Thursday, August 21, 2014

Raising funds for another orphan disease

Our family has watched the amazing awareness and donations being made of and for the awful terminal disease, ALS (Amyotrophic lateral sclerosis), and have been very excited for the ALS community.

While Brian and I do not know anyone personally who suffers from the disease, we do personally know how big it feels when someone does something so little, whether they know what ALS is or whether they even care.  ALS is now a more widely known disease due to all the publicity.  The ALS Association has received more money in donations than ever before.

While our hearts yearn to see this kind of awareness and care for Cystic Fibrosis one day as well, we are thankful that others who share a similar grief are benefiting - in hopes that one day, they, too, will have a cure in hand.

In many ways, Cystic Fibrosis and ALS are nothing alike.  But, in some ways, they are very similar.  I thought I'd share a few things about ALS that feel similar to our own struggle with CF.

* Both ALS and CF are considered "orphan diseases" and have historically received very little attention or research by pharmaceutical companies.
* Both ALS and CF have about the same number of people affected in the US: 30,000 each.
* Both ALS and CF, in late-stages of the disease, end with respiratory failure and death.
* Both ALS and CF are progressive and have currently have no cure.

Yesterday, Oliver was challenged by a little girl in his first grade class to participate in the #icebucketchallengeforALS.  I spoke with Oliver about the disease so he understood why he was being asked to pour cold water on his head.

I explained that ALS, like CF, has no cure and causes the body's muscles to slowly stop working.  I said, "people who have ALS eventually lose their ability to move their talk or eat...even breath."

I stopped there and hadn't planned to go on.

But Oliver filled in the rest: "...and maybe they will die."

I said, "yes, they often do."

I explained that in the same way that our family tries to raise money for a cure and tremendously appreciates when people who care about us gives money for CF, we want to do that for others who need a cure.

Today our family donated money to the ALS Association and hope our fellow "orphan disease community" will soon see their cure.

CF is nothing like ALS and, yet, our grief and desperation for a cure, is.

Sunday, August 17, 2014

One thing about CF I forgot to mention...

"Hi Breck, we have a problem with Bennett" was how the conversation started out.

I've heard these words twice before from a teacher - once when the teacher had to call me when Bennett's g-tube was accidentally pulled out by another student in preschool and once when the principal had to call me over concerns Bennett had something protruding from his bottom.  Turns out, this time, it was regarding the second.

Although I thought that I had explained everything Bennett's new Pre-K teacher might need to know with regard to Bennett's CF care in the classroom - enzyme dosing, his need to stay away from coughs and colds, his tendency to be overheated - I completely forgot to mention possibly the most distressing thing for anybody caring for Bennett: what to do when his rectal prolapse comes back.

This is Bennett's teacher, Ms. Borg.

On Friday, while Bennett was on the potty at school, his rectum protruded from his bottom (this is what is referred to as rectal prolapse, a symptom of cystic fibrosis).  Bennett's rectal prolapse has been a problem that has been long addressed by his pediatric surgeons.  We have had several hospitalizations and a surgery due to this issue.  In fact, just a few months ago, I brought Bennett in to  make sure everything was still ok with it.

While Bennett is continuing to have minor issues with his rectum protruding regularly (although, not often), the surgeon explained she did not see a need for it to be treated, as long as it is returning to its normal place inside within a reasonable amount of time (about 30 minutes).

At the end of the 2nd day of school, I received a call from Ms. Borg, Bennett's teacher.  She seemed concerned about what was happening.  I tried to evaluate whether or not I needed to come up to the school to get him or whether it was just "Bennett's normal."  I ended up realizing it was ok so I reassured Ms. Borg that once Bennett was no longer trying to strain on the potty, his rectal prolapse should resolve itself on its own but that, if not, she could always just "push it back in."  (I can't imagine what that might have felt like to have heard on the other side of the phone - ha!)

A few minutes later, I received a call from the school principal who had heard about Bennett's rectal prolapse and had wanted to just check in with me.  Dr. Blake has been the boy's school principal since we started St. Paul's and I have a great respect for him.  He is incredibly supportive of our efforts to care for Bennett.

