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Archive for April 2013

Bennett's Brigade has gone National!

Sunday, April 28, 2013

We are SO excited to announce that Bennett's Brigade has officially been designated as a National Team with the Cystic Fibrosis Foundation!!!

A National Family Team is a fundraising team that participates in Great Strides walks in a minimum of three distinct markets around the United States and sets a minimum fundraising goal of $10,000!

Bennett's Brigade is the name of our team, which we created in 2010 shortly after Bennett was born, with the goal to raise money for a cure for Bennett and all those with Cystic Fibrosis.  This year will be our 4th year attending the Great Strides for Cystic Fibrosis Walk in Waco.

However, as our little boy has grown, so has the number of people who know and love him.  So, too, have the hearts of those around us.

This year, four special friends were particularly thoughtful this Spring as they have decided to create Bennett Brigade Team's in their own areas.  My friend Leah, who lives in Wilmington, NC, decided to gather up some of her friends to create a Bennett's Brigade Team there.  Shortly after, I learned that three of my sweet friends and Kappa Delta Sorority sisters from Missouri, Melissa, Amy and Katie, decided to gather many of our KD sisters together to create a Bennett's Brigade Team in St. Louis.

I don't have the words to really express what this means to me - for people to dedicate their time and effort to not only attend the Great Strides for Cystic Fibrosis Walk in their area but also to raise money for our son.

These are people who do not necessarily have a connection to Cystic Fibrosis outside of Bennett - people who CHOOSE to do this out of love.

When I think of these two other Bennett's Brigade Teams organizing and developing their teams and their friends on behalf of Bennett and our family, I feel incredibly overwhelmed with support.  What an amazing way to let us know we are not alone in our efforts!

My hope is the number of our Bennett's Brigade walk sites will grow even bigger next year!!  All it takes is someone to spearhead the building of a team and a group of friends who are supportive.  As difficult as Cystic Fibrosis is, this is one of the biggest blessings it provides - a reminder how how much people care.

So, if you're in Wilmington, NC, Waco, Texas or St. Louis, MO, there is a Bennett's Brigade team attending a Walk near you!!

Click the following links to register:

Great Strides Walk in St. Louis, Missouri (May 4): http://www.cff.org/Chapters/carolinas/greatstrides/
Great Strides Walk in Waco, Texas (May 11): http://www.cff.org/Chapters/netx/GREATSTRIDES/
Great Strides Walk in Wilmington, North Carolina (May 18) : http://www.cff.org/chapters/gateway/greatstrides/

Thank you to ALL of Bennett's sweet supporters around the United States!  We could not do this without you!!

Our Cover Boy

Friday, April 26, 2013

The boys were delighted when they found in the mail the latest copy of a new magazine in our area called, "Hewitt Life" and saw Bennett on the cover. :)

A few months ago, while thumbing through this new magazine, I noticed there was a advertisement asking for story ideas.  Being a journalist at heart, I thought it might be a good opportunity to tell Bennett's story - to share awareness of Bennett's fight and the need to find a cure.  I was delighted when the editor of the magazine contacted me back and offered to not only do a story on Bennett but put him on the cover.  What an honor!


It's hard to see but on the top right corner of the first page, there is a picture of Bennett from his most recent hospitalization last November.


It has been really wonderful to be able to tell others in our community about Cystic Fibrosis, particularly to people who have no idea about this disease.  I don't much about the impact it will have (since the publication of the magazine is only around 5,000).  But, I have heard several people in our community mention they saw Bennett on the cover.  A sweet neighbor from down the street even stopped by our house yesterday to give us her copy of the magazine.  My hope is the article is informative and helpful to those we see in our community but have no idea the silent fight we are in.





Although my greatest desire is to see this article help us raise more money for a cure for Cystic Fibrosis, I also really appreciate the amazing documentation of our journey that the magazine serves for Bennett when he gets older...and not just for Bennett but for Oliver as well.  Although I had hoped I could tell Bennett's story to others in a forum in which I am most comfortable (journalism story-telling), I feel incredibly blessed to have been given such a fabulous opportunity to share our family's journey.  As I have said before, all I ultimately want Bennett to grow up knowing is that while we inadvertently gave him Cystic Fibrosis through our genetics, we have and will spend the rest of our lives doing everything we can to see him healed from it.

