Reflecting back on our trip

We are home safe and sound.  We arrived late last night and are still in awe of everything that has happened over the past few days.

Tuesday was a whirlwind of one wonderful surprise after another.  First off, we were/are thankful that the only party that Kylie decided to partake in was on Monday night. There was a fantastic dinner/celebration with all of the other families, and we were able to connect with even more families that have such different stories but share all of the same feelings as our family.  That alone has been a priceless experience.

So after Kylie made it through the night, we had a fairly smooth morning and headed off to our meetings.  This is the part of our trip that Jon compared to “The Amazing Race”.  With morning meetings approaching and Kylie and Lily using strollers, the Metro commute from the hotel to Capitol Hill was a maze of weaving in and out of elevators and up and down escalators with the Watson Family.  We made it there with plenty of time and in one piece (which is all, and often more than we could ask for).

We were lucky enough to get a unique look at Washington.  Our meetings bounced back and forth from the Senate to Congress to Senate to Congress and lunch was somewhere in between.

Here’s a recap of our meetings:

Senator Shaheen’s Office:  This was our first meeting of the morning.  Though Senator Shaheen wasn’t able to make it we were able to take a lot of time to send our message to her staff.  We wanted to share our story and hope that education for pediatric specialist training will continue.  (Have I mentioned that Kylie sees over 2 dozen specialists?) We are dependent on specialists at Boston Children’s.  They are either spread out around NH or simply don’t exist here.  Sen. Shaheen’s office seemed very supportive, and it was a good start to getting over our nerves.

Rep. Charlie Bass:  Even though he’s not our (Goffstown’s) Representative he took time to meet with us and listen.  He asked excellent questions and seemed genuinely surprised that we don’t have access to all of these specialists in NH.

Rep. Frank Guinta: Our scheduled meeting ended up conflicting with a vote that needed to take place so we were whisked to a room adjacent to the floor and Congressman Guinta actually came out to meet us during a break.  It was all very exciting.  He was personable and seemed to have a huge interest in making sure that our family and others are able to have the specialty care they need.  We also had no idea that he has young kids of his own.

Senator Kelly Ayotte:  She was extremely busy but took time to listen and ask questions beyond the basics.  Kylie was also the “busiest” during this meeting and made sure that Senator Ayotte was well-aware that she (Kylie) is very skilled at blowing raspberries.

Some other surprises/treats that we weren’t expecting:

1. We got to beat the heat and take the special subway system below the Capitol Building.  This was really cool and often only used by Senators, Representatives and staffers.

2.  Their offices are tributes to New Hampshire.  Though the decor varies from office to office there are distinct pieces of New Hampshire in each and every office. The best was a panoramic view of Mt. Washington (passed down from Judd Gregg) in Senator Ayotte’s office.

3.  We had such great support from Boston Children’s (which shouldn’t be suprising anymore).   President & COO Sandi Fenwick came to two of our meetings.  She was fantastic with Kylie, and I was so impressed at how she was able to articulate and politely reiterate every point that we wanted to make.  We also always had  a staff member from Government Relations to keep things organized and again drive home our points. We are so appreciative for feeling that things went smoothly (because I’m sure they didn’t always, and we have no idea what any of the hitches and glitches were).

4. Even greater, Jon and I are so grateful that Dr. Rosen, one of Kylie’s specialists, was able to accompany us to ALL of her meetings.  He knows Kylie’s story and was able to flawlessly pick up where we left off. Among many of the highlights of this trip, one of the greatest is to know that her doctors and the staff at Boston Children’s really are that fantastic all of the time.

The flight home was a success!  Kylie sat in her seat and played one of her favorite games called “Kiss, Kick and Drop the Baby Doll”.  As soon as take off was complete she fell asleep.  Jon and I asked “Looking back, would we do it all over again?”  and we both agreed “Absolutely.”

~ Heather and Jon (Kiley’s parents)

One Response

  1. Amazing race, indeed. I love it! You guys were awesome. Thank you again! -Amy

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