27 June 2013

My first blog post ever.

This is my first blog post ever, exactly 8 years ago today, on June 27, 2004 on the website Xanga. 

I found it several months ago printed and saved in an old binder that I put together years ago as I deleted emails and moved my personal blogs from the Xanga website to Blogger.  When I recently found it, I thought it was so very funny to go back and read my very first blog post.  This was before blogs became really mainstream.  Of course, this blog, Bennett's blog, began just shy of four years ago when he was born.  But I have been blogging for quite some time in different capacities.  

Please forgive me for the silliness of putting this online but it just cracks me up.  (btw, just so you know, I looked it up, a 'weblog' is apparently what we *used* to call these things before they were shortened to the term we now use regularly, called 'blogs'.)

June 27, 2004

This is the new craze.  And I'm hooked.  I'm not really sure why.  Brian thinks it's kinda silly and doesn't see the point.  But, for whatever reason I'm fascinated by weblogs and decided to join in with my friends.

It kept creeping closer...more and more of my friends have been getting their own weblog.  And then my best friend Lane did it.  And I was like, "OKAY! THAT'S IT! I'M DOING IT TOO!"

So, here I am. :)

Everybody's doing it.  And yet, I feel some kind of need to explain why I would want a weblog and why on earth I think people would actually read my weblog.

For me, this weblog is a place where I can write my random thoughts (...when I have random thoughts to write).  I won't write because I think people are coming to see what I write (I won't bother puffing myself up to believe anybody cares *that* much about what I have to say on life! Ha!)   As matter of fact, I've disabled the comments/eProps thing because my point isn't hearing feedback.  So, if you want to write me, just email me.)  But I want to write to just share what's on my heart and if you want to drop in, that's cool.

Once, when trying to convince Brian that weblogs are cool and that he's totally not "in" if he doesn't think so, he mentioned to me how much weblogs are really like prayer.

Weblogs are a place to share your heart and feel like you've been "heard".   He said, "it's the same thing as prayer: telling God your heart and knowing someone has heard you."

So, maybe this is how I pray, as well.

Nonetheless, you won't find my deepest darkest secrets here.  If you do, they will be encrypted so you'll never know it.  I won't write about anything that I wouldn't tell you in person if you ask.

However, it is here where you can listen to me share my heart and ride along with me as I seek to understand who I am really meant to be.

23 June 2013

When Caves and CF don't mix.

This morning, I had a conversation with Oliver - a conversation that probably felt to the five-year-old as nothing more than Mom figuring out logistics for his long-awaited trip to a local cave.

But, for me, as a mother, it was something deeper, a moment with a purpose, a moment when God seemed particularly near.  I knew even before I began the conversation that it was an opportunity to prepare Oliver's heart (as well as my own) for many more conversations to come - about the loss the disease Cystic Fibrosis brings to Bennett and ultimately to our family.

For several months now, Oliver has been looking forward to getting to visit the inside of a real cave. So, for weeks, our family has been planning a day trip to visit the Interspace Caverns in Austin.

I can't fully articulate how excited Oliver is about getting to go see a cave.  He has been counting down the days and discussing each day his anticipating of getting to see "all the the rocks and crystals."  (He is in love with the idea that average looking rocks hold within them beauty and value.)  It has been fun to see how much Oliver lights up when he talks about his upcoming adventure to a cave and "the Rock store."

So, it was with great disappointment when Brian and I realized a few days ago that visiting a cave might actually not be in the best interest of Bennett (who is equally excited about visiting a cave as his big brother has made the anticipation of such a thing seem beyond amazing).

Unfortunately, caves, like many dark wet places, are known to trap airborne fungi in them and can be home to bats who also risk of giving off airborne respiratory viruses through their poop droppings.

This is not something we are necessarily worried about for ourselves or for Oliver.  But it really worries us about exposing Bennett's vulnerable Cystic Fibrosis lungs to viruses or fungi that could get him very sick and potentially colonize in his lungs.  We work too hard to keep him well to want to compromise all that work for a short trip in a closed space that could expose him to hazardous airborne bacteria.

So, last night, Brian and I made the decision that Bennett cannot go with us on this trip to the cave.

It was this morning that I decided to sit down and talk to Oliver about it:

"Oliver, can I talk with you for a few minutes?"
Oliver, climbing up on my bed and very curious about the tone of my voice, said, "Sure, Mom."

I began our conversation talking about Oliver's Papa (Brian's dad) who has lost the ability to walk due to a benign tumor in his spinal cord.

"You know how Papa's legs don't work right?  You know how Papa has a special chair that allows him to go with us most of the time, because it helps him even though his legs don't work right?  But do you also know how there are some times and some places that Papa can't go with us because a chair doesn't work (such as go up stairs or climb inside outdoor playground equipment)?"
Oliver nodded.

