System Failure

In the world of cystic fibrosis, the older you get, the more meds they add to your list of things to do.  The body gets sicker, the list of medicines and treatments grows.

Until recently, I really struggled with getting in all the things I have to do to keep Bennett healthy on a daily basis.  For example, Bennett takes 8 medicines three different ways, all by 8am.  It didn't help that that my husband's job demanded that he be gone alot, so it was just me a lot of the time.

I felt so frustrated at myself.  It's easy, as a CF mom, to get signals that somehow, by failing at the incredibly burdensome treatment regimen, I was failing, not just my son but as a mom.  If mom guilt is bad, I'd argue CF mom guilt is even worse.

In general, I work really hard to give myself grace and recognize I'm only doing what I can.  But who wants to hit the bar lower than ideal when your kid's life depends on it?


Several months ago, feeling the pressure that I wasn't doing everything Bennett needed, I said to one of Bennett's CF docs, "Tube feeds ARE a priority. I just have 40 other things that are a priority before that."

I remember thinking right after I said that: Do I *really* have 40 priorities more important that feeding Bennett?!

Then, all of the sudden, a small but very honest voice inside me responded to myself's question with a huge litany of fears and concerns - some I didn't even know existed.

I tried to write them all down.  Here's what I came up with as "top priorities that come before feeding my son his g-tube feeds":
* making sure Bennett doesn't vomit
* making sure Bennett doesn't get C.Diff again
* making sure Bennett gets exercise so his lungs don't get sick
* making sure Bennett doesn't stop eating by mouth
* making sure Bennett doesn't get acid reflux
* making sure Bennett's emotional needs are being met
* making sure my other children's emotional and physical needs are met
* making sure my own emotional and physical needs
* making sure we have insurance coverage for the formula
* making sure we have feeding bags
* making sure we have feeding bag extensions
* making sure the feeding pump battery is charged
* making sure I know where the feeding pump backpack is
* making sure we have enzymes or Reliazorb at home for his tube feeds
* making sure I don't give a tube feed before a Vest treatment
* making sure I put the Liquidgen in with the tube feeds
* making sure I don't freeze the Liquidgen on the top shelf of the refrigerator
* making sure I don't leave the Liquidgen out on the counter to spoil
* making sure I throw the Liquidgen away after it expires in 14 days
* making sure we can slow our family schedule down so we can give tube feeds

That's only 20 "priorities" but, I guarantee if I sit here long enough, I could list 20 more...

My point is that failing to be proficient with the CF treatment regimen is never as simple as "I don't want to care for my son" or "I don't know the importance caring for my son."  The challenge of doing what the doctors want me to do comes down to organization, time and addressing a list of bigger priorities that is a mile long (some, I don't always even consciously know).

Getting all of the things done that people with CF have to do isn't as easy as just checking them off a list.

It's not about willpower.  It's about barriers.

Emotional barriers, physical barriers, insurance barriers, etc.

And something I've recently come to more fully appreciate, it's about system barriers.

Success at home with the CF treatment regimen requires success with aligning the systems we live in.

This is why I have gained much greater success with the treatment regimen lately (I'm now up to being able to give Bennett 3 tube feeds consistently daily).  But it's taken a tremendous amount of oversight, self-reflection and effort.  It's also taken a good deal of money and required I change our physical surroundings.

I think we're set up from here to move forward more easily.  But, I can't help but think about so many of our CF family friends who don't have the time, money or ability to master their entire environment to improve how they take care of CF at home.

For a very long time, it may looked like, on paper, that I hadn't been working diligently to give Bennett tube feeds daily.  Until recently, I was able to get in less than 10% of Bennett's tube feedings (1-2 feeds per week).

Every time I would come to clinic, I would cringe.  At times, I felt scolded and shamed.  It wasn't that my CF team wanted me to feel that way.  The reality is they feel the same pressure as I do - to not hit the bar lower than ideal when Bennett's life depends on it.

But, having said that, there have also been times when I didn't feel my efforts were as fully appreciated - how diligently I was working towards improving that 10%, even as that number wasn't changing.

It's because I was working incredibly hard to change, not the number/behavior, but the system.  For me, what's the point in getting in 100% of tube feeds consistently for 2 months and then burning out completely?  I want 100% for the long term.

CF is a time-bomb.  Time is of the essence.  But CF is a also marathon, not a sprint. I wanted to find a way to take care of Bennett at a pace that works for him, for me and for our family - and in a way that we can continue to support over time. 

As humans, we live in a variety of systems. It's easy to tell myself that I have full control over my life.  But the reality is I live and work in a series of systems that create pressures on me to behave in certain ways.

I have come to realize that recognizing that these systems exist helps me to appreciate why I can totally believe in the value of something and fully want to do it but still struggle to get it done.  It also helps me understand how I can better align what I want with what can do.

For simplicity sake, I love thinking about the 4 primary systems we live in: the micro-system, the meso-system, the exo-system and the macro level system.


The micro-system (individual) is the system I have the most control over - where I place my hair brush, which color I prefer, my choice of hobbies, etc.  This is the place were I made the decision I *want* to give Bennett tube feeds.

The meso-system (social environment) is the system in which my family and friends exist.  This is where, for example, the pressures of my children's needs and my husband's desires exists.  This is the system that I was struggling with when it came to Bennett's tube feeds.

The exo-system (physical environment) is the name that describes the system where pressures are placed on me by my husband's job, my children's school, my co-workers, our church, etc.  This is also where I struggled for a long time to align Bennett's tube feeds.

