Having a hard time with diagnosis

[anonymous]

Hi everyone,

I have been lurking for awhile now. We found out our son has CF three months ago (he is now 5 months). It has been such a rough road. He was diagnosed because of failure to thrive. He now does exceptionally well with the enzymes and we also do the postural drainage every night. So far that is the only difference in our routine. I am just having such a hard time not focusing on the negative. My husband has been great and is really so positive. We luckily live near a great CF clinic, and they were also so positive. They basically told us not to treat our son any different that any other child, live our life to the fullest, and just be careful around sick people. They also said not to look into the life expectancy stuff because the 30 years we hear about now is based upon medicines those patients took 30 years ago. The doctor said someone born now actually has a chance to live a full, long life- if not even living when a cure is found. That is all great, but I am still so depressed. I just feel so sad and alone, and am even jealous of friends with healthy kids. (And I feel sooo guilty for that!) I guess I've just finally decided to post for some encouragement and positive thoughts from all of you. I just am trying to enjoy my son, but each day I am so consumed with fear for his future.
Thanks, Carrie mom to 5 month old with CF

 

[Jane]

Hi Carrie,
I'm, so glad you decide to join us. The time after the diagnosis is such a sad and lonely time for a mom. I will never ever forget those feelings and I wish that there was a forum like this then. Its gets better, but of course there's ups and downs. The sadness never really goes away but you learn to deal with it. Every healthy day helps because you realize how normal he is and that the disease is not your child. It sounds like you got good advice from your clinic. You'll get more here. Most importantly cherish your son.

Hang in there!
Jane

 

[LouLou]

Some days I'm proud that I have CF. My husband actually says taht it has shaped me to be the disciplined, wonderful person I am. Most people in my life don't even know I have CF. I understand your pain - when I talk to my Mom about my first two years of my life, I realize it was 2 of the hardest years of her life. I suggest you get a life out side of your family if you don't already have one - start an exercise program and scrapbooking - just two of many things you could do. Good luck - it won't be an easy road but try to feel 'lucky' somehow?! I know that might seem strange but 15 years from now, you'll know what I mean.

 

[LisaV]

It sounds like you're in a place that most are/were.

I'm glad that your doctor explained how they come up with those life expectency figures and how meaningless and useless (and potentially harmful) they are.

There's a book/article written by LeMaistre that's recommended for adults who are diagnosed called "After the Diagnosis" ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html">http://www.alpineguild.com/COP...CHRONIC%20ILLNESS.html</a> ). I think it might be helpful to parents and other family members of someone diagnosed with CF too. Of course, since it is directed to an adult with a chronic illness and not to a family member, you have to sort of "translate it" as you go along .

And I'm glad you posted and that there is this forum. I've found that having "fellow travelers" has been crucial to me in walking this road. Helps to remind me that it is the trip that matters - not the destination.

Keepin you in my heart...

 

[anonymous]

Hi Carrie,

I remember when I found out my daughter had CF I went through so many emotions. I felt sad and angry and scared. I felt like i was mourning the life my daughter would not have. My husband was/is so positive. now watching how my daugher is now(she's over 3), I see just how much she enjoys in life. She has taught me and many others around how to truly live life, and again she 's only 3. She's fearless. She just loves everything about life. She goes sledding, and ice-skating and dances ballet/tap taken gymnastics...pretty much the list goes on and on. She'll try anything once. I really admire her. Don't get me wrong, she had more than her share of health issues and hospitalizations but she gets through it with our love and support.

There is incredible research going on in the CFF and CF world. One thing that helps me gain some control over this disease is fundraising for the CFF and the great strides walk. The outlook is hopeful for pwcf. I am certain there will be more drugs out there to help our loved ones with CF and perhaps a cure.

Also, this website has been a great support as well. knowing others have been through this as well.

Take care,

Rebecca(mom to sammy 7 no CF and MAggie 3 with CF)
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/Great_Strides/RebeccaMurray">http://www.cff.org/Great_Strides/RebeccaMurray</a>

 

[anonymous]

Thank you so much for all the fast replies. It brings tears to my eyes just to read them and hear from others in similar situations. And Lauren, I absolutely LOVED to see that you are 27 years old and you sound like you are doing quite well. That is so encouraging to see. It is comforting to know that others have been in the same situation. (But I wish we all never had to experience this sadness.) So far we have not had any health scares, but I live in fear that one day he will end up in the hospital soon. Does that happen often? I am just trying to take this one day at a time but it sure is hard not to constantly anticipate what will be next in his future.

Thanks,
Carrie
mom to 5 month old with CF

 

[anonymous]

Carrie,

When DS was first diagnosed, he had to spend a couple months in the NICU and when we'd go for lunch at the hospital cafeteria, I'd see a group of women leaving their prenatal classes and I'd get so angry I'd want to SHOVE them, 'cuz of their perfect lives, their perfect pregnancies, they were probably going to have perfect children and it just wasn't fair. Sarah Jessica Parker had just had a baby, too and I hated, her also.

