of the few states that screens for CF with the Newborn Screening Tool. I was told by my MD at his one week check up that he tested positive for CF. I will never forget the way I felt when those words came out of her mouth. Looking back now, almost 2 years later, I am so thankful he was diagnosed as early as he was so he could get started on all of the necessary treatments/medications. Hang in there. My biggest regret is for my son's first few months of life, all I was focused on was how angry I was that he had this disease. If all you do is focus on how angry you are about the disease, you will miss out on so many precious things in your child's life. Sure, every day you are reminded about the disease, i.e: CPT, enzymes, nebs, etc. but don't let these reminders take over you or your child's life. Overall, I think my son's diagnoses has made me appreciate life and all of the little things in life that much more. Best of luck to you and your child.JodiMother of a beautiful son, Tucker, who has CF - almost 2 yrs. old
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I AM A GRANDPARENT OF A CHILD WITHE CF, I WAS VERY UPSET WHEN WE FOUND OUT HE HAD CF.HE WAS 9 YEARS OLD AT THE TIME,HE IS NOW 16,,,THE BIGGEST PROBLEM IS WHEN THEY GET OLDER IT VERY HARD TO GET THEM TO DO THEIR TREATMENTS THE WAY THEY SHOULD.MY GRANSON WEARS A VEST AND DOES HIS BREATHING TREATMENTS,BUT HE SHOULD COUGH WHEN HE DOES,BUT MOST OF THE TIME HE JUST WANTS TO GET DONE,AND DOESNT COUGHT UP ANY MUCUS,.THIS IS NOT GOOD.
hi there, i dont know if where you live but the only teenage support site i know of is a british one at www.cftrust.org.uk the meeting point for teenagers is called talk. otherwise he could always leave messages on the adult part of this site, im sure people will reply and support him <img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm impressed that your grandson will use the vest, my 14yr old son (diagnoised on 1 yr. ago) wasshown the vest at a Dr. visit and he will NOT use it. He uses a flutter (small hand held device) but gettinghim to even to that on a daily basis is hard. I too do not think my son is coughing as he should to getout mucus and as a mother................. asking him to do so he sees it as nagging........ my son also seemsto do the flutter just long enough.... to say he did it. He explains it to me that he doesn't want to "have"to do his treatments because it makes him feel different and at that age I understand kids just want tofeel like eveyone and fit in.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Doing his treatments will still help him to loosen the mucus in his lungs and it wil come up later. Just be happy he does his treatments. I have CF and once I turned 16 I never did my treatments. I ended up being hospitalized every year since I was 18. I am 22 now and hope I can eventually go one year wihtout having to be hospitalized. I am learning to do my treatments on my own because I never have. It is really hard to accept this disease when we look normal like everynoe else, we want to live our lives "normal" too. Just tell him you are proud of him for handeling his situation in a mature way. He should feel proud of himself.Jenny 22 W/CF
Thanks Jenny! My son does his treatments all himself and we've also taught him how to do hisPIC line meds when hes been on a round of those at home for weeks............. ( so if I'm late getting home he can start them) no matter how muchI want to protect him,,,,,,,, I also know that he needs to take responsibility for his health. Thanks for your honesty about no doing your treatments for that time in your life. My son is a great kid and Iknow he will be able to handle this curve in life!
hii found out at birth almost five years ago that my third son sam had cf, had to have the other two tested. was scared to death at the thought of all three having it. angry? you bet, still, yes at certain times things will anger me, but im more sad and nostalgic and trying to focus on the positives. I hate to hear people talking about illnesses like strep throat ear infec, and so forth. we have to worry so much more, but our children are such fighters and have wonderful personalities. its not fair and i still get sad, but it will be allright, whent hey are sick its scary. but when they are healthy its great. nothing has made me appreciate life like sam.i wish you well, the total anger will stop and then it will be more occcasional,here's to you!Juliet and the three muskateers
<img src="i/expressions/brokenheart.gif" border="0"> I'M SORRY TO HEAR OF YOUR SADDNESS I WILL ALWAYS AND FOREVER REMEMBER THE PAIN I HAD FOR MY SISTER SHE PASSED AWAY ONE YEAR AGO THE 19TH. HER NAME WAS NELLIE SHE HAD TURNED 25 ITS A REAL HARD THING TO DEAL WITH KNOWING THERE IS NO MEDICINE THAT WILL LET THEM LIVE FOREVER I'M WISHING YOU THE BEST OF LUCK AND PRAY ALOT LET YOUR CHILD KNOW EVERYDAY THERE IS ALOT OF LOVE AND YOU'LL ALWAYS BE THERE FOR THEM AND TREAT THEM DIFFERENT FROM OTHERS BEST WISHES ALWAYS INZA
I think the most difficult thing to convey to youngsters with CF - is that doing their treatment NOW will benefit them in the future. In the teen years all kids want to be normal and having CF, taking pills and doing therapy is far from that. It is hard to see now, but in 10 years or 20 years, that is living and being independent. What I mean is as great as the teen years seem when they are in them, the best parts of life are living, every year is great and every year gets better. If therapy isn't done than there can be no future to look forward to. There is a bumpy road ahead but sometimes you find a path that is smooth. I am 26, attending college fulltime and do three hours of therapy a day, and these years have been the best time of my life. The other trick is to surround yourself with supportive friends, if they aren's supportive then they aren't your friend. I feel for teenagers with CF, I really do, I just wish I could get them to understand that if they take care of themselves now, there is an excellent chance for a great future, if they don't then they will be sick and not able to enjoy it as well. We can't change the fact we have CF, but we can put ourselves in a positive mindset that we can find peace in the fact we are still here on this earth, as bad as it seems at times, it could be so much worse.Sarah26 w/CF
Anger is the natural emotion. I am the father of two girls with CF. I remember when they were diagnosed, I had REAL anger problems. The older is 26 and doing her student teaching. Unfortunately, our younger duaghter passed away on January 9th this year. She had graduated from college 2002 and was married to the love of her life for 17 months. The girls were diagnosed in 1980. My advise to any CF parent is to let your children live as normal a life as you can. Don't put them in a bubble. We decided early after the diagnosis that God had given them to us and they would live as long as He intended. They were in marching band, worked part time and then full time jobs, we traveled (and ingnored the coughing comments in restaurants). But the memories that we have and they have will never be replaced with regrets. Love your children, take care of them the best you can, support them in whatever they do, and be as normal a family as you can be.