Road Trip: Boston

August 03, 2012

Road Trip: Boston

We took a mini-vacation to Boston last weekend. The National MPS Society held its annual conference there. They asked Matt to speak during the final night about his book (www.benbeesleybook.com) and his story as a father dealing with an MPS diagnosis. The kids and I opted to site see with friends, while Matt attended the conference. Our dear friends live in Boston and offered to show us around the city. They even brought along a friend's daughter who helped me with the kids. We had a wonderful time exploring the city. And I ate some of the best food!! Massachusetts surprised us by being very hospitable and accommodating.

Matt & Waverly at dinner

Our friend, Matt, holding Oliver in Boston Public Gardens

Oliver and Dylan at Boston Commons

Jessie, Dylan, Waverly, Sasha & Oliver (all have Sanfilippo, except for Dylan)

The trip was fantastic, but simply not long enough. We will most definitely take another New England trip in the future. Lots of thanks to Cari, Matt, Joanne and Mike for entertaining us for the weekend.

Comments

Kathryn said…

Hi guys, Kathryn typing. Thanks again for letting me help out with Waverly and oliver! I had a great time, hope the rest of your stay in Boston was great!

August 13, 2012 at 12:53 PM

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.