Hi There, This is a difficult post as I feel certain most of us would rather not address anything quite so personal. But I do not mind stepping out of the box so to speak, and so I shall discuss this topic in hopes that someone will respond.My husband and I do not share the same attitiude, caregiver desires, worry or concern for our 5 year old with CF. My husband thinks I have my head in the sand and that I need a reality check. He believes the worst and knows our son has an incurable illness. I choose to be happy and I choose to live life fully. My husband informed me that when our son dies he would no longer be in this marriage!!!!!He does not help me with administering our sons meds unless I am exhaused and request help, and with close to 22 meds a day, stuffing calories and educational needs I have a full load. I do not belileve that hardships bring a marriage closer, I suspect what we are going through is typical. I would like to ask how other parents of children with CF cope, how do you maintain a healthy marriage when most of your energy is trying to keep a healthy child? Thanks to those brave souls that will step outside their box and address such intimate issues.
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Parents and surviving your childs CF
- Thread starter Murgie
- Start date
Mandaberrie
New member
I am not a parent of a cf child but am a cfer myself and married.I do believe some marriages and relationships are stronger through hardships but I also believe some are destroyed by hardships as well. I think the ones that are destroyed are a result of one person not being strong enough to handle the hardships. Maybe your husband is just to scared to be close to your son. Afraid that if he gets to close that your son will be gone. He is wrong. I don't realy know if he thinks this way but thats what it sounds like. I think thats how my father was/is. As a result we are not close I actualy don't like him for many reasons but probably one big factor is that he distanced hisself and not for a lack of me trying. Anyway....My husband and I are realy close, I actually believe cf has made us stronger and closer as a couple. He likes taking care of me and I too for him when I can. I don't know your husband at all so don't be upset at what I am saying or going to say its just an opinion. I believe a strong man will be able to handle anything and be able to show his emotions when the time comes. You hear this alot but comunnication is really the key. We talk alot and I tell my husband right off or when he guesses when somethings bothering me. I am sure your husband knows you do alot for your son. But does he get it? Have you talked to him about his feelings. You said " My husband informed me that when our son dies he would no longer be in this marriage!!!!!" this realy sounds like a scared man to me. One afraid to loose his son and afraid that if his son dies he will loose you too, or will be to sad to stay, so he resorts to anger instead. I would talk to him and I mean realy talk. Don't start a fight talk calmly if its possible to talk at all. From experience with my parents I know some people can't talk at all, but my parents are another story built up over the years. But whats realy importanta is that your son knows you both love him very much and that he has a happy life. He will ahve a long life too. Happiness is the key and laughter is the best physio. Just one word of advice if you take any take this....Please, please don't fight in front of your son, and please both of you try not to bring your son in the middle of your fighting, don't blame him for anything that goes wrong in a marriage. PLEASE!. It hurts so bad when a child hears his parents fighting and then they are brought into the middle. I know, my father blames me and cf for everything. It hurts so much even still. I don't mean to upset you and I am not acussing you of cf being marriage problems. Its not its just an obsticle. Think about what i said. I hope I helped in some way. Or atleast gave you something to think about. I hope I didn't upset you in anyway. God BlessAmandaIf you need more advie or ahve more questions and this site doesn't give answers quick enough here is another one to check out, people are there all the time posting and chatting. Someone will respond fast if you need a fast answer.......http://groups.msn.com/CysticFibrosis2chat/homepage
I am also a CFer and I am not so sure how much I can help you, but I do agree with Amanda that I believe he is very scared. I am sure your son will live for a long time and I know this doesn't help with your marriage, BUT as your son gets older your day to day care for him WILL get easier. As he gets older he will be able to take his meds and treatments all by himself. Eventually he will probably be able to do all by himself, but he willl always need the love and support of his parents. I am sure right now it feels like your life revolves around giving your son meds and treatments, but trust me as he becomes more independent it will become easier. I am sorry I can't give you any advice about your marriage as I have been in very few relationships. God bless and it sounds as if you are a very strong woman!
