What is the right age to take responsibility?

[arabeth]

Hi everyone...

I'm wondering what other people think is an approporiate age for a CFer to begin to take over some of their own care. My husband and I go around and around on this issue and I need some insight from people who have already gone through this. My older daughter is almost 10 and my younger one is 5. My husband feels it is totally fine and healthy for the 10 year old to mix the meds and basically take care of the morning vest and breathing treaments for both of them. I am gone to work a couple of hours prior to my daughters getting up. My husband works late and is still sleeping when they are doing their morning treatments. I have asked him to please get up and help them but he says it will make them responsible for themselves and that they need to learn that responsibility. I know they need to learn that but at what age? Isn't she a bit young? My concern is that they won't adjust the numbers and cough like they should. I fear they are not doing a very good job when they are not being supervised. (he always points out that they are extremely healthy and have had no problems so that what they are doing is working)... Also, I am afraid that giving her too much responsibility at too young an age will make her resent doing the treatments and rebel in the future. My husband thinks the opposite and that giving her the responsibility now will help her when she gets older. I'd love to hear what other people think. I could care less if I'm right or wrong, I just want to know what's best for the girls. What has worked for you guys?

Thanks for any suggestions...
Renee

 

[IG]

Wow, this another controversial subject on the boards. Renee it depends on the person. There really isn't a right age for kids to begin taking over their own medications. I was around that age when I began taking over my nebs and other things. Personally I didn't have much of a problem doing them on my own. I had the incentive of staying on the internet for as long as I did my treatments... which meant they lasted a long time. It sounds like she is already doing her morning treatments by herself? Maybe you should just continue to do that and monitor her evening ones until you are sure she's got it down, and you'd think that she'd do all of the settings. I think at some point in time all of us resent having to do treatments because of the CF, but I think for the most part we understand that if we don't do them the consequences are bad. That's just my thoughts on that. I that giving her some responsibility will help when she gets older, once again my personal thoughts. But like I said, it depends on the person.

 

[anonymous]

I can't say a specific age, I too think it depends on the person. Personally I think if they are taking their treatments at all then you must be doing something right. By the time I was 10 I was already rebelling against my mother. I think maybe the idea of taking care of a younger sibling could be good for her. I was the youngest child so I always had someone else taking care of me. I have 3 siblings with CF, so we would all get together to take our treatments. The older ones didn't seem to have a problem, where as I would fight so I wouldn't have to. I think a lot of them being good was to be a good example for me. They were more concerned about me than about themselves. Sometimes I wish I would have had more responsibility. Although I have worked hard my entire life at other things, I am still not the most devoted person to taking my treatments. I have been lucky in that aspect. I'm still very healthy.

--Ann
25 w/CF

"Life is a bed of roses. Where there's good times, and there's bad. But the good times out weight any of the bad times I have had."

 

[AbsintheSorrow]

It changes person to person, but I've been doing it myself for quite some time now and I'm still doing fine. I don't think it's fair, however, to make the 10 year old do it for the 5 year old. I think doing her own meds is fine, and she won't resent that, but if you're making her set up the 5 year old's meds also, she might just rebel against that at some point. But that's just my opinion.

 

[anonymous]

Hey guys, Emily you've said it! But I think a little more would have been better so here it goes. With all do respect, it sounds like your husband is just LAZY! How dare him give a CHILD of only 10 yrs. of age the responsibility of health, care and future issues and outcome of a serious disease, and put it on the shoulders of an already FRAGILE life. Not only does she have to deal with her own issues of self preservation, but let's just give her the responsibility of the life of a five yr. old too. Shame on him. Being responsible and active in her own treatments is a great way for her to mature and grow to understand this awful disease, however, she has ENOUGH to deal with all on her own. On the other hand, it is YOUR job to ensure that she does not take on the responsibility of keeping her sibling healthy and safe....That is yours and your husbands job. Can you imagine how she would feel, if her 5 yr. old sister became very ill, she would feel totally responsible,seeing as she is the main CARE provider. Do you really want this on her hands, or are you gona kick your lazy husbands butt out of bed in the morning to help in the care of your two precious angels? Remember, husbands are a dime a dozen, but your children are irreplaceable.

mother of a 4 yr old girl with CF and 3 yr old boy without (no husband) !!!

