EXTREMELY more sad than I've ever been!

[ErinsMommy]

Well...
I slept at the hosptial with Erin last night. I wanted to be there when the surgeons got there in the morning. They got there about 7:00 and they told me that Erin's test results came back and she has tested positive for cystic fibrosis.
I mean... I already knew that she had it. All signs pointed to "yes" and her doctors said they were 98% sure that she had CF with everything that she's been going through. So... basically they just confirmed what I already knew. But it still hurts.
I know that I am not the only one here that has gone through this, or even that might be going through this right now. But I can't even begin to explain how sad I am today. I dreaded this day and after they told me the news... all I could do was look at her... and apologize. I know that it's not my fault that her father and I carry the gene... but for some reason, I still feel guilty. I wish that I could take the disease for her. I honestly wish that <i>I</i> could have CF and NOT my precious baby.
I'm sorry... I'm just venting. I'm completely miserable right now and I have no idea where to go from here.

-Lindsay

 

[JazzysMom]

Lindsay, I am sorry that the 2% possibility of it not being CF didnt come through. As you will hear time & time again, it does get easier. Once the initial shock (its a shock no matter how prepared you think you were) wears off & you establish your feet, you will be fine. You have saved your daughter a lot of possible problems by finding out early. I am not just talking physically. I remember my first 2 years of school (especially Kindergarden) being hell because of the chronic diahrea/cramps/gas. I remember making a mess in my pants because I was told I couldnt go to the bathroom again before naptime. Even tho I had gone diahrea doesnt wait. It sticks in my mind like yesterday. Please, please, please try to remember that if it had to happen, you are so lucky for it to be this day & age with so much to offer in healthcare! God Bless!

 

[anonymous]

I have been there in your shoes except for the blockage and stuff. Saydee was born csection on 11/18/04 and New York State has the new newborn screen for cf. She was 4 weeks old and I got a call from her ped. that the screening came backand she had to go for a sweat test but she said the worst case is she would be a carrier. So the following week Jan.2 we drove to Albany. My husband went to work because we were told the worst case is she would be a carrier.No big deal.So we went to the cf clinic to get it done and the lady that did the sweat test told me not to worry that she didn't have it just look how healthy she is.I took my time going home saying ok she doesn't have it. I got home and waited for the phone call to let me know the results were in. They had said around 4:30 5:00.5 came and gone so did 530 finally the phone rang and it was her Ped. That is when I knew it was positive. I didn't know what to do or feel. I never felt guilty but I did cry. Then I had her first visit and learned so much and with all the research I did I realized it could be alot worse. Now I don't even think about tomorrow just enjoy today. If not I would drive myself crazy and I have 2 others to take care of too. They had sweat tests done and they are negetive. Saydee carriers the f508 most common mutation but also carries 991_995 full sequence deletion on top of this she has a variation E1228K novel variant that has never been seen or recorded. The rare mutation has only been recorded once. The have no idea what her life is going to be like. But she is healthy. She did just culture Psued. though so they put her on cipro for 2 weeks and Tobi which is an inhailed antibiotic. Good luck and she will be ok. Just cherish every moment.
Katina Mom of Saydee w/cf 8 months
Ethan w/o cf 8yrs
Keriona w/o cf 3yrs

 

[CFHockeyMom]

Hi Lindsay,

Well there are definitely a lot of people here who know exactly how you feel. It's devistating to hear that your child has CF. You will be sad. You will grieve. Just know that things will get better. Our first year was very tough but we got through it and CF took a back seat to life; a fairly normal life. Sure when Sean gets a cold I cringe and wonder if it will turn into something more but really we're just enjoying him for him and most days I don't even think about CF.

You'll be amazed how strong you and your daughter are. I've learned so much from my CFer. There are some days I actually think it's a blessing in disguise. That's not to say there still aren't times when I'm incredibly sad and the reality of CF hits me but there are a lot of things to be positive about. Treatments are getting better and better all the time. Keep you chin up; brighter days are just around the corner.

