thirty-seven

37... does that number have any significance to you?  Probably not, right?  In June of 2008, that number became my worst enemy.  37 years is the average life expectancy of someone with CF.  I remember reading that fact right after we received the phone call about Kaelyn being a CF carrier.  At that moment I knew nothing about Cystic Fibrosis, but there was one thing I was certain of.... knowing 37 years isn't long enough.

After Kaelyn's positive diagnosis of CF ten days later, I burst into tears because once again the number 37 was back to haunt me.  It just wasn't fair... and it STILL isn't, nor will it EVER be.  Think about it, how old are you right now?  I'll be 30 this summer and I'm certain that 37 years of life isn't long enough for me.  Sure I've had many amazing life experiences over the past 30 years, but what about all the experiences I would be denied of because my life was cut short?  Some of you reading this may be well past 37 years... imagine not experiencing all you have once you passed 37.  Some may be a year from 37, five years, ten years... imagine.

One thing I hear all too often is people complaining about getting older.  People ashamed of their age or growing another year older on their birthday.  What's so bad about turning 30, 40, 50, 80?  For many, and not just those with CF, growing older is a privilege they are denied.  Fighting to stay strong, healthy, and positive so they can live life to it's fullest and never complaining about growing another year older.

The worst part about the number 37 is that it's just an average for those with CF - I know some who live well past 37 years, but at the same time I still hear of too many who don't even come close.  And sure none of us know exactly how much time we'll be given to live our lives, there's no guarantees... that's why life should never be taken for granted... as well as growing old.  Enjoy that privilege,  always.

We need a CURE!
http://www.cff.org/Great_Strides/JulieWeber

love and support

This time of the year always has a special place in my heart... each spring is when the Great Strides walk rolls around, along with CF awareness month in May.  Even though this is only our 2nd year participating since Kaelyn's diagnosis at birth, it's really opened my eyes to a lot of wonderful things about the CF community.

If you follow along with Kaelyn's Kure on a regular basis, you probably notice the increase in posts around this time of the year...... and most of them are us reaching out again for your support - to walk with us, donate, and spread awareness.  Some may get tired of seeing the reminders, but this is the time of the year to put in my maximum effort so we can hopefully end CF one day.  This is Kaelyn's life that I'm working hard to make a difference in - not to mention the lives of all others with CF.  Every fact I write to spread awareness to those who may not know all we have learned, every time we speak at an event, every time we attend or host a fundraiser, and every year we walk as Kaelyn's Kure, I do it to make a difference....... no matter how big or small that difference may be.

To families like ours, what makes the biggest difference to us is the support we receive along the way.  Supporting Kaelyn's Kure extends in so many directions, some of which may have never crossed your mind.  I know for many, one of the first things that comes to mind when speaking in terms of support is making a donation.  In reality however, it might not always be possible.  So what else can you do to help?  When it comes to showing support there's plenty you can do, and most of these things are the most meaningful to families like ours......

• Walk with us.  It's a great way to be by our side on a day that's entirely dedicated to CF awareness.  Seeing all those faces who showed up to walk with us last year was simply amazing, especially the faces of some who I hadn't seen in quite some time.  Faces of those who I graduated high school/college with, faces of those who I've worked with, and the new faces of those who we just met after getting more involved with the CF community.  Walking is a great way to show your love and support!  
• Spread awareness.  This is one of the easiest ways to help, and to us, is the most heart-felt simply knowing how much people care.  Share our blog, our Facebook page, our CF documentary video, invite those who you know to the walk or to a fundraiser.  When we see family and friends sharing these things with others and spreading awareness with us, it really means a lot.  After all, "actions speak louder than words and to the families living with CF, it can some times be more helpful than dollars"!  :)    

Love and support mean the world to us...... And it's very touching to know just how much of that surrounds Kaelyn.

 
To walk with us, watch our CF documentary video, or make a small donation to our Great Strides team, please visit:   http://www.cff.org/Great_Strides/JulieWeber
The walk is just a little over a month away, so be sure to register online when you have a minute.  And if you walked last year, registration is simple because all your info will still be saved!

Sunday, May 20, 2012 - 10:00am at South Park, PA.  Hope to see you at the walk next month!!

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!   

thankful

I read a quote yesterday and I know it definitely touched base with me... I actually think it's one that we can all relate to at some point or another.

Through the up's and down's of life, it's easy to have those days where you wake up and nothing seems right - the "what if's" fill your mind.  What if I had a different job?  What if I didn't lose touch with certain friends or family?  What if I made a different decision?  The list could go on and on...  The truth is, there's always going to be doubts, things you wish you did differently, or situations that had alternate outcomes.  That's when it takes the power of opening your eyes in seeing what you do have.... and then appreciating it.  Remember, when you think you have it bad, there's always someone else out there who has it worse.

With Thanksgiving a week away, it gives me extra time to remember just what I'm thankful for.  For my wonderful husband and daughter, the 2 things that mean so, very much to me.  For Kaelyn's health over the years, I still feel I can't be thankful enough for that!  For family and friends who have been there through thick and thin, good and bad and are still right here by our side.  Everything else we have and enjoy in our lives is just an added bonus... which I'm very thankful for as well!

