31 December 2012

December CF Clinic

We just arrived home from almost two weeks of visiting family in two different states for the holidays.  We had a wonderful time!  The boys did terrific and we loved getting to see family for Christmas.  But I am also very thankful to be able to start out this new year at home.  There's no place like being home and sleeping in your own bed!

I have so much to catch up on with regard to the blog.  Because of this, there are quite a few December/Christmas blog entries (such as this one) to follow.  I have been piling up posts for a while but haven't had enough time to publish them until now.

Also, several friends have mentioned they recently haven't been able to post comments on the blog.  I'm not sure what the deal is but I took off one security measure on Blogger in order to hopefully resolve the problem.  So, feel free to try it again if you want to share a comment!  I love hearing feedback and stories from other families like ours!

Earlier this month, Bennett and I went to his quarterly CF Clinic appointment.  Since our CF Clinic/Dallas Children's Medical Center is 2 hours away from our home, I promised Bennett he could get a snack from the clinic snack machine once we arrived.  He was soooo patient on the ride up to Dallas and chose M&Ms as his reward.

I decided not to worry about taking pictures of his appointment since I have some great pictures from our annual appointment in August.  Instead, I snapped pictures while we waited for our Doctor and nurses to come in.  Taking pictures gives me a way to document our time, sharpen my photography skills and keep us both entertained while we wait.  CF doctor appointments can take a very long time.

All in all, Bennett had a wonderful appointment.  Bennett registered in the 33rd percentile for weight, which Dr. C. feels good about (in CF patients, life expectancy is correlated to good weight gain).  Apparently, Bennett is moving along his growth curve just fine.  

For the first time, Dr. C was able to check Bennett's sinuses (since sinus issues and nose polyps are very typical with Cystic Fibrosis).  Bennett checked out great.  Overall, Bennett continues to thrive and received praised for his good health.

Bennett was very patient for the doctor to look in his ears and nose and listen to his lungs.  Each appointment, Bennett shows greater and greater maturity and tolerance to being touched and examined during this appointments.  It makes me so happy to see his appointments less and less terrifying for him.

God has given Bennett such a fun-loving personality.  I am so thankful for his free spirit as Bennett himself makes difficult hospitalizations and doctor appointments tremendously more fun, not just for himself but for those around him.  He takes nothing, including himself, too seriously.

As we were leaving Bennett's appointment, we stopped in the lobby so I could get a picture of Bennett with the Children's Medical Center Christmas tree.  Bennett enjoyed getting to see the very tall tree. I appreciated getting to see seeing how much Bennett has grown.

This is one of our first photos with a children's hospital Christmas tree (Bennett was in surgery at Cook's Children's Hospital in Fort Worth at the time this photo was taken so he couldn't be in the photo, 2009):

This was our second year (2010) to take a children's hospital Christmas tree picture.  We had come to the hospital for our quarterly CF appointment at Cook's Children's Hospital and Clinics:

We don't have a picture from last year - although there should have been since Bennett was in Scott and White Children's Hospital two days before Christmas in 2011.  But, I suppose we were too focused on getting out of the hospital to worry much with a children's hospital Christmas tree picture. :)

Nonetheless, this is our big boy, this year (2012):

Family Portraits, 2012

I have been looking forward to posting these pictures for a while now.  But I kept waiting to post them after I sent out our Christmas cards (they were late this year...I'll blame Bennett's unexpected surgery/hospitalization - that's a valid excuse, right??).

As she has done many times in the past, our sweet friend and beloved Waco photographer Khimberly from Snaptastic Shots delighted us by taking these pictures back in October.  The boys had a blast taking pictures and being themselves.  Brian and I had a great time, too (despite that it was soooo humid that day!).

Khimberly always makes our photo shoots so easy and fun.  I am so thankful for her laid-back personality and talent.  She captured some really special moments, for which I am eternally grateful.  :)

24 December 2012

Merry Christmas, 2012

23 December 2012

Visiting Santa 2012

One of my very favorite Christmas traditions is letting the boys visit Santa Claus.  Brian and I have found the very best Santa is found at the Bass Pro Shops.  

Bennett was such a trooper this year.  He didn't cry and was very brave.  Oliver soaked it up completely.  Oliver is such a serious child so he really studied Santa and tried to be on his best behavior.  Santa was one of the sweetest most genuine men I have ever met.  It melted my heart for the boys to have such a sweet experience.
Visiting Santa 2012
I was so disappointed that my new camera was autofocusing on me, which caused me to miss several really wonderful shots.  But, even if they turned out blurry, they still captured the magical moments.

