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Archive for January 2013

How Josh Did It

Thursday, January 31, 2013

My friend Josh called me up in December and asked if I would mind if he used his annual Christmas gathering of friends to raise money for Bennett.  He had wanted to put a "tip jar" out on the table to allow for friends of his to donate to the Cystic Fibrosis Foundation on behalf of Bennett.

Of course, I said "yes" as Brian and I felt very touched by such a generous act.  This wasn't an event put on by us.  It was a friend's event that he wanted to use to help donate money to find Bennett a cure.

Josh's passive tip jar ended up raising $156 which he just officially donated to Bennett's Brigade.  Every penny is appreciated.  But just as much as the financial gift, the gift of offering to do something on Bennett's behalf is what's touching.

Here are pictures of how Josh did it:

I love how Josh created his own sign, which he framed, to encourage others to give.  This picture of Bennett was from a few years ago when Josh and Linsday and Brian and I took all of our kids to the pumpkin patch.


I thought he did a great job on that poster.  It's moving.


Josh also made thank you notes, which I thought were clever.  The front is a picture of CF doctor who is homeless and holding a sign that says, "Will Work 4 Food."


Inside, the card says, "Because of your generousity, these guys might lose their jobs.  Thanks for hleping make CF history."


These cards were fill in the blank.  Nice. :)


Of course, any card created by Josh always has his characteristic "Carn-Dog Creations" signature on the back. :)

Thank you Josh and Lindsay for all that you do for our family - the way you love us, the way you build into our lives - and the way you help us try to save our son!!

What's my role in this fight??

Tuesday, January 29, 2013

When facing an incurable disease, one must decide to 'lie down and die' or to 'get up and fight.'

I believe that our family is like many who face Cystic Fibrosis on a daily basis, we chose to get up and fight.  How can we quit on a child who has hardly had a chance to live?

But what does it mean to "fight" a disease that is slowly suffocating my child?  While I can comfort my sick child, my healing skills are essentially useless.

I, only partly, even understand how Cystic Fibrosis affects my child's body.  I do not have within my power the opportunity to heal him.  Only doctors and scientists will ever be able to do that.

So, what does a family with a child with Cystic Fibrosis do in an effort to 'get up and fight'?

I believe this is what it means to fight: to drag all the resources within our power to the feet of the people who can actually make a difference.  To fight Cystic Fibrosis is to raise as much money as possible to pay for the absorbently expensive and extremely time-consuming process that must be undergone to eventually discover the cure for CF.

And so, life with Cystic Fibrosis is this...

- keeping the CF child has healthy as possible in order that the child will eventually benefit from a cure
- spending 8 months of the year preparing to fundraise and the other 4 months actually fundraising.

Enter fundraising season...

I have many emotions during this time of year.  Sometimes during this season, I feel energized and inspired.  This is the time when I can feel the most hopeful - like our efforts for a cure really matter.  I feel cared by those who love our son and want to see him live beyond his predicted median life expectancy of 37.

And yet, this is the time of year I can also feel the most defeated, overwhelmed, lonely and worried.  The task seems so big.  Do I really have to do this again? Does anybody really care?  Am I fighting alone?

But part of fighting a battle is reminding myself why I'm there in the first place.  I am here for Bennett.

Bennett is worth all my effort.  If I fail, I fail.  But if I succeed, I succeed.  Bennett is worth working for, raising money for, finding a cure for.

For all the days his little body has faced defeat and for all the days he has felt overwhelmed, lonely and worried...I can do this.  I raise money to find a cure for Cystic Fibrosis because this is my part in the fight.

It's my role to drag all the resources within our power to the feet of those who can make a difference and find a cure.  This year, my efforts will be to encourage, influence, activate, enliven and inspire those around me to join our team to make a difference in the life of Bennett and those with Cystic Fibrosis.

And so, it begins for 2013...

http://bennettsbrigade.com

Will you join us in this fight?

Pregnancy and Kid Quarantine

Sunday, January 20, 2013

We have been so very touched by the emails, phone calls, Facebook messages and blog comments we have received this week about our news!

We are extremely excited about having another baby.  And I have felt incredibly loved to know so many of our friends and family are equally excited for us!

Thankfully, so far, I have had a great pregnancy.  I have had almost no morning sickness. And now that I'm in the 2nd trimester, exhaustion and excessive sleepiness is starting to lift.

The boys are really excited for the baby.  Oliver's conversations about the baby are mainly inquisitive about what the baby is doing right now ("does it have ears?? can it hear me?").  Bennett usually communicates he's anxiously waiting: "I excited for your baby to come out." (He always refers to it as "your baby" when speaking to me.  It always cracks me up.)