Heros of Hope Program

Sunday, April 21, 2013

Here are two useful resources that I wanted to pass on to other CF families...

Some of you may not yet know about a great program honoring those with Cystic Fibrosis that I thought other families in our community might appreciate knowing about.  There is a program called "Heros of Hope" that has a website in which each month it spotlights one person courageous journey with Cystic Fibrosis.

I really like reading each month's "Heros of Hope" because it reminds me the strength and tenacity typically possessed by those with Cystic Fibrosis.  The great thing is anyone with Cystic Fibrosis can be nominated and the form is super easy:  http://www.heroesofhope.com/nominate.

I'd love to see more of our fighters on the website so if you know someone with Cystic Fibrosis that should be spotlighted online and whose story should be told, make sure to nominate them!

You can also find "Heros of Hope" on the CF Living Facebook page (although, sometimes the heros there are not updated quite as often.)


Speaking of CF Living, something else I recently came upon that I find pretty valuable are the CF Living Videos.  There is nothing better than to see others who are going through what we are going through.  So, I really love the videos CF Living offers videos on topics such as adapting to 'CF Normal,' accepting your life with CF and videos of others who have CF.

I hope these resources are helpful for other families in our CF community.  If you know of other really great CF resources available online, please leave a comment in the box below!  I'm always looking for ways to better connect to our community and to honor the fighters among us!

Bennett's Brigade Tshirts

Saturday, April 20, 2013

Every two years, we order new Bennett's Brigade tshirts.  Since this is not a year when we would order new shirts, we are going to put in a reorder for last year's tshirt design.

If you have last year's shirt, you may notice one small change we made this year's design.  We took the color black off the front design to help lower the cost per shirt.  

Anyway, if anybody is interested in purchasing a tshirt, let me know!  Cost is $10 per shirt.  Sizes come in children 2T-5/6, youth XS-L and adult S-XXL.



Our first retail/restaurant fundraiser for Bennett's Brigade!

For the first time ever, we are having an actual fundraiser at a retail location to raise money for Cystic Fibrosis on behalf of Bennett!  

When we first learned of Bennett's diagnosis, we had just moved to Waco and didn't have a large enough community to do much of an actual fundraiser.  But as our relationships in Texas have deepened and our friendships have grown over time, after 3 years of battling Cystic Fibrosis, we are now at a place where we think we can hold a successful fundraiser and get the local support we need!

All day tomorrow 3Spoons Frozen Yogurt in Waco (2440 West Loop 340, Ste. A9) and in Hewitt (1201 Hewitt Drive, Ste. 211B) will give 25% of the sales we bring in to the Cystic Fibrosis Foundation.  (3Spoons is Bennett's VERY favorite place to get frozen yogurt/ice cream.)

In addition, our sweet friend MaryAnne Summers, who is an amazing professional face painter, will be at 3Spoons - Central Texas Marketplace to paint children's faces while graciously donating her tips to Bennett's Brigade as well.  

We are so very excited!  See you tomorrow!!
**And make sure you tell the cashier tomorrow that your purchase is on behalf of Bennett!!**




Bennett's Best Friend

Sunday, April 14, 2013

This is Bennett's best friend, Parker.  Parker is the son of our friends Dana and David (whom you might know as the family we know and love in their own current fight against brain cancer).  Bennett and Parker, both who are three years old and in the same preschool class, are best buddies.  
The boys are absolutely adorable with each other.  They are surprisingly very good at sharing and genuinely enjoy playing with each other.  They love playing with cars, running around in circles and playing with blocks.  It's pretty fun to see them build a friendship outside of the one Dana and I have.


Anyway, knowing that Bennett and Parker are best friends made the following story even funnier when I heard what happened...