There's a whole grieving process -- denial, anger... I would cry for days, I would rage. It was so unfair. I was sooo scared of the unknown -- that DS would get sick and end up in the hospital. I was afraid we wouldn't find a healthcare provider who knew about cf. Worry worry worry. I still worry a bit at times, but ds is such a joy. He's soooo happy and full of life and he just makes me laugh.

Poor little guy was sooooo brave today. Had to have his bloodwork at the clinic and he didn't say a word. Just looked at the shapes they had on the ceiling, visited about what color his blood was and what kind of candy he liked.

Try to enjoy your child. Try not to worry so much!

Liza

 

[Haileysmommy]

Hi Carrie,
We had a hard time when Hailey was diagonsed too. It has gotten easier over the past year. We try not to dwell on it too much. We have 2 other kids and we try to treat them all the same. Where do you live?

 

[anonymous]

We are in St. Louis and absolutely love Children's Hospital here. We are fortunate to live somewhere where I feel as though we are receiving great care for our son. I guess that is one positive out of this situation!

 

[anonymous]

Liza-
I just had to say how much like me you sound. I remember having to go to my routine six week follow up after Andrew was born, I think I actually posted on here afterwards, but any way, there were so many women, some pregnant, some with their newborn babies, I have never felt so jealous of anyone in my whole entire life, it was so incredibly hard to sit there in that waiting room surrounded by such happiness, knowing my son was not with me, he was in the NICU and had been for several weeks. Oh God, that was hard, I just can't find the words to say how hard.
Oh, and instead of Sarah Jessica, I had BRITNEY SPEARS sporting her newborn perfect baby boy, oh how I hated her, felt she couldn't possibly know how lucky she was, just like all the other mothers in the whole world, one of which I had been myself following the birth of my 12 year old son and four year old daughter.
I guess only time can heal those wounds.
Jen

 

[JazzysMom]

I can only imagine how hard it is as a Mom to have your little one dx with CF. I remember the phone call my Mom made to my Dad when I was dx at 7. She was hysterical. We lived in NY, but I was dx in Boston & staying with my oldest sister while we learned everything. It breaks my heart when my almost 8 year old daughter has a terrible cold or a belly ache so to have her deal with what I have over the years which be so hard for me. Fortunately (yes there is a fortunate side to it all) your child has been dx at a time that so much more has been learned & things discovered to make it easier to maintain the health of CFers. Keep those ??? coming!

 

[julie]

Carrie,

I'm not a mom-yet, but I still wanted to give you a warm welcome to this site! I am married to a man who is 25 and has CF. He was diagnosed at 18 months. He will be graduating from college in May with a degree in business administration and a minor in international business. He will be the stay home dad for the next year or two and work on his Masters. I just wanted to share this with you beause there is SO much hope and progress for those with CF nowdays and I hope that it gives you joy and hope to hear about other successful CFers-there are MANY on this site.

I can only imagine how difficult it is to be a parent of a CFer, I'm only a wife and I have my days where life just isn't fair and why him, why not somebody else. But in all honestly, I think it really makes him who he is (he agrees to a certain degree) and I don't think he'd be the man I fell in love with.. he's so kind and gentle, not judgemental and very understanding of others.

Keep your head up, and you will find comfort and support on this site. Especially for those really difficult days!

 

[anonymous]

Carrie,
I want to welcome you to the group. I too am mostly a lurker, but there is a lot of wisdom here. I have been where you are. My son was diagnosed at 18 months due to failure to thrive, and I was stunned. We had never had anyone in either family with CF, and we had a very healthy 5 year old daughter. I remember hating everyone. You will get past that and see how lucky you really are. My son is adorable. He is 4 now. He goes to preschool, does karate, rides a bike, wants to be a skate boarder, drives his sister crazy, the list goes on and on. Life is so much different, no better, than I had expected when he is diagnosed. Yeah, life is not what you had planned, but there is so much good out there. We have met so many wonderful people in the CF community. Get involved in your local chapter. (Although I cried through a lot of the meetings in the begining) Sorry for the rambling, but I want you to know that it will get better. There are a lot of great things out there for you and your son, and it is going to be okay. Feel free to e-mail me anytime.
Long distance hugs to you and your family,
Kelly

Wife to Mario, Mom to Lucy 7 and Dominic 4

 

[anonymous]

OOOOOOOOOPS...... forgot to add
KellyBrancoli@sbcglobal.net

 

[anonymous]

Dear Carrie

We sound alot alike... my husband does such a great job at staying positive about Kait and her CF..he always has. Me on the other hand, well, lets just say.. i worry all of the time and my daughter will be 10 next month. I really try to focus on the good things and so far my daughter is doing great, her lung function is over 100% and we are very faithful in following her treatments. My daughter knows that i am the one that worries and i know that it makes her worry...she is alot like me...

She has been hospitalized 4 times including birth and during those times i am a nervous wreck.. my husband is great, he is the one that will stay focused on the positive and that is good for our daughter.

I cant tell you that someday you will not worry, because i still do. I have tried to just give it all to the Lord but then when Kait gets sick i get very upset and angry and cry ALOT. As others have said, it does get easier, you just learn to live with it and do your best to take care of your child. Our children are just like other children that want to be children and enjoy their childhood. We treat all of our children the same and you will soon find out that caring for your child with CF isn't really hard at all. My daughter like i said will be 10 next month and so far her doc has told me that her lungs are still really great and he seems to think that Kait should live to be atleast in her 60's. With more advancements in CF the life expectancy keeps going higher.