So what's missing then??  Sure I could probably come up with a few things... but when I take a look at all I do have, all the great people in my life, plus those who are gone but have touched my life, what's "missing" seems to not matter much.  Never lose sight of the wonderful blessings that surround you every day and always take time for what matters most to you in life... you should never be too busy for the things you truly care about!  :)

school days!

It's been just about 3 months now since Kaelyn started school and so far she's been loving every minute of it!  I love hearing about her day when she comes home and it makes me feel great knowing that she's in a wonderful environment and truly enjoying herself on a daily basis!

One of the best parts about Kaelyn's school are the weekly pictures her teacher sends us so we can see the things she's doing in school.  I decided to take a few minutes to create a post displaying some of Kaelyn's school fun that she's had since starting in August.  Enjoy!

when you're faced with the unexpected...

Each case of CF is different.  While some have very severe cases of the disease, others are only faced with mild symptoms.  Regardless of the severity, it doesn't alter the way each parent feels when they receive the news that their child has cystic fibrosis.  It doesn't alter the uneasiness or uncertainty that we each face when it comes to our child's future - because that's how it is with this disease; it's filled with the unknown.  When exactly will things get bad?  When will things get better when they do go bad?  When will a cure be found?

Raising a kid is a challenge in itself - then add an extraordinary hardship into the equation, like Kaelyn's CF, and you're faced with a whole additional set of challenges.  No one can ever 100% prepare you to be a parent when the day comes.  Although it seems everyone wants to saturate your mind with parenting tips and advice when you have kids.  I've been bombarded with the typical parenting remarks of, "You should do this" or "Why are you doing that".  The advice and opinions are endless!  But, what about when you receive unimaginable news about your child that no one prepared you for or offered any prior advice in handling?

Life is so random and filled with the unknown.  I've learned that every day you should expect the unexpected, whether it be good or bad.  It's full of up's and down's, twists and turns - and through it all, we come out a little bit stronger.  Sure no one prepared me for the news of Kaelyn's CF.  I'm not sure that if I was prepared or knew a little bit more about it at the time that I would've handled myself any differently or that it would've hurt any less.  There's some things in life that you just can't prepare yourself for because of their unexpected arrival.  However, how you handle what you're given is completely up to you, no matter the advice you receive or the lack there of.  Plain and simple - Not everyone has the answers you're looking for.

Part of why I've turned to blogging is to let out all that's on my mind because some days I just need to, for my sanity.  I don't speak of CF on a regular basis to friends and family because as of now, Kaelyn is extremely healthy.  Some people may even "forget" she has the disease, but for me I never forget no matter how well she is doing.  Thoughts always consume my mind about her future.  That's the other reason why I'm doing this - to read the opinions, advice and stories of others faced with similar challenges.  Some people ask me why I choose to read some of the CF blogs that are out there - I've been told they are "too sad or depressing" for me to read.  But to be honest, these are real people sharing real stories and experiences.  Though I've never met these individuals, I feel their joy in good news they share and their pain on the dark days - It provides a sense of reality and a way for me to cope with things.  Most aren't filled with an overwhelming amount of positive energy, but what they are filled with is the ugly truth.  The facts about their biggest enemy, CF and the continuous reminder that cystic fibrosis is still taking away young lives.  They share their stories simply to promote awareness.

So this is me today.  The me that's been made stronger, who's able to share advice and spread awareness - because there was a time 3 years ago that I couldn't do either.
 
LIFE...
filled with the unknown...
"You never know how strong you are until being strong is the only choice you have."

Three happy healthy years... many more to come

May 31, 2008...
Three years ago, on this day, I was blessed with the most wonderful addition to my life - Kaelyn Leigh.



At 6lbs, 7oz - 19 1/2 inches long (born 2 weeks early at exactly 38 weeks) I couldn't ask for a more special gift.  Today marks Kaelyn's 3rd Birthday, and although it feels like I simply blinked my eyes and suddenly my daughter went from peaceful, innocent newborn to inquisitive, curious 3 year old... I've never forgotten to soak up every moment of change she's gone through as she continues to grow up.  From sitting up to crawling, standing to walking, first tooth, first smile, and first word - as a parent you just don't want to miss a minute of the many milestones in your child's life.


Each year that Kaelyn's birthday comes around, Chad and I are reminded of the day we became "mom" and "dad" to someone.  Being a parent is a blessing, and while yes, there are the tough moments when you're ready to pull your hair out and not quite sure if you can take another minute of crying, whining, tantrums, and not listening to a word you've said - the rewards most certainly out number the bad days!

I'd be lying if I said that because Kaelyn has CF it doesn't make us cherish special moments in her life even more.  And while we don't dwell on the fact that she has CF, it's still a part of her life.  We've been very fortunate and blessed for Kaelyn's health.  To most, you'd never even know she has health concerns because her health has been that outstanding!  It's something we smile about and thank God for every day as we watch her laugh, play and grow up.  While today we're celebrating a Happy 3rd Birthday in our home, we also celebrate three happy, healthy years and wish for many more to come!

HAPPY 3rd BIRTHDAY KAELYN!!  WE LOVE YOU!