Need your input

[Aboveallislove]

Our son will be 3 shortly and now that he understands virtually everything we say (and do), and now that he will actually be able to remember things, I want to make sure I minimize the mommy screw-ups. I vividly can remember things from my early years that hurt, stung, made me sad, or happy, proud, etc., and while I'm old enough now to know that my parents did their best and that some people are just jerks and it is them not me, I want to seek you'al thoughts on what to say, do etc. Right now I'm looking for the very young age group, say 3 - 8ish. (I'll be back when get to the pre-teen age and older when he's older!!) So basically, what I'm wondering is:
1) What things did your parents do related to your CF that you liked? Thought helped? Made you feel better?
2) And what things did they do that you hated, that made things worse, etc.
3) And when family, friends, or strangers say things to you that were annoying, hurtful, ignorant, etc., how did you want your parents to respond? Obviously, I want to teach politeness and respect, but sometimes correction is the appropriate response. But did you want them to "step in" and say something? What???
Thank you so much for any help you can give.

 

[Aboveallislove]

Our son will be 3 shortly and now that he understands virtually everything we say (and do), and now that he will actually be able to remember things, I want to make sure I minimize the mommy screw-ups. I vividly can remember things from my early years that hurt, stung, made me sad, or happy, proud, etc., and while I'm old enough now to know that my parents did their best and that some people are just jerks and it is them not me, I want to seek you'al thoughts on what to say, do etc. Right now I'm looking for the very young age group, say 3 - 8ish. (I'll be back when get to the pre-teen age and older when he's older!!) So basically, what I'm wondering is:
1) What things did your parents do related to your CF that you liked? Thought helped? Made you feel better?
2) And what things did they do that you hated, that made things worse, etc.
3) And when family, friends, or strangers say things to you that were annoying, hurtful, ignorant, etc., how did you want your parents to respond? Obviously, I want to teach politeness and respect, but sometimes correction is the appropriate response. But did you want them to "step in" and say something? What???
Thank you so much for any help you can give.

 

[nannerwithcf]

ONE THING THAT YOU SHOULD DEFIANTLY NOT DO IS KEEP YOUR CHILD AROUND OTHER PEOPLE THE HAVE CF ALSO DO not smoke AROUND THEM. It WILL JUST MAKE THEIR LUNGS WORSE. Make sure they are getting their medicines regularly and getting plenty of exercise and eating the correct foods. Make sure they do not drink much soda.
If anyone needs anymore input on this subject or need any advise please do not be afraid to send me a message on here.
Sincerely, Nannerwithcf. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JaneCFer]

I think the biggest thing is to try to promote a sense of normalicy. In school, especially middle and high school, it is easy to feel akward and people often dont help. I hate when people baby me or single me out because I'm a cfer. My aunt always told me I couldn't do things and that I was "special", which always felt like a bad thing.
My mom is wonderful because she knows that I know my limits and she gives me fredom to make my own decisions (within reason). When people said/say things like "poor thing" or "how do you do it?", it just rolls off her shoulders. She says this is our life and our normal. It's important to feel normal at least at home.

 

[Aboveallislove]

Thanks so much...I really need more on the emotional side..we have the medical stuff down pat, but know that with life, cf or not, parents don't always say the right thing..so really look for things like Jane is saying. Any more idea? What drove you crazy? What made your heart melt with gratitude? What about when other people said rude or hurtful things...how did you want you parent to respond?

 

[imported_Momto2]

When I was a child, I found it horribly hurtful to hear comments such as "they should just let her die" and "why bother treating her" etc, etc. My parents combated this nonsense by telling me I could do anything I put my mind to, that I should push the limits, live life to the fullest. I am so grateful to them for that. Do NOT let your kiddo get his paws on Alex: the life of a child. I went into a major depression after reading that at age 10. Protect your kid, but dont overprotect, it will send the message they arent capable. JaneCFer is absolutely right, keep a sense of normalcy. My parents always responded to hurtful comments by telling the commenter just "how it was" For example, if someone said I wouldnt be able to keep up on a hike, my mom would casually mention that as an 9 year old (and a seriously stunted one at that!) I could run a seven minute mile no problem......stuff like that. : ) Its funny though, not many people knew I had CF growing up. It just wasnt talked about, there were no support groups or "fun" hospitals. As far as most people knew, I was just a regular healthy kid, who occasionally disappeared for weeks at a time......

