Hello. i am the mother of a 3year old with cf, he was diagnosed at 18months. This the first time i have been able to reach out to other parents and families of cf. I have been in denial for over two years. I am so depressed, my hands are shaking just typing this message (posting this message means admitting he has it) I feel like i'm drowning. People are amazed at how well I am dealing with his cf, they say i am so strong, but i'm not. the only time i ever allow myself to cry or to feel is in my car alone or late at night when my husband and son are sleeping. my husband has never gone to the clinic with me and tells me not to worry so much because "there will be a cure soon".Iwent to a support group meeting once, and it took every ounce of strength to not breakdown. my son is doing pretty good, no hospitalizations except for polyps, tonsils, and adenoids removed. I feel so broken inside. I never want to go out with my friends anymore, i haven't exercised in forever, i get panic attacks over the dumbest things. I teach at a mother's day out program and i get to take him with me, but i have to miss a lot of work when he's sick. My coworkers hate me now because they have to pick up the slack when i'm gone. Some of them think i am making it all up and refuse to believe he has the disease "he looked fine the other day", one even had the nerve to say i was making him sick to get attention. I desperatly want another child sometime in the future, but people say i am selfish. I just can't do this any more, this isolation is going to kill me, it is going to break me down. I can't let that happen. I don't know what kind of reply I need, or advice i need to hear, I just know i need something --some little bit of hope. my son doesn't need me to breakdown, he needs a strong mom. please help me.
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depressed
- Thread starter anonymous
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singlemomof2
New member
Hi there, my name is Lynn.....I want you to know that what you are feeling is exactly what I went through when my daughter was diagnosed at the age of 7 1/2 months. I was alone, a single mom....with an uncertain future and a child that was ill, but otherwise looked healthy. I felt lost.....I too cried, and lots, I'm sure I could have helped with the drought in some third world countries.....I couldn't even sing the ABC's to my daughter sometimes because I would think of the letters "CF" and that would even cause me to break down. If I heard family members talking about her or her ailments, I would crack.....It was hard.....sometimes it still is, but it got better to deal with, it became...well, normal. The way we do things, the treatments, her meds..it's all just a way of life, our kinda 'normal'. I have since had a second child...without CF. Just because you have one child with CF does not mean that the other will have it as well...but what you have to decide is if you are strong enough to handle two children with CF.....I'm sure that you will do fine. You seem to me that you are an awesome Mom, sparing others feelings to ensure they are not 'hurt' by your emotions...but I must tell you, crying is natural and if you need to talk to someone and you don't want to because you make break down..then you really HAVE to talk to someone...you need to let this out. If not your husband, a friend or perhaps the social worker at the Clinic...maybe to someone here.......I guarantee you, I will always be here to listen.I wish you luck in mending the pain you have in your heart and hope that your son does well. I can't tell you that a cure is soon here, I can't tell you that they will even have a cure in our lifetime, but what I can tell you is that they are close and the best thing for your son is to ensure he has his medicine and treatments as he needs them..that is how he will stay well.God Bless you......and your family.A warm hug*LynnPS Feel free to email me or add me to your meesnger if you have it. (valuebulb@hotmail.com)
My heart goes out to you because I know how you must feel. I am the mother of an almost 4 yr old who was diagnosed at 2 months old. It is very difficult to accept and it took me over a year. I also wanted another child but my husband didn't. In then end I agreed that it was not the best decision for our family and we are happy to have been blessed with our little girl.Please try and get some help and find someone to talk to. I thought, as did everyone else, that I was doing well. Everyone was so proud of me. When she was 3 she had a few problems with her ears, sinus and reflux. Although it does not seem like a major problem it got to me just to see her sick and eventually I burnt myself out. I couldn't eat or sleep and I lost 10 lbs quickly (which I could not afford to lose because I am quite petite already). I took 3 months off work and focused on myself for a while. I went to counselling and learned that if I am not well then I cannot effectively take care of my daughter. It is still a tough road sometimes but I do my best to put myself first sometimes without feeling guilty. You need to be well to help your son be well. You are his example and if you do not take care of yourself you are teaching him to do the same.If you need to talk heatherrock70@hotmail.comHeather
