The CF "Talk"

So you think talking about sex to a teenager is hard? Telling your child there is something that can not be taken away and will have an effect on everything they do is difficult to figure out. The questions go through your head about, "What age is appropriate?"  "What should I say?"  "How should I say it?" "What tone should I take?" All of these questions are valid and each Cystic is different and so is your relationship with your child. In the end however that conversation has to be had.

When it comes to the age to introduce your child to this disease, is solely up to you as parents. There needs to be a level of understanding that is exchanged between you and them. Understanding a lifelong disease is going to be hard for them at first. Keep in mind that they know who the doctor is, they have seen the hospital and the comprehend the situation. They are smarter than you give them credit for and are a lot more understanding than you may think at first.

I honestly do not remember having the "talk" with my parents I just do not remember not ever knowing what was going on. I knew I had CF and I knew it was able to kill me. I think the difference or what made it a little easier is that I had grown up with two role models who were also living with CF at the time. I knew that we were "the same" and when my cousin Rose died, I understood and never really asked to many questions. I do know this is normally not the case for anyone else and honestly, it is really odd to have cousins with CF. Siblings are not so uncommon, however, to find 4 carriers who had NO idea they were carriers just so happen to meet and get together for babies is a little rare. So here are some tips for those who weren't as lucky as I was to share my disease with my amazing family!

★Ease into the conversation with a few start up questions just to know where they stand. Simply ask them if they know why they see the doctor so often? See what they say you may be surprised with the answer because they may already know.

★Start talking about the fun things they enjoy doing like playing with toys, sports, being active in any way. Let them know that they have special lungs and need to stay as active as possible. The more they are active growing up the healthier they will be.

★Explain to them that they need to strive for high PFT levels and that you want to start playing games with them to keep their lungs in the best condition. Have a balloon blow up contest with them and their siblings or even with them and you. See who can take on the biggest breathe by taking a deep breathe in and holding it for a few seconds. With children the easiest way of teaching and explain things to them is by making it fun. For more ideas for making CF fun, please read - Tips, Tricks, and Helpful Hints.

★Let them know you are always there when they feel like coughing or if walking around starts to become a problem. Tell them that no matter what you will be there helping them. Being parents this is the hardest part of a CF parent. Having to fight back the tears and the fear to be strong for them is something they will need. If you seem worried, scared, upset, or bothered by their CF it will show and they will repeat that feeling. Kids love the "monkey see "game as we have all found out by the cuss bust that they randomly say in the middle of church.

What about the "death" question? 

★As a younger child this day and age the death or dying topic will eventually turn up. Do not try to sugar coat it, that is the worst thing you can do! Once they figure it out they will backlash at you for not telling the whole truth. Try the best you can, struggle through the explanation of death, your religious beliefs, and possibly touch base with someone they know who has passed on. Explain to them as long as you keep doing everything like the doctors say it will be okay. Always assure them it will be okay.

Once they grow older they will slowly understand everything as life goes on. There is no need to terrify your little one with the scary ideas of death unless they ask. Do not just assure yourself that because they have CF they will not live to a fulfilled life. CF can only hinder you and your CFer if you let it. Even if you are in the hospital more times than you are not always make a point of being positive, loving, and supportive of them. 

You will need to be their rock not just the parent more information about parents dealing with CF please read CF Parents

With positive vibes,
  Sandi

For more information about CF, tips, or just interesting facts, please like me on Facebook! 

Me talking per the norm!