Archive for July, 2010

Ella at Sunset

The first two weeks of July Ella was having pretty intense seizures–this means that she is growing. The seizures are over and she has grown! I picked her up out of bed this morning and as I walked down the stairs with her in my arms her feet hit the banister. She was not very happy with me, but she is taking after her father and she is going to be tall. Also our baths are becoming increasingly difficult, Ella and I get into the bath tub together and she lays between my legs so I can get her hair washed. We are not fitting in to the tub together anymore! We need to think about making some serious adaptions to our bathroom to accommodate Ella’s needs. Until now we have just gotten by using our strength and imagination, but it is becoming very clear that that is not going to work anymore. Making adaptions to our home is a big decision and an expensive one at that. We need to make sure that we are going to stay in our home long enough to make the renovation worth while along with thinking about resale and the money it will cost. Did I mention the expense?? We are lucky that we do have some money put away in a trust for Ella’s needs as a result of the malpractice performed at her birth. Whenever expenses like this come up in our life I always think about families that don’t have trusts to help and how they make it work. Here’s my segway…My friend Erika has a daughter, Zoe with multiple special needs and two years ago Zoe’s family did a huge renovation on their home. After going through the renovation process and expense Erika decided to start an annual 5k race to benefit families that need to make renovations on their homes to accommodate their children’s needs. A few of my friends have gotten together to form Team Ella to run / walk in Zoe’s race. Please take a moment to read over Zoe’s story and donate if you can or if you are in the area join Team Ella and run with us. Here is the link!  http://www.firstgiving.com/goteamella


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Last Friday, we left our home for a two week vacation on the coast of Maine, staying in my family’s cottage with my sister and nephew Toy. We were all very excited, Ella and Toy love each other so much and can’t wait to spend cousin time together. The cottage is right on the water, a beautiful spot, I have been going there every summer since I was born. It is one of my favorite places in the world. Each summer, I look forward to spending time there with Dave and Ella, sharing the experiences that I had as a kid. However, by day 5 it became very clear that we could not stay the entire two weeks, Ella was having a severe allergic reaction to something–mold in the cottage, the seashore, pine?? who knows? Each day she would have 2 pretty intense allergy attacks, trouble breathing, wheezing, coughing and her eyes were blood red. Considering the rough winter we had with Ella’s health, Dave and I both felt it was best to get her away from whatever was making her sick. We left at 10 pm on Wednesday night returning to our home in Burlington at 4 am Thursday morning. Ella is doing much, much better her breathing is back to normal and her eyes have cleared fast.

It wasn’t hard for me to make the decision to leave when Ella’s heath was concerned, however, what was hard was the loss of what I thought was suppose to be. The expectations that I put on this vacation are high, I love the coast of Maine, I love the water, I love spending time with my sister and nephew, and I love the cottage. I let myself become attached to my expectations and was disappointed when they were not met. I talk a lot about non-attachment and staying in the present moment and here is a clear example of me not practicing what I preach. Just another lesson, albeit a difficult one to swallow.

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