31 May 2012

Why someone would raise $2000 for Bennett

Meet Brittney (left).  She raised the most money a single person has ever raised for Bennett.  
She is a rock star.  She has the gift of compassion.  She is someone I hardly know.

I met Brittney for the first time last year at the Waco Great Strides Walk.  When I saw her at this year's Walk, I couldn't hold my tears back.

I didn't plan on crying.  But I also hadn't planned on what I was going to say to Brittney when I thanked her in person for raising two thousand dollars for the Cystic Fibrosis Foundation to help find Bennett a cure.

I first learned of Brittney's lofty thousand dollar goal to raise money for Cystic Fibrosis one evening as I was browsing Facebook.  Brittney and I were Facebook friends... but Brittney didn't inform me of what she was about to venture to do.

Again and again, I watched her post on Facebook asking friends, family, and clients of her photography business to support her in her effort to help Bennett.  I was amazed at her tenacity and her strength.  At this point, she hadn't even met Bennett!

In a shaded part of the park that held this year's Great Strides Walk, I gently placed my hand on Brittney's left elbow and I looked at her through her sunglasses.

I asked questions I knew would find few acceptable answers: "Why in the world did you do that?  Why did you raise $2000 to find Bennett a cure?"
I said, "I know why I do this, but why do you??"

Brittney's dark shades could not hide her tears as they dropped onto her cheek.  She answered, "How could I not??  He is your baby."

We stood there in awe of each other and laughed through our awkward tear-filled conversation in the midst of the loud music and hustle and bustle fo the Walk.  

But I still couldn't get my mind around it: Why in the world someone like her would repeatedly put herself on the line for someone else - why someone like her would make her personal goal so high - why someone like her wouldn't just turn away from the need and say, "Eh, somebody else can do that."

Our conversation was cut short due to the Walk activities but I asked Brittney if she really would, for my sake more than anyone else's, write and explain why she chose to fundraise for a little boy she had never met, a momma she didn't know, and a disease she may never experience first hand.

Her story is beautiful.  This is what Brittney wrote:

"I guess I should start with: we serve an awesome God. I don't want to sound too textbook when I say, he puts people in our lives right when we need them. God actually put your family in my heart about a year and a half ago.  Matt (my husband) and I were spending our Sunday morning visiting the church we had grown to love for over 3 years, UBC.  It had been well over a year since we had been there and had woke up that morning and decided to head that way.  That morning Josh (the pastor) played a video of a family that captured my heart, a heart that takes more than it should for granted.  In that video was a husband, wife and two sons.  Before it was over I was in tears.  At that time I was completely unaware of the Cystic Fibrosis Foundation, and remained unaware for about 6 more months. 
Then one day in May of 2011 while on Facebook, (good ol' facebook) I ran across a fellow photographer's link to a video of an adorable little boy.  That boy was Bennett.  Tears again.  What an incredible story of survival.  It's even hard to type without becoming numb... SURVIVAL.   Granted, we all are not promised tomorrow, but when I wake up each morning survival comes without work for myself and my family.   
Brittney and her family
I also have two little boys, and when they wake up in the morning there is not anything I HAVE to do keep them alive for that day.  Yes, of course they need the basic food, water, love, touch etc, but nothing medically that I am having to do to help them survive the day.  When I watched the video with little Bennett and his day to day regimen of medications, breathing treatments, feeding challenges and many more that I am sure take place, I was immediately on board.  I want this little boy to survive, and to not "just survive" but to LIVE!! 
However, this particular day that I had seen this video was just a few days before the walk, one maybe two days, I can't quite remember. So when I signed up I set my goal at $150 and had agreed to match up to $75. I woke up the morning of the walk with $330.  What a blessing. 
The morning of the Walk in 2011 I was able to meet you and talk for just a moment about how I had heard about the walk.  We didn't get to talk long as it is a very busy day for you and your family. :)  This past year I have been following your blog regarding Bennett and how things are going, and have been in contact with you a few times for various reasons. ;) It has been so nice to keep in contact and learn more about you and your beautiful family. 
Ok, so that was the "How" I met you and heard of the Cystic Fibrosis Foundation... Now for the "Why" I chose to walk again and fundraise this year: 
In all honesty, the only thing that comes to mind is, Why not?  Why would someone NOT attempt to raise money for this foundation, for Bennett?   As I spoke in the first sentence, we serve an awesome God.  I personally believe in doing that.  We are to serve those here in the flesh, on this earth that God has placed before us.  I am far from where I would like to be when it comes to serving God or, like I said, serving others.  This walk, raising money, and being a part of this foundation to me is the absolute LEAST I could do.  I feel this is God's way of giving me opportunities to serve Him through others. 
Motivation - What is more motivating that a little boy who needs this to SURVIVE?  Anyone who is a parent can tell you that becoming a parent changes you.  I have always "loved" children, but I never knew how a mother loved her child until I had my own.  I know how much you love your children, how much you love Bennett.  My motivation to start, keep going, and to go farther is to keep that love here on earth.  To keep Bennett with you for as long as God has planned.  That is motivation that should put a light in any fire!  Parent or not we are given hearts so that we can love.  Love is an action. 
This year, I got a bigger jump on the fundraising (anything more than one day would have been more than last year) so that helped tremendously.   When choosing my goal for this year I thought back to last year.  In one day my family/friends and I gave $330, so my goal of $1000 really didn't seem like enough.  I set the goal with the faith, and the hopes that it would be met quickly and then it would just be a matter of how much more can be raised for Bennett.  That is exactly what happened.  