 

[anonymous]

Hey it's me again, in case your wondering or before you choose to comment, I chose to have children on my own. Bitter, not at all. I adore my children and care for them to the best of my ability, I just hate hearing people second guess what is right when it comes to the well being of their children. A husband that gets an extra couple of hours of sleep in the morning/ verses an extra 10 yrs. on my daughters life. HHHHHHMMMMMMM I wonder???? What do you all think? I have given my daughter a little more responsibilities then most little girls her own age, because of her disease. Such as..she's learnt to swallow enzyme capsules at a very young age, 1.5 yrs old. (very proud of that)She remembers not to flush so mom can check her stool, (little brother hates that),she tries to identify the cause of her tummy ache by remembering what she did that day, and oh ya, SHE does not take her own treatments, does not measure anything out on her own, does not make her brother breakfast nor does she have to vaccuum or make sure her family survives. That's my job!!!! 10 yr. old, children go missing every year never to be seen again let alone death by disease. Treasure the time you have with both and don't cut her life short .. for your own SHORT comings, because, what you do for her in the first 16 yrs. of life, will determine her next 30 yrs.

 

[ladybug]

Hi, Renee.

I just had a little something to add.... I do think its great you're letting your daughter be responsible for her own well-being. Perhaps, you could ask her if she wants to do it on her own or wants you to help her. My parents were usually very open with me. Once they knew I could do things on my own and do them correctly (of course, this is most important), they asked me how I felt about them doing things for me. (Usually, I liked when my parents helped me out cause it took some of the burden off me.... though, once I hit my teens, things started changing and I wanted to be independent.) Thus, they let me do my own measuring, cleaning, etc. of treatments, but if I didn't DO them or rebelled, they were "all over me" to take care of myself or else. They didn't let me get away with not doing what I was supposed to, even if it meant setting the meds in front of me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I'm sure every situation is different. Do you have a social worker at your clinic you could mention some of these concerns to? I'm sure you're not the first person to deal with this question and they should be able to help give you pointers on whether you/your husband should distance yourself at this age.

I did want to comment on the 10 yr. old helping get the 5 yr. old's meds and treatments set up.... Recently, cff.org did a live broadcast about germs and CFers. Basically, the way I understand it is that its a no-no for CFer's of the same family to do such things as share treatment equipment, etc (not that your daughters are sharing), but handling each others' treatments is probably similar.... The website also makes it a point that you stay 3 feet away from others with CF. Granted, with family members, it is MUCH harder, and sometimes impossible, but the fact is that your 10 year old may contract something from school (or anywhere for that matter) and inadvertently pass it on to your younger daughter by, say touching the mouthpiece on her nebulizer. With CF, as I'm sure you know, we can have different infections/bacteria at any given time or day (this is why we culture different things at different times).... Your 10 y/o may have a strain of something that hasn't even been detected, and by getting your other girl's meds ready infects her with it. Just something to think about. Perhaps, your husband should look at it that way. Yes, he may want them to be responsible, but what if they're sharing germs and infections because of this? If you haven't checked out that webcast, I'm sure its on archive at cff.org website. It was very interesting and shed alot of light on infection control and staying healthy.

Finally, I wanted to mention that it is my opinion that both girls should at least have an adult present in the morning to make sure they're doing everything correctly... even if he lets them mix and set up their own treatments, he should at the very least be in the room with them in case they have questions or accidently do something wrong. He wouldn't have to look at it as "doing it for them", but rather being a responsible parent and overseeing what was going on. (Of course, as mentioned earlier, he would be doing it for the 5 y/o to cut down on germs.) I agree with the other posts that he needs to be around and not sleeping in. Keep us posted!
Good luck!

