21 August 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.

17 August 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!!

14 August 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

06 August 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!

03 August 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.