 

[Aboveallislove]

Sara thanks so much. That is exactly the kind of things I wanted to know . . . I'm sure others have similar things. . . please please share b/c I want to be as prepared for side as with the treatments, etc.

Re the Alex book--I know. Shortly after ds's diagnosis a co-worker sent me the book as a gift. I KNOW he was trying to be kind because he is so kind and he lost a son, but that book went right in the trash. I knew what it was about and didn't need to read it.
Thanks again!

 

[patrish22]

To Nannerw/cf, you say to keep the child away from others with cf. What do you suggest for families with more than one child with cf?

 

[LittleLab4CF]

I wasn't diagnosed until my '50s. Born in 1950 I am pre Dr. Spock and post buggy switch. My hurt that remains is "hypochondriac" alonf with it's colloquial definition. But I was the medical progeny of a short lived father who most likely also had CF. If my parents feared my health, they never let it be known. Doctors were the ones who missed my big ears and as far as I know, CF never crossed their minds. The leap most often made was mimicking (my father). But to my fortune I had smart, loving parents. "If you're too sick to go tp school, you are sick enough to stay in bed" was about as judgemental as my parents got. This meant in bed, all day armed from boredom only with books, no toys. Most times I would choose school and sometimes I made it, sometimes not and sometime during the school day I would go home and willingly went to bed. Except for times i was clearly sick, they never 'made' me sick. In the vernacular of the day, they never cut me any slack. I grew up confident, balanced, and learned. I also hire and fire medical professionals with all the condideration given to me. Being skinny became a goal. For novelty, I would place a bright flashlight against my skin to show a faint return of my beating heart. I studied bones and joints with my powerful flashlight.
This translated to every boy wishing a notch on his fight record to "call me out". I neither wanted or needed to fight. Although my father never forbade me to tussle, he drove home how it takes a bigger man to walk away from a fight. I held my own, and walked away from everything short of being attacked. I hated it. I hated walking away and hated fighting even more. It did me no good to hurt somebody .

 

[nmw0615]

My parents were amazing when I was a kid. They treated me as much like a normal child as they could, and never really let CF hold me back. I was in soccer, going over to friends' houses all the time, and constantly playing around. If I wanted to miss one vest treatment because I wanted to spend the night at a friend's house, they let me miss one treatment. They made my ability to swallow multiple pills at a time seem like the coolest thing ever. They never made me feel like I was sick in any way.

I know they kept me from seeing their fear over having a CF kid away from my eyes and ears, and I'm so grateful they let me grow up just being a kid before I had to grow up quickly.

 

[scarecrow]

My advice is 3 things; 1) Exercise 2)EXERCISE 3)MORE EXERCISE. When I was diagnosed at 7 my parents bought 3 horses that were, for the most part, my responsibility. Whenever the weather permitted I was out of the house from morning until dinner time. I know that times have changed a lot but the value of physical activity, especially w/ CFers, hasn't changed any. Whenever he is able to get out and exercise please encourage him to do it. I never saw a tree that I didn't try to climb or a horse that I couldn't ride. I know my parents must have been biting their tounges and their fingernails but they almost never told me I couldn't do something.

Also, and I suppose this could be a lot different w/ some of us than others, but when I was growing up I don't think many people knew that I had CF. It was much easier to just be thought to get a lot of colds than to have to try and explain what CF is and all the other stuff that most people don't know or care about. For us CF is the biggest deal of all but other people usually don't really have any idea what CF is.

 

[imported_Momto2]

scarecrow....you are so right, and your childhood sounds like mine! I spent my life on the back of a pony roaming around for hours and hours. My parents were amazing laid back about it. Often didnt know where I was all day. Turned into a professional for a while too : ) Had to give up my amazing PRE stallion a few years ago, could no longer campaign him. That one hurt. A lot.

PS I tell most people I have asthma/colds too, so much easier.