What do you say to your child when he says he wishes he were normal?

scrapper1264

New member
Of course the first thing that pops out of my mouth is well, you are normal to me. Well, that didn't help at all! He said Mom, I am not normal! Then I thought I should say well, God makes us all different. But I don't want him to be mad at God! He is very compliant with all his meds but his bi-weekly Crohn's injection is what bothers him the most. Any help would be appreciated!
 

Aboveallislove

Super Moderator
Oh, mom. I'm so sorry. Our son is 3 and my heart already aches for the day when he realizes he isn't "normal." So I can't tell you first hand, but my thought is to not try to make it better but try to let him know you now how it feels . . and don't you? I wish my son were "normal." I still get teary eyes summer nights when we're doing his vest and nebulizers and other families are out walking with their kids and playing. (If DS catches me, he will ask why mommy has happy tears--what I call them--and I say "it's because I love you so much.") And I get sad when I can't just brush off a cough as a "normal" childhood thing. And so many other things. So I'm wondering if maybe later today you can sit down with him and say "you know Luke, you said earlier you wishes you were normal, and I didn't listen. I bet it is really hard having to do all these treatments. And those shots." Listen and mirror what he says, maybe with different words, for instance if he says "yeah, it stinks," maybe respond "i bet it must seem like you are always doing treatments and that is hard." And then add some good old "not many kids could handle it like you can. And maybe it is because God knew you could take such good care of yourself." If you haven't read Lisa Greene's Parenting Children with Chronic Health Conditions: Love & Logics book, I strongly recommend it. I have no idea if I'll be able to carry through when the time comes for the same questions, but the book has such great advise I'm doing my best to be ready.
hugs and prayers.
 

albino15

New member
Someone once told me that everybody has "something" in their life that they have to deal with.

weather it's physical, mental or emotional, so when you feel all down and out because of your "something," just remember that your not the only one.

It also might help if you told him it's OK to get mad every once in a while, as long as you don't let him get lost in the woods of self-pity. I get lost in those woods a lot. LOL
 

JENNYC

New member
I wish I had some words of wisdom... I just wanted to let you know how sorry I am and I'm sure my day will come!! Aboveallislove your response sounds good!! I absolutely dread the day she figures that out!! I just pray so hard that it doesn't change her personality! 9 seems so young to start going through that :( I'm so sorry!!!
 

Julie7

New member
My son, almost 9, says this alot bc of his digestive issues. I agree w earlier post that I remind him that everyone has to deal with something and that it could be worse. I try to teach him about different disabilities and give him the strength to work through it. It's ok to be upset, to vent, but also not to dwell on the negative bc that will make it worse. I try to be supportive but not overly baby him which might hold him back-ie I encourage him to do anything he wants (tang so doo, sports, music, playing with friends, etc). He is at the age where kids can be mean and point out that he has to take meds with lunch. I tell him that anyone who does is not worth his friendship (or he could simply explain it to him/her). Those are just what I try...it's a work in progress.
 
my daughter is only 5 so its a huge difference but I usually say that everybody is different and that some kids can't hear and some see and so far it works. She knows she has cf. Especially since she likes to watch minimini - a chanal for kids - and they started to add a tutor with sign-language for kids who can't hear - so she got interested.. Some times she says: why me and that she is angry cause she has cf and has to take alot and do inhalations - I just tell her she has the right to be angry and that I wish it wasn't so also - but we can't change this and must do the best we can. we don't have talks about a cure so far ... vertex started the program for her muatation so if she asks I will just tell that the doctors are working hard...
wish I could help more
 
This is such a hard one! My son is 12 and we deal with this a lot. I also do the "everyone has something to deal with" and point out that it may be a disease, it may be that a kid is homeless, he may not have a family that loves and supports him, etc. When my kiddo isn't in a depression about this isssue, I try to point out special things we've done or people we've met through his having CF that we otherwise wouldn't have done/met. We got to go on a trip to Maui when he was 6 yrs old, we have met such nice people through CF Walks and doctor's appts, hospitalizations, etc. This also doesn't help much, but my son acknowledges it. Sometimes I just say "you're right. It stinks to have to deal with this." and point out that I'll be there every step of the way to help where I can. Letting kids know it's ok to be upset, mad, sad, confused, frustrated, etc helps. If you get it all out it seems to make the rest of the time pass easier. GOOD LUCK!!
 

anien2

New member
Tell him the truth: out there in the real world nobody is normal. Actually the extrange thing is to be normal.
 