I am not a parent so I can't imagine what you are going through and I can't really tell you what my parents went through because I wasn't diagnosed with CF until I was 22. The only advice that I would give you is to keep going to that support group because nobody else seems to understand what you are going through and you shouldn't go through it alone, and don't about breaking and crying during a meeting the people there are supposed to give you the support you need, that's why they are called support groups.Good LuckDave 29 w/cf
Augustmoon
New member
<img src="i/expressions/brokenheart.gif" border="0"> I'm so sorry that you have to go through this (that WE have to go through this). My son is 8 months (diagnosed at 3 1/2). I have found SO much support through other mothers and families...believe me...it really does help! I have met great people through the support groups online and there are quite a few families in my town w/ CF babies, toddlers, kids, etc. (which is not very common) but we support eachother a great deal. Being active in CF awareness is also theraputic. Whether it's with the CF Foundation, or any other CF group. I have a website...www.fightforethan.com. PLEASE EMAIL ME if you want to talk!!!!!(augustmoon0003@aol.com) I know what you are going through...believe me!!<img src="i/expressions/heart.gif" border="0">
I also know how you feel. When my child was born (12 years ago), i got so very depressed. I found an amazing therapist and saw her weekly for two years. I've gone back from time to time when I've felt the need for support. In fact, I've just started going to her again because I just feel so totally overwhelmed now. My child is a teenager, and after living most of her life pretty healthy, she's now having lot's of problems. Years of denial, believing that she will live a "normal life," are now crashing down, and I'm having to feel the sadness and disbelief and reality of it all over again. I feel like I'm two people: on the outside, the me everyone sees is competent, busy, upbeat, handling it all. Inside I feel hollow and overwhelmed, like I want to crawl under a rock and just not deal with any of it, and like there is no one who understands what I'm going through, what it feels like to have a child with problems you can't fix, and who you can't protect. So, here's my pitch for seeing a therapist or other professional counselor: The problem with talking to friends and husbands, is you feel you need to spare them pain, so you can't really say how you feel. And everyone has there own issues that make it difficult to just hear what you need to say. Especially with your husband -- he is feeling his own pain, in his own way, and it probably is just too much for him to deal with your pain as well. So, he needs to minimize and negate your feelings -- his own form of denial. That's why a good therapist is a blessing -- she is there 100% to help you and listen to you, and you don't have to protect her or worry about her feelings or what she thinks. I have always struggled with feeling like I'm being weak or self-indulgent by going to a therapist. But, in fact, we Moms carry an enormous burden every minute of every day, even when we're not thinking about it. It is absolutely understandable that we would need, and deserve, extra support. I hope you find the support you need. And just let yourself cry and be sad. It's so very real. But also, be assured: you will have joy, and your child will have a full and worthwhile and happy life, even dealing with his extra burdens. Kids are so amazingly resiliant. They can handle a lot, and still have a positive outlook -- more so than their parents. You willl reach some kind of "normalcy," and you will feel better. My thoughts are with you. Hang in there and take good care of yourself (you deserve it) and get some help whenever you need it.
I have just been diagnosed with Cystic Fibrosis at 42. You need to understand that your feelings may be coming from your fears of losing your son one day or your fears of not being able to care for him. First of all, your son may live a long time. Yes, medications will have to be given every day, as you are doing now and as he gets older he will take these himself. Yes, someday, if there is not a cure by then that is, you may lose your son. Until that day comes, hold your son up as high as you can and let the light shine on him...be the wind beneath his wings. Let him enjoy life and enjoy life with him. Now is not the time to mourn his diagnosis. You need to be your son's rock! He is counting on you, his Mom.Have you listened to the song Hero? You need to be the hero.Take care, Carla
My 3 and half month baby girl was diagnosed with CF yesterday. Today we got our "crash course" in caring for a child with CF. There are so many prescriptions and things. We are so overwhelmed. We had no family history of CF and we are really a wreck over this and need support.<img src="i/expressions/face-icon-small-sad.gif" border="0">
