I don't care if most people understand or even really know that DD has CF. In fact I don't go around introducing my child, and say "oh by the way, she has CF too." So it's nothing like that.
But, I do want/need the important circle of support to know and understand to some extent that she does have CF. Those being, me, my husband, my mom and grandma, MIL and DH's nana. They are really the most important people and I need them to understand. After DD having the pseudomonas and stuff, MIL finally apologized and said she must have been in denial, and she's sorry if she hasn't been as supportive because of that. GREAT, that was awesome to hear. I mean, DD doesn't have the typical CF, just mild because of the different mutations. But, still what we are going through, I'm glad I heard her say that.
Now for DH's nana (MIL's mom), it's a different story. Almost every single time DD and I are at her house, she says and I can quote, it's always the same "Yep, we have a healthy baby, we prayed for a healthy baby, and that's just what the Lord gave us, she doesn't have Cystic Fibrosis." It just furiates me that she would say this time after time. First of all, you CAN'T argue with the fact they have done the CF testing, not once but TWICE, once when I was pregnant through amnio and the other time right after she was born. Both times she sure enough has CF, 2 mutated 7th chromosomes. For her to NOT have CF is just as off the wall as if she would just miraculously change into a boy overnight. I mean, DNA just doesn't change like that. I try to tell her that she DOES have CF, but the woman never seems to understands. She thinks I'm crazy or something. But, I'm about to go off on her.
My response is generally "yeah, it's a great thing she doesn't have the digestive problems, and it doesn't look like she's going to have serious problems, we've been bless. But she does have the CF, no matter how you look at it, so we just have to stay on top of her care and keep an eye on her."
Her response is another denial thing.
I'm seriously at a loss as to what else to say to the woman. Maybe get a print out from DD's w/ the test results? Maybe just tell nana, I'm sorry she's in denial about DD having CF, but at this point denial isn't going to help this baby get better. Ask her how many people has she known that did NOT have CF but had psuedomonas growing in their lungs. I mean, it's really getting old w/ the comments she's saying. What I'm hearing by her comments, is that I should not be taking DD to the doctor for her CF because she does not have it, which means no treatments for the pseudomonas. I'm hearing that I'm not a good mother because I'm allowing them to do things such as sweat test, swallow study, and surgery (bronchial scope) on her. That's what I hear from her when she makes her ongoing comments. I need some mighty powerful aminition to fight back. I feel like not only I'm having to fight against the CF for my baby, but that I'm also having to fight the important people in DD's life being in such denial. I'm ready to throw a gernade next time she makes a comment, and stop her or at least get it off my chest. Any idea??
There are alot of people that do not understand or know the disease. And unfortunately there alot of people who say stupid things.
We are campers, so when we dump our sewerage...well you all probably know with a CF kid how bad it can be. One day someone was walking around asking who dumped, well I blew her away with my comment about Sean's disease, and how lucky I was to have him and not healthy kids like her.
I am not a religious person, but I believe if we couldn't handle it, God wouldn't have blessed us with our special kids.
Original poster:
Maybe nana is too "old school" to really get it? Maybe it is her way of coping? Maybe she believes that her faith will cure your child? Maybe she's ignorant about CF?
It doesn't sound like she is going to change, so it might be healthier (emotionally) for you to find a way to tolerate her comments. One thing I've come to learn in life is that you can't force someone to change their way of thinking...you can educate them, try to persuade them, offer facts to prove your side, but in the end you can't make anyone believe something. What you CAN control is they way you do or do not react to them. The solution isn't ideal, but just accept what is within your control--your reaction.
I'm dealing with something similar... MIL and FIL pretend like there is nothing wrong with DS. They act irritated and insulted when I ask them to wash their hands before holding DS (as if you shouldn't do that with any infant!). Geesh...didn't know that hand washing was such a friggin' chore--is what I say in my head. But, I recognize what is in my control...they can live in their wonderful world of denial...I'll stand there holding my son until they play by my rules. If they don't play by my rules, they'll forfeit (did I spell that right?) the pleasure of being with their grandson.
I hope that you find a solution.... :)
My mom's best friend was a nurse, so when I had my son she told my mother that he will die at a young age, so my mother told me that her friend said my son is going to die. You will find out that alot of people do not know what it is or understand it. Every year I have to go to my son's school and make sure that everyone (the teacher's, nurses, office staff) understands what to do, he takes enzymes everytime he eats, so even that little snack in class he has to go down to the nurse or office to get his meds. He only slept over at two friend's houses so far and now that he is in middle school he is starting to get teased for being different.
my son just started the middle school too. Although I tell my sons parents about his disease, SM does not want his friends to know. Yes he goes to the nurse for his enzymes, and to cool down if the class is too hot. The district refuses to put air conditioning in his classes although it is on his IEP. So, since my son has not complained about this problem, how do you and your son handle the teasing. If this happens to SM, maybe I can help him get through it.
