"Walk with the dreamers, the believers, the courageous, the cheerful, the planners, the doers, the successful people with their heads in the clouds and their feet on the ground. Let their spirit ignite a fire within you to leave this world better than when you found it"
The other day I found my self daydreaming about what this life would be like if CF weren't a part of it. I was imagining playing after dinner instead of setting up for treatments, or waking up and taking a day trip without time constraints. I imagined making the kids all the same thing for lunch, not spending time pouring vegetable oil onto fruit and trying to mentally calculate how many grams of fat he would be consuming to appropriately distribute enzymes. I imagine what I would do with the time that would become available, previously spent refilling prescriptions, fighting with insurance companies over why we need a certain medication. I imagine counting weeks and months as weeks and months instead of 15 and 30 day on-again off-again antibiotic cycles. Maybe the constant fear and worry and anxiety that I have and try my hardest to suppress would melt away, or maybe I'm confusing the emotions of parenting with the emotions of parenting a child with a chronic medical condition. I really don't think the days that we're experiencing are all that bad, but I was dreaming of better.
I keep myself pretty busy these days and a lot of it centers around Cystic Fibrosis. The C3N work that I'm doing is amazing. I am involved with different groups and committees at the hospital and at the CF Foundation, related to everything from adherence to advocacy. I am a caregiver, so I order meds, administer meds, clean medical devices, manage insurance issues, track symptoms, and the list goes on. However, the list of things that I do that aren't related to CF is longer. CF isn't our life, it's just a part of it.
We are exactly one year out from the first time I approached the CF Foundation about embracing the value of collaborative care - care involving patients and clinicians and researchers all working together to test and improve tools and systems to better manage health and care. Next week, we are going to Bethesda, MD to the headquarters of the CF Foundation to discuss the scope of work that we are about to partner on and I could not be more excited. How did all of this happen? What did I do to get here? Could my dream of collaboration for a cure really be coming true?
I'm often asked what I did to get here, or what I even still do. I talk about it. I talk to everyone I meet and tell everything I know to everyone I know. I gather information and I curate information and I share information. I ask a lot of questions (I mean a LOT of questions). I identify problems in the current system and share opportunities for improvement. I pay my own way to conferences and am forward in suggesting that others pay my way to more. I'm energetic, passionate, and persistent because it is in my nature to be so, but also because I don't have a choice not to be. He is my child and my job is to keep him alive and well, and to guide him in the directions that his life takes him. It is my job to protect him at all costs, so I take the risks that I probably wouldn't otherwise take with the hope that I will find the missing puzzle piece that will cure this disease. One of these ideas will work, and I will keep trying until I find it.
I'm in disbelief that it's all happening, honestly. I heard about it and I asked questions and I shared what I learned and I nudged and nudged some more, and at times I pushed and at others I pulled, but we're getting there and I can't believe it. I go to bed at night sometimes annoyed by my own optimism and excitement. It's a sheer and giddy joy knowing that this is all happening because I had the courage, and the responsibility as the parent of a chronically ill child, to speak up and encourage the re-design of a system that has the potential to save my sons life. I'm no longer imagining that potential because I'm working with other patients and clinicians and researchers and all stakeholders and I'm living this change.
I cannot wait to share about all of the awesome things that will come out of our collaboration with CFF next week when we visit their headquarters in Bethesda!
"Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has." -Margaret Mead