I am not sure exactly how long it took, but it was not long at all.  All of my fundraising was done through Facebook which spread the word to friends and family about what I was doing.  Immediately my family jumped on board and then friends and before long the $1000 was met. WOW, I was overjoyed for Bennett and your family.  So with over a month left to raise money I upped my goal to $1500 and began spreading the word some more.  

Donations did fade out a bit and I also took part in Relay for Life (which is dear to me as I have lost a set of grandparents to Cancer) at the end of April so that put a stand still on the fundraising for the CFF.  Once Relay was finished I started back up with the fundraising for the CFF and within a few weeks met my second goal of $1500.  

I am just amazed at the heart of some people.   Up until the day of the race, there was not a single person who had given to my goal that knew Bennett or his family.  That day, a friend from my days at UBC, Beth, had given and was also there with her family to walk on Bennett's behalf.  She and her family were the only ones who gave that knew Bennett. 
The day of the race I was less than $100 away from $2000.  I said it twice, I'll say it again: we serve an awesome God.  God touched the hearts of many through Bennett and before I left the walk that morning I showed you the grand total: $2000.  Tears again.  

You can't quite wrap your brain around why I would do such a thing, and I can't wrap my brain around why someone wouldn't. :) In all honesty I did nothing but copy and paste and share Bennett's story with my friends and family, they are the ones to thank!! 
I give thanks to God for putting Matt and me back at UBC that morning, and for Josh for sharing their story and opening my heart to your family.  BIG thanks to Khimberly with Snaptastic Shots Photography for sharing Bennett's story.  

Above all I thank you for fighting!  For fighting for Bennett, fighting for your life to keep your son here with you.  For getting this walk together and stepping out and asking for help from strangers! 
Remember, God puts people in our lives right when we need them. :)  I love you and as much as you say I have taught you, your family, YOU have opened my heart to seek God and His opportunities.  
To you I am grateful! 

Brittney's heart and her story are continual reminders of how God can deliver blessings, even in the midst of suffering.  Brittney also demonstrates the power that even one person can have to help others.

Brittney, you are a blessing.  Thank you for fighting with us as well as for us.

27 May 2012

Bennett's Junky Cough. Ugh.

Oliver has been sick one week out of every month this year.  But each time he's come home with fever, a runny nose, a cough, Bennett has been able to stay fairly well.  Until now.  After Oliver had a 9-day cold virus that included 4 days of fever, Bennett started coming down with the same thing.  For a few days, the boys overlapped with this virus.  Brian and I caught small parts of it (sore throat, stuffiness).  It was rough.