I want you to know I am right there with you. My son had his 3rd birthday today, he was diagnosed at 2 weeks old and has recieved outstanding care ever since. I have been depressed and have had many awful days dealing with everything. My husband has only been to 3 clinic appts total and my son has been going every 3-6 weeks since his diagnosis. He always says ahh he'll be ok, they'll find a cure soon, he looks fine I think his doctors are overreacting. I do all his care at home, many meds/breathing treatments/chest pt min of twice a day/ feeding tube 14-16 hours a day. He has been hospitlized a total of 11 times now. He is a very happy, active,smart, handsome little boy. I had to quit work after he was born I took all of my sick days/ vacation/ personal days . I got FMLA without a problem, but you don't get paid for those days. I absolutely hate when people say oh he doesn't look sick, I always answer with good I am glad he doesn't look sick or act sick, ( well I know he is and that's all that should matter) My son is so active, the last time he was in the hospital he had an iv in his foot, a picc line, a feeding tube and O2, he grabbed his poles and would sprint down the hall to get to the playroom, nothing slows him down. I overheard some patients families as he ran past their rooms, saying why is he here he doesn't seem ill. I am home all the time with him, I have a 5year old daughter who doesn't have CF, and I have a hard time spending that qulity time with her.I have only a few good friends that I see. I am the only one that stays with him in the hospital, My husband won't because he finds the Children's hospital too depressing. I find myself crying alot, but getting all those bad feelings out is the best thing to do. Hang in there, please e-mail me if you wish so we can talk ---- mikeyhannahdonna@hotmail.comDonna mom to Mikey 3 w/CF <img src="i/expressions/face-icon-small-cool.gif" border="0"> and Hannah 5 w/o CF<img src="i/expressions/face-icon-small-happy.gif" border="0">
I'm not sure exactly what to say except....hang in there all you people! I guess maybe I'm an old hand at this compared to some of you. i had my first child almost 21 years ago. A beautiful little girl. We were thrilled until at the age of about 48 hours, the doctors told us there was something wrong. Making a very long story shorter...Emily was transferred to a Newborn Intensive Care Unit at Yale New Haven Hospital in Connecticut for surgery at three days of age for Meconium Ileus and was tentatively diagnosed with CF at that time. We were told she had a 50/50 chance of seeing her 18th birthday! She couldn't be diagnosed with CF until she could be sweat tested at the age of about six months (keep in mind this was 20 years ago) They didn't have the testing available that they do now. We had no family history and we looked up CF at the library...that was a HUGE mistake. The info was very old and very frightening.Her doctor was Tom Dolan (of "Alex: The life of a child" fame) who we loved and has just officially retired. He was terrific with us and took very good care of Emily...obviously...She is still here and doing great. She just finished her freshman year at Northeastern University in Boston (on the Dean's list <huge mommy grin>), has a terrific boyfriend, a good outlook on things, enjoys very moment and I wouldn't have missed a moment of it!Hang in there!Everyone::::::::::Email me directly with any questions or if you just want to talk...I'm always here for other CF parents. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Dear Mum of three year oldI am the Mum of a beautiful brave eighteen year old daughter. When she was dx at 10 wks, I was hanging her clothes on the line, in tears, wondering if there was anyone else in the world who knew how I felt. I didn't want to get up the next morning in case the little book on CF would be on the table where I had left it. I didn't want nurses and physio's some into my home and teach me how to do things I didn't expect to have to do to my baby. I didn't know how or who to tell about CF or when or why.I cried. Over the years I have cried in front of doctors, nurses, physios, family,friends, coaches,bossesreceptionists and I am sure many others and particularly in front of the people who take blood!! I don't think we would be normal if we weren't heartbroken to have a child with an ongoing lifelong illness like CF. Because of the ongoing nature of CF and all the treatments involved and how it can affect the entire family, there are lots of losses along the way. Firstly, the loss of the "perfect" health of our baby and at the time we need to grieve for that and for some of us, it takes along time. We then feel the loss of control or power over our childs future. (no matter what we do, they still have cf) One lady I know took out a loan and handed the cash to the CF doctor and pleaded for him to make it go away. We can't do that. We have to treat them as they are, normal kids who also have something called CF. They are normal kids, they look like every other kid and they can usually do anything and everything that other kids do and if they choose nobody needs to know they have cf until they or you are ready. Along time ago, I decided that I am not going to waste time worrying when someone doesn't understand. As long as we are doing what is necessary and we are happy then who cares what others think. If my friend can't see it, so she thinks its not there.. so what.. she will get there at some stage. I can't expect everyone to understand, particularly when it's not visible(which is more of a plus except when it comes to education and fundraising) . I probably don't understand some things about my friend because I haven't been through them either. The future for kids with CF is bright. The medications and treatments have improved, more people are becoming aware and there is lots of research going on. The basics of looking after someone is cf is still the same. Good nutrition, enzymes, vitamins, antibiotics, physio, nebs, extra physical activity trampolining, blowing (fun things so that physio isn't such a pain in the butt for us and them) and attending