26 October 2016

There aren't answers at NACFC.

I am on a flight to NACFC (the North American Cystic Fibrosis Conference).  Last year was my first year to attend this few thousand+ person international CF conference made up mostly of researchers and health care providers.  As my plane approaches Orlando International Airport, I find myself reflective of how much I have learned and how much I've changed since first attending NACFC last year.  

Last year, I was hopeful that NACFC would provide me answers to the problem of CF.  
This year, I know it will not.  

Last year, I looked forward to what I would gain by meeting with CF doctors.  
This year, I look forward to what I can bring to my meeting with CF doctors.  

Last year, I sat in the audience anxiously looking forward to new initiatives put forth by the CF Foundation.  
This year, I will sit in the audience with anticipation of the new initiative I helped the CF Foundation put forth.

Last year, I attended NACFC as a desperate mother.  
This year, I attend NACFC as a confident partner in my son's care.  

I am attending NACFC this year, not because I believe I'll find answers to my questions, but because I want to be among the thousands of people who are trying to do the same.

I remember being so upset last year when I realized how much doctors & researchers *don't know* about CF.  I was so disappointed to learn how much of CF care is prescribed without clear evidence of it's benefit (this goes for all health care, by the way).  It's hard to hear, at the end of a session, a researcher report how much more research on a specific topic is needed to be done to gain useful conclusions.  

What I had to learn the hard way at NACFC is: CF is a complex disease.  The more we learn, the more we realize what we need to learn.  Ultimately, this is good news because research begets research...and eventually, answers will (and do) come.

But, as a mother desperate for relief of this awful disease now, this is a hard pill to swallow.

I come to NACFC this year with more realistic expectations.  I'm no longer expecting answers.  There aren't answers at NACFC.  There are people at NACFC.

There are really great people at NACFC - people who are focused on finding a cure, people who are focused on healing the lungs, people who are working to improve insurance barriers, people who are develop new ways to identify improvement, people who live with disease and are willing to challenge the status quo.  

Each person is a learned expert.

What I have learned in the last year, particularly in my work with the CF Learning Network and with CF Insight Project...what I come with to NACFC this year that I didn't have last year is the realization: 

It's not the learned experts that have the answers.  They simply have knowledge. It is our working as a team by which we will together discover the answers.

People and families with CF, doctors, researchers - none of us can improve CF care without the other.

This greater understanding of each of our roles in curing CF significantly helps me in my relationship with Bennett's clinical staff.  Recognizing my son's doctors aren't reservoirs of information, or gatekeepers of the answers to CF, nor are they future tellers.  They are just humans - highly educated humans, yes - but humans nonetheless.  They need me.  I need them.  

So, this year, I go to NACFC less desperate and more self-assured, less looking for answers and more looking for connections, less feeling like I'm out of place and more confident I'm in the right place.

I imagine a NACFC that will one day be full of sessions and posters where the speaker/author titles aren't only names followed by "M.D.s" and "Ph.D.s" but names followed by the words, "CF mom", "person with CF" "CF Dad." 

We, the people,

19 October 2016

Bennett's 7th Backwards Birthday

At the end of September, our sweet Bennett turned 7 years old.  To celebrate, Bennett decided to have a "Backwards Birthday Party!"

What exactly is a "backwards birthday party?"  Well, it's a party where everything is backwards!

Guests were greeted at the door with "Goodbye!  Thank you for coming!" Balloons hung upside down and a "Happy Birthday" sign hung backwards on the window.

Of course, the first thing Bennett did at his party was the very last thing typically done at a birthday party: he opened presents...with his feet!

(This was a very special birthday for Bennett since Nana and Papa, Brian's parents from Missouri,  were able to be there for it.)

After presents were opened, everyone ate an upside down cake...

...UNDER the table!

To celebrate, we sang the "Happy Birthday" song...backwards.

After cake, we ate lunch: a cup.  And we drank soda...upside down in a can.

After lunch, we played two games outside: throw the candy INside the pinata...and run a Relay Race backwards.

For the relay, all the guests were divided in to two teams and were told to run backwards as fast as they could.  It was priceless to see their faces when, in the midst of one team's joy of winning, we revealed a twist to any good backwards game: the losers won and the winners lost!

(Another surprise guest, our dearly loved babysitter Peyton, came in from Texas Tech to celebrate Bennett's birthday.)

As a party favor, each boy was given a strip of paper with backwards printed words and each was given a handheld mirror. The boys actually really loved this and thought it was really fun to be able to read backwards using a mirror.

As each child left the party to go home, Bennett made sure to say goodbye with a "Hello!  Welcome to my birthday party!"

