Friday, August 13, 2010

Objects of Light

We've safely returned to our new home in Arizona. Esra is using her Snappie regularly, and has quickly learned to raise and lower herself. This wheelchair has truly increased our daughter's mobility and sense of self. While waiting by the sliding glass door to go outside, she confidently exclaimed, "Ra Ra here! Ra Ra here!" The Snappie is surely the foundation to independent motion and thinking.

Our trip to England has brought to me a marvelous sense of completion. Mixed in with that marvel is admiration for those who supported us through this journey. And we are glad for those who we met along the way. In fact, we even made friends with a band! They were going to London and so we got to chatting in the terminal at JFK while we all waited for our flight to board. Esra scoped out their instruments and she started pointing. That's all the encouragement the lead singer needed.

He is part of a Brazilian band called Candelore. The band's name refers to an object of light (e.g.- candle, torch or lighthouse) in the original Italian. The artist's grace shown in this video signifies to me the grace with which all of our friends have received Esra and helped us to meet her needs. I dedicate this song to our many friends who've helped us fulfill the mission of Esra's Trust.

Wednesday, August 4, 2010

Beginning Again

After arriving in England, we discovered, despite our preparation, that we would not be as connected as we had hoped. Our best laid plans to keep a daily online diary were thrown out the double decker bus window. We were forced to enjoy the landscapes and people instead of craft pithy blog posts as the sun set each day. What a bummer that we couldn't solve the connectivity problem. Oh, well.

For those of you who have newly joined Esra's Trust, some background. Our journey began over two years ago. Peggy was eight months pregnant with Estelle. She felt an intense need to help our then 19 month old Esra to achieve greater mobility and ultimately independence. The advent of our newest child only exacerbated her drive to initiate contact Dragon Mobility in December of 2008. Two and a half years later, we have developed skills, encouraged relationships, been taught how to truly give, found strength in our weaknesses and used our God-given talents to make this project a success. We never anticipated the pressure, opposition and poor policy that would block our way, but we did it!

Our hearts are full. Thank you to all who thought and prayed for us while we were away... and your loyal checking of the blog for updates. We feel your love and interest and we will continue to provide details about our travels to England.

The orange wheelchair in the picture below is a loaner from DragonMobility, while Esra's own bright blue Snappie was being customized to fit her. I am standing next to Ruth Everard, watching as Esra gets the hang of driving. Ruth's needs were the inspiration for the initial design of this electric wheelchair, almost 30 years ago.

We spent many days with the charming Everard family and the Dragon Mobility team in Cambridge. During our down time as we got over jetlag or waited for the custom work on the Snappie, we ventured to Canterbury Cathedral, Kings College Cambridge, Westminster Abbey, National Gallery, and the Cliffs of Dover.

Esra, met her bright blue Snappie last Monday. She has gained skill and confidence each day. Her eyes shine with delight as she finds more freedom every time she manuevers the joystick. And, of course, sometimes we had a real dragon in the room. Everyone did their best to make sure both Esra and Estelle were having a good time.