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Archive for March 2014

Bennett's Brigade Teams Around the US 2014

Monday, March 31, 2014

How unbelievable is this!?!  

Wait for it...

Wait for it...


Bennett's Brigade is set up to be represented in SIX (let's count 'em SIX!!) different US cities this year!!!

What an amazing group of friends and family we have!!  And each Bennett's Brigade team in each corresponding city has set a goal to raise money for a cure for Bennett!  We are immensely touched!!

Although we may have more Bennett's Brigade team walk sites added later, here is what we have so far:

SATURDAY, APRIL 5, 2014 :: NORTH CAROLINA - DURHAM
Durham Great Strides Walk, Duke University, East Campus, 9:00AM
Click here to join!

SATURDAY, APRIL 26, 2014 :: MISSOURI - COLUMBIA
Columbia Great Strides Walk, Cosmo Park, 9:00AM

SATURDAY, MAY 3, 2014 :: TEXAS - WACO
Waco Great Strides Walk, Indian Spring Park, 8:00AM
Click here to join!


SATURDAY, MAY 3, 2014 :: NORTH CAROLINA - WILMINGTON
Wilmington Great Strides Walk, Mayfaire Town Center, 9:00AM

SATURDAY, MAY 10, 2014 :: MISSOURI - KANSAS CITY
Greater Kansas City Great Strides Walk, Theis Park, 9:00AM
SATURDAY, MAY 17, 2014 :: MISSOURI - ST. LOUIS
St. Louis Great Strides Walk, Carondelet Park - Boathouse Pavilion, 9:00am
Click here to join!

If you live near one of our Bennett's Brigade teams, join up and walk!  It will be such a gift to us to know you came out to support our little man!  And if you can come (or even if you can't), we'd love for you to help us find a cure by donating to the Cystic Fibrosis Foundation on behalf of Bennett. This is what the walk is all about - finding him a cure!

Thank you to so many of our friends who are making this possible but especially to our team leaders: Cynthia Hazell, Melissa Hensley, Emily and Matt Mabrey, Amy Cody and Leah Kazantzis!!

Avonlea's 6 Month Photo Shoot

Saturday, March 29, 2014


I am a little late on posting these but they are too special not to share.  Thanks to Khimberly Caton from Snaptastic Shots for continuing to capture my kids as they grow.  These are from Avonlea's 6 month photo shoot.


Can I tell you that when I showed up for our shoot, I had not expected to be in any of the pictures.  In fact, I was running late for our photo shoot because I had overslept my nap (the saliva-down-your-cheek kind of nap).  So, I literally woke up, grabbed Avonlea and her stuff and ran out the door.  The fact that I look even decent in these pictures is pure evidence this woman does magic behind the camera!!




I am really loving having a girl.  My boys are very special to me.  But it is a lot of fun to have a little girl to dress up in hairbows and tights.

Avonlea is extremely laid-back.  She is a typical third child, easily contented and happy to watch the world around her.  


Avonlea hardly ever cries and doesn't mind having her schedule interrupted.  She loves to be around her brothers, who she finds quite entertaining.


I have had the most fun with Avonlea.  When Oliver was a new baby, so much of my energy was spent trying to figure out how to be a parent.  When Bennett was a baby, so much energy was spent keeping him healthy.


Avonlea has given Brian and me a chance to really enjoy this infant stage, both because we've figured it out a little more and because her health is not a concern.  Brian and I both feel extremely blessed to have been given another little one to love on.  She has brought our family so much joy.













Because of Cara

Tuesday, March 18, 2014

"The hope we have clinged to in the midst of our greatest heartbreak is that God is redeeming creation.  One such miracle is a little boy named Bennett." 
-Cynthia Hazell, mother of Cara

Cara Grace Hazell would be 6 years old today.  I was there, 6 years ago, to say hello and goodbye to her in that Raleigh, NC, hospital room where shortly afterwards her mother and father had to physically let go of their firstborn daughter.  

For the first time in our lives, Brian and I watched close friends grieve a parent's worst nightmare.

Never did I imagine that 2 years later, Brian and I would experience a similar grief when our son Bennett was diagnosed with Cystic Fibrosis.

Brian and I are deeply appreciative for friends who have once again asked that our son's life be saved in honor of their daughter's life who could not.


Here is the email Cara's mother, Cynthia, recently sent out to her friends and family in honor of Cara's birth and also the day she entered heaven: 

"When I realized Cara was not moving [in the womb], I was talking to one of my best friends, Breck. She is one of the kindest people I know and she coaxed me through those first moments of fear and for months after as I processed our loss. 

A year and a half later, we were both scheduled to deliver our second child on the same day, but three days before Breck felt something was wrong. Her baby had stopped moving. 

Bennett was delivered early, thankfully living, but dealing with major trauma from a ruptured bowel due to complications of Cystic Fibrosis. He and his family began a long fight for his life. (Some stories...http://bennettgamel.blogspot.com/p/bennetts-story.html, http://bennettgamel.blogspot.com/2009/11/day-36-pictures.html)

The fight for Bennett's health is ongoing. There is no cure to Cystic Fibrosis and it is all managed through medication. Even more disappointing, there is no federal funding for Cystic Fibrosis research. All research is funded by private donations. The treatment for CF has come SO far in the past few years. However, there are 30,000 people in the US with Cystic Fibrosis and there is still a long way to go.