Last mid-morning Monday, I received a phone call from Bennett's teacher.  This doesn't usually happen so I figured it was something important.

She said in her calmest but concerned voice, "Breck, are you busy?  Bennett's g-tube came out.  He's doing fine.  But I need you to guide me on how to put it back in."

This was the first time ever Bennett's g-tube had come out at school.  And probably the first time in a more than a year it had come out at all.

Bennett's teacher, whom we love, was incredibly calm but I could tell underneath she was feeling a little stressed as she knew this was important.  Bennett and two other teachers were apparently in the room with her when she called me.

Bennett's teacher and I had gone over what-to-do-if-the-gtube-falls-out procedures as well as some things she needs to be acutely aware of (such as the time limit of putting the g-tube back in and the use of Vaseline to make placing it back in the hole to his stomach easier).  But it had been a while since we had talked about this so we were both a bit rusty.

Nonetheless, I walked her through the process as gently as I could.

I said, "ok, lie him down."
I overheard her direct Bennett to lie down.
"Ok," she said, "he's lying down."
I said, "do you have the g-tube and the syringe?"
She affirmed she did.
I said, "just put the syringe on the side of the g-tube and suck out the water."
His teacher did as I suggested.
"Ok," she replied.
"Now, place the g-tube back in his tummy," I responded.

I listened intently through the phone to hear signs of Bennett crying or moaning in pain.  I imagined how scared he might have been feeling with all these teachers fussing over him trying to replace his g-tube.  I felt a bit like a 911 Operator waiting for indication the people on the other end were ready for my next set of instructions.

"Ok, it's done!  It's in there!" I heard Bennett's teacher say.
We all cheered!

I was so proud of Bennett.  He did not cry at all and had been so very patient.  I was equally proud of his teacher who so valiantly went from being a teacher to being a nurse in those few moments on the school floor.  And I was super happy to know we weren't going to need to make a trip to the ER - all of us could carry on our day as normal!

Several hours later, when I picked up Oliver and Bennett from preschool, I congratulated Bennett's teacher on her work well done and asked her what exactly happened.  She explained that Bennett had just happened to have put his shirt up a few times exposing his belly (something he typically doesn't do) which revealed to her and the teacher assistant that Bennett no longer had his g-tube in his belly.

I turned to Bennett, who was now buckled in his carseat in the car ready to go home from school, "Bennett, what happened to your g-tube?  Did someone pull it out?"  I asked the question, not really believing anyone had actually pulled it out.

But without hesitation, Bennett smiled and said, "Parker did!  Parker pulled out my g-tube!"

The teacher confirmed this was true.

I just had to laugh.  I knew Parker had done it completely innocently as he is Bennett's best friend and is a child with such a tender heart.

I suppose the sweet child had been curious about his friend's g-tube and decided he wanted to see if it would come out.  I can imagine Parker, having not really seen a g-tube much before, didn't believe it was actually connected to the inside of Bennett.

But alas, it was.

Parker apparently pulled the entire g-tube out of Bennett's stomach with the bulb completely inflated.  Think of it as what it might feel like to have your entire earring (back included) pulled through your earring hole.  Ouch!

Bennett explained it hurt a bit when Parker pulled it out but it didn't hurt to go back in.  I was glad to hear this.  Obviously, it couldn't have hurt too much because Bennett didn't seem the least phased by it.  Good thing these boys are friends because neither seemed to care and the entire incident was quickly resolved.

My biggest fear has always been having another child wanting to put something (such as a pencil or toy) inside the tiny g-tube hole, potentially making Bennett sick.  So, I used this opportunity to teach Bennett about how to tell his friends "no" when they want to touch his g-tube or how to get a teacher to show them.


On the way home from picking up the boys from preschool, I couldn't help but call Parker's mom, Dana.  We laughed as I told her what innocent thing Parker had done that morning.  Neither one of us could quite believe Parker was strong enough to have pulled it out.  But I guess we both underestimate the power of kid's interest.

