Created to be MORE...Part I

When my folks and I rolled up to the hotel that was going to be our home for the next week, it was a little frustrating staying at a place that was twenty minutes away from the National Institutes of Health, (NIH). 14 visits and we had never stayed outside of the city of Bethesda and out of all these visits our unusual lodging arrangements were happening the week we had to maneuver the NIH campus AND Washington DC. 

But as soon as I walked into the suite that held a large living room, spacious bedroom, and a kitchenette with a breakfast nook, I knew it was a wink from God, giving me a haven for the exhausting and tremendous week that was ahead of me.

I woke up Monday morning,  thankful my first day at the NIH didn't include a commute to DC- I could ease into the craziness. But when I walked into the phlebotomy lab and counted 18 tubes, I started to feel that there would be no easing into this hectic week, but I was hitting it head-on with the speed of a Nascar Driver. Three needle sticks later, to fill those tubes with blood, my week was in full throttle.

People often wonder what the difference is between a regular public accessible hospital and the NIH. Well, let me give you an example. Monday afternoon I had an appointment with ENT and after telling them about the four ear infections I had in the last four months, my doctor determined I needed a PE tube. That procedure would be done on Wednesday- two days later.

Abbie, Julia, and I- I promise we didn't plan to color coordinate for a photo op- just a little God-Wink, ;)

With a physical performed by my nurse practitioner and an appointment with my doctor promising she had a plethora of information to share with me at the end of my visit, the foreshadowing of the two worlds I would be immersed in proved to be exciting...and exhausting.

Tuesday was the day of my meeting with Representative Brad Wenstrup. The first of my three meetings in DC. The excitement of the possibilities and the nervousness of the unknown provided me with the adrenaline I needed to get through a tiring day. After a quick stop to get blood drawn at the NIH, my parents and I caught an Uber, my parent's first Uber experience and my mom's first trip to our nation's capital.

A disguised photo op in front of the LongWorth Building to take a deep breath and remind myself, "I know I can, I know I can, I know I can!"

After the hour drive to DC, we arrived at the Longworth Building where Rep. Wenstrup was spending his day on his committee, "Ways and Means," voting on legislation. His scheduler, Abbie met us in the lobby and even though I knew where she was leading us, my anticipation grew with each step. The minute the doors opened and I stepped onto the congressional floor, I felt the reverence and importance the room held. With every "Nay," and "Yay," I witnessed a process I had learned about in Government Class.

When Rep. Wenstrup came to a bill he wasn't scheduled to vote on, my parents and I were taken to a beautiful library attached to the congressional voting floor. When I saw he had the 16 pages of notes I had sent him and his staff prior to my meeting in hand with sections highlighted, I knew the meeting held great promise. For the next 25 minutes, I shared with the Representative my concerns and experiences of navigating a broken system I was stuck in with no clear path to venture out into the workforce. Sadly, many Americans with chronic illnesses experience this same suppression, so this issue was neither conservative or liberal, but bi-partisan- something very rare in this nation today. 

Representative Wenstrup and I after a positive and encouraging conversation about the path to "MORE."

I explained to him the message people with chronic illnesses hear is that we're only good enough to merely exist, but we were created to do so much MORE than just exist. The Representative's response to my deep conviction was, "Wow, I love how you worded that," as he wrote the phrase down, "I want to use it." This recognition and affirmation made my heart soar. 

Eventually, Rep. Wenstrup was needed on the floor to continue voting and my heart sunk- I had so much I still wanted to say and share. My disappointment quickly changed to appreciation when Rep. Wenstrup asked his top aid, Julia to remain and continue the meeting. For the next hour and a half, I shared every single concern I wanted to discuss and a possible path and plan for benefit recipients to venture out into the workforce. The path and the plan I proposed, may not have been or be the right answer, but it was the beginning of conversations to what the answer could be. 

I wanted to be a voice. I wanted to be heard. And with plans, to continue these conversations with Rep. Wenstrup and his staff, I left that meeting not only achieving those two things but the hope that change was possible had bloomed.