This post has been generously shared with us by Breck, CF mom and author of In It for Bennett: Our Journey with Cystic Fibrosis. Originally published on September 12, 2018.
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 a lot, 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 are met
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 Folia Health, 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!