Summer Bliss

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My daughters are bronzing nicely from their time in the summer sun.  Yesterday we picked 10 pounds of blueberries; we’ve added most of these to the freezer stockpile of strawberries picked in June.  The tiger lilies are blooming and the days have been endlessly glorious.  We’ve been hanging out at the beaches of Lake Champlain a lot and using Papa’s new propane grill we got him for Father’s Day. I made the first batch of pesto this week, and we try to be a biking family in our bike-friendly town.  As Sylvie’s twin sister declared yesterday, “Vermont is a magical place.” 

Of course, she is also living on brown rice, cheddar cheese, fresh fruit and soft serve ice cream all summer, so what kid wouldn’t think she lives in a wonderland? 

There’s also a moderate level of summer bliss in that my girls both finished kindergarten in June with glowing reviews from their teacher.  I’m a bit stunned that Sylvie made it through the school year given her continual struggles with upper respiratory infections and the new addition of oxygen tanks in our house.  But then, I was surprised when she got to her third birthday, and her fourth birthday, and her fifth birthday and her sixth birthday.  Keep on surprising me little kid! 

This summer our family is doing the stay-cation thing.  Vermont is gorgeous and there are tons of state parks and mountains to explore.  Each morning I wake up, I try to think of creative things to do with my family, trying to let go of the school year hysteria and mayhem that swoops me up in unhealthy ways.  I want to pocket these sunny lazy summer days. It’s taken almost a month for me to unwind from my stressful job and the constant struggle of balancing work and family under what seem extraordinary circumstances. 

The last two months have also been a time to meet with our excellent medical team and the cadre of health care and social service professionals we have working with Sylvie. We are catching our breath and catching up on the paperwork and new state programs.  I am grateful to live in a state that really strives to have patient-centered care, and that as Sylvie continues to grow and get older there are services that benefit our family and her health tremendously. And regardless of how controversial all this new national Affordable Care Act is I am grateful that there are organizations such as National Organization for Rare Diseases (NORD) and the Global Genes Project who are advocating for policies that directly impact my family.  If I switch jobs or insurance companies, Sylvie cannot be denied based on pre-existing medical conditions. 

Just yesterday, the Global Genes Project announced that the new Food and Drug Administration Safety and Innovation Act (FDASIA) law “includes major provisions of importance to the rare disease patient community and creates several changes to FDA policy including a provision to empower the FDA to accelerate approval of life saving treatments for patients with rare diseases.”  This summer I’m working on generating some fun and peace for my family, so I’m grateful others are out there on the battlefields fighting these good fights so that I may have many more summers ahead with my little girl.

When Kirsten isn’t on summer holiday from being a professor of Communication Studies at the State University of New York, she is the mom of two lovely 6 years who are no longer in kindergarten!