The macro-level system (community environment) describes the limitations and opportunities that come from my location of where I live and my larger community.

When I want to change something about Bennett's care, I have to evaluate what is and isn't working in a system.  And I have to prioritize the particular system's need for balance.

When I couldn't figure out Bennett's tube feeds, I recognized that it wasn't that I could make a change to my micro-system (I *wanted* to give Bennett tube feeds).  The change that had to happen was within our meso-system (the system of our family) and our exo-system (our home).

It took Brian and me more than a year to make these changes, changes propelled by more than just the need to give Bennett his tube feeds, but most definitely by our need to take the best care of Bennett's health.

We realigned our meso-system.  We withdrew the boys from school and began homeschooling last year to slow down our family life and give us more control over our schedule.  I spent time working with each of the children to be more independent in their self-care and in Bennett's care.

We realigned our exo-system. We purchased a new home, specifically with Bennett's CF care in mind.  (I cannot even express what I huge difference this has made!)  Now I can keep more supplies on hand, have them readily available and identify when I need to restock.  A new home layout also allows Bennett to have more space to do his treatments where it feels functional and less in our face or as a mess on the counter.

Even though my micro-system was fully on board with giving Bennett tube feeds, I made changes there too.  I started using FolioHealth, a new pilot tracking platform which helps me accurately track how successful I am being with the treatment regimen and identify patterns that prevent me from getting it all done.  (Another game changer!!!)

And I designated someone in my life who checks in with me regularly about Bennett's care to help me recognize when Bennett's CF regimen is too much for me to handle emotionally and encourages me to find a way to get a break.

Change cannot be made in a vacuum.  We live in the midst of complex systems.  When CF families like mine are asked to do "one more thing", it must mean that everything else must move to make room for that one thing.  Considering we are asked to do "one more thing" several times at every quarterly appointment, that means we are trying to make room for up to (or even more than) a dozen new things per year.

I am tempted to feel like a failure when I can't do that.  But I have to remember that it's not me that's a failure, it's the failure of a system.  I just have to change my system somehow.

It might not have looked on paper for a long time that I cared about improving Bennett's nutritional health but the very opposite is true.  Now that we've got our working systems in place, hopefully the paper will accurately reflect all our hard work!

First Day of School 2018

Today was a momentous day in the Gamel household, the start of our newest adventure as a family.  It was the first day back to school - at a brand new school - for Oliver and Bennett.  (Avonlea had her first day back to school at her school a few weeks ago.)


We are all so grateful for such a wonderful year homeschooling last year.  A year of homeschooling was like water to all of our souls.  We were able to rest.  We were able to gain back family time.  And the boys were able to gain back self-confidence after having had challenges the year before with both cystic fibrosis and dyslexia.

A year and a half ago, I struggled to figure out what the best school option for the boys would be moving forward after a difficult year.  Should I homeschool?  Might another school in our area be able to better meet the boy's needs and the unique needs of our family?  I contemplated opening my own school after discovering a fantastic school model in Austin called "Acton Academy" that I would have loved to replicate in Waco.  I was even awarded a grant last fall and attended a 3-day think tank in New Orleans with 4.0 Schools for people around the US who want to start their own schools.  But, alas, I struggled to feel settled that I could run a school, take care of 3 young kiddos and deal with Bennett's ever-unpredictable cystic fibrosis.

Ultimately, our family chose to homeschool last year and we were very happy with that decision.  The only downside was that my boys, having been used to attending school daily, missed learning within a community of their peers.  Homeschooling was so good in so many ways.  But, since we didn't join a co-op our first homeschooling year, we found it could also be lonely.

Having experienced the beauty and flexibility of homeschool but also the community and connection of traditional school, Brian and I wished there was another option - something in between homeschool and traditional school.  This is where that little school in Austin called "Acton Academy" looked so interesting to me.

Well, low and behold, this summer, I heard from a friend that there was someone in Waco who was creating a school called "Acton Academy."  I couldn't believe it.  I called up that someone, who now is a friend of mine, and shared our story.  It was then that I knew, our boys would be 2 of the 22 founding students of the school now officially called "Acton Academy Waco."

Oliver, First Day of 5th Grade

Oliver, 10 years old

Bennett, First Day of 3rd Grade

Bennett, 8 years old
The boys were very excited to go to school this morning.  This new school seems like a great match for what they need.  It's a school that is focused on helping each child discover their abilities and talents, in addition to mastering their academics.  CF brings Bennett a lot of challenges but also brings him a lot of gifts.  Dyslexia does this for both boys, as well.  I look forward to seeing how Acton Academy will help the boys discover, in a self-directed way, how to use their strengths as leverage over their weaknesses.  



Some things I love about Acton are that it offers a mixed-age classroom, gives no homework (yes! let them play!), focuses on building character, uses socratic discussions, uniquely integrates technology, offers alot of freedom to the students and is overall very intentional.

I don't believe there is one school or one school model for all children.  Just as children are different, so are their needs for different school models and communities.  Brian and I consider it a great privilege to have a choice in the way we educate our children.  We realize so many families never get that opportunity.  Brian and I are evaluating each child and each school year as we go.  I'll homeschool in a heartbeat again in the future if any of my children need me to.  But, I'm also just as happy to kiss them goodbye and wish them a really great day at school.  



Of course, I can't fail to mention that there's another little Gamel experiencing a new adventure this year.  Avonlea started Kindergarten three weeks ago.  It's hard to believe our sweet baby is a kindergartner.  But it makes it easier when we see how much she loves it!