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

 

[arabeth]

Hi again everyone. Candice, Ann, Emily and Sonia, Thanks very much for your advice, opinions and information. In response to Emily's post concerning whether we make our 10 year old (Kaitlyn) do her sister's (Kacie's) treatments, I really should have clarified that better in my original post. That's a very legitimate concern and I appreciate it. We (my husband and I) have NEVER, EVER told our Kaitlyn that she HAS to do anything for her sister in regard to her health. My husband and I did all the mixing of meds and took sole responsibility for treatments until about a year ago when Kaitlyn starting expressing interest in mixing the meds. She thought it was cool and begged me to let her do it. I was cautious at first but gradually started letting her do it. Of course I was always there while they were doing the treatments then. About 6 months ago I changed positions at work and started going in a lot earlier. At that point, Kaitlyn had already been basically doing the treatments (because she wanted to) on her own anyway, though I was there. So, it just worked out naturally that she continued them after I was going to work earlier. She has never once complained or said anything negative about doing it and if she ever did I would most certainly look into other options. I think I will have a talk with her to see how she feels about the situation just to be sure. Again thanks very much for your information.

One more thing in response to Sonia's post...I really appreciate your consideration in the response you posted. I completely understand what you are saying. At the same time there is no way on earth that my two daughters are ever going to stay 3 feet away from each other. I know you aren't telling me that they have to, just that the CFF recommends it, but to me it's absurd for them to expect or even say that about siblings. My daughters are extremely close and there's no way I could do that to them. As far as mixing meds and touching treatment tubes, yes, that is something I should and will look into more closely. I will talk to the girl's doctor about that issue. I don't want to risk any more cross contamination than is absolutely necessary in living in the same house. Thanks for bringing that to my attention.

Now, as for the anonymous poster...There was absolutely nothing in your post that was in any way helpful or considerate. You were mean, hurtful, rude and completely out of line. I could spend hours defending myself and my husband here but honestly, your opinion isn't worth that much of my time. You did hurt me and made me cry, so if that was your goal, you suceeded. As I sit here typing, I have tears streaming down my face. I do my very best to be as good a mother as possible, hence the reason I was concerned enough to risk your wrath by asking the question in the first place. You did teach me one thing though, and that's that it just isn't worth it to ask a question here. For the help I received, I am very grateful... but I don't think I would be willing to ask another question on this forum. It's just not worth the pain caused by angry, bitter, inconsiderate people like you.

Renee

 

[ladybug]

Renee,
I am so sorry you have had the experience you have with this forum. Most of the posts are helpful, and I hope you will give it another try.
I think you'll find a great deal of wealth about infection control on CFF website, and I wish you luck in this very tough situation. It sounds like your 10 year old is very independent, and that is a great asset when dealing with this disease. I did want to clarify that I also think its bizarre that CFers living in the same home would ever stay up to 3 feet apart at all times.... I just mentioned that because that was a main thing this particular webcast talked about and I was using it more as an example of one of thier main platforms than anything. I try to stay 3 feet away from other CFers in the clinical setting, but sometimes even that is difficult! (We are human, right? ha ha!) I can't imagine not being able to touch or hug a sibling or friend because of germs... I mean, you still have to LIVE, right?!? <img src="i/expressions/face-icon-small-wink.gif" border="0">
Anyway, best of luck, and I sure hope you post again with any questions of comments you may have. Keep in mind, most on these boards are here to help.
Take care.