B
Beaz
Guest
WOW! It sounds like you are carrying an unbelievable load ! I have a 5 yr old w/ (as my husband put it recently) a walloping case of CF. I spend part of my (mental) time being afraid of the worst and the rest trying hard to live and let him live fully and joyfully. A foot in both camps... My husband shares the physical load as well as he can, given the hours he works and of course it helps that we DO share the same caregiver goals. I don't think you CAN do it alone day after day, year after year without going totally bonkers-you need help from SOMEONE. What does he mean "He's out of the marriage when your son dies???". If he wants out, he should go-he's certainly not much use the way he is. And what if your son does live a long life? What if he outlives his Dad? Doesn't he feel any responsibility for the life he helped to create? The poor guy does sound like he needs some emotional help. It sounds like your relationship is suffering because you are shouldering way more than your share. We don't have the time for all the nice "bonding" things they suggest in womens mags but being on the same page and pulling together for a common goal-the health and happiness of our kids-has provided a very strong purpose to our relationship. My heart goes out to you- I hope the companionship you find here and elsewhere can help ease the burden you are under. I hope I haven't offended you w/ my frankness in regards to your husband.
Dear Murgie,I'm not quite in the same situation....but I will express my thought and opinions. I am a CFer myself and am married, but I also have a 5 yr old daughter who is CF free. I'm not sure what kind of thoughts your husband is expressing.....not sure if hes scared in regards to the CF, but that is no way to go about it for your sons sake. I know my daughter knows when her daddy is mad or upset...doesnt your husband know this could be very upsetting to your son? As for having a "dreaded" disease, I think your attitude is great! You cant look at it as a death sentence! Many people with CF are living long lives. I am 29, will be 30 in July, a fellow cfer just had his 43 birthday, and i know a woman in florida who is 53 with cf and no lung transplant! It is more than likely that your son will outlive both you and your husband!It sounds like you are carrying a very large burden....but believe me you will not regret the reward!!! As for your marriage, I wish you the best of luck...maybe some counseling for you and your husband because of the stress of the CF. Just to let u know, my mom and dad were divorced before my little brother turned 1. He also has CF and my sis is 18 mos younger than me. My mom raised 3 kids alone....2 with cf....it can be done if need be!Take care and God Bless!Dea
I would like to say that I am a positive person I am aged 37 and I have Cystic Fibrosis, but also I have lived a normal life. I ran away from home at 17, got married at 19 and had a son. I then got divorced at the age of 23, but have since met another partner who is absolutely fantastic with helping me around the house when I am sick. I am what I would say a healthy CFer but if my parents had listened to doctors, they would have had me in a box before I reached the age of 7.Do not wrap your child in cotton wool and let them live a normal life, after all they are still a person but unfortunately have to deal with a horrible disease. Another positive note for you, I happen to personally know a gentleman who lives in England and is 63 years old.....................and HE HAS CF TOO!!!!!!!!!!!!take care and I hope all works out for you well.Rose Marie
Hi! I am in a similar situation. I have 3 children, 2 WCF. My husband is the opposite of yours, he thinks the kids are fine and will always be fine, i sure hope he is right. But he doesnt take any pre cautions for their health. Smoking is a big issue with him, he smokes near them outside and it drives me crazy.Anyway, our marriage isnt that great either, i do most of the treatments. He will do them when he has to. I think CF has put alot of extra stress on our relationship, bills etc. I wish he was more of a help to me and i wish he would treat me nicer. Maybe one day! Good luck, i know its very stressful, your not alone!
Hi Murgie,I am the dad of three girls, the youngest has CF. I hate the disease and never really wanted kids when I was married. I agreed to have kids because I knew my wife wanted them. I wanted to stop after our first. My wife did not. I agreed to do Invitro when my wife could not conceive due to endometriosis. Our second daughter was consider the last child in our faimly until my wife tested positive for a third pregnancy 5 months later.When Madison was diagnosed my wife put her head in the sand and stayed in denial. I decided that I had to be the voice of our daughter and learn all I could about CF. Once Madison was getting really sick and I wanted to admitt her. The doctors wanted to do a g-tube and Nissen. We had a huge fight. I took my daughter to the hospital on my own. I called my wife and told her what I was doing and she could serve me divorce papers in the hospital. As it turns out.. the Nissen and G tube were never done. Our daughter got better.Being a CF child parent is never easy. I am the pessimist but I also have all the CF knowledge. I believe one parent needs the knowledge and the other needs to be the "clueless optimist". Having two parents the same is dangerous. My wife calls my "CF research, my personal hobby". Please!!! Who would select that as a hobby? I am just trying to give my daughter every advantage I can. My wife never served me papers and we are happily married. However, CF does take it's toll. Perhaps you should allow your hubby to take the care and research role. My goals are----1- See my daughter outlive our parents2-See my daughter outlive my wife and I3- A Cure for CF.Hang in there CF life is never easy whether you are the patient or the parent.Name withheld in the event my wife reads this..