Make sure you read as many positive posts as possible. There are lots <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Lindsay,

My heart goes out to you. I know how it feels to finally get the diagnosis. Today will be hard, as well as tomorrow and the next day, but it DOES get better. To me, the pain seemed to lessen each day. I have good days and bad days when I am really sad. But the treatments these days are so much better and more advanced. Your little girl will be different, but very special. I celebrate every little thing, like the first time my Daughter pointed at the dog and barks, (or even the cat, sometimes, he he). Each day is a gift! <img src="i/expressions/heart.gif" border="0"><img src="i/expressions/present.gif" border="0"><img src="i/expressions/heart.gif" border="0">

It's ok to be sad, but also look forward to the future you will have with Erin, because she has a long life ahead of her, and say prayers for the doctors and the scientits and others who are working toward a cure for CF. Come back to the message boards as often as necessary. We are all here to support you & your family!

Cindy - Mom of 22 mo old Daughter w/CF

 

[anonymous]

Learning that my daughter (also an Erin) was diagnosed w/ CF has taught me more about life than I could have ever imagined. Things that use to seem so important are really not...so I look at my daughter's CF as a blessing in a weird sort of way. While the initial shock/sadness of the news will make you depressed, I assure you it will get better and will make you and your family stronger. I remember like it was yesterday when we found out...but with time you will see it just becomes a way of life and does not change who she is, or what she WILL become. And I will not lie...there will be days down the road when you think all is well and you just break down and cry for no reason...it is natural. Just stay positive and give her the childhood and upbringing that you have always envisioned. Things will be ok, despite how you are feeling right now. Give it time...I promise

If you need to talk you can always e-mail me or my wife (Karon) at curecf@adelphia.net.

vr, Sean
father of Erin, 3 w/cf

 

[anonymous]

ErinsMom - I know it must feel pretty terrible right now... But you have to listen to me here. The thing is, I know you'll think I'm nuts at first glance. But there are definitely positive sides to having CF. She will more than likely mature into a lovely person, she'll be intelligent, she'll understand more about her health than most adults do. She'll appreciate every day she gets. She'll enjoy all the little things that most people take for granted. You must've heard this already and thought something like "oh yeah well they have to find something good about it" but I'm 100% serious, and it's all very true. At least it is with me. I get a kick out of the stupidest stuff. One time Mike and I were walking up my street outside. Then it started raining, and I just stood there, laughing. He did the same. That's another thing, those around your little CFer will enjoy more than they would otherwise too. Mike enjoys a lot more of the little things than he did before he started dating me.

Then there's always the HUGE advantage she has of being born in 2005. There are so many up-sides to that, it's impossible to comprehend, as some of what will help your daughter hasn't even been invented or found yet. Take this for example, though: I was born in 1984 and my parents were told I likely wouldn't see 18. Now I'm 21 and the average has bumped up to 32. Your daughter is still under a year old and the average is 32 right now. Imagine, by the time she's my age it'll probably be up somewhere around 50-something.

-Sorry I'm not signed in... I'm at work.
Emily65Roses
Emily 21 w/CF

 

[anonymous]

Big Hugs to you Sweetie! I remember when Sydney's sweat test came back as CF and they told us that Sydney was going to have a second sweat test (which is standard procedure) the next day. I prayed and prayed that it would come back normal, even though my heart already knew it wouldn't. It the hope is just sorta gone once it is considered "official". But as others have said, you will have hope again, it just takes time. I really never felt any guilt for giving it to her but did/do wish that I could take it from her. I feel alot like Sean does as far as the blessings that CF has brought to our lives. Somedays I REALLY have to look deep for the blessings and other days they are just so clear to us. Hang in there, it really will get better.

Hugs,
Kelli (mom of Sydney 2wcf)

 

[lovemygirl]

Lindsay,
You will never forget this day and how sad you were. I remember very specific details of the diagnosis, and the days following. It is ok to be angry, sad, and to feel guilty. The first year is tough because you need to grieve the loss of her health. There are days when I wonder how we got through that time in our lives because it is so hard, and very few people around you will understand your pain because they cannot experience it.
My daughter was diagnosed in Sept 2000 at 2 months old, and will be 5 this month. She is doing well and we are fortunate to have been blessed with her.
Whenever I find that I am having trouble coping I read this:
http://www.nas.com/downsyn/holland.html

I hope it helps you, as it often helps me.

Good luck and know that there are many people on this site that can relate to what you are going through. This is a good place to get support, especially when you feel like nobody in your day to day life understands.

 

[anonymous]

I have just read that site and how true it is.......Does anyone have any other little poems or phrases about this sort of thing?????