Fully prepared to meet Santa, Oliver brought Santa a beautifully hand-colored picture of the very one thing Oliver wants more than anything else this Christmas: a tornado Pez dispenser.  

When I explained to Oliver that I didn't know if a tornado Pez dispenser even exists, Oliver quipped, "but Santa's elves can make anything, right??"  Oh. boy.  Believe me, I'm as excited as you to see how Santa pulls that one off! :)

21 December 2012

Christmas Tradition: Enjoying Christmas Lights

A Central Texas Christmas tradition Brian and I look forward to as much as the kids do is enjoying a village of Christmas Lights at BLORA in Belton, Texas.  

Visiting the lights at BLORA is super cheap and a fun thing to do as a family.  This was our third year to experience the BLORA lights.  Typically, we drive an hour down to Belton and eat dinner before visiting the lights.  It costs only $5 per car, which is a great price for such a fun experience.  We bring our own Christmas music to sing to as a family as we slowly drive through the lights.  The kids area always mesmerized.

About halfway through the lights, we always stop at "Santa's Village" to grab some hot chocolate and gigantic chocolate chip cookies.  It's a highlight for the boys and a nice break before our ride back home.

After hot chocolate and cookies, we get back in the van and put the boys in their pajamas so they can fall asleep in the car on the way home.  Brian and I love the hour long ride back after visiting the lights.  Every year, the boys fall asleep, giving the two of us quiet time to chat - precious time!!

We are so thankful for all of the work and money that goes into this Christmas Light display.  It really is such a joy for our family every year.  This year was no exception!

15 December 2012

Look for the helpers.

“When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping.” - Fred Rogers

This was one of the most powerful quotes I saw while scrolling Facebook today.  It was a response of a friend to today's Sandy Hook Elementary School shooting.

I didn't see much of the coverage live today since the little boys were home.  I purposefully kept the TV off in order to protect Oliver from hearing anything about it.

But my heart was very heavy today knowing many families experienced one of my greatest fears: sending my child into the world and having them not return.

At a loss for making logical something that will never make sense, I heard my heart try to comfort myself this evening:

Children belong first to God and are here on borrowed time.

I know this today because every day I must remind myself this is true.  Cystic Fibrosis keeps me painfully fully aware of this.  Bennett doesn't belong to me.  He is a gift.  (Oliver is as well.)

But that's why I love what Mister Rogers once said about dealing with 'scary things'...
"Look for the helpers.  You will always find people who are helping."
Gifts often come amidst tragedies.

Just recently, in our own life, the generosity and love we received when Bennett was in the hospital was very touching to us.  The day of surgery, my phone "blew up" with text after text after text from friends (even friends of friends) who sent well wishes and words of encouragement.  Friends sent emails and took time to leave voicemails.  Our friend Dana came and sat with us during Bennett's surgery.  And our friends, the Fleners (whom we haven't seen in several years as they now live in Colorado) even "brought us dinner" - an emailed gift certificate to our favorite restaurant.

Yes, even in times of loss or mourning I can "look for the helpers."
God is always present and working.  He is our helper. 
Hebrews 16:3

06 December 2012

Christmas Tradition: "Happy Christmas"

This season, we introduced a new Christmas tradition to the boys, Operation Christmas Child.  

I love the idea of teaching our children about giving to others, especially in a season so often focused, especially for children, on getting.  When the boys are older, I'd love for our family to "adopt" another family at Christmas and bless the entire family with gifts and a Christmas meal.  But, at this point, the boys need smaller, more hands-on ways they can give, which is why I think Operation Christmas Child is a fabulous opportunity.
The idea is simple: fill a shoe box with toys, school supplies, toiletries for a needy child across the world to receive at Christmas time. 

Our local Chick-fil-a participates in Operation Christmas Child so we received a free Operation Christmas Child box from Chick-fil-a.

Since I knew the boys would have most fun thinking about a child their age, we chose to fill the box with items for a boy 3-8 years old.

We showed the boys these two videos of what we were about to do (the videos were particularly touching for me - to see children who were thrilled to receive items that, in America, are sometimes thought of as just junk.  What a perspective.):

I tried to really hard to prepare the boys, before we went shopping, of what we were doing.  The videos helped and I tried to tell a story to help them imagine one individual boy we were going to help - a little boy who didn't have toys and who likely lived in a dirt-floor house made of cardboard and tin in a completely different country on the other side of the world.  