Dear Murgie-My heart ached for you as I read your post. I am also a mother of a child with CF (my son, Sean, will be five next month). I am glad you are seeking help - you certainly are shouldering quite a heavy load. I can speak from experience that it is very difficult being the mother of a child with a chronic illness. And yes it can be quite taxing for the entire family. In fact, that is one of the things Sean's doctor discussed with us the day he was diagnosed. The percentages of divorce are higher for families dealing with chronic illnesses - I guess because of the lack of time spouses have together coupled with the additional emotional, physical, and phychological stress of living with something like CF. He told us the most important thing to remember was that everyone deals with stress differently and that we need to make allowances for each other and respect each others ways of coping. But I have to add that in your case, one needs to make reasonable allowances. I do don't know you or your husband, but your husband's way of "coping" does not sound healthy for himself, for you, your son and/or your family. I agree with the other posts - I think that he is scared and doesn't know how to cope with CF. I would suggest that you call your CF clinic and ask to speak with the social worker there. Either she can help counsel your family or she can put you in touch with someone who can help your family. One of the benefits of the CF Foundation is that they advocate a team approach toward CF. They realize that it takes more than just chest therapy, medicines, doctors and vitatmins to treat a person - they also realize that the mind and soul also must be treated, as well. Use all your resources! It is so important to surround your son, yourself, and your family with people who can give you positive support. Yes, CF is scary and the statistics are heart breaking. But I also think it is important to remain hopeful. You sound like you have a good attitude. I hope that you can help your husband to see life in the same way. As I mentioned earlier, the divorce rate of families with CF are higher, but they don't have to be. My husband and I have a very strong relationship. After all, we realize that we are each other's (and our son's) biggest support network. I hope the same for you one day. Hardships really can make a marriage stronger - after all isn't that what we vowed to do when we got married - "for better and for worse... in sickness and in health." Stay strong and postive! Please email me, if I can help out any more (robertnkatrina@attbi.com)--KatrinaP.S. I don't remember the exact details, but I remember reading a story once that there is a young man with CF who was either in his 20's or 30's and running races. I think the thing that moved me most about this person was not just the fact that he was still running races at the age of 20/30 with CF, but he was dedicating one of his races to his brother (who did not have CF) who had recently died in an accident. Life is full of surprises - both good and bad. Life truely is a gift - no matter what package it comes in. Enjoy every second! P.S.S. The current average life span for a person with CF is 32 - but remember these people in their 20's and 30's were only expected to life to their early teens. Better medicine and medical research has nearly doubled their life span. Just think of the possibilities of our children. If they also can double their life span, they will almost have the same life expectancy as a person without CF.
It is very hard to give advise to people you don't know and also to hear only one side, but your story sounds similar to ours. Our son is 5 with CF and from diagnosis (birth), I was determined to do everything possible to ensure he would be as healthy as he could be. I realise now that I was an extremist and it was this "it must be done' attitude that my husband was against, not so much the CF. I am fortunate that we were able to work things through once I learned to relax and live around CF and not bogged in it all the time. Everyone's situation is different. My husband is against more kids because of the experience we've had with CF (4 months is our record time out of hospital), but I'm bringing him around to the idea.<img src="i/expressions/face-icon-small-wink.gif" border="0">
Hi , just wanted to let you know your not alone. Many of us have dealt with something similar. When our daughter was diagnosed at 2months my husband emerged himself into work. He would leave at 7-8 am and not come in until 11pm. ( grant it his work does involve long hours but that was extreme) When she was 4 month we almost lost her and he didn't acknowledge it. Only coming to the hospital for about 15 minutes the whole 5 days we were there. After 2 1/2 years I had had enough and gave him the facts. I can't go on and it is this job or us. If I was to this alone it was going t be all the way alone. This was also after I had almost had a nervous break down after having a small fire in the house and he didn't come home when I called to let him know.the list goes on. During the time he was thinking about it he got a promotion that sent us to another state which meant more time at home. More time to see what he was missing and get to know his 3year old beautiful daughter. We transferred back home a year ago and one of the guys that was here when we left is still talking about how my husband wasn't