it's been a while... but I'm back!!

It's been quite some time since I've been active on the blog!  The second half of 2012 was so busy for us that I really didn't have much time to keep up with blogging or with the Kaelyn's Kure facebook page.  But I'm ready to start up with posting more again, sharing updates, and getting ready to kick off 2013's fundraising and awareness efforts for CF!

So here's a few updates:

• Kaelyn has been doing great!  It's hard to believe this year she will be 5 already... and starts kindergarten this fall... WOW!  :)  Her health has been really good and she had her annual CF review a month ago at the end of December.  The results came back looking great: 
  
• Protein, iron, blood sugars, vitamins A & C all were great :)
  Vitamin E was elevated
  And vitamin D was once again low :( So just a few small changes to her daily vitamin intake to help adjust D & E levels! 

•  I decided that as part of my fundraising and awareness support this year, that I wanted to participate in my first half marathon :)  I am not a big runner.  I'm active, but my endurance for running is very low.  So this will be a huge challenge for me and a major accomplishment to finish the race.  I'm not running to achieve a certain finishing time though, I'm running for a cure and for Kaelyn.  I really wanted to push myself through this challenge because I know that CF is a challenging disease for those who face it every day.  Part of being able to run for CF is raising money to support ongoing research for a cure... so to be able to raise more funds to help us get closer to that is another reason I'm running.  I decided to re-join my gym again, because the winter temps here in Pittsburgh are just too unpredictable.  With temps this week in the single digits and windchills below zero, I just couldn't face my hatred for the cold and run outside... but I knew I needed to get started with my running if I want to have a chance at meeting me goal of completing 13 miles (and I only have 3 months left to get at it).  Yesterday was my first day back in the gym and I'm following a half marathon schedule given to me by a friend.  Yesterday's distance to accomplish was 3 miles, and I completed it, but it was HARD!  Thinking about adding 10 miles to that over the next 14 weeks is intimidating, but I want to think positive that this can be done... and I have the most amazing motivation to help keep me focused, Kaelyn.  I will be posting updates of my progress as I go along for anyone who wants to follow me on this journey.

•  Kaelyn's Kure is registered again for Great Strides 2013 :)  We currently have 9 people already registered with us to walk on our team.  The walk is scheduled for Sunday, May 19th at South Park and it's never too early to register as a walker.  As always, registration for this walk is free!  If you can't walk with us this year, but would still like to support our team, you can donate to team Kaelyn's Kure through the following link: http://www.cff.org/Great_Strides/JulieWeber  Last year we were able to raise over $15,000 as a team for CF and we're hoping to raise that much again or even more :)  We have such an amazing team and so many people who support us and helps us out each year to be as successful as we are doing what we can for the CF Foundation.  Thank you all again for the love and support - it is truly heart-warming to our family.

Team Kaelyn's Kure 2012

 

 
 

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!!

"give a little love" - our first documentary

Last month Chad and I were asked if we'd be interested in sharing our story and filming a short documentary on CF to be used for awareness.  As Kaelyn's mom, I like to take advantage of each opportunity we have to raise awareness because it's so very important to us.

So many people in our lives are now aware of what CF is, but a lot of people don't see the other side of CF - which is what it takes to care for Kaelyn and keep her healthy.  It means a lot to us to be able to share our story with others......



If you'd like to support Kaelyn's Kure and the CF Foundation, please visit http://www.cff.org/Great_Strides/JulieWeber and click on "Click to Donate".  Remember, any amount you can donate helps to make a difference in someone's life.

Thank you to all the wonderful people in our lives who continue to support CF and our dream of finding a cure.  xoxoxo
Special thanks to Dan Burda for making this documentary - you're amazing!

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!  :)