This seemed really difficult for the boys to understand (not that I expected Bennett to really get it, but I had hoped Oliver might).  At the store, they either wanted to buy for themselves or their friends...or they were completely disinterested in shopping at all (who can blame them, they are preschoolers).

I realized, it's hard for children, who have very little world experience and who believe all is right with the world, to grasp the idea of the significant needs of others who don't live anywhere near or like him.  So, I asked the boys to help me come up for a name for our Operation Christmas Child.

Bennett offered up that his name could be "Batman" or "Supaman."  Oliver also came up with some crazy non-real names.  After a short bit, I finally said, "ok, listen, whoever can come up with a *real* boys' name gets to name our Child.  Any boy's name - any.  Anybody??"  We were desperate for something at this point.

Oliver thought harder and finally suggested, "How about 'Happy Christmas!?'"

He was dead serious.  He thought that was a wonderful boy's name, Happy, Happy Christmas.

And knowing that our name-choosing game would likely not end soon, I said, "Perfect!  'Happy' it is!"  So, we began shopping for gifts for our new little friend 'Happy Christmas.'

Oliver really seemed to get it at that point.  Whew. :)

We tried to place a variety of items in the box.  I used this fabulous list I found on Pinterest with 101 ideas of things to include.  I think, for next year, I am going to begin collecting things throughout the year.  It's so easy to save McDonald's Happy Meal toys, extra tooth brushes from visits to the Dentist, extra shampoo bottles left over from stays at hotels, toys from goody bags from kids' birthday parties, even left over Halloween candy...all items that can make filling a box very economical.

We chose a good variety of toiletries, school supplies and toys.  The boys helped me dream about what 'Happy' would like to receive in his box.  What kind of toys would he enjoy?  What kind of school supplies would be his favorite?  I enjoyed the process as much as the boys.  It's fun to think about blessing another child.

Oliver did a great job packing everything inside the box.  I think this will be a favorite tradition for him as he grows up.

Before we were done, Oliver and I wrote a letter to "Happy."  I included the boys' picture.

Oliver also drew a picture to include.  Of course, it was of tornadoes.

Afterwards, we prayed for 'Happy' and asked God to take good care of him.

The, we wrapped the box with rubber bands as the directions asked us to.  I went online and paid the $7 it takes to cover mailing the box.  Since I did it online, we were able to receive a barcode that is supposed to track the box as it travels to its country destination.  We hope to hear soon where our box will land.  It look forward to teaching Oliver more about the country it finds itself in.

Until then, we will continue to pray for our Operation Christmas Child and hope that 'Happy' really does have a Happy Christmas this year!

03 December 2012

"I want to kill the way things are."

Of the things I had to consider and think about regarding Bennett's recent hospitalization, one of the things that came into sharp focus for me on Friday was Oliver's role as the brother of the sick child.

Seriously.  What a difficult place to be in.  Your family life resolves around the sick kid, which can feel unfair.  But then, if you start to verbalize your feeling like it's unfair, others can fault your behavior as being selfish and unsympathetic to the sick child.  I imagine, for a well kid, these situations could feel like a lose-lose situation.  You don't really want to be sick...but there is also something pretty disappointing about being the one who is well.

During this last hospitalization, I tried to balance Oliver's need for normalcy and his need to be informed.  The first day, I sent him to school and hoped he would have no real understanding of what was going on with his brother or his mom and dad that day.  But on the second day, after a visit to see his brother, it was clear that sending him to school would have not been the best choice.  It might have felt to him like we were sending him away.  We decided to let him come up to the hospital all day and be with us as a family.

I knew something was "going on" with Oliver when he came up to visit Bennett at the hospital on Thursday.  His behavior just seemed "off."  But it wasn't until Friday afternoon, when I found him curled up underneath the hospital room sink, that I realized what was going on.

He was angry.  Not over the toy I was telling him he couldn't have, but over being here, in the hospital...over his momma not being able to come home to tuck him into bed the night before...over having to be well when it's the sick child who gets all the privileges.

Realizing he needed to talk, I offered him my hand and told him I wanted to show him a new place in the hospital he had never been to.  I asked Brian to watch Bennett for a short while so I could go spend time with Oliver.

I took Oliver out to Scott and White's healing garden area.  It's basically an outdoor area for patients and their families.  I let Oliver play around, looking at the fountain and playing with the wind chimes.  I knew he would love the experience.