there for me, and not setting his foot down and being there for me. Before I get to far away from my point .. You both need to be envolved. But remember that whoever spends more time with the child is going to know more but share it with the other. In a way both are right this is a serious incurable disease but you can't let that run your life you chld wants to be treated as normal as possible. Yes they have to take meds and do treatments and go to the hospital from time to time but they will be happier if they are allowed to go places and do things. I am sure that your husband loves you and your child but this may be his was of dealing with CF . Keep him involved, share what is going on. Assure him that with the support of both parents that your child can live a good long time. prayers are with you,Dana,
Thank you all ever so much for the wonderful responses. Each note has given me an insight into my husbands heart. I am so thankful to have read all the opinions, really I am. Absolutely NO one offended me and I will try to be more understanding and communicative with my spouse. I am also sending him to the CF clininc appt tomorrow WITHOUT ME. Happens our car is broke and his only has 2 seats, but nonetheless, he has not gone to clinic in nearly a year. I think his involvement in research or fund raising could benefit him, and I indeed love being a caregiver, so I will compromise where he will. I regret that we have fought in front of our son, I appreciate the message from the cfer who said PLEASE dont do that, I will relay all this info to my husband and I will urge him to work with us. I do believe he is depressed and maybe his trying to push me away is really saying Help me.Mr. Anonymous who so graciously shared with me, I have to laugh, when you named your daughter I KNEW who you were! I am impressed with your story and I am so thankful for your knowledge that you share with us all. This is indeed a terrific support system. I feel better and I know will put a plan into action and that plan will include a healthier marriage. Perhaps some of you know our story, but its worth mentioning again to help you (and myself) understand my spouses disapointment. We have had 2 failed pregnancies and 4 failed adoptions, so Sam being our last attempt has brought so many emotioins into our hearts and lifes. I know FOR CERTAIN that Sam was meant for us and we were meant for Sam. Of that I have No doubt. My husband on the other hand has really never fully recovered from the hardhips, so who knows, maybe he resents my cheerfulness and thankfulness.OKay I will get off my soap opera, but thank you all so much!
Hi Murgie,You are not the first person to express this type of problem. It seems that many moms take on the primary roll in terms of meds and PT and whatnot. I am surprised and disturbed at your husbands attitude though. There are many CFers who live into their 50's 60's even 70's. So, a comment like when our son dies he would no longer be in the marriage, may just be right. Your son could very well outlive both of you! I think it sounds like your husband has completely given up on you son's life. I would urge you to make it clear to your husband that not only do you expect him to participate in your son's care (how about doing one session of nebulizer and PT a day) but that he also needs to find a way to make an attitude adjustment. You do not have your head in the sand because you have HOPE! He has immersed himself in sand to shield himself from the possibility of maybe loosing his son. He has taken the pessimist's way out. Honestly, my hubby doesn't do as much in terms of fighting with insurance companies and dealling with the docs and stuff as I do. however, I am at home all day with my child and he is at work. I have more of a chance to do these things and I am bit more forceful when it comes to getting what I need for my kid. I know how to deal with people at the insurance companies. He does do the evening round of nebs and chest pt. We also share out giving enzymes and g-tube feeds. I don't expect him to do everything for Rachel but he doesn't expect me to do it all either. There has to be some give and take like in everything else. You are not the only parent of your son. His father needs to take HIS head out of the sand and give you some support. I urge you to talk to your hubby about this, he may not realize what is going on in your head. If you have tried and he still doesn't get it, he may need some counciling. People do go into a type of grief when they have a child diagnosed with this kind of illness, he may be grieving for the child he didn't get and/or for all the things the one he got might not get to do.I hope I have helped.Andrea
Good morning,When Emily was diagnosed 19 years ago, we were told that 75% of marriages with a child with special needs ends in divorcce...that was a staggering number to us! However, today we celebrate our 20th anniversary!I am the primary care giver (and always have been). Emily's dad works hard and can bring home more money than I can so the logical move for us was to have me do all the running so he could "bring home the bacon".He does go to hospital visits and such when I ask him to but as Emily has gotten older, her care has started to fall into her own hands. I have always been the "realist" as has Emily, but Dad hopes that Emily will outlive us all~! Barbara<img src="i/expressions/face-icon-small-wink.gif" border="0">