Dr. Blake and Bennett, Summer 2014
While on the phone with Dr. Blake, he said something to me that will always stay with me.  I was apologizing for the challenges that Bennett brings to the classroom when Dr. Blake said, "Parents often think their child's needs are bigger than others.  But each child has their own needs.  These just happen to be Bennett's needs.  We are committed to Bennett and meeting his challenges.  We will do whatever we can for him.  We just need you to teach us."

As a mother of a special needs child, it was like water to my soul to hear such kind words.  I knew Dr. Blake wasn't saying that to be "nice."  He was saying it because he meant it.  And I know it to be true because it's evident that Bennett's school is made up of an amazing group of caring people who *are*, in fact, committed to him.  What happened next was just further confirmation this was true.

While I was on the phone with Dr. Blake, Ms. Nolan, Bennett's teacher from last year, apparently found out Bennett was dealing with rectal prolapse so, most comfortable with his needs as she was his teacher last year, she confidently walked to the classroom next door and volunteered to do what Bennett needed - to just "put it back in" for him.

Ms. Nolan and Bennett, 2013
It makes my Mama heart incredibly thankful to know that Bennett doesn't just have one teacher who loves him and knows how to care for him, but multiple teachers who do.  

I consider our family incredibly blessed to have an army of supporters at Bennett's school: teachers who care about him as a whole person, families who help raise money for the Cystic Fibrosis Foundation so we can get him a cure and a principal who means it when he says St. Paul's is committed to Bennett.

Thank you Ms. Borg, Ms. Nolan and Dr. Blake for being brave on Friday dealing with Bennett's rectal prolapse issues and being willing to continue to help him whatever tomorrow brings!!

Thursday, August 14, 2014

First Day of School 2014

Today was the first day of school for our family!  All three are going to school this year!  

It's hard to believe our little Oliver is now in first grade.  He now has to wear a belt to school and tuck in his shirt like the big kids. :) Bennett started Pre-K this year.  He has grown up so much this summer.  He has become very independent and has grown significantly!  Avonlea will be going to school two days a week.  She's very social and we think will really love playing with friends!   I'm excited for new adventures this year!

First Day of School 2014

Oliver, First Day of First Grade, 6 years old

 Bennett, First Day of Pre-K, 4 years old

Avonlea, First Day of Early Toddler Class, 1 year old

Wednesday, August 6, 2014

Avonlea's Ice Cream Birthday Party

Last week, we held a small birthday party to celebrate Avonlea's first birthday.  This was my first girlie birthday party so I may or may not have overdone the pink.  :)  Planning Avonlea's birthday party reminded me that it wasn't that long ago that we were celebrating Bennett's first birthday.

It's hard to believe that it was one year ago that we brought our tiny baby girl home from the hospital. At 12 months old, Avonlea now walks and can sign several words in sign language (mainly "all done" and "bye bye").  We are pretty sure Avonlea says a few words too, but we're still trying to decipher how much of her talking is gibberish and actual speaking. :)

We chose an "ice cream" theme for Avonlea's first birthday because she ice cream is her favorite food of all.  She's a quiet baby until you stop giving her her ice cream and then she can get loud! :)  Cookies made by our friend Paola at Paola's Cakes and Desserts.

I made these cute little ice cream cone cookies from an idea I found from here:


We were really blessed with a beautiful day for Avonlea's party.  Typically, August summers, even in the evening are too hot to be outside.  But the night of her party, it was cool and windy enough to enjoy being outside, especially with ice cream in hand. :)

Happy birthday, Babycakes!  Mama and Daddy love you to pieces!!...

...your sweet big brothers do too!

Sunday, August 3, 2014

Fixer Upper

If you've caught HGTV's hottest new show, Fixer Upper, you probably already know it takes place in our current hometown: Waco, Texas.

What you might not already know is Brian and I are friends with the show's very talented carpenter Clint and his wife, Kelly Harp, both of Harp Design Co. and their three sweet kiddos.

Brian and I met Clint and Kelly a few years ago when they started attending our church.  Clint had overheard me tell of Bennett's Cystic Fibrosis diagnosis so shortly after introducing himself, he shared that before moving to Waco to follow his passion of carpentry, he used to sell IV antibiotics to a CF clinic in Houston so he knew a bit about the disease.  It didn't take long for Kelly and I to "click" as friends.  Kelly and Clint are supporters of Bennett's Brigade and of Bennett's fight against CF.

