Monday, October 26, 2009


Brennan is (finally) drinking from a straw and I couldn't be happier! We had been working on it daily for months and I was starting to feel pretty discouraged. So, we took a short break from the straw ( I think I needed the break more than him!). Then, I gave him some soy milk in the honey bear on Friday and he drank from it all by himself. I wasn't that excited when it first happened because I thought it may be a fluke and the next day we'd be back to me squeezing the liquid into his mouth. But, he has been drinking from it by himself several times a day since then - even signing "drink" or pointing to the honey bear wanting to drink quite often. He gets pretty cranky now if someone else is having a drink and he's not. Quite a change from even a few days ago! He'll even hold the honey bear by himself, which is great! I'm so proud, happy, relieved.....hallelujah!

Tuesday, October 20, 2009

Brennan and Parker

Parker, our third child, turned three years old in June. As the child closest in age to Brennan, I have wondered how their relationship would evolve. When we found out our fourth child was going to be a boy, I assumed he and Parker would be good buddies - and I believe they are. Parker calls Brennan "babe", "baby" or "baby Brennan" and can frequently be found talking to him, giving him a toy, or teaching him how to do something. One of the first things he asks me after he wakes up in the morning is "Can we go wake up Baby Brennan?" I have heard him countless times tell Brennan that he loves him and that he's the best baby. He always tries to get the seat closest to Brennan at the kitchen counter and pulls his seat as close to Brennan's as possible so they can talk while they're eating. It's about the cutest thing in the world.
On a recent trip to the playground with Brennan and Parker, I had a moment where I felt sad for Parker. I was picturing what it would be like if Brennan didn't have the bonus chromosome. They would be running around, Brennan following Parker up the stairs and going down the slide together. Instead, I was holding Brennan as Parker ran around the playground. Then Parker yelled from the top of the slide "Mom, put Brennan at the bottom of the slide, he wants to watch me!" So, I did - and Brennan and Parker laughed and laughed....Parker going down the slide and Brennan watching, clapping, and both of them laughing over and over and over again. Parker, even at his very young age, is making sure that Brennan doesn't miss out on a thing.

Monday, October 19, 2009


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.

This poem was written by the mother of a child with Down syndrome. I read it for the first time when Brennan was a couple of weeks old and felt that it put into words exactly what I was feeling. Suddenly, I was in a place that I wasn't expecting to go and quite honestly didn't want to be. I held out hope that, with time, I would find and enjoy the very special and lovely things about Holland. But now, I don't actually feel like I'm in Holland. I feel like I'm still in Italy - but instead of going to Rome and Venice - the cities where most tourists go, I get to go to Portofina and Vercelli - which are just as beautiful, but with fewer visitors. I'm a mother of four fantastic kids and happy to be exactly where I am.

Monday, October 12, 2009

The Buddy Walk

Yesterday was a beautiful, sunny fall day for the Massachusetts Down Syndrome Congress' Annual Buddy Walk. The MDSC members registered 2,000 plus walker and raised over $230,000. It was wonderful to see so many people gathered together to promote acceptance and inclusion of people with Down syndrome. Pictured below are Dr. Brian Skotko, who tirelessly advocates for people with Down syndrome, and Karen Gaffney, who is an accomplished swimmer and inspirational public speaker and self advocate.
And, of course, our inspiration....

Tuesday, October 6, 2009

Brennan in Action

Here's a video of Brennan in action. He's not interested in crawling yet, but who can blame him when he obviously has so much fun rolling? He also loves to tell funny stories while using hand gestures to get his point across. Enjoy!

Saturday, October 3, 2009

Me With My Happy Boy

As is the case with many Moms, I am usually the photographer and therefor, rarely photographed. So, a big thanks to Eric's cousin, Lori (my cousin-in-law?), who took this picture while visiting us this summer. I absolutely love it. Brennan's big smile, while excitedly clapping his's so him and perfectly captures the daily interaction between us. This little boy is pure joy.

Friday, October 2, 2009

"My Great Story"

The National Down Syndrome Society has compiled an online book called "My Great Story." It is full of inspiring stories that celebrate the lives, interests and achievements of people who have Down syndrome. When you have some free time, stop by and read some truly great stories!