Try not to worry and stay focused on your little bundle of joy!

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[izemmom]

Hi Carrie,

Like many others who posted before me, my story sounds a lot like yours! My little girl is almost 5 months. She was born with meconium illeus, so her dx came shortly after birth. We do enzymes, CPT and albuterol and TOBI because she cultured positive for PA at her first clinic visit. THAT was scary! Actually, the whole first month was terribly scary. Little by little things got better. I was able to stop worrying (A little) when I went back to work when she was 9 weeks old. I work three days a week now and am with her the other two. Like you, I have to remind myself to try and enjoy her. Some days, that's the easiest thing in the world, especially since she smiles so much now and has just discovered how to "play." Some days, like when her reflux is bad or after a weight check when she hasn't gained at all... those are the bad days. It really helps to come here are see the posts from the people in thier 20's and 30's some even past that (Risa, you rock!) If you don't have a blog here yet, start one. It's a great way to release some nervous energy and get positive and encouraging feedback. Of course, you can do that here in the forums, too. What ever you do, keep visiting, keep asking your questions and keep talking. If you want to e-mail back and forth about cf stuff or just about 5 month old stuff, let me know!

gtdrax@sbcglobal.net

Oh, and if you haven't found it all ready, look up the Welcome to Holland story on this site. It may help you find a way to "frame" your experience.

 

[dyza]

hi Carrie<br>
I am a father to a 9 month boy with cf, Like your husband, I am
positive also. Dont let your feelings cloud your judgement of how
you think your husband copes with this,if he is like me then
outwardly he is positive, inwardly he probably hurts just as much
as you do. I try to stay as positive as i can as much for myself,
but also for my wife and child.<br>
<br>
father to 12y.o girl no cf  .9mth old boy  w/cf<br>
Scotland<br>
<br>
<br>

 

[wuffles]

Hi Carrie,
Welcome to the forums! I hope you find them useful. I just thought I'd post to let you know that there are CFers who are living into their 40s, 50s, 60s these days. There are even a few beyond that. Even though everyone's case can be so different, sometimes you just need a little hope! I am 21 with a university degree and full-time job, live away from my family (interstate) with my boyfriend, play sports and live a great life in general. Good luck with your little one and live each day as it comes!

 

[anonymous]

One thing I do regret is that I was so so worried about DS not eating, that his spitting up/refulx might actually be another bowel obstruction, that he'd get sick and end up in the hospital over and over again, that I didn't sit back and enjoy him. I missed out on so much because of worry. I was so overwhelmed with medications, treatments and worry that sometimes I was just on autopilot. He survived, we survived. I wish I'd taken more pictures, played more with ds, sat back and watched his baby milestones 'cuz they just change so fast.

We were remarking at his clinic appointment yesterday that his one and only trip to the Emergency Room was around the holidays last year and it was non-cf related.

I still worry at times and cry. A couple weeks ago ds barfed up his dinner, prior to that he said his tummy hurt. And I thought -- oh, no. Blockage! I fretted all night! No, he ate too many pancakes with butter and his owie tummy was actually a bruise on his hip from the ball pit at daycare.

Liza

 

[LouLou]

I think you should not regret worrying or not sitting back and enjoying the milestones. While it would have been nice for you to have his infancy be 'normal.' You were realistic about the matter at hand. Your healthy baby is directly attributable to the way you handled his diagnosis and subsiquent treatments / therapies.

My mom and I are very close, she is 61 and I'm 27. I was her second child. My brother is 4 yrs. older than me. She had a good career as a social worker before my diagnosis. My Dad had a well paying job so they decided she should stay home with me. I learned recently that she didn't always feel close to me even though she thought she'd be closer to a daughter than a son. My brother and her are a lot a like...dreamers, can reflect on things for hours, great writers - I am more of a realist (might have something to do with being a Virgo) - have been told I'm blunt - say it how it is. Anyway, where I was going with this is that my mom told me that she had a different kind of relationship with me than my brother from the beginning. She said she felt he was connected to her but that I was always a seperate entity. She remembers thinking she knew what my brother wanted / liked but that each time she saw a reaction from me - good or bad - it was like 'Oh! Lauren likes this.' or 'Oh! Lauren doesn't like this.' Sort of like a scientist - tracking progress. I wonder if this is normal or if my mother had detached a bit from me because of my CF. She says she did detach. It wasn't that she didn't care about me but rather I was her project, her job. She loved me, but more so she worked to do a good job at her project of keeping this being 'Lauren' well. My brother was 4 when I was born. She says they had a very real relationship at that age. Whatever that means?! Now I'm all grown up and we are close but I'm still trying to understand this and I'm sure that the bond I have with my baby (if I do get pregant) will be completely different than either of her children because I'll feel it such a gift for me to have experienced biological motherhood. I only hope that my brother stays close to my parents because he needs the support. I'm not sure how CF effected him - rather it's hard to put into words - but I know it did.