If you don’t like my content you have to recognize the clever blog titles I can come up with, I think they are quite fantastic. 😉 This post is about my visit yesterday to the Iowa State Capitol to talk about the Iowa Donor Network (IDN) and tell our story.
I had an amazing opportunity to visit the Iowa State Capitol in downtown DesMoines today and share our story with Iowa State senators and representatives. The day started at 10AM when employees of IDN and about 5 other volunteers gathered to review the agenda for the day. When Paul from IDN introduced me to the group in the room where we gathered he said something like this…”And I’m sure you all remember Alyssa from when she spoke at our employee meeting a few months ago.” That introdution made me realize that our story had already made an impact on others and for that I was honored and humbled.
The Capitol is amzing with the marble and the paintings everywhere that it is kind of overwhelming. After a few hours I was able to not be so overwhelmed and instead enjoy it as the surroundings.
I was first able to “send a note” to my senator Brad Zaun. At first when our guide for the day told us that we would send in notes to the senators and representatives I thought it was a joke. It sounded so “middle schoolish” but it turns out that is exactly what you do. You put the person you want to speak too…their seat number…your name…a short message if you choose and then put a check mark if you are outside the door or somewhere else to meet them on a piece of paper and give it to the person at the door of the room in which they are part of. Senator Zaun was available and came out to hear what I had to say. I was so scared because now I actually had to talk and tell my story. I wasn’t able to get through my short blurb on our story without crying but I did tell our story and all politics aside I really feel and hope sharing our story will help in some way.
After that experience I really wondered if I was cut out to handle the rest of the day but in the interest of curiousity and the fact that walking to the Capitol from where I parked my car was freezing cold, I opted to stay in the Capitol and stay warm for a little more of the day. And I’m glad I did.
The rest of the day consisted of meeting in two different lobbyist rooms where our guide was able to get 4 different senators to sit with us as a group and hear our stories. At the end of the day I wasn’t sure if it was exhaustion from telling our story or from hearing the others stories. I was surrounded by so many brave people and was filled with so much perspective and strength it was mind blowing.
I won’t do their stories justice but here is a synopsis of those that were with me to speak for IDN:
A 42 year old woman was joined by her mother and spoke of her transplant. She was a double lung and heart receipiant. Yep…just 14 months prior to yesterday she received 2 lungs and a heart from a single donor. She was born with a heart problem that eventually affected her lungs. After her transplant she was unable to walk and yet yesterday she walked the stairs of the Capitol with the rest of us. She had been on the transplant list for 8 years and the 2 months prior to her transplant was put into ICU because she was so much in need of the transplant. She is lucky to be alive.
A 30 something woman joined us as a proud momma of a donor. She was pregnant a few years back and into the last trimester found that her little boy had problems producing ambiotic fluid. His kidneys or liver (I can’t remember what) were not functioning. The technical gene structure to cause this is so rare and they knew at that point that his life would be very short. He lived for 45 minutes after birth but I agree with her when she said he accomplished more in the 45 minutes of his life then most of us will ever do. He was able to donate his heart valves. At this point she knows that a 20 month old boy in California was able to use one of her sons valves. As a mom myself I cannot imagine her loss but her strength and resolve that she was the mom of one cool little dude is something I understand and I could not agree with her more.
A man and a woman joined us and I apologize because I cannot remember specifically if they received livers or kidneys but they both became so sick that they were within days of death and the woman actually received her transplant the same day the doctors had told her family if she didn’t receive it she would die that day. The man had been diagnosed with a disease that the only cure was a transplant and would be put on the list when he became “sick enough”. 10 years to the day of his dianosis he was sick enough. His only goal was to watch his son graduate high school and he wanted to live to see that. Because of IDN he has done that and more.
And then there was this woman whose husband received a liver transplant many years back. A few years after his transplant the medications had taken their toll on his kidneys and he needed a kidney transplant. This story makes me cry every time I think of it because it just so happen that his wife was a match and was able to donate a kidney to her husband. She now works for IDN because it was the organization that gave her family back to her.
There are many days I wish I could have donated something to Jay to help save him…to keep him here on this earth. There are days I get mad and I wish it would have been me and not him. He was going to be such an amazing father and he DESERVED to be that to Aaron.
At the end of the day, IDN put together a reception of ice cream and cake for the senators and other staff to join us in the cafeteria. I was able to see Senator Zaun again and to be honest I was a little embarassed because of me crying to him as I told our story. Around 3 I was ready to leave and pick up Aaron and as I was telling people I was leaving I happened upon the IDN’s CEO and another man (I later found out is an IDN board member) and Senator Zaun talking. He was telling them he had talked to someone that was there for them and as I walked up he smiled and said…”It was her.” He remembered me.
Democrat or Republican, I truly believe those Senators we talked to today now understand the need for the Iowa Donor Network. Organ donation affects the young, the old…people in need of hearts and lungs or those that need corneas. I have a new found respect for those behind the scenes in the politics of it all. And politics aside we made an impact today…that I can be sure of and I am truly honored to have been part of it.