A bit later, Dana texted me that she had spoken with Parker about the incident and Parker had said he "didn't mean to take Bennett's 'bump' out" (Parker's word for the g-tube is "Bennett's bump") and that "he loves Bennett." :)  So sweet.

I'm so glad Bennett has a friend like Parker.  As I think about Bennett's life, how it will be different from other children around him, I think about how important friends are going to be for him in the future and how unique those friendships will be.  

My hope for Bennett is that he will have friends who will look past his disease and love him for who he is, at times encouraging him to reach beyond his limitations but, at other times, just walking with him through his fight against CF and embracing all that comes with it.

I see Parker's taking Bennett's g-tube out as a sign of a friend who is curious and interested in who Bennett is.  And I want to encourage curious friends because it is in that place that they fully can know Bennett.

I want Bennett to learn how to be an advocate for himself, sharing with friends about himself as he feels comfortable but stopping them at the point when he feels unsafe.  I love that this day in preschool was just the very beginning of a lifetime of sharing Bennett's sharing of story with his friends.

Parker, I'm confident there is about nobody else Bennett would rather have to pull out his g-tube than you!  We love you, little buddy! :)


Cradled

Thursday, April 4, 2013

I have never had a miscarriage, an issue with infertility or lost a baby. And yet, last night, I found myself attending "Cradled," a local support group for women who have experienced miscarriage, infertility and stillbirth.

I didn't think I belonged there.
My OB/GYN recommended it.
My grief convinced me to go.

The reality is,
it probably is a perfect place for me right now.

Last night, sitting among 8 women who have experienced some level of infant loss, I shared my story, too -
....the story of being the one my best friend called when she realized her baby died in her womb
...the story of having my own son stop moving in the womb as he, too, was slowly passing in utero
...the story of how my son was born alive but struggled to thrive and, not long after, was diagnosed with a terminal disease that threatens death and suffering for the rest of his life
...the story of how I carry within me, a baby at 23 weeks, that I am struggling to fully embrace for fears I will lose her too.

I am terrified that I'm going to lose this baby.

Will the baby make it to term?
Will the baby even be healthy if it does?
What loss will I experience next?

The group "Cradled" always ends their support group sessions by lighting a candle for every child, belonging to a mother in the room, that has been lost.

"But what about me?" I asked.
The support group leader didn't understand what I was asking.
She said, "you come back next week."
I said, "No, what about me? I haven't had a loss. So what do I do about lighting a candle?"
The leader said to me without looking away, "You light one for your baby."

Suddenly, the tears dropped, rushing my cheeks, as though I almost couldn't contain the thought.  
I realized I don't have the pain of having to light a candle for baby that has been.
I get the opportunity to light a candle for the baby that is.

The other mothers in the room have no choice but to light a candle in honor of their babies' lives. And here, I have the opportunity to light a candle in honor of the baby that is coming. Grief, confusion, sadness and joy hit me all at once.

The words of my counselor rang in my ears, "Your being connected or disconnected to your baby isn't going to change the pain of losing her, if that is what happens. The pain hurts either way."

I stared at the candle and tried to picture my daughter.  I told myself, as I watched the flicker of the tiny flame lit in her honor, "You cannot ignore her or grieve her as though she is not here. You cannot hide from pain by pretending it's not happening."  Just like the mothers in the room that must find a way to love their babies even though they are gone too soon, I must find a way to love my baby before she is even with me.

I would've thought that Cystic Fibrosis would've taught me how important it is to move through fear quickly and not allow it to control my life. But that's not really the way the human heart works. The human heart doesn't always work in tandem with the human brain.  Fear of pain brings with it a strong desire to hide.

I have around me signs of the baby...signs of preparing for a baby to come. The crib is out of the attic. Hand-me-down clothes sit in a potential nursery. Paint colors are being chosen.  I am preparing for the baby I have wanted very very much.

 And yet I struggle to enjoy the signs of baby around me because I'm trying to shut my eyes for fear of pain... which brings in itself feelings of guilt (how can I not be connected to a baby that is about to be my own, especially when I know so many women who yearn for a baby so badly?)

