There really is no other way to describe it. We had an incredible summer! I have truly been “on vacation” the last couple of months. Sadly, I procrastinated on these journal entries and I apologize. The last time I wrote- there were 10 days of school left- now there are less than 10 days before it begins. Unbelievable!

JUNE
Kicking off the summer included a get together with the VanHoutans and Duinstras at our now handicap accessible house (our front walk was made into a brick paver ramp). All the kids had a great time and we truly enjoyed one another’s company. We have some very wonderful friends through the tragedy of circumstance.

Special Dads with Wonderful Kids

We had an endearing celebration on Father’s Day as Grandma Katie invited us to Assumption Catholic Church downtown for the blessing of Bridget’s Garden. Katie and her Garden Club revived the courtyard, creating a special place in honor of Bridget- including a butterfly bush. It was an amazing tribute to our very special girl and a perfect way to celebrate family that day.

Bridget's Garden

Then Harrison and I jetted off to Florida for a few days with our dear friends, Anne and Charlie. The boys got to play golf, tennis and swim to their hearts’ content. Anne and I got to sun, read and relax with wine. I really missed that when I got home!

JULY
Harrison set out for his next vacation with his cousins to Vermont for 9 days. Whew- that’s a long time without my little man. I really missed him after Florida, but he loved every minute of it. Sadly, we lost our tried and true dog of 16 years (yes, you read it correctly) while he was away. Orvis will always hold a special place in our hearts. So, Dave and I decided to take our one dog and one child to the beach for the weekend. It was fabulous. Bridget got her toes in Lake Michigan as well as the sand. There’s nothing like a sea breeze in summer during a quiet weekend away.

Girls at the Beach

Then the four of us headed off to Louisville, KY to visit our friends the Masters. It was HOT down south, but Bridget enjoyed the refreshing pool water, as we all did. As we visited the Louisville Slugger Museum and Factory, Harrison received his first birthday gift – his own autographed bat. We had a wonderful stay with friends and continued our adventure in Zionsville, IN with a visit at the Swacks with the Greenes and Twitchells. Let’s hear it for DG sisterhood- wow!

As the month ended, we embarked upon our first BDSRA (Batten Disease Support and Research Association) Conference in Oak Brook. Although we feel close to our friends in Downer’s Grove and Chicago, it was so good to get connected to the other families we’ve only met via cyber means. We also had the opportunity to listen and meet some more of the researchers that are working on gene or enzyme replacement therapies, including a representative from BioMarin, a company that did the phase 1 stem cell therapy trial through the Children’s Hospital in Oregon. The smaller group that is known as the Batten Family Coalition (the 6-7 families forging ahead that have children with Late Infantile, same as Bridget) met and have solidified a meeting of the minds to include many different researchers of Batten disease. They are coming together to meet in November, partly sponsored by the NIH and partly sponsored by the Foundations that we have all created. It will be a very exciting time as researchers for Late Infantile have not done this before. They are meeting on November 11 (an easy date to remember) and we look forward to what transpires. Wouldn’t it be wonderful to have them coordinate their research so that a cure truly materializes???

AUGUST
Off to the Lake again, but with many other takers! The annual Kennicott family reunion the first weekend in August is always a hit. This year, the weather was perfect, food delicious and sleep, well, we returned home tired for sure. So great to see all the cousins and celebrate a new baby as well as 2 engagements. It never stops growing!

Kennicott Cousins, 8 & Under

At home we are preparing for school to begin and an 8 year old’s birthday celebration. Harrison had a swim party at Dolphin Cove (our local park district) on Saturday and a family cookout at Aunt Jan’s on Sunday, August 15, 2010. I think with any milestone, like a birthday for instance, a sense of nostalgia takes over. I’m a little weepy today and Dave certainly can’t tell why. I guess I can’t really put my finger on it either….my son is eight, school is about to start (a perk: Harrison is coming to NBS with me), summer is coming to an end, Bridget lies in her stroller-growing longer, she goes back to her old school for a month because the new one isn’t quite ready, 2 years ago today I had my last chemo….and the list could continue. However, I cry when I’m happy, too, and all of the things listed are reasons for happiness. We have many blessings, I know. Sometimes, I just wish they were a little different, like any normal family would.

Bridget continues her stability in health- growing and eating well, having very little seizure activity, and maintaining the ability to get out and about (with 100% supervision and help). We aren’t without some hiccups from time to time. But, the best part of the day is when she sneaks you a smile. We treasure each sweet one. I know she will be ready to share those with her teachers when she goes back to school on Aug. 30. Bridget is their rock star. Here’s to a happy, successful start to the school year!

Hope 4 Bridget