In other news, Oliver woke up with a fever this morning.  We think it's a cold.  The flu can be very serious to Bennett so we are monitoring him for that too.

Several weeks ago, Brian and I decided we would "quarantine" to our back office/guest bedroom any family members who shows any signs of a fever or the flu.  The goal is to keep the rest of the family (particularly Bennett) as well as possible.  (Besides, it's a bit more complicated for me right now, as well, since pregnant women can't take sudafed, advil and some of the other medications that make dealing with a cold a bit easier.)  I imagine, by the end of this cold/flu season, each of us will be relegated to the back bedroom at some point.  :)

The flu hasn't hit around us too hard so we're ok for now.  But, if we find the flu hits the boys' school or our friends hard, we will probably pull the boys from school for a short period, just enough to let it run its course.  Our entire family got our flu shots months ago.  But that doesn't mean it won't hit us with a different strain.  So, we are holding our breath, washing our hands and hoping the cold/flu season goes away quickly!!

Family Tree

Tuesday, January 15, 2013


We have something to share...


Watch the video of how we told the boys here: http://youtu.be/C-HA7_8Cnig





We're having a baby!!!


We are very excited about this planned pregnancy. For the past three years, we have consistently sought counsel and prayed about the decision to go forward with having a third child, a child we had planned to have even before we knew Cystic Fibrosis would be a part of our life. 

Risk is of course part of every pregnancy and since Brian and I are carriers for the CF gene our risk is even more acute. We have sought to minimize risk of complications by seeking the advice of doctors and by having Breck be carefully monitored throughout the pregnancy to prevent what happened at Bennett's birth from happening again. 

Yet life cannot be lived without risk. And so we also recognize that, regardless of the precautions we take or plans we make, God is the giver and sustainer of life. We recognize that we do not control this process. We recognize that we are part of God's story in the world, and not that He is merely part of our private story. 

Choosing to have another child in any situation is to trust God. But for us it is also a choice to hope, a confession that we do not believe CF will have the last word on our family or our future. 

We are thrilled about the opportunity to give our boys a sibling, most likely our last child. We appreciate all the love from friends and family as we enjoy and embrace the journey of welcoming from God a new little life into our home.

With love,
Brian and

Visiting the National Weather Service

Monday, January 7, 2013

Shortly after Oliver's birthday in November, Oliver was given an opportunity to visit the National Weather Service (NWS) Center in Fort Worth.  It was a super wonderful surprise we came upon while at Baylor when we met a NWS meteorologist who welcomed Oliver's questions and curiosity about tornadoes.

Oliver was SO very excited.  He had had his tornado birthday party only a few days before so he decided to wear his tornado tshirt to meet the meteorologists.  (Oliver kept calling them "storm-chasers" since that's what he hoped they were.  I just explained they were, in fact, storm-chasers...just storm-chasers who chase storms from their office chair."



Brian and I were really surprised how little the National Weather Service office is.  I guess whenever I have seen the National Weather Service's announcements break into my TV shows, I must have envisioned some massive high rise of busily working meteorologists.  It turns out, it was a very quiet laid back atmosphere filled with nothing more than some computers, TV screens and archaic (but still very relevant) meteorology equipment.


Brian and I thought the reason the TVs were on football the Saturday evening we came to visit the NWS was because it was the weekend and the guys were relaxing on the job.  But it turns out that the TVs are always on those channels all day long.  They are the local news affiliate channels so that the NWS can monitor the local news weather forecasts.  The NWS meteorologists regularly "talk" to the area weathermen (talk, as in chat via messaging on the computer) as they work together, especially in dangerous weather conditions.


The original meteorologist we met a few weeks before was unable to meet us the night we came.  So Steve, another meteorologist at the National Weather Service was happy to give us a guided tour.  Oliver was most interested in the red light in the center of the room.  Steve explained the light went off during bad weather to signal to all of the meteorologists in the room to be quiet whenever one of the meteorologists were on the phone recording their voice for a storm/tornado warning.


The interesting thing is that although meteorologists can record specific warnings via phone (to be broadcasted on the radio and TV), most of the time an automated voice is used.  Steve showed Oliver how a knob on the computer allows the meteorologists to change the automated voice from a man's voice to a woman's voice.




After some time inside, Steve brought Oliver outside to show him how they monitor the weather.  This was the rain gauge.


The rain gauge was such a simple set up.  It was a cone with a hole on the top of it and a pan on the bottom.  It seemed this rain gauge was probably created in the 1950's.


