Nicklas Nelson - Children's Hospitals Family Advocacy Day 2009

A Day at Capitol Hill

What an exciting and crazy day Thursday was!  Lots of running...lots of waiting.  We had no way to blog as we were all over Capitol Hill and a good wireless signal was essentially non-existent.  Yay for Twitter!

We met our lobbyist, Megan and started the morning with a breakfast meeting in the office of Senator Amy Klobuchar.  We were so fortunate to have almost thirty minutes to speak with her and Nick was able to do a short interview with her on camera. 

Our next meeting was at the office of Congressman Keith Ellison.  He was out of the office but we were able to meet with his legislative assistant, Allison Bowden. It was a great meeting and Nick really had an opportunity to share his concerns.

It was an extremely busy day of voting on the House floor so our schedule of meetings seemed to be ever-changing.  Our meeting with Congresswoman Betty McCollum had to be canceled as she was unable to get away from the House floor at that time.  She graciously invited us to meet with her back in Minnesota at a later date.

After a wonderful lunch hosted by N.A.C.H. at the Hart Building, and some more schedule juggling, we headed over to the Longworth Building to the office of Congressman Tim Walz.  He too was busy voting at the House and could not return to his office but asked his assistant to bring us over so that we could meet with him in the Rayburn Room.  What an unbelievable opportunity to see the inner workings of the Capitol!  It was a record-setting day of voting at the House with consecutive voting starting at 10 AM through the afternoon. 

As we met with Congressman Walz, he invited Nick and Naomi to the House floor to participate in the voting.  Wow!  Since only Members...and kids..are allowed on the House floor, off they went!  Nick entered a vote for Congressman Walz and Naomi entered a vote for Congresswoman McCollum. They were so gracious and spent probably more time than they had with us.  Back in the Rayburn Room, we also had the chance to meet with Congressman John Kline who is our district representative and his assistant.  Again, we were so appreciative of his time and his receptiveness to our story.  After our meetings finished, we were able to explore the Capitol a bit.  Congresswoman McCollum even took the time to give us a mini-tour in the Capitol Rotunda, showing us the location of Abraham Lincoln's desk when he was a member of Congress.  An awesome day and many amazing opportunities to share about the need for children's health care! 

At the airports, on the flights and in many places around Washington D.C., including Capitol Hill, there were people who recognized Nick and remembered his story.  He had the added bonus of being able to share with all of those people why he was in Washington and how the specialized care he's received has made an impact on his life and his future.  Can't get any better than that!

Greta

N.A.C.H. reception

We were at the N.A.C.H. reception tonight with all the other kids and their families. There was a live band and there was an area that we hung out at where they did caricatures of you.  It was really cool.  If you look really closely at the picture, you can see my "stubbies." My stubbies are my short legs.  They don't give me any height.  It's kind of like I'm walking on my knees.  There was face painting and these really awesome pictures you could take with a green screen.  I had a great time meeting and hanging out with all the other kids from the different hospitals.  We all had our own trading cards with our pictures and our stories on the back that we got to exchange with each other.  When the band was done playing and they were wrapping things up, I got to try out their drums.  When I was done I asked my mom if I could get a drum set.  I was thinking she might say maybe.  She did.  She said maybe we could keep them at your grandma's house...which translates into no.  I'll keep trying.

When I was on the Today Show the first time back in November of 2007, after my interview we got to go watch Natasha Bedingfield and Sean Kingston perform out on the plaza.  While we were standing there, we met twin girls and their parents and family just briefly.  The girls, Andrea and Alyson, were in New York on a Make-A-Wish trip.  GUESS WHO I SAW AGAIN TODAY?!  Yep, it was Andrea and Alyson and their dad and grandma.  We had fun seeing each other again and hanging out tonight.  How crazy is that?!  I had a big smile on my face when I got off the elevator to head back to the room.

After a long, great day, now I have to go to bed. It might be hard to sleep tonight because I'm so excited for Capitol Hill.  My mom is yelling at me to finish this.  I have to go.  Good night!

Around the town...

I was so fascinated on the tour today.  There were so many memorials that I hadn't even learned about yet.  It made me sad to think of all the people who had died in the wars. I feel grateful for all the sacrifices made for our freedom.  As we drove around, everywhere I turned, there was history.

After the bus tour, we got to walk around the Smithsonian National Museum of American History.  The exhibits were so cool!  I wish I had more time to see everything  We spent the most time going through an exhibit called The Price of Freedom: Americans at War.  I love that kind of history.  So does my sister...and she knows her history!