But everybody has gotten better, except Bennett.

Bennett had his quarterly Cystic Fibrosis appointment on Friday.  His cough and junky nose were not overlooked.  His CF doctor took a throat culture, as she normally does.  But said she would be surprised if he doesn't have some sort of infection.

What I recently learned about CF (that I guess I really had not understood before now) is - this is when Cystic Fibrosis rears its ugly head - when a small virus or infection gets in the lungs making the mucus even more thick than normal.  This thickening of the mucus, in addition to Bennett's inability to get rid of that mucus, makes Bennett's lungs susceptible to nasty infections that are difficult to get rid of.

I liken Bennett's lungs to a wet sucker...

(Bennett loves suckers.  He likes to lick them four times and then give them to me.  Once, he stuck his wet sucker in my purse for me to find an hour later.)

...wet suckers don't mean to get dirty.  But they always do.  Even the smallest speck of dirt will stick to a wet sucker.

Bennett's lungs are the same way.  When he is sick with a normal cold or flu, it's like a sucker that becomes wet and sticky.  The normal healthy lungs become very susceptible to the germs that exist around us - bugs like psuedomonas, MRSA,  pneumonia, etc.

Brian's analogy works equally as well.  He describes it like this:
Having CF is a bit like not having a broom in a kitchen where sugar keeps getting spilled on the floor.  In a normal house, if sugar is spilled on the floor on a daily basis it will regularly get swept up and thrown in the trash, keeping the floor clean.  But if that same house didn't have a broom (or a broom that didn't work very well), then the sugar would stay on the floor.  Eventually ants would come to feast on all this free food.  You might try killing the ants with insecticide, but so long as that sugar stays on the floor they'll keep coming.

It's the same with CF.  The mucus in Bennett's lungs is 'sugar' - something nutritious that bacteria love to feed on.  Normally the cilia (little brooms on the cells inside the lungs) sweep this mucus away regularly.  But in CF patients the cilia are crushed by the mucus (there is no layer of water for them to beat in) and the mucus remains.  When various bacteria find their ways into his lungs, they find a pile of sugar ready for their consumption, as if the table has been set waiting for their arrival.  Trying to clear these bacteria out of his lungs is a bit like trying to stop ants in your house feeding on piles of unswept sugar - they just keep coming.
So, there isn't much we can do about keeping Bennett away from normal viruses, although we certainly try.  But it's particularly important that we give him all the tools we have to help him stay as healthy as possible as he tries to fight these infections:  more frequent breathing treatments, more frequent vest therapy, antibiotics, etc.

The hard part is that we know that, whether it be this cold or another respiratory infection down the way, eventually, Bennett's lungs will colonize with a bacteria that will be nearly impossible, if not impossible to rid.  And once a bacteria like that settles in, the irreversible lung damage begins.

We hope Bennett will kick this cold with little issue.  We hope his throat culture will come back clean.  We hope that this won't be the beginning of what could later turn out to be a hospitalization.  But Brian and I see this a bit like driving on a long trip.  We haven't arrived at this particular "exit" yet.  But we know it's coming at some point and we're already anticipating it arrive upon us faster than we had hoped.

To complicate matters, Bennett's CF Doctor thinks he may also have asthma.  We won't know until he's a bit older and we have more clinical symptoms to know one way or the other.  But his waking up coughing at night and signs he's struggling to get breath, even when he's resting, tell us he may be fighting asthma too.

Brian and I aren't necessarily worried.  But we are wanting to face this cold/virus with eyes wide open.

We know of two little CF friends who have recently cultured Psuedomonas.  And we know it's only a matter of time before our "lucky" lotto number gets pulled too.

We are just trying to live every day with a very real feeling of being blessed by good health, while also preparing for the time when good health can no longer be taken for granted.