About a year ago, Kelly shared with me that Clint's work might be on a show potentially airing on HGTV starring Waco's Chip and Joanna Gaines of Magnolia.  A year later, not only is Clint's work often featured on the show but he can be seen on there, as well.  In fact, Kelly and Clint have one full episode of the show dedicated to their own fixer upper of a home, episode 5.

A while back, I came across a Facebook post that Clint posted on their Harp Design Co. Facebook page that I wanted to share here.  Personally knowing this sweet family and Clint's passion for what he does, the corresponding words with this picture are meaningful:

"2 1/2 yrs ago, fresh out of corporate america, I turned this leg while simultaneously feeling completely overwhelmed and wondering what in the world I was doing. It took me almost 2 hours (which is not good) and I went home and cried. My kids put stickers all over it that said "great job!" and my wife, @kellygharp, said she loved it and me. A few weeks later @joannagaines came to the shop, saw that leg in the corner, pointed and said..."that's the leg i want for the magnolia farm tables". True stories are the best." -Clint of HarpDesignCo

Unknowingly, Joanna used an unwanted leg for her now famous Magnolia Farm tables.  Daily, Clint uses old scrap reclaimed wood for his handmade furniture shown on HGTV.  Sometimes, that which we believe to be worthless can be just the start of something amazing.

Tuesday, July 22, 2014

Baby Bow Tie + Kendra Scott Cystic Fibrosis Fundraiser for Bennett

A few weeks ago, Brian, the kids and I attended a fundraiser given in honor of Bennett at Kendra Scott Jewelry in West Village in Dallas hosted by Baby Bow Tie.  All proceeds went to the Cystic Fibrosis Foundation.  

The event, which offered bubbles, bow ties and bites, was SO fun!!  I loved "oohing" and "ahhing" over adorable little bow ties and beautiful jewelry while visiting with friends and knowing we were helping Bennett!  

The Baby Bow Tie/Kendra Scott fundraiser raised $558 for the Cystic Fibrosis Foundation!  This was a smashing success for a 3 hour shopping fundraiser!!

I explained to the boys that we were going to a fundraiser to help us find a cure for Bennett's Cystic Fibrosis.  It makes them happy to help Bennett.  They don't necessarily know how money is being raised but they do know people are coming out to help.  The CF Walk and fundraisers such as this one are a wonderful way to teach both boys how people care about them and our family.  It serves as a reminder that while Bennett struggles with his health, he is not alone.  I know that while he doesn't fully get it, his heart is reminded again and again that he is loved.  And that's meaningful to me as a mother for him to feel.

Pictures capturing the event were taken by Dyan Kethley Photography from Dallas.  Thank you, Dyan (pronounced Diane), for allowing me to post these beautiful pictures here!!  I am incredibly thankful to have such gorgeous pictures by which to remember the night!

Kat Armstrong is the designer and owner of Baby Bow Tie and the person who worked so hard to make sure the night was a success.  Kat has such a huge heart for others and a particularly soft heart for Bennett.  I am so thankful for all she did and continues to do to help us find a cure for CF!

These are just some of the adorable bow ties that Kat has designed.  I love these bow ties, not just because they are cute but because they are also so easy to put on!  They have a magnetic clip so my boys don't mind putting them on or wearing them!  I am in love with Baby Bow Ties' newest collegiate collection!  It's so hard to find anything cute for little boys when dressing up in our favorite college football team colors.  

Baby Bow Ties can be found at NeimansNordstrom and over 40 boutiques across the US including The Couture Baby in NY and Kitson Kids in LA!  It's hard to find cute accessories for little boys but these bow ties have made me really love having little boys to dress up.  I'm a sucker for gingham and seersucker!! 