I struggle because to really accept this baby means that I'm willing to risk placing my heart on the line and know that I don't have any control over whether my heart is broken.

"How are you feeling?" "Aren't you so excited?" These are the questions I get so often.
I say 'I'm feeling great. I'm so excited.' And on one level, both of those are true. But deeper within, I also feel sad.  I don't like loss very much.  I don't want to experience it again.

If anything I gained from last night's Cradled support group, it is how important it is for me to be honest with myself and others about how I am feeling.  It's not worth spending energy hiding my fears and, in the process, pretending that this pregnancy comes with it an unbridled joy and anticipation.  I think those feelings will come, too.  But it's ok if it is cushioned between feelings of dread and sadness of what has been lost before and the fear of what could be lost in the future.

The reality is...
I love her enough
that I just don't want to lose her.

 

Gamel Easter Traditions 2013: Easter Morning

Wednesday, April 3, 2013

A few months before Easter, I sat down and gathered all of the best family Easter traditions I could find, especially those that tell the story of Easter.  This is one of several Easter traditions we have adopted in hopes it will help our children more deeply appreciate and understand what Easter is all about.  We are always looking for creative ways to teach our children about God and the world around us.  If you have a family Easter tradition to share, please leave it in the comment box below!


Each year, the Easter Bunny visits our house and leaves the boys a few new items (mainly candy or small toys) in their baskets.  We try make sure to explain that the surprise of receiving "new" things is a symbol of the surprise Jesus gave us when he arose from the dead and began the process of making the world anew.










A tradition we began this year is having the boys make "He is Risen" posters to put up in the house on Easter, a reminder Easter is a day to celebrate that Christ is alive.


I asked Oliver to write "He is Risen" at the top of the page and then draw something new.  Oliver drew a space shuttle with rocket boosters.  I suppose that counts! :)  (Bennett's "new" item for this tradition was the mere refusal to do it.  We'll work on that one more next Easter. :))

Gamel Easter Traditions 2013: Resurrection Cookies

A few months before Easter, I sat down and gathered all of the best family Easter traditions I could find, especially those that tell the story of Easter.  This is one of several Easter traditions we have adopted in hopes it will help our children more deeply appreciate and understand what Easter is all about.  We are always looking for creative ways to teach our children about God and the world around us.  If you have a family Easter tradition to share, please leave it in the comment box below!

The evening before Easter, Brian and I decided to make no-bake "resurrection cookies" with the kids.  I will post pictures of what we did and share instructions of what we followed, in case anybody is interested... (I borrowed this idea from: http://www.catholicmom.com/easter_story_cookies.htm)



"Preheat oven to 300 degrees F Place pecans in zipper baggy and let children beat them with the wooden spoon to break into small pieces. Explain that after Jesus was arrested the Roman soldiers beat him. Read John 19:1-3."


"Let each child smell the vinegar. Put 1-tsp. vinegar into mixing bowl. Explain that when Jesus was thirsty on the cross he was given vinegar to drink. Read John 19:28-30"


"Add egg whites to vinegar. Eggs represent life. Explain that Jesus gave His life to give us life. Read John 10:10-11."



"Sprinkle a little salt into each child's hand. Let them taste it and brush the rest into the bowl. Explain that this represents the salty tears shed by Jesus' followers, and the bitterness of our own sin. Read Luke 23:27."



"So far the ingredients are not very appetizing. Add 1-c. sugar. Explain that the sweetest part of the story is that Jesus died because He loves us. He wants us to know and belong to Him. Read Ps. 34:8 and John 3:16."



"Beat with a mixer on high speed for 12 to 15 minutes until stiff peaks are formed. Explain that the color white represents the purity in God's eyes of those whose sins have been cleansed by Jesus. Read Isaiah 1: 18 and John 3:1-3."


"Fold in broken nuts."



"Drop by teaspoons onto wax paper covered cookie sheet. Explain that each mound represents the rocky tomb where Jesus' body was laid. Read Matt. 27:57-60."



