Fear and hard choices

[EmilysMom]

I think I would take the opportunity to have a healthy Emily, but since that opportunity doesn't exist, I would never give back the Emily we have. CF has made her the person she has grown into and has shaped our family into what it is. Life would have been so DIFFERENT without CF. Good and bad! Would we liked to have experienced that? SURE, but again, CF has made us what we are today and since there is no going back....we take what we are and what we have and are happy with that!

Some of the comments were just a little rough when responding to someone waiting for test results and looking for answers and support. Try and be a little more gentle!

 

[anonymous]

First of all CONGRADULATIONS!!!! This is a very exciting time and don't worry to much and rune what a fun time this is.
I am a 19 year old with CF and I completely agree with Emily and Kelli. I would not change my life for anything. For the same reasons and more. Because of Cystic Fibrosis I have always view life diffrent then the people around me and I have never took for granit the little things that alot of people have. But as for me and I can only speak for me I have always viewed Cystic Fibrosis as a blessing for all the reasons listed above. I love my life and wouldn't change it for anything. And when I get married and find out that my husband is a carrier It would not change my mind about having kids one bit. I would still have a kid and if they had CF I would love them as much as if they didn't and I would just hope that they would have the same view on life as me. To tell you a little about me I have ok C.F not severe but not mild. I am usually in the hospital 2 a year. But my whole life I have played sports from soccer, to vollyball, baseball and I even ran track in high school. Never a big problem, and just as mentioned earlier on this sight exercise is one of the main things that is going to help anyone with C.F. I go camping probley 2 to 3 months out of the year (even with my severe allergys) and love every moment of it. I will not live my life around Cystic Fibrosis it has to live its life around me. I will never let it stop me from doing anything. And as for what a couple of people have said on this sight it makes me mader then MAD. They have no right to tell you what to do just from on bad experince. And to never give that baby a chance to live I'm sorry but no one has that choice but god if he gave you a baby then he wanted you to have it even if it has CF if he didn't think you could handle it then he wouldnt of gave it to you. Hey you never now your baby could have very mild cf and die of old age not CF and you could have taken that away from them. Im sorry I usually stay out of all the confrentation but it peves me right off that someone could say that. But just know that we all have bumps in the road and everyone ends up dieing with some kind of a disease weither it be something mild like depression or something more severe like CF or cancer. You never know you just have to live life to its fullest. I also want you to know that alot of people with CF that I have talked to do not hate their life. We all go threw a phase that we feel picked on but for the most part I think that we all love are lives. Sorry this is so long and I hope that it helps you out. Again Congradulations!
Shavonica 19 f w/CF

 

[anonymous]

im a sophmore at red bluff high school, last week i was assigned to do an essay on cystic fibrosis. i have to interview someone and ask them 10 questions. im lost and confused about this disorder. from what iv heard its bad, and i hope you can take the time out of your day to help me with my essay, it woud help me,lt would be a great experience for me since i want to be a nurse. i would appprciate it so much and be so thatnkful if youd help me. my name is destiny my email is destiny96022@yahoo.com

 

[vickysmommy]

Arthur
I'd like to say that I dont blame you for turning to us for support on this issue. I would do the same, cause doctors dont know what we really go through. Id like to tell you about what I experienced as a child with CF.
Luckily I was raised by my stepmom who was a Nurse. She kept up on all my meds and did what the doctors said. She made sure I lived as normal of a childhood as my brothers and sisters. I plaed Tee-Ball, softball, played football with my brothers all the time, raised animals and showed them. I loved my childhood, I didnt even feel like I had CF until I was forced to do my treatments and chest therapy every day. I think my parent's persistance with my medications and pounding on me three times a day is why I am so healthy today. Dont get me wrong, I was sick, mostly when I was a baby, but that was when they didnt know too much about the illness. They said I would be lucky to live past my 5th birthday. Well I hope your baby doesnt have it, but if he or she does, dont panic, just have patience and take good care of that baby so it can live a long and healthy life. Remember its not the end of the world.

 

[anonymous]

Arthur,

I talked to a wonderful woman with CF last night who is 44, turning 45 this summer. I can't remember ever meeting such a warm, outgoing, happy, dynamic person. She is extremely active, and leads a life that I, as a "healthy" 30 year old, am jealous of. She bikes, rows, climbs mountains and has even run a marathon.

She takes very good care of herself, and since she was diagnosed right after birth, (surprising and wonderful considering she was born in 1960), she has been able to monitor and take care of her CF her entire life.

There have been a few negative posts on this board, but I think you will find that the majority of people are positive and upbeat, and I don't think any parent of a child with CF would EVER wish they hadn't had their little baby.

Best wishes for you and your wife, and congratulations on your soon arrival!

 

[anonymous]

My daughter was born 15 years ago with severe disabilities. She is mentally retarded, non verbal, seizure disorder, lots of medical issues, etc. Then at 10 yrs. old she was diagnosed with CF. Wow that was difficult!!! To date, her one mutation is unknown.....can't even test her brother, 22yrs. and sister, 18 yrs.!!!

But Lauren is the sweetest, loving, happiest kid you will ever meet. She has blessed our family with so much, we are better people. Yes life is difficult but it is all God's plan for us and my other two children have benefitted greatly from having Lauren as their sister. My advice is accept God's plan and He will be there for you. Good Luck with your tests.