Here's to hoping Bennett bounces back from this cold with no new infection,

25 May 2012

Precious Moments Captured by Surprise

I love pictures.  Love, love love!!  I believe pictures have the ability to capture a moment and tell a story.  

This is why I photograph as much as I can and post the pictures on the blog.  It is my effort to tell Bennett's story.  I often try to capture a wide range of moments in pictures - the wonderful moments, as well as the painful moments - all in an effort to best communicate what it's like to live with Cystic Fibrosis.  

But, the difficult thing about being the one behind the camera is it often removes me from actually participating in the story.  So, this year, at the Great Strides Walk, I decided to sit back and let others capture it on camera.  This year, I decided to be present and just enjoy the day....which I wholeheartedly did!  

But a blessing came my way a few hours later in a little surprise Facebook posting from my very sweet and ever generous friend, Khimberly Caton (professional photographer of Snaptastic Shots) when I found out she had captured on camera the very moments I was wanting to fully experience earlier that day at the Walk.  

Khimberly had come to the Great Strides Walk to walk for Jessica Rae, her husband's sister who died from Cystic Fibrosis at a young age.  But Khimberly took the time to photograph Bennett in the process.  Her eye for beauty and her graciousness to provide these to me as a gift overwhelmed me when I received them.  These are the moments I have in my heart and have always wished I had in a picture.  Thank you, Khimberly, for these beautiful photographs!

The back of Oliver's shirt.

Bennett sports his Waco Fire Department tattoo on his right arm.

Our family.

A close up.

Beginning to walk 

Our little friend Erin, who walks for Carla's Corner

Our little friend Caetlynn wearing the smallest of all the "I'm in it for Bennett" tshirts.

Pinwheels are our Great Strides theme: Blow Away Cystic Fibrosis.

Typical silly Bennett.

Bennett loves Chick-fil-a.  He loved getting to say hello to the Chick-fil-a Cow as well.

Sweet little guy.

This is my very favorite picture of the Walk.  Exhausted little Bennett, in the arms of his beloved babysitter, Margaret, who is just one of more than a hundred people who love him and donated to the Cystic Fibrosis Foundation to save his life.

20 May 2012

Bennett's Brigade 2012

This year's Walk turned out lovely!  Thank you to *everyone* who came out on Saturday.  Your coming meant the world to our family!!

I have so many pictures from the Walk I want to post and I will do that in the next few days.  But first, I want to post pictures of Bennett's Brigade.  I wish I had a picture of all of those who are a part of Bennett's Brigade.  But since so many of those in Bennett's Brigade live far away, these pictures will have to do.  These are pictures of all of those who were able to come out and join us at our Waco Great Strides Walk for Cystic Fibrosis.

The Zuniga Family sporting the green for our bean!

Our beloved babysitter Margaret with the boys.

Our faithful neighbors Judy and Drew who came from the very first moment to set up and stayed until the very last moment of tear down.  Incredibly loving people.

My brother JC who came from Mississippi - we loved getting to see him!

Oliver enjoyed the kids games and "Pirates and Princess" party.

Our little family.  Missed the rest of our family who couldn't be there but were there in spirit.

Our good friends, the Carneys - such a sweet family.  They come to our Walk every year and support us in numerous ways the other 364 days of the year!

Mike and Jamey sporting Bennett's Brigade.

 Ms. Casson, one of Oliver's Pre-K3 teachers, who came out on a Saturday with her granddaughter.  So very sweet of her!

My dear friend Carol - one of many of my friends who came out and helped set up the Walk at 8AM!

Giving BJ's a thumbs up!

I love seeing my friend Karem at the Walk each year.  She is a reminder to me that God gives good things, even in the midst of pain.  Karem did not know me when she showed up to our first Walk in 2010 to support Bennett, inspired after reading my blog.  Our friendship began at the Walk but we make special efforts to get together regularly now.  I'm so glad - I love this girl!