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

 

[anonymous]

Dear Renee, I am anonymous. I have been posting here for awhile now, and never have encountered a question such as yours. To have hurt you emotionally wasn't my goal, to give you a RUDE wake-up call was. You said in your original post "I have asked him to please get up and help them but he says it will make them responsible for themselves and that they need to learn that responsibility. I know they need to learn that but at what age? Isn't she a bit young? My concern is that they won't adjust the numbers and cough like they should. I fear they are not doing a very good job when they are not being supervised. " Inconsiderate, YOU said this!!!!! Did you want me to sugar coat it for you? You are doubting yourself and your husband and then have the nerve to bring fault to me? I told it like it sounded. And it sounds pretty bad. Why wait until a few years to see if your husband is in fact RIGHT, or just do the right thing and help your children now. Their are no guarantees, but are you willing to gamble with your childrens lives because of your errogant husband who thinks sleeping is so much more important then the years your girls have to live? If you would have said that your husband infact is not at home either, at the time of the treatments, I would have given you a whole different, more supportive response then I had. However, he is infact in the home, nearby, and like you said, your daughter can still do the treatments if it makes her feel special, but SUPERVISE! SUPERVISE!SUPERVISE! I am by far bitter, and can honestly tell you, I cry every day since my daughter is born. So if bringing tears to your eyes has hit a nerve, so be it. By threatening not to ever post again, you are only hurting yourself. Sometimes it takes the opinions of others to make us aware of our mistakes. Don't get me wrong, I am not without mistakes either, however, my children and their best interest have always out weighted that of any mans. Cause a mother just knows!!!!!!! Seperating your girls is outrageous, your right. But I worry your defensiveness is not at all in their best interest but that of yours and your husbands. I have never had an argumentative post on this sight ever nor is it my intention to start now, but really, trully consider what is BEST for the GIRLS. Their health is probably good, your right, but that is for RIGHT now. What about later, next week , next month, next year!!! Learning RESPONSIBILITY starts by example and if by EXAMPLE your husband is in bed while they learn it, I ask you is that really teaching them RESPONSIBILITY!!! IF your husband finds it too difficult to get up in the mornings, maybe you should reconsider your possition at work!! Try quitting, to ensure your children are receiving proper supervision and let your husband work more hours to make-up the difference. I just bet he will reconsider his position on waking up a few hours earlier, if it meens having to work less shifts on the job!!!!
Good luck!

 

[anonymous]

Renee, People have been posting inconsiderately within the past few months under the guise of anonymous. They don't have the right to tell you whether you are wrong or right, you were asking for advice. My advice... ignore the anonymous posting... they just mean to hurt you, or to start arguments on the boards (which they have obviously accomplished) Follow your instincts, there's nothing better in the world than that.
-C

 

[anonymous]

People judging people is wrong! We all have enough on our plates for us to be beating our heads together. What works for some does not work for others and vice versa. You can bring up concerns without name calling and ugliness! I have a 12 year old son that has been doing his own treatments for years. He is not supervised. He is extremely healthy. I am proud of his independance. I will continue to encouage him to take more responsibilty for his health, just as I do for my children w/o CF.
Tina

 

[Liza]

Hi Renee, I just wanted to add my two cents to your question. 10 is a great age for your older daughter to start taking responsibility for her treatments. I am assuming you are there in the evenings and know how well she does her PT. Trust is something you have to have in your kids at some point and 10 is a good age to start. Trust that she will do her treatments the same in the morning, when you are not there, as she does them at night. If she took an interest in mixing her meds that's fantastic. It shows responsibility on her part. There will come a time when she will want to spend the night at a friends house or visit grandma and grandpa. You will have comfort in knowing she will be doing her treatments correctly. Yea, yea someone might say well grandma and grandpa should know how to do it. Sure, but they don't do it on a regular basis. Staying over at a friends house, I don't expect to deny my child that nor do I expect her friends parents to become nurses to my children. That is my opinion. 10 is a good age if they are ready and show signs of being ready. Your younger daughter though should have some guidance from your husband. Do they get themselves off to school too? Here, I'm talking from a stay at home mom's perspective. And I realize not everyone has that luxury. Too it seems though, that if Dad is at home (sleeping, I know) he can take an hour out of his sleep or maybe a half hour to be sure all is going well. Depending on what kinds of treatments your 5 yr old does. Vest? That's pretty simple I think (not sure because we don't use one), percussion... she needs help with that one at 5 yrs old., Pep or flutter she can do that on her own. If your 5 yr old has meds to mix is it just albluterol? They have a pre-mix available. She's old enough to put that in her neb. and turn it on. Tobi, well you just squirt that in too no problem there. If she's actually having to mix Coli or Gent that's a whole other issue. Both of those though can be pre-mixed by you in the AM. Handling a syringe at that age though, I wouldn't be comfortable. Again though, you can put that in her neb. and boom it's all ready and waiting for her.