clinics and taking on board new treatment regimes that may suit your child. I hope you find someone to share your thoughts with. I am very fortunate to have a Mum and sister who quite frequenty just listen when I share my thoughts and yes I usually cry too. It doesn't get any easier each time there is a struggle to overcome because they are our kids and it does break our hearts but I hope you can make time to go out with friends and to exercise and to keep working on a good relationship with your hubby. I know it is hard. My husband rarely shows his emotions but boy does he care lots and when we do try to talk about our concerns, we both end up emotional and we usually feel better afterwards. My husband says that living with cf is like having a shark lurking in the background so you are always on guard. A few years ago I read of something called "chronic sorrow". For example, when your child is dx with cf, you grieve. the grief goes on as you watch your child struggle with cf, they begin to gain awareness of the consequences of it, get upset when they feel robbed as they have to do things other kids don't etc etc. The person who termed chronic sorrow suggest that there are episodes of sadness during which time it is felt deeply and the smaller griefs are resolved somewhat over time, thereby allowing the sadness to be pushed back and then we have periods of relative normalcy, satisfaction and happiness.( I think this is how it is for the most part) However, some of the sadness remains and can vary in intensity betweeen situations and people. I know this is how I feel and I think we handle living with CF well and I have a happy, well adjusted young adult with CF who has completed Tertiary Education, Studies and has a part time job that she loves. She neither flaunts nor hides CF and recently said that if she had her time over again that she couldn't say she didn't want CF because it is a part of who she is and why she is the person she is and she wouldn't have had many experiences and met some amazing people. She did lose someone very special to cf but she would prefer to have all the struggles and have had that short but wonderful friendship.. All else I can say is.. when I feel down or overwhelmed.. once I go out, whether for a walk or to the park or a game of tennis or a few wines with the girls . I most times feel so much better and things don't seem as bad. But there are still days when I just want to stay inside with my pj's on and have a cry and whats wrong with that!! Nene
Hi There,I also like the other parents absolutely can relate to you 100%.It is such a rollercoaster ride when your child has a condition like CF, you have your good days and your bad.I have another parent of a older child with CF that I talk to regularly who is always on the other end of the phone if I just need to have a cry and believe me sometimes I do!Matthew is my first child and I am definately going to have more children, I am not going to let this disease control our life, I know its easier said than done, but I have now found a way of finding peace with myself and like the other mother suggested you find ways of dealing with it that works for you.When I have a bad day I go out, Matthew and I go shopping with a girlfriend, coffee or to the park, I watch him play and laugh with the other kids and it makes me feel good.He is a normal child living with CF, and sometimes I have to remember that he deserves to be treated like the other children, as he has enough to deal with, and that normality with his other everyday routines won't make him or me feel isolated from other people or the world.My husband doesn't show much emotion, he also like your husband feels very positive for our sons future and a cure also, that really helps me as we balance each other out.I know Matthews future is positive, he is only 1 and we look forward to many more years ahead!I hope that you can really find someone to talk to regularly and speak your mind.Best of luck to you.Rebekah Mother to Matthew 1 year old WCF
Hello, my heart goes out to you all. Feeling very low this weekend so as soon as i saw the topic i was in there! I'm the mother of a very beautiful 14 year old whose having a tough time of it at the moment. Been ill since beg of feb with one thing and another. Sometimes i feel so angry, I always imagine it's all going to go away when we get over this current hurdle and life will be "normal". But CF is there ready to tap you on your shoulder just when you felt the sun on your face. Liked the chronic sadness story see above. Sums it up for me. If I'm feeling very down I just swing with it, dive down, cry loads, feel that I'll never get up again and wallow in the awfulness of it all. And then suddenly the clouds part and you're energised and ready to fight another day and live life to the full with this funny, charming teenager who is a whole lot wiser and keeps you on the ball. We cry for a purpose, so be brave and do it, become a blob, I promise it will make you stronger and ready to care for your child again in a positive way.
Augustmoon
New member
To "Mum of 18 year old"...I have a son that is 9 months old with CF. Your post was beautiful and I would like to post it on my website with your permission (www.fightforethan.com) Please email me and let me know if this is okay! <img src="i/expressions/face-icon-small-smile.gif" border="0"> My email is: Augustmoon0003@aol.com. Thanks again!<img src="i/expressions/heart.gif" border="0">