Saturday, January 31, 2015

That time I got invited to the White House (part 1)

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? Your playing small does not serve the world. There is nothing enlightened about you shrinking so that other people won't feel insecure around you. We are all meant to shine like children do. We were born to make manifest the glory that is within us. It's not just in some of us, it's in everyone. And as we let our own light shine we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

Almost 5 years ago, on March 14, 2010, our lives forever changed as we welcomed two beautiful babies into our family. We found out just a few days later that Drew had cystic fibrosis, a life shortening genetic disease that does not have a cure. I can't even describe the overwhelming sense of fear that accompanies that diagnosis. 

I remember so vividly jumping into fundraising as we were told that our dollars went right to research to cure this disease, and that the Cystic Fibrosis Foundation was our only hope. We walked in our first Great Strides just days after Drew was released from the NICU. 

He came home with an ileostomy and a list of instructions for how to handle his bowls that were protruding from his abdomen. We macgyver our way through daily ostomy bag changes, becoming better at them than the seasoned nurses who provided regular home care. We were given a pricey special pre-digested formula and a print-out of instructions for how to mix it so that it would be higher calorie and meet his nutritional needs. We were given a nebulizer and other equipment to use with the countless new medications that were prescribed. We had a photocopy of a diagram describing how we should beat on our sons back to dislodge the mucus that was already starting to clog his airways. Our tupperware cabinet quickly turned into our medicine cabinet and our home looked like an assisted living facility. We were measuring stool with a syringe and calculating enzyme dosages on our iPhones. We scrambled as we learned what we needed to do and when we needed to do it. We were completely and totally exhausted, and we were never given time to grieve the loss of the life we had expected. We were not trained for this. Elizabeth Scarboro described it so perfectly in her book "My Foreign Cities: A Memoir" when she said of caregiving, "My field was large and nebulous - I had no idea how to do most of the things in it, and all I could do was try anyway." And try we did. 

As time passed, things got easier. Not in the sense of there being less to do, it simply became more of a routine. We continued to be involved with the Cystic Fibrosis Foundation and I found a new role as the State Advocacy Chair. Initially intimidated by the congresspeople that I would meet with, I quickly realized that they are people just like you and I. I was never politically saavy, but I didn't have to be. When I would meet with them, I thought less about what I wanted them to know and more about how I wanted them to feel when I left our meetings. I wanted the world to be on Team Drew, and I found that sharing our story in all its simple yet oh so complicated glory was helping me and it was helping others. They now had a person that they were thinking about when they were voting on things like whether to support the creation of the National Center for Advancing Translation Sciences, a branch of the National Institute of Health that would accelerate drug development for people like Drew who did not have time to wait. 

The more that I worked at this role, the more I learned. I joined the advisory council at our hospital and I refused to settle for the status quo. I wouldn't accept what I believed was anything less than the full potential of that organization. I had to try, to keep trying, for Drew and for the other patients and families who didn't have the time or the voice or the courage to push these issues like I did. I was very fortunate to be among such amazing people Cincinnati Children's Hospital who were receptive to new people and new ideas, and embraced me as a partner on their team. I served, and continue to serve, as a constant reminder of why they are doing the work that they do and I implored, let patient's help. Team Drew was growing. 

I had a vision of a better way and the more I shared my vision, the more people wanted to hear about it. It seemed such an aspirational goal 3 years ago, to have patients working alongside clinicians and researchers, combining the knowledge they had with the molecular biology and genetics expertise of some of the top researchers in the world. I had data, in my head and in my heart, that helped me to manage Drew's health, and I believed that we could get farther together than any of us could get alone. Then in 2012, at the first North American Cystic Fibrosis Conference that I the opportunity to attend, I heard something that would catapult me forward. The scientists and researchers working so tirelessly to cure this disease felt that the missing puzzle piece was understanding what happened to patients between clinic visits. I thought to myself "I know that! I have that data! I live that every day!". I realized that the cure for cystic fibrosis would come through partnership. The efforts that are made on behalf of patients and families cannot go unappreciated, but alone they are not enough. We need to work together through every stage and every step of the way. 

I've had the great fortune of speaking everywhere from San Francisco to Switzerland and many places in between, advocating for patients and families to be included as partners in everything from clinical trial design to helping clinicians accept the idea that some people with CF may prioritize quality of live over longevity. While the cognitive complexity of adding another medication or therapy to our daily regimen may be small, the burden becomes too much to bear. There is incredible value in a humble awareness of a shared humanity. We are all just people striving to do and be well and I view my role as one to ensure that that is realized and appreciated.

On Tuesday evening, January 27th, I received the following email:
INVITATION: White House Event
The Office of Science and Technology Policy is pleased to invite you to an event at The White House in the morning of Friday, January 30.
DATE: Friday, January 30, 2015
TIME: Morning TBD
LOCATION: The White House
Additional logistics will be made available upon receipt of your RSVP
That was the email in its entirety. I wanted to go, but I had no idea what this was about.  Logistically it would be a tough thing to coordinate in 2 days time. I had just earlier that week sat down to define my mission path, to create some structure for all of the different work that I was doing and help to ensure that the opportunities I would choose to pursue going forward would be ones that fed my soul. I had no idea what this "White House Event" was about, but we decided that I should probably go and find out. 

I used sky miles to book a ticket and invited myself to stay with a friend who lives in town. I would leave here on Thursday night and return on Friday afternoon. That same day, two kids got sick, our only 6 person vehicle broke, and the exhaustion that is a Wednesday night in our world started to set in. I said out loud that I should have just said no. There is always another opportunity and if I didn't make it to this one I was confident that another would follow. I was mad at myself for being "wooed" by the subject line of an email from a sender I didn't even know to an event that I knew nothing about. We got the kids to bed and then everything changed. 

At 8pm on Wednesday, January 28th, I received an email that changed everything. "We are pleased to confirm your attendance at an event On the morning of Friday, January 30 with the President highlighting investments to improve health and treat disease." You guys, THE FREAKING PRESIDENT! Of The United States of America!! My advocacy efforts, in just 5 short years, had taken me from being a scared parent to being invited to attend what I hope will become known as historic event for rare and orphan diseases at the White House with the President of the United Freaking States. !!!!!!. 

The very first thought that I had (and no I'm not kidding) was OMG I have nothing to wear! I hopped in the car and hightailed it to Macys, the closest store to our house, and the only one still open at 9:00 at night. I had less than 24hrs to pull this all together before I would board a plane to Washington, DC, and in our world that 24hrs includes multiple school drop offs and pick ups, swim lessons and gymnastics, story reading and lego building and working, and lets not forget those 3 hours of breathing treatments and airway clearance. I FaceTimed with a dear friend who helped me to pick out the perfect outfit via a virtual fashion show, I packed my bags, and I left for DC. 


  1. Her article is very interesting , and I wait for the newest article article , thanks .