Here's my opinion on the staying 3ft away from each other issue. They are sisters, they live in the same house. There will come a time when they'll want to stay 3ft away from each other. Well OK that's an exageration but you get the idea I think. My girls (17 & 14 yrs) both w/CF hugged and kissed and rough housed and everything just like any other kids. There was no way in you know where that I was going to keep them away from each other. In an emergency they have shared an inhaler or a nebulizer. After it had been sterilized. I'd rather take the chance with a sterilized neb than not do the treatment at all. I have always gotten their "stuff" together for trips. We took one recently, remember they are teenagers, and although my 14 yr. old was asked repeatedly by her dad, does she have EVERYTHING for her treatments. She forgot one of the most important parts. Both nebulizers. I had told them both, I AM NOT GETTING YOUR MEDS TOGETHER, be ready to leave when I get home (I just recently started working out of bordom, there's not much need for a room mom in HS). We were going to the Mall of America for the weekend. She felt really bad and could not believe that she forgot her nebs. What can you do? Turn around and drive 7 hrs back? Nope, we washed in hot soapy water, learned a lesson and pressed on. Up until last year, we mixed my older daughters stuff, yet she knew how, and "did" her treatments at 6AM (during the school year) while she was still in bed. Figuring she's a senior and going off to college next year. We dropped it all and said, your on your own. With both in high school we had to do some shuffling of bathroom time but they are managing to get it all done. Oops! I went on and on sorry.

So, my opinion, your husband is on the right track but needs some tweaking. Yea, they need to know how to do it for themselves... if they are ready. If they are doing well then they must be doing it well. But I think he should get up for that half hour or so and be in the same room while they, well the younger one, is doing her PT. Dozing if her PT is the vest or flutter or pep. He can doze with one ear open.

Please continue to post. Try to ignore the ones that lash out. I know it's hard when they are attacking you. As you read it, if you feel they are getting offensive then just stop reading that comment and skip on to the next one.

Take Care,
Liza
(Mom of two teen girls w/CF)

 

[anonymous]

This is truly getting out of hand. I'm inconsiderate, argumentative, you ask a stupid question you get well, let's just say an opinion! Renee, you are the one asking for advice! My advice to you is kick your husband out of bed and have him supervise your girls. Ignore my post, don't care! But next time, be aware that you asked and people reply. The same as when I post and others reply to mine. No harm taken, just someone elses opinion. If the truth hurts so be it, if at all I'm on the wrong track then I appoligize. But consider this, if your husband isn't their for your girls, and your at work, who is taking care of the three boys? Is there not 5 children in the home? Wow, when does he find time to sleep. I have two children and catch maybe 4 hrs a night and that is a good night. Don't worry I won't bother with this post anymore, obviously your lack of confidence and assurtiveness towards your husband is leading you and your children down the wrong path. However, I do hope I'm wrong for their sake. Good luck and take care.

 

[anonymous]

And to the other posts. "Go with your gutt instinct" sounds to me like her gutt was telling her, that he needs to get out of bed in the morning! Like someone said "half and hour or so out of his sleep is not asking too much" they might have said it in a much more subtle way, but in the end means the same as I said just nicer. Why was I so straight and to the point...some people need a hard look at reallity. If I was seriously putting my children second I would only expect and accept a swift kick in the ******!!!!!!!By anyone who would think it mattered. I love and adore my kids, and I guess I just don't understand others. I have given up atlot of my life in order to have children and nothing can ever step in the way of putting them first. sorry to have come accross inconsiderate, I'm just tired of others putting their own needs first, knowing how hard it was for me to have the two children that I have now and what I went through to have them. Unselfishly I might add.