We are participating as a family in the Great Strides Cystic Fibrosis walk at Duke on April 5th. There are several ways we are raising awareness and support:

1. We would love to have people join our team. Tim, Molly, Evan and I will be walking at Duke East Campus. Registration is at 9 and the 3K walk is at 10. (This is the link for the team page: http://fightcf.cff.org/site/TR/GreatStrides/11_Carolinas_Raleigh?pg=team&fr_id=1986&team_id=22095)

2. We have a team goal of $1,000 and are accepting donations in Cara's memory and Bennett's honor. Donations are tax deductible.http://fightcf.cff.org/site/TR/GreatStrides/11_Carolinas_Raleigh?px=1280215&pg=personal&fr_id=1986

3. Please pray for the 30,000 children stillborn each year and the 30,000 individuals in the US dealing with complications of Cystic Fibrosis.

Thank you all for your love and support! We are grateful to have you in our lives.
Love,
Cynthia"


Cara's Cemetery


Molly and Evan, Cara's younger siblings, honor the sister they never met by hearing stories about her and visiting her gravesite.

Cynthia wrote on her Facebook today: "We took the kids to Cara's grave this morning and talked about Cara's 'heaven' day.  Evan asked 'why' a million times and Molly said, 'I bet she misses us.'"

I know we certainly miss her.

Bennett's "Scarf"

Wednesday, March 5, 2014

The other day, Bennett, who is 4, said, "I don't like my scarf."

"Scarf" is his word for the scar he was received when he underwent life-saving surgery at birth to repair a ruptured colon in utero and later when his ileostomy was removed.  Brian and I haven't bothered to tell him the word is "scar" not "scarf."

Bennett shows his "scarf" - his scar goes from the top of his abdomen all the way down to right about his belly button.
"It's not fair that I have a scarf," he said.

I paused for a second to capture the moment in my heart.

I had been anticipating this very moment since I first laid eyes on my 4-month old baby boy's scar when he returned to me from surgery.  It was fresh then.  But I knew, as soon as I saw it, it was permanent - a permanent reminder of where he had come from and a permanent reminder of the battle he is in.


 

 

I stopped washing Avonlea's bottles at the sink, bent down and said, "Bennett, you are right, it isn't fair you have a scar. But did you know that's a very very special scar??"

Bennett's little blue eyes grew wide, as though I was telling him the world's greatest secret.

"Your scar is a BRAVE scar.  It reminds you that you are very very brave, because of how strong you were when you were a baby and how strong you are right now when you fight against Cystic Fibrosis."

Bennett seemed delighted to hear what I had to say about his scar.

But someone else was not...

Oliver, now sulking behind the kitchen counter stools nearby, said in a pitiful voice, "That's not fair he has a brave scar. I want one!"

I hadn't been ready to have made my explanation of Bennett's scar so wonderful that his big brother would become jealous and want one of his own!  But, apparently, my reply had been good enough that Oliver was now upset the he didn't have a 2-inch skin discoloration due to abdominal surgery.

Immediately, I thought about how Oliver bares a scar too.  His is emotional.  As a brother to someone with a life-threatening illness, he suffers quietly with his own emotional scars of a battle we are all in.

I said to Oliver, "Oliver, you have a brave scar, too. But yours is secret.  No can see yours."

Oliver's face lit up, "ahh! I like that!  So, mine is an invisible one that no one knows about?!"

I smiled and said, "yes, that's right.  yours is one that you choose to reveal when you are ready."

Both boys were satisfied with my answers and quickly returned back to their lands of fantasy Lego rocket ships and Imaginext superhero figures.  But I know this conversation will be one that we will all come back to many more times.

As little boys, they want to know they are brave and strong.  Brian and I feel very privileged to be able to remind them of their identities when they wonder who they are, who they are supposed to be and why they have been given the strengths and challenges in life they have been given.

But, I know...
One day, Bennett's scar as a badge of honor won't be enough for him.

He will ask deeper questions as to why he wears a scar on his chest, deeper than "why did I have to have surgery." Instead he'll ask, "why am I sick."

It is at that point that I will have to explain that scars are not just a sign of bravery, they are also a very concrete reminder that our bodies, and the world we live in, is broken.  This isn't the way it's suppose to be.  

I have my own scars, most are like Oliver's, they are invisible.  But nonetheless, whether physical or emotional, scars are a sign of our mortality.

Scars, much like the ashes placed across our foreheads today during our church's Ash Wednesday Service, remind us that "you are dust, and to dust you shall return. (Genesis 3:19)."

Bennett's right.  His soft little white baby skin should not be covered by marks of a surgical knife once there.  His scar tells a story of loss, of bravery and of decay.

But, as we look forward to Easter, I am thankful that I will be able to tell him a story of loss, bravery and decay that ends with hope, triumph and the resurrection.

Bennett, no matter what, your "scarf" is not the end of the story.  It is only the beginning.