But on our way, I began talking to him, his hand in mine.  I said, "Oliver, I know you're really upset right now that you can't play in the hospital play room because Bennett has CF or play in the hallway with the Plasma Cars because Bennett doesn't feel up to it yet.  I know you're disappointed that we are about to be discharged and go home so you don't get to do anymore fun things at the hospital for a while. This must feel very frustrating to you, to be the well child. "

Oliver sort of laughed.  I could tell that I was verbalizing feelings he felt but could not articulate.

I said, "On the one hand, it's good to be the well child.  You aren't sick, so you feel really good and enjoy playing with your toys.  Bennett, being the sick child, doesn't feel good right now so he doesn't even want to play with his toys.

It's very good to be the well child.  You don't have to get shots or have blood drawn.  You can come or leave the hospital whenever you want.  But, Bennett, being the sick child, has to have an IV in his hand and can't leave the hospital until the doctors tell him he can go home.

There are some real benefits to being the well your getting to come downstairs with me to investigate this new healing garden while Bennett must stay up in his bed.

But, there are also some real disadvantages of being the well child..."

I could tell Oliver was *really* listening to this part.

I said, "If you're the well kid, then you're always just visiting the hospital.  So, these toys and activities are never really for you.  You can play with them when you come up with your brother, but ultimately, they are not for you.  The people here are nice and will talk to you if you ask them a question.  But they are not here to talk to you.  That must feel very frustrating.  "

I wasn't sure if Oliver wanted me to continue so I allowed myself to get distracted.

Oliver noticed this and said, "Mom, can you tell me more about being the well kid?"

I was glad to hear him indicate what I was saying really mattered to him.  I went on to describe differences between he and Bennett regarding the benefits and disadvantages of being the sick or well child.  I really wanted to help him see I did understand how frustrating it must be to be in his situation.

Our conversation seemed to carry on later between he and Brian.

On the way home from the hospital, Oliver rode with Brian and Bennett rode with me.  When we met at home for dinner, I learned that Brian and Oliver had had a really good conversation.

Apparently Oliver was very angry in the car that he didn't get to ride the Plasma cars in the hallway like the nurse had told him he and Bennett could do.  Oliver was very disappointed we had been discharged too soon for them to do it.

Brian explained at the dinner table, "Oliver and I had a good conversation on the way home about how life is not fair.  We talked about how Bennett having CF is not fair.  I explained how sometimes Daddy gets angry that life is not fair and wishes I could change things."

Oliver piped up, "Yeah.  I don't like it.  I want to kill the way things are."

I was taken back by how articulate Oliver was, for a 5 year old, in expressing his desire to end what was going on in his world over the last few days.

This was the first time I had ever heard Oliver express he was upset about Bennett's CF and how his CF affected him.

I asked Oliver what he could do when he was disappointed that life iss unfair.  I offered for Brian to tell what he does.  Brian said, "sometimes, when I am angry that life isn't fair, I tell God."

Oliver took a bite of his sandwich and said, "so, what does He say (as though God simply answers back)?"

These are the moments when I'm glad I'm married to a theologian.  Without missing a beat, Brian said, "well, sometimes God says that he knows.  But he doesn't do anything about it.  Sometimes, God says he knows but he thinks it's good for us."  Brian went on to describe how we can feel like it's unfair when it hurts to get a shot - but how the shot is actually good for us, even if it feels unfair.

Oliver liked that.

I explained that when I feel life is unfair, I sometimes cry.  And in that moment, I felt the tears well up.  I clearly was feeling a sense of injustice too.

I explained that when we feel life is unfair, we can tell a friend, who can tell us they are sorry for us.  I expressed how hugs from a friend can be like hugs from God.

Oliver really liked our conversation.  He didn't say much more and within a few minutes, dinner was over and the boys were distractedly playing tornadoes and superheros in the living room.

But this conversation has lingered for me.  It was interesting to see my 5 year old struggle with such a difficult life lesson over the last few days.  It wasn't just his learning that life isn't fair...but also that Bennett's CF isn't fair....and neither is his being well, while brother is sick, fair.

The reality is, I have my own unfairness I am struggling with deeper within myself.  It's unfair to see my child suffer.  It's unfair to have him undergo such invasive procedures only to have him face a lifetime of continued physical deterioration.  It's unfair to see my other son experience scary moments of believing his little brother is going to die.

To be honest, I'd like "to kill the way things are"'s just that I'm a bit better at hiding my feelings than my five year old.