 

[kellimylove]

Renee,
I don't know if you are still checking this considering the way you were treated and I think who ever wrote that was rude. So I'm sorry that you were treated that way because I know that people who have, or have to deal with CF need a lot of support.
Regarding your question. If your 10 y.o. feels capable and it's 'fun' to have this responsibility I personally think you should let her embrace that. It's better than the opposite of forcing her to do it. If your husband is still sleeping perhaps the girls could do thier vests in the evening. That way you could supervise and make sure they are doing it as they should, but also let them do it 'their' way in the mornings. I used to work with kids and one thing we would do was make a star chart and everytime the child would do something (as in proper treatments in the morning) they are able to put a star on thier chart. This may seem very elementary but it seems to work.
As for me, I have CF and I didn't do well to take responsibility for treatments and my parents had to nag me to do. As an adult I see the importance but it would have been better, I think, if I would have done this for myself. You do need to be careful for the germs, etc. with your girls but you already know that. I have a niece with CF and we do a lot of hand washing, do not share food, drinks, chap sticks, etc. and we keep out of eachothers faces. Instead of a hug and a kiss, we give a hug and a squish. It works out perfectly.
It sounds like you are a dedicated and concerned mom and if you need any advice from a person with CF, please e-mail me, as I know the importance of support and having someone to ask questions and share ideas with.
Take care-
Kelli 26 with CF kellimylove@hotmail.com

 

[anonymous]

I think 10 is a good age if your child is pretty responsible. CFers often feel like they do not have enough control in their life and this will allow her to take control of her health. Vest, flutter, or pep, and inhalers are pretty straight forward and as long as she is taught properly she should be fine. I know that sometimes when I was younger I would skip a treatment once in a while because I didnt realize the importance of it, so like someone else said your husband should maybe listen for the machine to go on...
Oh and as for the keeping sisters away from eachohter....it seems impossible. They are sisters...there is no possible way to seperate them! I have a little sister (no CF) and she used to crawl into my bed at night sometimes and we would sleep together (when we were really little)...we would hold hands and cuddle...even if she did have CF there is no way I would have missed out on those memories and bonding...loved ones are more important than the small chance they may make each ohter sick. I know you didnt say you kept them apart and I am just backing you up by saying I would never keep CF siblings apart...I know Sonia was just looking out for your kids and I love that about these online posts because we look out for people we dont even know (except some mean spirited people) but I just wanted to let you know that I personally dont think siblings should be seperated. Sorry that you were disrespected on here and I hope you dont give up on getting support even if you decide not to get it from this board. I think its so important to know you are not alone and that there are people who have "been there done that" with CF who can offer advice from their own experiences
Emily (another one lol)

 

[AbsintheSorrow]

As long as you're not forcing the 10 year old to do the 5 year old's meds, then it works for me. Haha. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[arabeth]

Ok...well, I've really tried hard to bite my tongue but I just can't do it. Another of my faults, I suppose ...

First I'll touch on a few of the easier comments and questions...The girls do use the vest. They each have their own so they do them at the same time. They do not use a syringe to mix meds...only the premixed viles of albuterol and intal...and the TOBI. So it's basically pretty simple. And yes, I am home in the evenings to do the treatments. I think it was a bit extreme to say that I am having a 10 year old take total responsibility for my 5 year olds health care and life. I don't know about Miss Anonymous, but for me there's much more to caring for them than 1 morning treatment and that's the only thing I'm not there for. It's not like my 10 year old is putting them both on a bus and heading off to the CF center for appointments...I mean, give me a break. Oh, and my 12 year old son is also in the house in the mornings when they are all getting ready for school and doing treatments so he is somewhat supervising as well. We live across the street from the elementary school and yes, they do get themselves ready for school. There are plenty of older kids here to help the 5 year old if she needs help.