I continued, "Well, just like we sometimes chose to not do something because Papa's legs don't work and we don't want to leave him out or hurt his feelings, sometimes we have to do that with Bennett, too.  Because Bennett's lungs don't work right.  Does that make sense?"
Oliver indicated it did and he continued to listen.

I began to explain how awesome the cave is but how it also poses a risk of infection for people whose lungs don't work right and are vulnerable to getting sick.  I explained that mommy and daddy had decided that in order to keep Bennett safe and his lungs healthy, we didn't feel like it would be best for him to go to the cave.  I could see Oliver's brain absorbing all that I was saying.

I explained that this information would be very sad for Bennett because he, too, wants to go to the cave.  But I shared with Oliver that Mommy and Daddy wanted to talk to him about it before talking to Bennett because we thought Oliver might be able to help us figure out a way to still make our trip work.

I basically presented the conversation in a way that made Oliver feel a part of the decision-making process and encouraged him to evaluate how the trip would likely change knowing Bennett couldn't go.  The last thing I wanted was for Oliver to be, in any way, under the impression that Bennett just wasn't going to get the privilege of going.  Instead, I wanted Oliver to understand the difficulty of such a decision and understand the emotions Bennett might have upon hearing this news.

I asked Oliver for his suggestions of how we could still let him get to enjoy the cave but could also keep Bennett safe.  Oliver came up with the bright suggestion that maybe one of his grandparents could come and watch/play with Bennett while the three of us (Mom, Dad and Oliver) could go to the cave.  I valued his suggestion but explained our grandparents are too far away that that wouldn't work for our upcoming trip.

Oliver then suggested that I stay with Bennett and Daddy could take him to the cave.  This was the exact solution Brian and I had come up with but it was wonderful to see Oliver feel like it was his idea.

Jumping off of his workable solution, I explained that maybe Mommy and Bennett could travel down to Austin with Oliver and Daddy and do everything except the cave and maybe find something special for Bennett to do during that time.

I asked Oliver what he thought Bennett might feel since he won't be getting to go in the cave.  Oliver immediately identified Bennett would likely feel sad.  But, he offered to make sure to gather "lots of rocks and crystals from the outside of the cave" to give to Bennett so Bennett might feel a bit better.

I loved seeing the empathy Oliver had for his little brother.  Although this was going to be a highlight of his summer, he could still value the loss that Bennett might feel when he learns he cannot be a part of this experience.

As I ended our conversation, I could sense tears welling up in me.  I had to just explain to big brother how little brother's sickness was going to change our much anticipated family adventure.  And I watched as big brother wrestled with knowing his little brother was going to miss out.

I could tell Oliver also didn't feel settled either, so I checked in with him,
"Oliver, how does your heart feel, after having to have this conversation?"

Oliver looked me in the eye and said,
"part of my heart feels happy. And part of my heart feels sad."

Choking the tears back, I nodded and said, "that's exactly how my heart feels too, Oliver."

I thanked Oliver for sitting down and talking with me.  We kissed and off he went to play.

But my heart had a harder time letting go.

I realized shortly after our conversation how valuable moments like these are...discussions of really big things in the midst of discussions of very little things.  One day, Brian and I may very well have to sit with Oliver and talk about how Bennett's health is failing or about other losses that Cystic Fibrosis may bring to our family (such as not being able to use hot tubs, get near people who are sick or potentially missing family vacation because Bennett has been admitted to the hospital).

As Bennett gets older, he will also join us for these discussions - moments of grief intertwined with verbal confirmation that we are family and so we choose to do things (or not do things) based on each family member's needs and limitations.

On one level I think Oliver won't likely remember much about this morning's conversation.  But, one another level, I think Oliver will likely associate this trip with his beginning to understand that Cystic Fibrosis is not just a disease that affects his brother's lungs but a disease that affects all of our lives.

I can't keep CF from ruining our plans or from keeping Bennett from getting to interact with certain aspects of life.  But my hope is that Cystic Fibrosis will benefit us all - that even right now, at 5 years old, CF will create in Oliver (and later in Bennett) a sense of compassion for those who are different from ourselves (such as those who have limitations) and that through coping with this disease we will each gain a greater understanding about what it means to be truly fortunate.

Cystic Fibrosis might change our family plans from time to time.  But maybe, if we look more deeply, we can realize we're the lucky ones.

Cystic Fibrosis is a constant reminder to Brian and myself, to Oliver and to Bennett, that our lives are not mean to be lived for ourselves but, instead, to be lived for others.

Maybe it's not going to the cave that is going to be special to Oliver.  Maybe, instead, what will be special to him will be the delight of enjoying a cave while dreaming up unique ways include his brother while he's in there.

11 June 2013

Last Day of School 2012-2013

I love comparing pictures of the boys as they grow.  These are pictures from the first day of school in August 2012 and pictures of the last day of school in May 2013.  Both boys are maturing so much!