Although I had heard and noticed that people love their Kendra Scott jewelry down here in Texas, I had never been to a Kendra Scott store before.  Now, I get why people rave about it!  It was a lot of fun to to see all of the fun colors their jewelry come in!  It's easy to feel like a child in a candy store and you can't pick you're favorite candy! :)

The sweet ladies at Kendra Scott were so kind to help entertain the boys while they were in a jewelry store surrounded by women shopping.  They showed the boys how they could use Kendra Scott's website to design their own jewelry.    The boys had such a fun time placing new colors on the earrings.  The girls even took Oliver back to see some of the stones Kendra Scott uses in their jewelry. Oliver, our little geologist, was in heaven!

I had not realized, before visiting the store, that designing your own jewelry is half the fun of a Kendra Scott piece!  The ladies at Kendra Scott mentioned Kendra Scott is very popular with bridesmaids.  With as much jewelry as Oliver and Bennett made during the few hours of the fundraiser, I'm glad they don't yet know how to check out online!

I loved watching people design their own jewelry using the Kendra Scott website.

I was so delighted to see our friend Lindsey at the event.  Lindsey and Brian are at the same program at Baylor.  Lindsey actually introduced me to Kat several months ago when Lindsey joined Bennett's Brigade and began raising money.  I am incredibly thankful for this girl.  She is thoughtful, incredibly sincere and a huge advocate for helping us find Bennett a cure.

Thank you to Kelsey for volunteering her time at the event.  It meant so much to me that people who I didn't know would come out to make this night successful and help us raise money for CF!

I was so excited to see my sweet friend Ashley who came out to help us find a cure for CF.  Ashley and I know each other best as "Fopa" and "Sparkler" as those were our camp names when we worked together (and shared a cabin together) right after high school at Pine Cove Camps in Tyler, Texas.   I shared a little bit of our story on the blog a few years ago here.  I am so thankful for Ashley taking time away from her family to join me for a girls night shopping and helping my son!

This picture demonstrates my biggest surprise of the night!  At one point during the event, I looked out Kendra Scott's glass doors to notice a familiar face walking in.  It turns out that my Kappa Delta sorority sister Megan, who happens to live in the Dallas area but whom I didn't even know lived nearby, had heard from another one of our sorority sisters about Bennett's fundraiser.  My friend Amy, who lives in St. Louis, apparent contacted Megan to tell her about the event and encourage her to come. It was *such* a gift to have Amy tell Megan and then for Megan to come out to support our family. I felt incredibly loved.  After Megan and I had a chance to catch up on the last 10 years since we had last seen each other, Megan told me she wanted me to pick something out from Kendra Scott as she wanted to give me something as a gift.  At first, I resisted her gift.  But eventually I realized that it would be a very special thing by which for me to remember this moment and this night. Megan purchased my very first pair of Kendra Scott earrings (I'm wearing in the picture), a gift I will always cherish.

Oliver, Bennett and Avonlea did a great job hanging out in the store during the fundraiser.  But, of course, kids are kids so there was lots of rolling around on the floor and playing with each other. :)

Bennett does his "Batman-face" with Meredith, one of the sweet ladies at Kendra Scott.  Bennett is always being some sort of superhero.

Avonlea was in heaven with all of the people around.  This girl loves people!

 The boys loved looking at all the jewelry and bright colors!  They told me all the ones I should wear. :)

Bennett chose a pink pair of earrings for me to wear!   He always talks about how Avonlea and I are princesses.  His favorite colors for us are always pink. :)

Cutest little bow ties!  The Texas Tech one, the black and red one in the middle, is so sharp!

XOXO Baby Bow Tie

This is Amy, the Executive Director at the Dallas chapter of the Cystic Fibrosis Foundation.  I am so thankful for all she does for our cause.  She's not just someone I work with to find Bennett a cure, she is also someone I consider my friend.  

Brian: "Bennett, how much do you appreciate everyone helping to raise money to find you a cure?"
Bennett: Thiiiiiis much!!"

Thank you, Kat Armstrong and Kendra Scott for all that you did to help our little man breathe easy!! Your help to save my son means the world to me!

Kat knows, because I called her the next day and cried on the phone with her.  But my heart is so incredibly appreciative for the thoughtfulness of friends and strangers.  I certainly don't know why people are so loving and helpful but I am incredibly thankful that they are.  Thank you, Kat, for initiating this fundraiser and being with us in our fight against Cystic Fibrosis!