I feel the need to defend myself here because my parenting ability and even my motives have been questioned. That's pretty hard to take. So I apologize in advance if this turns into a novel. I'll do my best not to do that. My husband (NOT my children's father) is anything but lazy. He is a wonderful, loving and hard working husband and father. He has taken on 3 children, 2 with CF, as well as his own 2 children, and has never complained about doing it. My ex husband, biological father to my 3 children, was an abusive alcoholic. He never went to a dr visit or even visited us at the hospital when my daughter was sick. He has nothing to do with the kids now. I have sole physical and sole legal custody. When my first daughter was born I knew right away something was wrong. She was constantly starving, but would only nurse. She refused a bottle. And even when she was 7, 8 ,9 mths old she would not eat any food, baby food or otherwise. She never ate a bite of food she didn't throw up until she was 18 months old. She started wheezing around 9 months and wouldn't quit. I took her to every dr within a 40 mile radius of where I lived. I begged for help but just couldn't get it. I was told she wasn't gaining weight because I spoiled her by nursing her for too long. They said she needed other food but as long as I let her get her way by nursing she wouldn't have to eat so it was my fault. I was told the loose, greasy BM's were simply a result of being breast fed...I told them I had an older child who had also been nursed and it was different but they didn't care. I was told the wheezing was the result of allergies. She was hospitalized multiple times by her second birthday. I called every nurse line I could get my hands on. I exhausted all the doctors in the area. She finally got pheumonia and nearly died and spend her second birthday in the hospital. They then put her through allergy testing (no fun). I had been reading medical books and stuff the whole time trying to figure this out. I had never heard of CF. Finally I came upon an article about CF and immediately knew that she had it. I went to one of the pediatricians she had been seeing and demanded he write me a srcipt for a sweat test. His response was "Are you and your husband related?" I nearly fell over. I convinced him that we weren't but that I still wanted the test done. He didn't want to do it. He said there was no way that is what was wrong with her. But I persisted and said I wouldn't leave until he gave me a prescription for the test. I finally got one. I went straight to the hospital. He had convinced me I was wrong and Iwanted to get the test over with so I could relax. Well, I wasn't wrong. The test they did at this rinky dink little hospital was one that the CFF doesn't even recognize. It looked like a guitar tuner. I asked them what was normal and what was not....they told me that 0-60 was normal...60-80 was questionable anything over 80 was positive and the maximum # was 150. Her's went to 148. I nearly fainted. So, anyway...the rest is history...we know she has CF and we went to the CF center. They put her in the hospital for a mini tuneup (5 days)...that was her 3rd birthday. She has NEVER been sick again. That was 7 years ago. Yes, she has cultured pseudomonias a couple of times and been treated for that but has never showed any signs of illness. So if you ask me, we are doing something right. I ended up pregnant, (not planned, but certainly not regreted) again and 1/2 way thru the pregnancy found out she also had CF. She was properly treated from day 1 and has never been sick (other than a few ear infections). My 3 sons get strep quite often (one to the point of having his tonsils taken out) but the girls have never had it. They are extremely healthy. So, I really don't think one could say that I have neglected my kids.