Karem's little girls who I adore:  Caetlynn and Katherine

Mark and Margaret

There are others who came to the Walk on Saturday whom we forgot to photograph in the hustle and bustle of the Walk.  But they were no less appreciated and are no less loved.  Thank you to everyone who decided to come out and demonstrate solidarity with us in the midst of our lifetime struggle with Cystic Fibrosis.   We love you!!

Great Strides, Year by Year

Great Strides, 2010 (Bennett, 6 months; Oliver, 2 years)

Great Strides 2011 (Bennett, 18 months (at Feeding Clinic); Oliver, 3 years)

Great Strides 2012 (Bennett, 2.5 years; Oliver, 4 years)

18 May 2012

Just one more reason I love BJ's Restaurants...

:::EDIT:  Hannah K., I think you're gonna *really* love this post!:::

A few months ago, I called BJ's Restaurants' corporate office to let them know how excited I am that they are building a BJ's Restaurant in Waco.  Brian and I learned about BJ's Restaurants over a year ago.   The closest BJ's to us has been in Temple where Bennett was in the NICU for 39 days after his birth.   We love BJ's food and atmosphere.  But Brian and I especially love BJ's because it supports the Cystic Fibrosis Foundation as one of it's beneficiaries.

So, when I heard BJ's was building one of it's restaurant in Waco, I couldn't keep myself from contacting them as soon as I saw the building going up.  I basically called and said, "Will ya'll come and be a part of our local Cystic Fibrosis Walk??"

Last November, the sweet man who answered my call, named Rob, carefully calmed me down from all my excitement and explained that, while BJ's would very much like to participate in our Walk, I would likely need to wait five or so more months before we could do anything.  He explained that the opening wasn't planned until Spring and no staff had even been hired.  

Reluctantly, I complied with his request and simply tucked his number (and the number of the person he recommended I eventually speak to) away, only to bring back out in March.  

Spring arrived in no time and I decided to call again, "Will ya'll come and be a part of our local Cystic Fibrosis Walk??"  This time, Rob's contact said, 'yes, let's find a way to do it!"

But then, we hit another road bump: the opening of the restaurant, which was going to coincide with our Walk had to be pushed back.  Maybe it didn't make sense to have BJ's participate until next year.

But I persevered.  I wanted to find a way.  BJ's corporate organization supports our national Cystic Fibrosis Foundation organization so I wanted to find a way we could locally support them, as they will one day locally support us.  I really wanted to get the word out at the Walk about BJ's because I firmly believe that if Wacoans know about our new BJ's, they will be more likely to learn about the CF Foundation and our local efforts here.

Together, the BJ's media contact and I worked to find a plan that would work.  We finalized that they would prove us needed materials and I would personally guarantee that our Walk would happily promote their new restaurant at our Walk, even though BJ's Waco isn't supposed to open until June 11.  (Next year, we both agreed, once the staff is put in place, BJ's would gladly form their own team and help us fundraise for a cure.)

So, imagine my surprise when one day a few weeks ago, after our finalizing our plan, I received a short email from sweet Rob (the man I originally spoke to and who had to calm down my excitement about a BJ's-and-Waco-Great Strides-match-made-in-heaven) stating he had seen Bennett's Youtube video and admired all that I was doing for Bennett and for other children afflicted with Cystic Fibrosis.   In support of our Walk, he explained, he was sending me a check to put towards Bennett's Brigade (and ultimately our CF Walk).  

To my delight, this is what showed up in my mailbox the next day:

I was shocked.  My mouth hit the floor.  One thousand dollars given to our team by BJ's.

And even better, the timing was impeccable.  Only a day before I received Rob's gift, I had recognized within me, the feeling of being deflated, almost questioning why I was even bother to fundraise for CF.  I was feeling down about the difficult task for asking for financial support and feeling hurt when people didn't respond.  I had, albeit inaccurately, wondered if anybody even cared.

And yet, this surprise gift arrived, from someone who didn't know me or have any particular reason to give.  It gave me an incredible amount of hope.