It's time for your husband to grow up . Yes, it's hard to accept the facts that your child has a terrible illness. But he needs to accept it and go on with life. My daughter was born with CF and I was a teenager at the time. My parents were and still very supported. I had to grow up fast and learn to accept what my daughter has. You have to let your child grow up without the fear of his or her illness. We all have been through some rough times. My daughter is 16 now and does everything she can do. We have encourage her to make the best of things. She takes each day as it comes and has a GREAT lookout on life. It's time for your husband to help you. Soon your child with pick up on how he feels. Your child doesn't need this. YOU MUST ENCOURAGE YOUR CHILD IN EVERYTHING HE DOES AND MAKE THE BEST WITH WHAT HE HAS. kmd
<img src="i/expressions/face-icon-small-smile.gif" border="0">Hi Murgie, I was in your shoes about 14 1/2 years ago when my son was diagnosed w/cf.I thought my life was falling apart at the seams.My son started off his life in the hospital and stayed in there for the better part of his first 3 years of life.In the beginning it was really rough because he was a really sick little boy.My husband would stay away from the hospital as much as possible and we would fight about it every time we would see each other.I thought he just did not care and that he thought I was living my life for our sick son and was not giving him and our other son their share of me.It got so bad that I almost had a nervous break down.I was doing everything from meds to chest pts hospital stays,if it had to be done I did it.I began to resent him and he began to resent me.I could not understand why he would not let himself feel anything for our son and then one day (after being told day after day our son was going to die)the doc came and told us that he would be okay and that with care and meds he would live a long life,my husband broke down and let it all out.He did not not care for our son he was scared to get close for the fear of losing him.He felt as long as he was not real close to our son it would not hurt so much.He was wrong and he knew that the min. he saw him smile in that hosptal bed.He wasted alot of time feeling that way.He still has a hard time coping with the fact that our son may die but he has learned to live in the moment and not dwell on that side of it.Our marriage has really gotten stronger over the years I feel because of the cf in our family.It is still hard at times but we will make it because of the lessons learned.Now we are dealing with a teenageer w/cf and thats hard.LOL.Hang in there though whats meant to be will be.I agree with the rest I think he may need to talk to someone and let it all out,and maybe if he can let it all(his fears,resentments and insecurities) out in the open things will start looking up for you guys.You are in my thoughts and prayers.PJPS:My husband and I will celebrate our 19th wedding anniversary June 2Good Luck
Hi Murgie!I am a mother of a two daughters and my youngest has CF. She is two now and has been very blessed with a mild case of the illness so far. We have not had any hospital visits yet so I often don't even think about her being sick (except the meds and therapy tend to remind!). However, I had a very difficult pregnancy with a hospital stay of almost 3 months. Two of which I was on bed rest with the baby and though she was born one month early she was fine (we thought) and I ended up having to stay for another 3 weeks due to complications during the birth. The fact that I fought so hard to try and have a healthy baby then nearly lost my own life doing so was hard enough. But when I had only been home with her for a week we got the phone call that something was not normal in her little system. The point I am making is that I can relate to both you and your husband. Though I would not ever consider ending my marriage because of CF, I had a very difficult time allowing myself to love my daughter. After all I had been through I blamed myself and was so afraid to get close to her for fear of loosing her. At her first clinic visit two things really stand out for me. Her nurse telling me that "we'll be seeing a lot of each other" to which my response was "I don't want to be seeing a lot of you". It sounds mean but at the time that was how I felt. At our first meeting with her Dr. I looked him dead in the eye and said "so what you're telling me is that this will slowly kill my child?" Being the wonderful man he is he replied simply "I hope not." Her doctors are of course now one of our biggest blessings and we love them all. My attitude had changed from mourning the loss of a child that never died to loving the child who embraces and enjoys life. She has made me smile every single day and I'm sure your son does the same for you. Hold onto this. Research has come so far in the last 30 years and your son will likely outlive you both! Just please understand that sometimes the hardest thing to love is the one thing that you fear will hurt you the worst. I hope this has helped you. Keep up the diligent and wonderful job you are doing for your son. Sometimes the thought that really helps me is that God gave me this child because he knew he could bless others as well as myself with her and that He chose me as her mother because He knew I was strong enough to be so. God Bless,Jennifer