We are so excited about an upcoming fundraiser initiated, organized and being executed entirely some women in our church!  Let me back up because of course I can not just tell you about the event.  There must be some lengthy storytelling from me. (I think I get this from my father so thank Paul Allison). 

Our church, First Presbyterian Church of Ambler, has an annual women's retreat.  I have attended for the last three years and absolutely love it!  It was way out of my comfort zone to attend but it was one of the best leaps I ever took!  During the first retreat I met women I had never remembered seeing at church and certainly had never spoken with before.  One of those women was Anne!  We have a similar dry sense of humor and hit it off pretty quickly!  The second year I attended a young woman named Amy attended the weekend.  She was quiet and I never got a chance to talk with her.  At church it is difficult to catch up with anyone because I am paying attention to the kids.  So on the way to the retreat this past fall, I said to my fellow co-retreater sitting in the passenger seat, "My goal this weekend is to talk to Amy Ruhf!"  When we were instructed to pair up for an ice-breaker, I made a beeline for Amy and practically pounced on her, telling her all about my family and rambling on in nervous fashion.  I don't know if this frightening encounter encouraged her to do what she is doing; however, it obviously did not hinder her.  At the end of the retreat, Anne stood up and talked about Nathan and Bennett, urging our congregation to join us in our fight to find a cure for Progeria.  I was blown away that she spoke on behalf of our family.  She inspired many people to take action, including Amy!  Amy has committed to hiking 250 miles on the Appalachian Trail, one mile for every 250 children diagnosed with Progeria.  Please check out her Hike4Hope blog by clicking on the link to the left.  There she explains better than I did, the way in which she was led to undertake this endeavor.  Amy admits that she does not enjoy the spotlight so it means even more to us that she putting herself out there and doing something so big for so many, most of whom she has not met.  Please help us promote this amazing hike by checking out her website and sharing on social media (#nathanandbennett)! 

So now we have a wonderful team working with Amy to promote the hike, two Anne's and their families, the church and a wonderful professional PR woman names Susan who is doing lots of public relations stuff pro bono for us! (She also had to some explaining about social media to us old folks!)


Julia Fleming!

Miss Julia just keeps on going!  She is almost 18 years old and continues to fundraise and raise awareness for Progeria.  I am so glad she is on our team!  Today she had a bake sale in front of Starbucks Coffee.  Everything was baked by her service group at school.

Here are the boys ready to go to visit!

We have a hard time getting pictures of the boys outside because of their sensitivity to the sun.  Even with hats, they can't really out, 

She is amazing.  She sat there for four hours happily!  And now her boyfriend joins her for all of these things and he is so sweet and the kids adore him! 

It's so funny because I focus so much on the life that I expected to have one day.  Today was opening day for local Little League and I have wanted nothing more than to be a Little League mom.  After numerous boy-in-baseball-uniform sightings and Facebook posts, its easy for me to be bummed.  But our lives are so full and if our boys didn't have Progeria we would have never met many of the wonderful people like Miss Julia and Colin! They are amazing and inspiring and quite fun too!  In a few weeks she is having a dance party and another bake sale! 


A weekend away

A few weekends ago, my parents graciously watched the kids for two nights while Mark and I had some time to ourselves.  My parents did a great job despite us forgetting to pack pajamas and forgetting to leave car seats for the boys (my mother called around and borrowed from a friend). 

Mark had arranged the weekend as a Valentines Day gift to me.  He had booked a hotel in the city for Saturday night which I did not feel was necessary.  I felt like it was an added expense we couldn't afford and could not justify leaving an already empty house for the city.  I'm so glad I did not insist on staying home.  It was wonderful to be in the city and acting like grown-ups!  We know all of our baggage but we could forget it for a little while and just have fun.  Parents of typical kids need time to themselves, time to work on their marriage but I feel like it is even more important for parents of special needs kids.  As parents of special needs kids we are always "on."  We are always worrying about their health and safety, always advocating on their behalf and always observing strangers reactions to them.  Everywhere we go we are noticeable.  I enjoyed just being Mark and Phyllis for a little while! 


Pinewood Derby and more snow!!

The kids had off school on Friday for a regularly scheduled inservice day.  Yesterday (Monday) we had another snowstorm and they were home again from school all day.  Today they had a two hour delay and tonight we are supposed to get freezing rain and more snow!  Bennett got sick last night and was home from school today.  Tomorrow his school closed due to the forecast and current conditions around his school. 

The bright spot was the Pinewood Derby on Saturday!  Mark I mean Nathan finished third in his Den and seventh in his pack!  The top three in his Den moved onto the finals and then the top six from there got trophies.  Nathan missed it by one and was really disappointed. Here are some pictures. 

Yellow Spiderman car, second row down, first car on the left.

Putting some more graphite on the car before the finals

First, Second & Third in Den 5!

Seventh overall but in the finals he was the first of the three boys in his Den!

This is a picture of the trophy winners and Nathan is in the background, upset.  It was so sweet how it affected him.  Last year he was completely oblivious and we had to remind him to watch his car!  I love this picture, not because he is sad but because he was invested in the race and of course seeing Mark kneeling down talking to him!