Saturday, March 28, 2009

Tough Questions

Seamus is feeling better. His cough finally went away and his culture from last week's clinic visit was clear!

Lately, Seamus has been very inquisitive and not about simple things. He has three friends who have pregnant Mommies. He knows that means they are going to have babies and he asked me the other day when we would have a new baby. He has also been talking a lot about his grandfather, Pa, who passed away last August. Seamus knows he's in Heaven and that he is watching us from up there but he asked recently "But what is Heaven?"

Normally, I would answer these questions with a very simple explanation, but that no longer seems to satisify him. It has started me thinking about how I'm going to handle the really tough questions about his health. He knows he has CF and needs to do his treatments and medicine to stay healthy and for now that's fine. But he's going to start to read soon and I don't want him to read something scary somewhere and think we were lying to him his whole life. I know there will be a cure in Seamus' lifetime but there is a lot of misinformation out there and I would hate for him to stumble across something that would frighten him.

For all the adults with CF out there, how did you find out about the scary facts of CF? Did you parents tell you or did you find out on your own? If the latter, how did it make you feel?

For any CF parents, have any of you had to deal with this yet?

4 comments:

Natalia Ritchie said...

That's such a good question, when did I find out? I don't think it was all at once, it was a slow progression of information.
At first I just knew that I had to do my treatments. It was all about the treatments, and eating a lot. I hated both but I did what I had to.
I do wish my mom and dad told me more. It was so old school then, especially since we came here from Poland and it was quite different over there. We became really open about it all as a family when I was in high school, but I do wish it was earlier.
I feel like I always knew the realities of CF. I also remember being a little girl (may be 12) and my mom and I talking about babies and me saying that I was going to have a friend one day that would carry my baby for me. Since I don't think it would be good for my health!! Which I find SO funny, since surrogacy was not really talked about then. But I was convinced!! I also always knew that I would get new lungs one day. It was my reality, and I was very okay with this information. I used to tell people this, and they thought I was a strange little girl =)

I think, truthfully, you have to be as honest as his age group will allow. He needs to deal with it all at his own level throughout his life. There will be so many obstacles. Everything that he will do will play a part in his CF and his CF will have a part in everything he does. Therefore he needs to be equipped so that he can make proper choices and so he can cope.
With your love and quidance he will be fine, just be as honest as you can with the little guy.

Alicia said...

Those are tough questions. Seamus is such a neat child, and you are such a good mommy for wanting to teach him without scaring him.

Natalia Ritchie said...

Julie,

Thank you for posting on my blog.
I agree with you, Seamus is young, and so many things will change in his life time. A big part of Cf treatment is transplant, and I personally think that organs customs made for us (that will not reject) will be here sooner than a cure for CF itself. So he has to be ready for all that's ahead, but he has to know that all that's ahead is also a life that he will make for himself. Not just CF.
I would never change the life that I have. My husband is such a great man, and this has made him greater. My mom and dad and brother are true inspirations and I love them so much. i have travelled, finished University, had art shows, had relationships, and now I am about to have a baby. One day, may be soon, I will get new lungs and learn how to do the things I could not do all my life. My husband and I talk about it all the time and know that the day will come that we will smile at each other, and at that moment I will be healthy. Even if I may not live to 90, may be not to 60 even, I have the best life.
This is what your little boy has to know. It may be hard sometimes, but it's all worth it.
He will change the world one day in his own way. If he knows that, if he believes in his life as any other life on this planet, he will be able to handle what CF brings his way.
I of course hope and pray that your little boy will have the miracle of modern medicine to fix him when it's time.
xoxo

RunSickboyRun.com said...

I had doctors that were very open and honest with me. My mom just let me know how important it was to take care of myself and would push me to keep living a very active life. She never made me feel any different than my brothers or anybody else.

I'm still learning about CF to this day. There are so many facets of the disease that continue to pop up as I get older. I know one thing: I will go down swinging and don't plan on losing this fight. No if, ands, or buts. I have no other choice.

I'll leave you with a quote that changed the way my mom viewed CF that was said to her by a doctor. He said, "Your son will be physically handicapped, don't make him mentally handicapped as well."

So true.

Ronnie