"Put the cookie sheet in the oven, close the door and turn the oven OFF."


"Give each child a piece of tape..."




"...and "seal" the oven door. Explain that Jesus' tomb was sealed. Read Matt. 27:65-66."



"GO TO BED! Explain that they may feel sad to leave the cookies in the oven overnight. Jesus' followers were in despair when the tomb was sealed. Read John 16:20 and 22."


"On Easter morning, open the oven..."

"...and give everyone a cookie. Notice the cracked surface and take a bite...."



"...The cookies are hollow! On the first Easter Jesus' followers were amazed to find the tomb open and empty. Read Matt. 28:1-9."

Gamel Easter Traditions 2013: Decorating Easter Eggs

Tuesday, April 2, 2013

A few months before Easter, I sat down and gathered all of the best family Easter traditions I could find, especially those that tell the story of Easter.  This is one of several Easter traditions we have adopted in hopes it will help our children more deeply appreciate and understand what Easter is all about.  We are always looking for creative ways to teach our children about God and the world around us.  If you have a family Easter tradition to share, please leave it in the comment box below!


The one thing I love about dyeing eggs is you can make it as simple or complicated as you want.  This year, the boys not only enjoyed coloring their eggs but writing on them with a crayon so that they can make designs on them.  


Brian and I enjoyed talking with the boys about how our dyeing eggs is like giving them "new life."  We explained that this "new life" is that which we experience in Christ.  Although the boys are too young to fully understand what we are talking about, we share about God gives us Spring (a time of newness) and how, on Easter, God began the process of making the world new.











Bennett enjoyed putting stickers on his eggs when they were dry.


Brian made this egg in celebration of our baby girl.


The finished product!


Superman, made by Daddy, to the delight of Bennett.


Gamel Easter Tradition 2013: Visit to a Grave

Monday, April 1, 2013

A few months before Easter, I sat down and gathered all of the best family Easter traditions I could find, especially those that tell the story of Easter.  This is one of several Easter traditions we have adopted in hopes it will help our children more deeply appreciate and understand what Easter is all about.  We are always looking for creative ways to teach our children about God and the world around us.  If you have a family Easter tradition to share, please leave it in the comment box below!

This year, as a way to illustrate Good Friday to the boys in a concrete way, Brian and I decided to follow the suggestion (found at here) to "go to a park, search for an oversized boulder and try to move it.  Read Matthew 27:62-66; 28:1-4.  Discuss how a larget stone couldn't keep Jesus in the tomb and how surprised the soldiers must have been when it was rolled away."  The only change we made was to go to a cemetery instead of park.  It turned out to be a pretty special family experience.

When we told Oliver on Good Friday we were going to visit a real grave so we could talk about the grave Jesus was buried in, Oliver exclaimed, "really?!  A cemetery!?  I've never been there before!"  Who knew a five year old would find such a place interesting or exciting? :)


This was the largest tomb marker the boys could find.


The boys tried to roll it away.


I love how Oliver, exasperated he couldn't move the tomb, wrapped his arms around Bennett's body and tried to help him push even harder.  Obviously, it didn't move.


Our theologian in residence, Daddy, read from the Bible, (Matthew 27:62-66 and then Matthew 28:1-7) parts of which we each acted out.  Oliver loved doing this!  Oliver played the part of the "angel" and I pretended to be "Mary Magdalene."  With Daddy's prompting, Oliver the angel said to me, "Do not be afraid.  He is not here!" while Bennett watched on.

During breakfast on Easter morning, when Brian told the boys about how when Jesus came back, Jesus' disciples thought he was an angel, Bennett piped up and said, "do not be afraid!"  We laughed at the moment and took joy in the fact that even he had remembered what we did a few days earlier.


The boys loved coming across this large cross in the middle of the cemetery.


We wouldn't let them sit down on any of the tombstones out of respect for the cemetery and all those buried there.  But we did let them sit at the foot of the cross.  It seemed only appropriate.  :)