A

all4Eden

Guest
All kids can handle it differently. So, I am telling you what we did to our daughter (10). One day we were having a serious battle with her. Back them she was doing the treatment/vest 4x per day. She threw a big fit and she ask that question. It was a tough day. We told her what the Bible say about her: Psalm 139, Jeremiah 2 and everything about her. Them we told about the blind men on John 9. I don't know what happen next. One thing for sure is that was the last fit she threw ( 3 years ago). Is not easy. But, we are created to handle her and CF. She is created to handle this, nobody else can.
 

nmw0615

New member
Growing up, my parents did everything they possibly could to make me feel as normal as everyone else. In fact, I went 19 years without really knowing CF was classified as a disability. It was never, never treated or talked about as such. I know I had CF, but there was never a big deal made about any of the treatments or medications. Once I got the VEST machine, even my younger sister would get in on the act and shake herself every once in a while. Some things were even viewed as extraordinary, like the fact I was able to swallow 13 pills by the time I was 11, when there were some people in my class who couldn't swallow even one. They didn't treat my differences as "differences," per say, but more as just me.

Of course I had my down days, and they would let me have them. But between my parents and my best friend, they didn't let me stay down for too long. I'd have a heart to heart with my parents about how much life sucked, and they'd agree with me, they didn't try to convince me other people had it worse. But they'd also point out how lucky I was to have a family and friends that loved and accepted me for who I was, and that they looked up to me when it came to dealing with life. And then my best friend would come over and completely take my mind off everything but what game we were going to play.

It's difficult as a kid, to be different in some way from everyone else. But how my parents handled it was perfect. They never made a big deal about the CF differences, instead focusing on anything else that made me different, like my love of reading or how easily math came to me. I always felt loved and accepted, and that was the most important part to me.
 

anien2

New member
Growing up, my parents did everything they possibly could to make me feel as normal as everyone else. In fact, I went 19 years without really knowing CF was classified as a disability. It was never, never treated or talked about as such. I know I had CF, but there was never a big deal made about any of the treatments or medications. Once I got the VEST machine, even my younger sister would get in on the act and shake herself every once in a while. Some things were even viewed as extraordinary, like the fact I was able to swallow 13 pills by the time I was 11, when there were some people in my class who couldn't swallow even one. They didn't treat my differences as "differences," per say, but more as just me.

Of course I had my down days, and they would let me have them. But between my parents and my best friend, they didn't let me stay down for too long. I'd have a heart to heart with my parents about how much life sucked, and they'd agree with me, they didn't try to convince me other people had it worse. But they'd also point out how lucky I was to have a family and friends that loved and accepted me for who I was, and that they looked up to me when it came to dealing with life. And then my best friend would come over and completely take my mind off everything but what game we were going to play.

It's difficult as a kid, to be different in some way from everyone else. But how my parents handled it was perfect. They never made a big deal about the CF differences, instead focusing on anything else that made me different, like my love of reading or how easily math came to me. I always felt loved and accepted, and that was the most important part to me.


You can say it louder, but not more clear. That is the point.
 
