Yesterday... out of the blue.
Froggy: Mommy, did you have Cyxtix Fabrosas when you were little too?
FM: No honey.
FM: No honey.
Froggy: Why not?
A very long pause as I brace myself, thinking 'she'll remember this moment forever, don't blow it Mama.'
Froggy: Mommy, why not?
FM: Mommy wasn't born with it.
Froggy: Was Daddy?
FM: Nope.
Froggy: Was Daddy?
FM: Nope.
Froggy: So, why do I have Cyxtix Fabrosas?
FM: You were born with it honey. Just like you were born with blue eyes and brown hair. It's just how you were made.
Froggy: Oh, okay (happily goes back to playing).
And then I went in the kitchen, took some deep breaths, wiped my eyes and ran back into the livingroom to tickle and love our little Froggy.
I don't know how to answer these questions. I show Froggy pictures of my friend's blogs and their kiddos with CF, as well as the adult CF blogs I follow. I tell her they all do treatments and take meds, and go to the doctor. She remembers their names and knows their faces, and when we talk about CF, she says, "just like Ojaio, or Abby, or Cara?" I hope this creates a community for her. Understanding, really understanding what it is like to have CF is the one gift I can't give her. I don't know how to answer these questions, I don't know what it's like. I don't know how much we should tell kids once she starts school. I just don't know. But I'll follow her lead and knowing Froggy, she'll have all the answers.
FM: You were born with it honey. Just like you were born with blue eyes and brown hair. It's just how you were made.
Froggy: Oh, okay (happily goes back to playing).
And then I went in the kitchen, took some deep breaths, wiped my eyes and ran back into the livingroom to tickle and love our little Froggy.
I don't know how to answer these questions. I show Froggy pictures of my friend's blogs and their kiddos with CF, as well as the adult CF blogs I follow. I tell her they all do treatments and take meds, and go to the doctor. She remembers their names and knows their faces, and when we talk about CF, she says, "just like Ojaio, or Abby, or Cara?" I hope this creates a community for her. Understanding, really understanding what it is like to have CF is the one gift I can't give her. I don't know how to answer these questions, I don't know what it's like. I don't know how much we should tell kids once she starts school. I just don't know. But I'll follow her lead and knowing Froggy, she'll have all the answers.
10 comments:
Oh my. I wonder when that day will come with Ella. She's a bit younger than Froggy. I read your posts and think about how it will be with her in a few months.
Oh, for wisdom to know how to answer the questions.
I'm a mom with CF. I have 5 year old twins (no CF) and I'm starting to get the same questions. I know it's a different situation, but they are in school now and realizing that the other moms get to help in the classroom and the other moms often don't lie in bed all day from being so exhausted. I just tell them that mommy has bad lungs, mommy always has a fever, mommy is always tired etc. That's not something I'd tell a child though. I wouldn't use the word "bad" to describe CF to a child. I think you're doing a great job!
Well, this made me cry. You answered her question perfectly, Elise.
Most definitely the perfect answer.
You did it, Mama. You found the answer that was the perfect mixture of honest and gentle. From the perspective of this ignorant bystander, you're managing this fantastically, one sentence at a time.
xoxoxoxoxo
You did great! She didn't need a huge detailed response, just a simple answer.
The other day I mentioned to Max that our friend Paulee, who 39, has cf and got a big sigh and a "yeah, mommy, I know". Liza aka Ratatosk
It's amazing how these questions leave you tongue tied. I've been getting a lot of them lately also. The other day it was her cousins who are a couple years older, telling me that someone explained to them that Ojaio could die early...right in front of Ojaio, who was of course embarrassed and frightened and on the verge of crying and just looking to me for reassurance that this was untrue. Reassurance that I gave her of course. I hate this stage.
Smooches my love.
I'm glad to have found your blog. I have two girls, Mackenzie (with CF) is 12 and Peyton is 9.
Azer has also recently wanted to see pictures of other kids online with CF, specifically doing their treatments.
I think being open and honest about CF has help him think casually about it. He doesn't seem to have any problems talking to other kids about enzymes or treatments. His school nurse is very supportive as is his home room teacher.
http://www.cfvoice.com/info/kids/index.jsp
Check out that website. Froggy might be a little young to grasp all the info, but I think it helps them understand things (whenever the parent feels they are ready, that is).
Post a Comment