Out of privacy for the children who came, I didn't post a picture of the little boys who attended Bennett's party but I did want to mention that, as 7 year olds, they really got in to this the party theme.  I most realized this when I gathered all the squirmy boys on the couch to capture a picture of them for posterity's sake and one of the little boys said, "since this is a backwards party, instead of smiling, I think we should all frown!"  And so they did. :)

Happy birthday to the little boy who truly turned our world upside down!  Bennett, we are incredibly grateful to have had you in our lives for seven full years!  Cheers to many many more!!

12 October 2016

Roly-Poly Mode

Last month, I decided to go into "Roly-Poly Mode."

"Roly-polies" are those little grey multi-legged bugs, found in dirt and under leaves, that demonstrate a fascinating mechanism for protection.  Put pressure on a roly-poly's back while it is moving and this little bug will immediately curl itself into a perfectly round tiny ball: it's most vulnerable parts, it's head and legs, tightly protected inside. 

Feeling overwhelmed by Bennett's upcoming 5th dilation procedure for a intestinal stricture and 7th hospitalization for the year, I decided to close the door, turn off the lights and shut the blinds.  I postponed Bennett's procedure, found my most vulnerable parts and pulled them close.

Recognizing the waves of stress Cystic Fibrosis was causing, compounded by the normal demands of part-time work and motherhood, I decided to find a way to conserve my energy, rather than trying to do it all on increasingly low batteries.  Life, in general, but especially CF, is a marathon, not a sprint.  So, I needed to figure out how to manage all the pressure I was feeling.

I stopped blogging.  I went silent on social media.  I stopped watching the news.  I stopped participating in activities that weren't absolutely necessary.  I temporarily cut back Bennett's CF regimen to include only that which is critical to his health.  I ignored the piles on my desk and emails in my inbox.  I simply began working to block out all the noise.

It's scary to do that - to abandon that which I am convinced I must control.  I wonder if the roly-poly ever feels that way.  When pulled into a ball away from the world, he can't go anywhere or do anything.  It can be a scary place to be.

But I didn't just simply close up, I chose to pull inward.

I pulled towards my kids.  I actively sought out my friendships.  I gravitated towards things that make me feel peaceful: calming music, pumpkin-scented candles, being outdoors.  I made myself watch TV shows that make me laugh.  I picked up a book - and read it.  I went to bed early.  I began choosing foods to eat for no other reason than they made me feel good.  I stopped paying attention to where I was going and started paying attention to where I was.

Just like the roly-poly who is scrunched into itself - his antenna, belly and legs all forced into touching each other - when I cut out the exterior noise and pulled inward, that's where I found myself most.

I refused to put a time-limit on my re-engagement. "Stay here until you feel safe again," I told myself.  I believed the world would understand.  The world did seem to understand, even if nobody noticed anything about me was different.  

The beauty of "roly-poly mode" is that I have found it works.  Just like the roly-poly who eventually feels safe and decides to open back up and carry on its way once again, I am finding myself ready to do the same.

This blog post is the very evidence of my emergence from my roly-poly ball.  I'm re-engaging in the periphery of my life and finding myself interested in hearing noise again.  

Brian and I have begun conversations about when Bennett will have his next procedure.  We still don't know yet when it will be but we have a CF appointment next month so we will decide soon.  For now, Bennett seems content with where we are and we are too.

There's something empowering about being able to shut down and say: no more.  It is by recognizing I can do this that helps me make the choice to open up again.  The roly-poly can get back to its work because it knows that it has the ability to flip into a ball as many times as is necessary to keep him safe.  It's what God has given him to help defend himself from things that might threaten his well-being.  I am recognizing God has given me a similar protective mechanism, as well.

On Monday, I randomly met a man whose job is to coach CEOs who have been given 6 months or less to turn their company around or be fired.  After a few minutes of getting to know one another, I lamented that his job sounded like a particularly challenging job, having to coach people who are facing such despair.  "How do you do it??" I inquired with a sense of admiration.

The man causally said to me "oh, you could be a coach.  Your child has a terminal disease.  You get it.  You know what's important in life.  You know what matters.  Many of the people I work with are 50 years old and never faced a crisis."  He said, "my 29-year old eldest son has Stage 4 cancer.  I've learned very well how to deal with hard things."

I walked away from this brief conversation with a total stranger with a newfound respect for our battle with Cystic Fibrosis. CF is a constant reminder to live in the moment as it teaches me well that today is all we have.  Ironically, though, CF is also the very pressure that reminds me that closing up and shutting down for a time is not only necessary but healthy. 

Maybe I should see my time hunkered down in "roly-poly mode", not as a sign of human weakness, but a sign of human strength.

I think I just learned what I need to be resilient.