Then we made a quick trip over to the National Museum of Natural History so we could see the Hope Diamond.  I had imagined that it would have been a little bit bigger considering the deal they make over it.  I heard it was "cursed."  Weird. But it was cool.  There was so much more to see.  I hope I can come back someday and spend more time there.

We walked back to the hotel in the rain and had a great lunch.  After that we got to learn a little about the Senate and the House of Representatives.  I am looking forward to our visit to Capitol Hill tomorrow. I can't believe that I actually have a chance help make a difference!  It makes me feel very empowered to know that at 10 years old I can help to make positive changes for kids everywhere! 

Today's the Day!

We got up this morning and headed to the airport for our flight to Washington D.C. Before we went to our gate, we met up with a photographer from KARE 11, our local NBC affiliate. My mom and I gave an interview about what we were going to do here in Washington. (It will be aired this evening on the 6 pm CST newscast.)

Getting through security is always fun.  It seems that almost all the TSAs know me and a lot of them even call me by name and ask me where I'm going THIS time!  It's probably because I can never get through with my prosthetic legs. I have to get patted down every time.  We call it the "VIP" treatment!  My suitcase always gets flagged too when my running legs are in them.  My mom tells them there are legs in the suitcase before it goes through the machine and they always give her an odd look...and then they have to make sure.  It's kind of funny.  Everyone is always very nice to me.

We went to the gate, got a tag for my wheelchair and then went to Starbucks (yes, I'm 10 and do love coffee).  We met Molly Snyder, our friend from Gillette that is going on the trip with us, and got to meet the family that is coming to represent Children's Hospitals and Clinics of Minnesota. Before long we were getting on the plane.

The plane ride was great, except there was a lot of turbulence.  But I actually took a nap.  The flight seemed very short.  After we picked up our bags, we got a taxi and headed to the hotel.  We found a great place to eat with Molly.  We all had seafood...except Naomi had meatloaf.  We drove my mom crazy by talking so much. And Molly just sat there and laughed.  My mom felt sorry for her but I knew Molly was used to all that stuff because she has a husband and three boys...it's probably normal for her.  Ha! :)

On Thursday when we head to the Capitol, we're going to have breakfast and meet with Senator Amy Klobuchar.  Later we will be meeting with the Representative from my district, John Kline, as well as some of the other representatives from Minnesota.

I've been thinking about the thing I want to tell them.  I think it's very important for children to have special health care just for them.  Kids have different needs than adults and should get the best treatment for their needs.  I don't think I would have done very well going to a grown-up hospital.  My hospital, Gillette Children's Hospital, has helped me be the best kid I can be.

I'm really worried about kids not having health insurance and getting the health-related things they need.  Kids need to be taken care of so they can be healthy.  I can't imagine what my life would be without health insurance.  I might not have gotten all the surgeries, hospitalizations and therapies that I needed.  I might not even have legs!  No kid should miss out on the things that help them be the best kid they can be. 

I want to be a big voice for the kids in our country, especially those kids with special health care needs.  I want our lawmakers to know what a difference it can make in a kid's life to have the right kind of health care.

Speaking Up

I might be going to Washington D.C., but I've already started lobbying right here in Minnesota on another issue.  My mom and I and a bunch of awesome people are part of a group that is working on a parity bill that will help provide prosthetic coverage to children and adults with private insurance in the state of Minnesota.  As I've grown older, I've realized that not all private insurance companies provide prosthetic coverage.  I knew I would have a better life and more opportunities to do the things I wanted if I had my legs amputated.  I saw all the different kinds of legs out there and all the things that people could do.  But I didn't know that there were people who couldn't get those legs and do all those things because their insurance didn't cover them and they couldn't afford them.  With the way that things are right now, when I grow up and have my own insurance, there is a chance that I might not have prosthetic coverage or be able to afford my legs.  How will I work?  Or run?  Or golf?  I asked to have my legs amputated because it could give me freedom.  I don't want that freedom taken away when I grow up because my insurance company doesn't want to cover my legs.  I want everyone to have the prostheses they need and a chance to make their dreams come true like I did.

Please take the time to check out Prosthetic Parity for Minnesota if you can.

Just like it's important to have legs, it's really important for kids to get the right kind of health care.  Because of Gillette Children's Hospital, I'm having a great life.  Also because of a children's hospital, my sister has survived cancer.  Every child should have that opportunity.  I am speaking up in Minnesota for amputees and now I have the chance to speak up in Washington D.C. for children's health care and for all kids.  I can't wait!