Bennett's First and Last Day of Preschool in the 2's Class

Oliver's First and Last Day of Pre-Kindergarten

First and Last Day of School 2012-2013
(Forgive the one eyed smile; Bennett's blue eyes are super sensitive to the sun so he was doing everything he could to keep them open.)

My babies with their backpacks

August 2012 - Sweet Brothers ready to start school!

May 2013 - Big boys excited about summer!

09 June 2013

Whew. That's a long break, eh?

Geesh, it's been a while since I've posted.  It's unlike me, which is why I often get calls and emails from friends asking if I'm doing ok when my blog goes silent.  :)

The good news is the main reason the blog is quiet is because I'm being a real life mom, with real life mom problems and real life mom joys.  The reality is I have a ton to blog about.  I am now 7.5 weeks from Baby Gamel's due date and we are trying to prepare her nursery and get everything we need.  Bennett is still potty-training but getting closer and closer each day.  The boys just finished up their school year, which means Oliver is now a rising Kindergartner.  And I am busy finishing up residual work regarding Bennett's Brigade (such as thanking people who have yet to be thanked - if you are one of those, thank you SO much for being patient with this pregnant lady!!).

Bennett's Cystic Fibrosis has continued to stay in control.  We are really really praying that he can make it to his 4th birthday with no real lung infections.  This would be *such* a gift to have 4 years of good lung health.  We know Bennett's lungs are slowly being damaged over time due to his disease.  But, it would be amazing to know he went four full years without any additional infections increasing the damage of this progressive disease.  We still have 3 more months but I am so praying we can make it until then and hopefully a year beyond that!

My pregnancy is going really well.  We have finally named our baby girl but we are planning to hold it as a surprise for when she is born.  Since this baby is our "grand finale" of our family, Brian and my last time to experience the birth of one of our children together, we thought it might be a lot of fun to reveal the baby's name once she is here.  Now, I know I'm a bit of a hypocrite.  I have always hated when my friends do this to me (I find it terribly hard to wait for surprises) but it actually made waiting for my best friend's recent birth of her baby to be born pretty exciting so I thought I'd build the suspense among our friends as well.

This picture is from early last month when we had a chance to peek inside the womb and see what our baby girl looks like!

Baby Girl's sweet smile in the womb.

They say girls' communication skills are more advanced than boys, even in infancy.  But I wasn't quite prepared for her to begin communicating quite so early.

The Gamel "monkey toes" - comes from her father's size.  I can't do anything with my toes.  Brian is amazingly crafty with his.  Looks like he's passed his long flexible toes to her.

Baby Girl Gamel has continued to be active in the womb, despite her quiet phase that one day that freaked me out.  I have been so very happy to have her moving very regularly.  Each time, it soothes my heart and reassures me she is ok.  Since this is my third pregnancy, this time, I'm more aware of feeling arms/feet and feeling her head or bum.  It's pretty cool to be able to sense where she is at any given time.  She seems to prefer laying sideways in my belly (feet kicking in either of my sides), rather than head down these days.  So, I'm praying she will "get in position" once it's time so I don't have to experience my first C-section with this little one.

Oliver and Bennett are excited for the baby.  Bennett is probably the most connected to the baby.  I actually asked him today if he would put a pair of pink socks for the baby in the top of her drawer.  As soon as he noticed the tiny socks with tiny seersucker ruffles and a tiny pink bow on them, he gasp and said, "oh, so pretty for the baby!"  Brian told me later, when he saw Bennett open the baby's top drawer to put the socks inside, Bennett exclaimed, "her is going to like this!" It cracks me up how sweet and tender he is with regard to her, even when he doesn't know her.  She represents all that is pink and girly and he seems to appreciate there is something downright special about that.  :)

Oliver has become very independent in the last 6 months.  He is incredibly proud of his ability to do things that are truly valuable for our family, whether it's helping his brother, helping to sort socks or giving himself his own bath (washing his hair and all).  I have noticed his little legs and arms are growing longer and his demeanor is more mature.  He is looking more and more like a child on the verge of being a teenager.  He played his first organized sport this year and did a great job.  I feel both really excited he's growing up and disappointed that his independence means each day he will need me less and less.  I suppose that's the challenge of parenting, really - to love your children enough to teach them to need you less and less over time.

Bennett cannot wait until he's four so he can plan t-ball too! :)

My favorite boys on St. Patrick's day.

I will continue to post about what's going on with us.  But if and when things get quiet, I'm gonna blame it on "nesting."  At 32 weeks pregnant, I have an overwhelming desire to go through every drawer and organize everything.  The number of schedules, lists, charts and calendars in my house is insane.  But knowing that our little family of four is about to be invaded by another little person with lots of needs, it's about time I get to finishing the projects I've left undone around the house and I began organizing every space I can.  It's just about to get crazy - in a good-crazy kind of way! :)