Paula mum to Ruby 3 mths w cf

 

[RMJR]

Everyone here understands this, but a lot of us have children with CF and we wouldn't trade that child for the world, as I am sure you wouldn't. We try to be as positive as we can with our daughter and not let guilt enter the picture anywhere, and just work to find better treatments, and a cure. Hang in there.

 

[ErinsMommy]

Thankyou all so much!
It's unbelievable how much support I have in these forums. We don't even know each other yet it almost seems like we're one big family.
I have a feeling that you guys are going to help me a lot throughout Erin's life and dealing with her cystic fibrosis.
Thanks again, I appreciate all of you.

 

[EmilysMom]

Lindsay,
I'm sorry you didn't fall into that rare 2%, but you are now a part of the most wonderful, close family you will ever be part of...the CF family! We are always here for each other, sharing opinions (Sometimes opposing opinions...lol), answering questions, looking for help or just venting on a bad day!
I remember the day Emily was diagnosed. It was not a fun day (to say the least) but I wouldn't change for a minute the person she has turned into (some of which I belive is based on having CF). She is a bright, fun, beautiful young woman who wants to go places, do things and live life to the fullest and I wouldn't trade her for the world!

 

[lovingBenandCambree]

Lindsay,
I am sure you have already heard everything that I have to offer, but I just wanted to let you know that I am thinking of you. I know that even though you thought you were prepared you still clung to that hope of 2%. We all do it. It is always good to have a great support system. As I have said before your daughter is a fighter. She has proven that. I believe that she will continue that fight throughout her life and exceed expectations that others set before her due to her CF. That is certainly something that was a motivator for me. I loved proving others wrong. I promise this disease will make her a better person and all those around her will be better because of her. Keep a positive attitude, although I know sometimes it is easier said than done. I believe that we are never given trials that are bigger than we can handle. It may seem so at the time but you will receive strength that you never knew you had as will your daughter and other family members. Erin has a bright future ahead of her. Always remember that. Each day is a beautiful gift. To me each day is a little bit more special and something I cherish more and more. I hope that you can see the silver lining and look to the future with hope. Please don't blame yourself. I have never once put any blame towards my parents although I know that they have felt the guilt that you have talked about. Just love your daughter with every fiber of your being as I am sure by the way that you talk that you do and that will be all that she wants from you. Good luck with everthing. My prayers and thoughts go out to you.

Emilee with 2 E's

 

[anonymous]

Lindsay,

First let me say how sorry I am that the sweat test was positive! I remember like it was yesterday the day we got the test results. My daughter was diagnosed June 1, 2004 at 3 months old after a lengthy hospital stay that started with reflux and ended with a CF diagnosis. I remember our CF doctor, calling us into a separate room and I knew then she had CF (I think I knew before that when I heard the symptoms, mainly the foul smelling, greasy looking frequent BM's which she had, but I kept trying to convince myself that she did not have it!) I was hysterical and crying so hard, I don't remember half of what the doctor said to us. I kept wondering how I would ever handle this and crying because my poor baby would have to suffer with this horrible disease for the rest of her life. I began to question everything, my faith, should be have even had a second child, was I being punished by God for something. That night was truly one of the worst nights of my life! I can tell you gladly that it does get better! It has been a little over a year since our diagnosis and live has settled down to a new normal for us. We have gotten in the routine of the enzymes, the breathing treatments, the CPT, ect. Hayley has been relatively healthy and people who know she has CF are always remarking that you would never even know anything was wrong with her. She is a happy, wonderful child and she amazes me everyday. I won't tell you that I am glad she has CF, because I am not, but I do appreciate each day with her, each milestone in her development a lot more through. I try to live each day to the fullest now and not take anything for granted. I realize how lucky we are that she was diagnosed so early and that we have all the available meds and treatments. We just try to focus on the future and wait for the cure for CF. Please feel free to e-mail me anytime at rebecca.quaintance@co.allen.in.us.

Becky, Mom to Nathan, 4 w/o CF and Hayley, 17 months w/CF

 

[anonymous]

Lindsey,
It's hard, but stay with it. Your kids our the greatest things that God has given to us. I have 2 girls 17 & 18 WHO HAVE CF. The main thing is to keep them healthy by hitting meds if they need them, and make them eat. When they get older , it's alot harder, I know. They tend to think they know it all. Be the enemy . and insist on the treatments and the eating. You'll do find.
USA