Now, I keep Rob's note snuggled between a thumb tack and the bulletin board in the "breeze way" by my back door - a reminder for when I'm feeling down that people really do care.

As though I really needed one more reason to love BJ's Restaurant... :)

17 May 2012

Bennett's little buddy, who wants to save his life.

A few months ago, I approached Oliver's school to see if they wanted to participate in the Cystic Fibrosis Foundation's school-based fundraiser program, Cure Finders.  This program teaches about Cystic Fibrosis and encourages children to bring coins to school to raise money for CF.  

I thought this would be a wonderful opportunity for the school to learn about more Bennett's condition.  In Oliver's school, there are two families who deal Cystic Fibrosis.  Oliver and the other student are both brothers/siblings of children who have Cystic Fibrosis.

Oliver's school agreed participating in this fundraiser would make alot of sense for the school community.  So, this week the school dedicated a week to focusing on the fundraiser with hopes it can raise more than one thousand dollars.  

We were hoping Oliver could be really involved with the fundraiser in his Preschool Class but he has turned out to be sick all week so we are missing all the fundraising efforts completely.  

Disappointed that we weren't getting to participate, I emailed the principal to see if he could just give me an update on how things were going.  I could have never anticipated what he would later share with me.  Here was his response:

"We went ahead this morning with [showing] the [school community] Bennett's video [without Oliver there]. Your heartwarming and very well made video was well received by children and adults alike. It seemed to quietly inspire many of our community to work to reach our fundraising goal. More importantly, though, it was very helpful in just bringing the realities of CF to the minds of our children and inspiring in them a desire to do what they can to help.

A poignant example is the attached journal entry today from little Cody B. from Kindergarten. He wrote and drew this entry in response to the prompt of writing about something he wants to doOur school’s very talented and deeply devoted Kindergarten teacher was very moved and impressed and shared it with us. I thought you’d want a copy too."

When I received this email and opened the attached picture drawn and written by a Kindergartener at Oliver's chool, I was moved to tears.  I don't even have words for this picture.  It is incredibly beautiful.  I have never before had a child express his desire to help us find a cure for Bennett.  So, for this to be the first opportunity for me to hear this from a child that I know is incredibly powerful.  It shows that children are listening and learning around their environment.

I would have never believe that Bennett's video have such an impact of any of the students.  Cody drew Bennett almost perfectly to what he saw in Bennett's video - Bennett with his mask and vest.  Cody drew himself holding three dollar bills.  The words "I'm going to help Bennett save his life" are so poignant.  I cannot even express how much I appreciate this journal entry.  It is a peek into the world of a child and makes my heart so very tender.

16 May 2012

Sharing Bennett's Story on TV

:::Melissa, I had not met Emily before our interview.  But it turns out, we happen to share our alma mater (the University of Missouri) and attended the same Journalism program there.  So, in fact, we have a few common friends, which is fun.:::

I am so thankful to Emily Iazzetti from KWTX for giving me the opportunity to share Bennett's story and to advertise Bennett's Walk on our local TV show Moms Everyday today.

I thought it was sweet how I was instructed to go into the "Green Room" while waiting for my interview.  Oh, how very important I felt!  (And then I remembered, I'm just a mom. :))

Here's the TV interview:

I *love* Emily.  She's so laid-back and easy going - and so genuine!  She's a natural at what she does and I am so honored to have had a chance to sit down and talk with her.  

Today's interview was a huge gift for me - to be able to share Bennett's story.  My hope is there may have been families in Waco who might have learned more about Cystic Fibrosis from the interview and, better yet, might want to join us in our fight against Cystic Fibrosis at our Great Strides Walk on Saturday.

I appreciated, so much, Emily reminding me several times in the interview that I'm an advocate for my son. I don't feel like I'm anything more than a mama who feels helpless and wants to help her baby.  But I appreciate being labelled such a fancy name.  Advocate or Mama Bear, I'm all Bennett has so I'll keep doing what I can to find him a cure!

Thanks, Emily, for helping me make that happen, just a little bit more, today!