Be careful when telling your child it could be worse. There is a fine line between trying to show him/her their blessings and belittling their feelings. Every time I was told "well it could be worse" by my family growing up, it would make me feel like they thought I didn't have a right to be upset, like "well you have a roof over your head so what does it matter that you feel crummy all the time?" I was never told that what I was feeling was okay, normal even. By all means, have them count their blessings but remember to validate their feelings. Let them know they have a right to be angry at the situation. If they need a way to get rid of that frustration and anger you can always buy a punching bag or pillow and decorate it with CF decorations so that when hes angry about CF kicking his butt, he can let out that frustration on it (and its good exorcise). Its kind of silly but it works, I had a CF pillow that I could take my frustration out on and it helped a lot during my teen years.
 

CrisDopher

New member
Pity the "normals" - for they are BORING. They have no true appreciation of life, no distinction, nothing to make them stand out, nothing to drive them to epic achievements.
 
CrisDopher - who is "normal" ?
I don't think it would be a good idea to tell your kid with cf that his life is better cause he has cf and "normals" are boring when a kid ask this hard question.
 

CrisDopher

New member
I would never tell a kid that CF makes life better. That's not what I was implying, either. I am not normal, or even next to normal. But I can say that I have found my set of challenges to be enervating, on the whole, and believe I would not be nearly as successful if I didn't have CF always goading me to be BETTER than normal.
 

vestgirl

New member
I find it better to be a "one of a kind" type of person than a "normal" person. I would tell children that they were born to stand out and shine. I remember when I was a little girl, I had to have my enzymes broken into applesauce by my teacher whenever I would eat. At that time, I had not learned to swallow my pills yet. My friends would all ask, "why do you eat applesauce all the time?" My response was, "I'm special." I agree with the posts above, everyone handles CF in their own way.
 
M

MommaKas

Guest
My daughter is a bit different, in the fact that she did know what "normal" life was like because she was diagnosed just a couple months shy of 11 years old. That being said, because she can remember what NOT taking all these meds and doing all these breathing treatments is like, we do sometimes have trouble with her being compliant. I hate to have to nag, bribe, or threaten punishment to get her to do them, but I have done all three.... as for the being normal, she has gotten teased in school and we've always told her normal is boring, you are unique! We don't let CF define WHO she is... it is just something she has. She must like being unique, because she certainly has her own style in everything she does. Maybe your son needs another friend with CF to talk to so he has someone who can understand... just a thought. It isn't easy when we see our kids suffer... for awhile when we were having trouble with her rebelling (she would actually hide meds and say she did her treatments) we got her to talk to a counselor. And it all stemmed from pretty much the same thing... she wanted to be done with the breathing treatments and handfuls of meds and go back to her "normal" life... but unfortunately, this IS her new normal, so we have to do what we can to help them make the best of it. I found that letting my daughter do her treatments while playing on the computer makes it much easier and we get no complaints from her :) I hope this helped a little
 
S

Shelly43

Guest
I remember my son saying that alot when he was about that age, he is 13 now and still says it. Now I think mostly to soften me up for something else he knows that he wants to ask for..... I always point out that everyone has things happen in their lives, a baby born blind,another who has diebetes, his one friend has a dad who had died, another had to have eye surgery at an early age...Of course he had to search his mind for someone who didn't have anything wrong, who's life seemed enchanted to him, then I pointed out that maybe their struggle is still coming? maybe theirs will be to have a CF child later in life or cancer? Yours and mine is providing as normal and balanced life as we can for our CFer's.

Life tests each of us, each test makes us stronger...I tell my son how strong he is and how proud of him I am. Our children are already stronger then most kids their own age... My daughter is 18 and crys if she has to get a shot? my son with CF laughs at shots, he laughs at pic lines.....It's just a matter of the spin you put on it? When he was little the CF nurses always made a big fuss over how big and brave he was for not crying over shots and blood tests? Like the kids we could hear down the hall, crying....So we would go in with the idea he would be my brave little soldier? He would even wear camo for his doctors visits...a milkshake for a reward didn't hurt either, lol

Good luck and I know this tears at your heart, but you can make the differance in how he see this.. Shelly
 
Top