 

[dresapp]

I am 23, I have CF and I need a lung and liver transplant because of My CF. While I agree that CF can be difficult, it also has made who I am. I have still done some great things in my life that I wouldnt trade for anything. I love my life regardless and my parents raised 2 children with CF, knowing that there was a chance that we both would have it they took the chance. Why? My mother said that God or whatever higher power must have thought she could handle it as could we. I believe we all have a purpose in life and being born with a disease is just another challenge. As I look at it, it has kept me away from drugs, and getting into trouble as a kid because I had to be responsible. Id much sooner have CF than be one of the many kids Ive seen growing up screwing up their lives with drugs, alchohol and whatever else. I know ive touched ppls lives and educated them and made them more compassionate of other ppls needs as well as my self. So I would live this life over.
If I was a parent of possible CF person I dont think I could terminate the pregnancy. No child is ever perfect nor is any person. Just ask those parents of children born with disablilites. The world isnt perfect and if we "terminated" every pregnancy of every person who wasnt without some health or potential health problem there wouldnt be many of us left. Its not our job to always play God.

As for the Gentalmen who posted in the first place, consider it a challenge and meet it. Your wife miscarried the first time, possibly for a good reason but this child may be a true gift to you both. Be grateful for what you do have. Good luck

 

[WinAce]

There seems to be some equivocation going on between those who've already led lives with CF, for better or worse, and those that remain potentialities. Would you want to kill a child (or adult) with an illness? No. Would you want to have a child without illness, instead, if you still had the choice? I'll let you answer that, but trust it's obvious enough. So, do you want to introduce another, quite disadvantaged person into this already overcrowded world, one who'll suffer through everything this disease has to offer, or skip on that and decide to have a healthy kid down the line, instead, perhaps?

For me, the reasonable course of action would be a slam-dunk. It's not a choice between having a sick kid, and depriving a sick kid of life. If the worst happens and he's ill, and you still have him, you'll just as well be depriving life to a healthy kid that you could potentially have instead, one who could likely enjoy life that much more and not have to worry about dying at 15. But at least in this country, no one can make that decision for you; I sincerely hope you make one you'll never regret.

 

[anonymous]

Arthur I really hope some of these replies have given you the encouragement you were seeking. I see healthy people doing far more than I can ever hope to cope with but have learnt over the years to accept what I have and moved on to accomplish a reasonably fullfilling life. I know when I met my partner we discussed many issues, one of them was, what if I was to conceive a baby and found out it was not going to be healthy, it was not going to be an issue with us... we wanted a baby anyway. Life is beautiful. I would not have stayed with him if he believed in abortion. That is how strongly I felt at the time. We all have different opinions, and they can change over the years. It would be interesting to know how you and your wife are progressing. I hope her health is good. All the very best.

 

[anonymous]

To WinAce's sincere hope that no one makes the decision to have a CF baby and then regrets it later, I have never heard any parent wish they had not had their child. Whether their child has CF or another illness, I don't think any parent ever wishes their baby wasn't born, and Lauren's mothers post is an example of that.

Do you think your parents wish they hadn't had you?

 

[anonymous]

I believe from my own experience, it is easier for non CF parents to raise children regardless of a illness, because they are essentially the healthy ones, being a parent with CF, although it has bought me much joy in life, I used to live with with a little guilt at times [when my child was school-age] I felt I did not have the energy to participate in my childs activities. I have been told in recent years {as an adult} I was always a good loving Mum. Even now, if there was some way I could boost my energy levels life would not be soooooooo frustrating. Fatigue from constant coughing is soul destroying.!!

 

[anonymous]

Dear Arthur;
I am only a good friend to a CF mother and child so I don't have the experience as a CF patient or parent. Except for the one time I kept Renee while her parents went on vacation alone. Everytime I wanted to leave I realized I hadn't given her her vest yet and then everything came to a hault. It was quite an experience the five days Renee and her siblings spent with us. I had a chance to see what my friend and her family go through.

I wanted to reply with a message about my own child. She is moderately retarted. "Retarded" is a bad word from my day. I am 33. But really it just means "delay". My daughter is 11 and acts like a four year old. She is beautiful and looks like she is 13. This really is hard for all of us because she looks older than she is and acts so much younger. When people meet my daughter they don't know right away that she is handicapped because she doesn't display any physical abnormalties. Some times I have a pity party for myself because I wanted so much more for her. She won't go to college or even drive a car. She won't get married or give me grandchildren. But she has added so much to our lives. She is compassionate and humorous. She is sincere and loves music, dancing, movies and video games. If she could lead a "normal" life that would be wonderful but honestly I couldn't imagine things any differently than they are. She has friends and a church family that adore her. Not to say she doesn't get on the nerves of others but what kid doesn't? If you ever check this site again I would love to hear from you via email. I need to add; I work in a classroom of special education children. They all have something endearing to add to our lives. At least if your child has CF; they can lead a fairly normal life enjoying education, marriage and possibly children.

Sincerely,
goldie

goldiefraley89@yahoo.com


CFFriend<img src="i/expressions/sun.gif" border="0">

 

[anonymous]

Hello Goldie, that was lovely letter. Many of us are given difficult challenges in life. You seem to be a loving, and patient Mum, keep it up. Just love the idea of pity parties, I have them on occasion too. It's good to be able to share trials, tribulations and tears with fun-loving like-minded friends, a great tonic! I too feel for Arthur and his wife, I trust they are both well, I share their personal anguish but also know CF is not the end of the world. I am 53, had some 'bad moments' with CF, but on the whole I have led a wonderfully fulfilling life.
Cheers Eileen<img src="i/expressions/wine.gif" border="0"><img src="i/expressions/sun.gif" border="0">