questions from kaelyn

Last night as I was putting Kaelyn to bed, she hit me with some pretty unexpected questions.  As soon as I put her in bed she said to me, "Mommy I'm not coughing anymore, my cough is all gone".  We all know at this point that coughing is common for those with CF, however for Kaelyn, she rarely has a cough.  Times when she would get sick throughout the winter, a cough would accommodate a cold but on a day to day basis it's rare to hear her coughing.  I thought her comment about her cough was pretty random being that she hasn't had a cough in quite some time and has been very healthy.  I agreed with her that she hadn't been coughing in a while, and after that statement the conversation went something like this, and yes this is a 3 year old I have to answer to:

Kaelyn - "If my cough is gone then I don't have to do my shaky vest anymore!"  (in an excited tone)

Me - "No, you still have to do your shaky vest every day.  It helps keep you healthy and keeps your cough away."

Kaelyn - "Why?"

At this point my heart sank... I'm about to explain why and tell my 3 year old she has cystic fibrosis.  Until this point, we'd just go about our day, do our treatments & meds, and Kaelyn has never questioned it.  I don't believe in making up stories about why she does what she does or hiding from her that she has CF, it's a part of her life.  I figured I'd tell her about cystic fibrosis and explain what it was when the day finally came that she asked... which happened to be last night.  I figured one of two things would happen when I told her:  1.) She would give me the puzzled, curious look of a 3 year old for a few seconds, then start talking about something else... OR 2.) She would ask what CF was.  Knowing Kaelyn, my gut feeling was she would go with option #2.

Me - "Well you have to do your shaky vest every day forever because we found out you had something called cystic fibrosis when you were born."

Kaelyn - "But I'm not a baby anymore!"  (since I said to her, "when you were born")

Me - "Well I know you aren't a baby anymore, but not just babies have cystic fibrosis.  Older kids and big people have it too."

Kaelyn - "But none of my kids at school have cystic fibrosis."  

Quick time out from this conversation - hearing Kaelyn say "cystic fibrosis" was the best part of this whole convo.  She did pretty good at pronouncing it, but it reminded me of why some kids call cystic fibrosis, 65 Roses - much easier to say! 

My conversation with Kaelyn felt like I was talking to someone a few years older.  Each response she gave to each of my explanations was some what unexpected...

Me - "Well no, none of your friends at school have cystic fibrosis.  Not many people have it."

Kaelyn - "Well where did my cystic fibrosis come from Mommy?  Who gave it to me?"

Sinking heart again....

Me:  "It came from mommy and daddy."

Kaelyn:  "Why did you guys give it to me?"

At this point, I wasn't exactly sure how to explain it.  I never thought our conversation would have become so deep for someone who is still so young.  I never thought I would be trying to rack my brain for the best, and most simplistic way to explain it.  Afterall, she wanted to know.  Would she remember what I explained to her?  Of course she would, this child remembers EVERYTHING... often she remembers things I don't even remember...  So I wanted to to make sure my explanation was correct (in the simplest form) because I knew what I told her last night, would be repeated at some point down the road when she talked about CF again.  So as best as I could, I gave her this simple explanation: 

Me - "Well just like mommy and daddy gave you the color of your hair, your eye color, how tall you'll grow to be, and lots of other things... you got cystic fibrosis from us too." 

Kaelyn - "What does it (CF) do?"

Me - "It makes you cough and some times makes you sick."

Kaelyn - "Then I do my shaky vest, right mommy?"

Me - "Yep, that's right!"  And guess what?"

Kaelyn - "What?"

Me - "Even though you have cystic fibrosis, you'll always have mommy and daddy here to take good care of you and help you to stay healthy."

After that, we smiled at each other, and I gave my little lovebug a hug and kiss.  My eyes filled with tears, but I held them back as best I could and quickly wiped them away as we hugged.  I know some people won't agree with how I explained everything to my daughter, but I know her better than any outsider.  This was one of the very first, mature conversations I've had with Kaelyn as she inches towards turning 4 in May... and I know it most certainly won't be the last. 

As a parent, there are no perfect answers, solutions, or advice to follow.  But there are millions of ways to be a good parent to your child - and that mostly stems from taking the time to get to know your child and what's best for him/her.  In that moment last night, the answers I gave to Kaelyn's questions are what felt best in my heart.  I'm not embarrassed by my child having a genetic disease and I never want her to feel that way either.  It's not something that should be kept a secret from her, nor should she keep it a secret from anyone else.  It's a part of who she is and who she will become.  I strongly feel that cystic fibrosis will never control Kaelyn's life unless she lets it.  She should run, play, have fun and enjoy life every day regardless - and don't want anyone to feel sorry for her.  The more she understands about CF and how to stay healthy, the better her overall life will be as she grows up.  As a parent of a child with CF, it's my job to teach her since kids learn by example.  It's my job to let her live her life as normally as possible and not hold her back just because she has CF.  And mostly importantly it's my job to smile every day and remain positive & strong, making it clear that I will be there every step of the way!