Just after my youngest daughter was born, the abuse I was receiving from my ex pick up the pace. He started threatening me in front of the kids and I knew it had to stop. I was a stay at home mom without a dollar to my name and no where to go. One night he pulled a gun on me. I basically waited it out saying whatever I could to pacify him because I knew he'd eventually pass out. When he did I took the kids and left. I went to a friends house but she didn't have room for the 4 of us. She did, however, have a camper. So we hooked up the electricity and bought one of those small propane tanks for heat. We lived there throughout November and December. I remember several nights waking up shaking because the gas had run out and it was freezing. We'd have to roll up in blankets and walk across the field to the house and wake up my friend to let us in. We'd finish the night out on the living room floor. I also remember once writing a check for diapers and it bounced because my ex had taken what little money I had out of the bank to buy beer. Finally I found a job and managed to save enough to afford rent somewhere. I even enrolled back in college. I thought things were really looking up. I got through one semester and we were doing really well when my ex finally lost it. He held me hostage one day for 2 hours in front of my children. He kept a knife in my side and the other hand on my throat. My kids saw the whole thing. I managed to get free once and tried to run but he came after me with the car and was going to run over me. I ran into the woods and he stopped and got out and caught me. I guess he eventually began to sober up because after about 2 hours he let us go. I called 911 and filed a report. I went to the county attorney and asked what I should do. He looked me in the eyes and said that they only real way I could protect myself and the kids was to leave town and not come back. I had student loans coming up that were suppsed to pay for the next semester, so instead I bought some plane tickets and got out of town. I moved 1000 mile away and started over. It was not an easy thing to do but it was all I could really do. I got lucky and landed a really good job which provided unbelievably good insurance for the kids. Then I met a man who treated us very well and 1 1/2 years later we were married. He also had 2 children who he had sole custody of as well. He had accepted my kids, CF and all, with no hesitation. He adores them and is always there. If someone starts to light a cigarette around them he jumps before I can to day NO... He goes to the dr appts with me. He is a very good father and husband and even though sometimes I may not agree with everything he says or does, he doesn't deserve to be called lazy or sorry or whatever Miss Anonymous said. No two people agree on everything when raising children. That's not possible. And by the way, he does get up in the mornings and makes sure they have the vests on...sometimes I'm even running late and see them myself...my concern was him not being right on top of them adjusting numbers on the vest like I would be if it were me. He trusts them to do it. I still think they're too young. (at least that's what I was wondering about)...Maybe I did a sorry job of asking the question to begin with. I never expected it to turn into this.

So, Miss Anonymous, hopefully that gives you a little insight on my life. I am a good mother. I have been to hell and back for my kids already and I'm sure there will be more trials in the future. I will be there with bells on, as will my husband. I work early hours so that I can be home when the kids get home from school. And quitting as you suggested would not be an option. I have worked very hard to provide them with everything I can and we are doing very well. One thing I would have to say to you is that if you only have 2 children and can only manage to get 4 hours of sleep a night, that seems like a problem. Maybe you'd be less stressed out and less likely to jump everyone else if you hired a sitter and got some sleep. I have 5 children and a full time job and I still get 7-8 hours a night of sleep. And if you are seriously crying every single day, I'd consider looking into some help for that as well. It just doesn't seem normal to me. But that's just my opinion.

Renee

 

[ladybug]

Hi, Renee.

I just wanted to thank you for sharing that difficult story with us. You truly are a great woman and mother to your children (CF or no CF). Please know that you are an inspiration... to go through the ordeals in your personal life as you have and to also fight the CF that is a scary and real part of your daughters' lives. I know we all have our own personal stories of triumph (as implicated by all the older CFers who post to these boards.... it is nothing short of dedication and a will-to-live that has gotten us this far) and I really appreciate you sharing.

I never for a second even considered you a bad mother, or your husband a bad father. We all have questions while battling this disease, and each one of us experiences it quite differently. It takes alot to post a question and sometimes even to read the answers or comments you receive. Sometimes, people bring things to light you had never thought of, and other times, they reiterate what you already knew in your heart. I hope to never run into a problem of disrespect while seeking knowledge, though when dealing with CF, somewhere down the line, I think we'll all run into someone or other telling us how to do it or how we're wrong if we do it a certain way.

The fact is, in the end, the opinion that matters is your own (and of course, your family's). You must do what you believe is right in your heart. You can only do your best (which it sounds like you've done.) I like to think I have a handle on my CF, yet I enjoy forums like this that I can get others' OPINIONS or other ways of looking at things. I would hope they'd never attack my character simply because of a question I ask. Please know that your story touched me. You are a brave and strong woman. Keep up the fight and you will never loose.



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