We would like to think that all the bureaucratic red tape, and ethical guidelines mandated by hospitals can protect the hearts of patients and staff from the pain of the process, but true human connection always finds a way around it.
Stepping into the infusion oncology Center for the first time, despite already having gone through the same IV procedure at several other hospitals, I was still plenty nervous. After all, you had never seen or heard of a person with MPS before, and the IV therapy had only been taught to you a week prior. But from that day forward, our lives have never been the same again.
This is a thank you for all those times you watched me pull into the parking lot, every week like clockwork, even witnessing that time I backed in too quickly and bounced off of the parking structure wall. And for calling every time I just didn't feel like showing up even though I should be there.
This is a thank you for being a part of my proudest moments like being one of the first kids in my family to graduate from college, and through my most devastating moments when my relationship with my fiancée fell apart. For throwing all of those holiday and birthday parties for me, and for all the gifts he didn't have to give throughout the years.
I thank you for being there as my disease has progressively taken over my life. For standing by me when I finally lost the use of my legs and could no longer walk. For taking time off to show up to the ER when I suffered acute respiratory failure. For protecting me, and my family as we trudged through the murky water of hospice care. For not giving up on me, despite what other doctors were saying.
Even though we know that MPS may eventually take my life sooner than most, and we are fighting together to make that date further and further out. I and my family will always remember what you have done for me, and you will always be considered family, no matter what bureaucracy has to say about it.
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