I know SM rather not go on class trips where eatting is involved, so he does not have to take his enzymes in front of the other kids. When he does, he hides it from them. Or, if he is at a friends house, he wont eat to avoid the enzymes there.
i totally understand the whole indenial thing. because he "looks fine" people assume that its okay for certain things. but calm done and breathe. her telling you that your baby doesnt have cf is like her telling you the sun is black. you know the sun isnt black, just like you know your dd has cf.
i would tell the nana that, yes, we prayed for a helathy baby, and a healthy, beautiful baby is what we have, but she still has cf. there are still precautions that we have to take to keep her that way. and thank god, that she doesnt have a more destuctive form of the mutation. but we still have to be smart about keeping her as healthy as we can. make sure she knows that she has to do some stuff differently if she wants her. it may sound like a crap thing to do, but i do it. i dont care who, i would rather people...even family...think that i am a paranoid witch than risk even the slightest chance. i dont allow anyone to hold my son if they are a smoker, been messing in the yard,cooking onthe pit.... even at church, i have made it clear, wash hands before you touch him, if your kid is sick, dont bring him by my son. i feel it is extreme sometimes, but right now, i can controll that.
i feel like life can be taken as easily as it is given. tomorrow is not promised to us, life is very precious. our babies are our miracles. especially with things like cf, everyday is a miracle.
I live in my MIL 's house and she don't get the fact that when he is really sick it is constant treatments and stuff her favorite quoate is he don't need that he is fine.... drives me crazy he is always going to need it and I will make sure he always gets it. UGH! I so understand.
I didn't read the entire post..(yeah, lazy reader today..) but i get what you're saying.
my family and friends understand that he has CF..and they get the idea of CF..but no one, to me, seems to take it seriously. they'll tell me like.."oh, you're over reacting", when i FREAK out about not cleaning properly or using sanitizers..or even just about bring him out.
I keep it simple. I just tell them "a simple, common cold..will throw him in the hospital.." and they kinda get it then. of course, they ask a million and 1 questions. but i would rather spend the rest of my life EXPLAINING if thats what it takes to keep him safe.
i also have family and friends that think he'll grow out of it. it's just denial. and it upsets ME because i;m like..no. he will NOT grow out of it. just face the facts..and deal with it. like my husband and i are.
argg! the world of CF is so frustrating lol.
*Kaeden William : My Son, My World, My Hero.
"Embrace the Journey.."
Thats funny. My MIL is the opposite, if my son even coughs just once while she is babysitting she will call me and tell me that I need to make a doctors appt and freak out. Obviously he gets colds all the time and we will talk to his doctor if it sounds bad and we up his treatments and all the necessary things, but he has never even had to be hospitalized even when he had RSV at 15 months old. She just acts like he is dying!! Sometimes I feel like she thinks we aren't doing everything we can for him. But on the other hand she refuses to help us with the weight gain, She fills him up on fruit snacks and juice. Even though we tell her that he needs to fill up on high calorie foods.
I also get the comment that he will grow out of it, even after telling people that it is genetic.
Something I have learned with my CFer, although I want our family to be aware that Caleb is sick, I do not push it to more then what they are comfortable with. For instance if I would have told great grandma the baby was sick and made her aware and grandma was no in any way in charge of any care for the baby, I would just let great grandma deal with it however she has to. i do not think she is meaning to put you down, I just think that is how she deals with it. And since I would pressume great grandma is most likely in her 70's I would just let her deal the best way she knows how. And her opinion is not going to have any baring on your DD's health and if you just let it roll off then it will be a lot less stress for you. You learn who your support is and who you have to let handle things their own way. Lean on your support when you need them. JMO
Trust me in the long run this only helps you. At first I tried like you are to make them all understand, the ones that won't won't, and those are the ones that only see Caleb when I am there.
My Boys
Hot Topics
- • Would You Become a Stripper for the Money?
- • Her DH Is Going Behind Her Back
- • Can You Believe What These Parents Are Doing?
-
Featured Member Group
BioMom & StepMom Drama DebateThis group is a place where bio moms and stepmoms can debate and discuss situations unique to blended families. Vent, get advice, and more!
What do I need to know to be a good advocate for my son?
- elliesmommy404
on Nov. 8, 2009 at 11:17 PM