However, Steve let us in on a secret.  The rain gauge had been outfitted with a small computer that actually documented the amount of rain that had been caught as well as a USB flash drive that allows the meteorologists to check the rain gauge several times daily and upload the data on their computers.









This piece of equipment, Steve explained, is not as important these days as it was when local farming was so important many years ago, measures the ground/soil temperature.


These two pieces of equipment are called temperature beehives.  They measure the high and low temperature.

This instrument is called an anemometer tower and measures the wind.


Of course, Oliver was highly interested in where the meteorologists go when there is a tornado.  So, Steve told us an interesting piece of information.  Basically, the National Weather Service is housed in a double-wide trailer.  So, it turns out that their "break room" is their tornado shelter.


Steve showed us how the break room is actually enclosed in very thick and heavy metal. (Notice the doorway is SUPER thick.)

This very heavy door can be shut and locked to protect the meteorologists in the case of a tornado.


Oliver was able to reset this piece of equipment, which measures the air pressure.  I wish I could remember what it was called but, at this point, I can't remember anymore.  Oliver really enjoyed getting to help the men do their work.  They have to check and reset the equipment about twice daily.


Meteorologist Jason was incredibly sweet to let Oliver watch what he was doing.  He was monitoring the satellite radar and watching the approaching weather.


Probably the highlight of Oliver's visit was getting to help lift off the NWS weather balloon.  This is Meteorologist Gerry showing Oliver what the weather balloon looks like deflated.


Oliver got to touch and hold the weather balloon.  It was just like a very very large balloon.


Bennett was such a champ.  He was so patient while the men talked to Oliver, Brian and myself.



A few minutes before 6pm, we walked outside the National Weather Service to the weather balloon inflation/launch building.


This building holds the hydrogen used to blow up the very large balloon.  It is in a separate building since hydrogen is highly flammable.  Inside the dome of the building is a dish that receives radio signals to track the balloon and record its data.



This small box is attached to the bottom of the weather balloon.  The purpose of a weather balloon is to rise through the atmosphere and gather as much information as possible with regards to the temperature, dewpoint, and wind direction and speed at different pressure levels in the atmosphere.  This box also has a GPS onboard so that the meteorologists can track how fast the balloon goes up, what direction is goes and when it finally pops/lands.



The balloon sits ready to be launched.


Oliver and Bennett watch as Gerry raises the garage door to the building.


I couldn't really get exactly how big this balloon was until I saw this picture of how little the boys were compared to it.


Oliver was so very excited to help launch the balloon.





Gerry hooks the data box to the string on the bottom of the balloon.


Gerry had to pull the very long string out pretty far to keep the string from getting tied up in a knot before the launch.


Ready...


Set...


Go...


The balloon went up SOOOO fast!  I could hardly capture it!  Within seconds, it was far up in the sky.


Oliver and Mr. Gerry


Gerry was very sweet and offered several pamphlets to Oliver.  I was like a library in there with boxes of promotional weather materials.  Gerry would say, "do you have a book about this?"  Olive would eagerly say, "yes but I can have another!"  He was so grown up and eager with his little book under his arm, ready to accept more tornado material to read.




Before our time at the NWS came to the end, Steve showed Oliver a few more things on the computer. This moment was particularly funny to me.  Steve was showing something to Oliver, pointing to the words on the screen when I jumped in and said, "see Oliver, he's pointing to the word 'tornado.'  You know that word because it starts with a 't'" when Steve started laughing and shrugged, "I keep forgetting he's only five!"




Oliver and Mr. Steve


Our tour lasted about two hours and we could have stayed even longer.  But the boys became tired as it was their bedtime - and time to make the several hour trip back to Waco.

We are so thankful for the opportunity to get to see behind-the-scenes of the National Weather Service.  Oliver learned a ton and Brian and I were reminded how fortunate we are to have such smart and talented people watching out for the safety of those in our community.

As a way to thank the NWS meteorologists, I asked my friend Paola to make up some yummy tornado cookies.  I had no idea how amazing they would turn out to look and taste!!  Oliver and I sent a dozen cookies to the sweet meteorologists with a thank you note from me and a hand-drawn picture from Oliver:

It may be hard to see but I tried to label all of Oliver's drawing.  It was made up of several tornadoes, "lots of damage", tons of lightning, a few clouds and each of the meteorologists. :)


Thank you to Mark, Steve, Gerry and Jason for your generosity!!  Thank you for showing us what you do and teaching our little storm-chaser-in-training!!