Thursday, April 30, 2009

Esra's Trust


The blog for Esra's Trust is up and running. You can find information about Esra's need and donating to the Trust. Phew! I'm so excited that we're getting closer to Esra moving on her own.

There have been so many little miracles lately. Too many to tell, except for one. We survived Sam's emergency deployment this week! He only had 24 hours notice to prepare for a very important project that took him onto a Navy frigate near Florida and out of cellphone range. This is not what we signed up for with this shore tour! Oh, there were some hard moments, and even more messy, cluttered, tearful moments. But I came through with the help of caring friends and neighbors. Plus, I learned that I am more resourceful and capable than I previously thought. And I think Sam feels confident that he is a critical contributor to the R&D Center. And that makes me have warm fuzzies because that means food, shelter and insurance. (Insurance for everything but the powerchair, that is!)

Help us have more warm fuzzies by donating to Esra's Trust, so she can do what toddlers do best, explore, create, and have fun!

Friday, April 24, 2009

Spring in a Box



I read about a perfect way to shoo-away the last bits of winter by sending someone Spring in a Box. Kelly at Make Grow Gather pointed this great site out called Inchmark and its creator, Brooke. She is a book lover and designer. Amazing how she made these Spring-time Capsules that instantly release feelings of happiness and optimism inside of whomever opens it. What a fantastic gift waiting to happen.

Tuesday, April 14, 2009

Talking Points

We are ramping up to begin fundraising for Esra and her power-chair and our accessible mini-van. A campaign, really. Sam has almost wrapped up the paperwork for establishing a Special Needs Trust for Esra. So, I need to come up with some talking points, to get my message out quickly and clearly, so people know what we are asking for.

I need to work on answering the following question to get the funding we need for the SnapDragon Power Chair made by Dragon Mobility in Cambridge, England:

Specifically what helps does she need? Most of the time should be talking about who she is as a person ( likes, dislikes), what she has to overcome and very clearly how this wheelchair will change her life.

Currently, Esra cannot sit, crawl, stand or walk. She is completely dependent on others to move her. She uses a manual wheelchair with great confidence, but cannot access things around her, even if she wheels up close to them. She cannot manuever slanted surfaces or hilly terrain. Curbs and thresholds are nearly impossible to clear.

Despite, her dependence on others to move safely and to interact with her environment, she is happy and friendly. However, she has the cognition of a one-year old even though she just turned three, her spoken and signed language is small and imprecise and she is easily distractable. We believe a chair that can give her elevation to peer eye-level, counter and sink-height, as well as access to the floor will open up her world, improve her cognition and language. Also, having a device that will allow to enter and exit buildings, move along uneven sidewalks and roads (like our driveway on a hill) will give her great confidence in herself and an independent self-image. Ultimately, she will participate more fully and gain valuable experience from actively moving through the experiences of family work, home life, play and friends and school.

Still there are my needs, as my back is losing its ability to bend and lift. With scoliosis and fibromyalgia, the physical demands of caring for Esra are mounting. Having a power chair and a ramp-van will vastly lengthen the life-span of my back, or soon I will not be able to stand or walk. Currently, we have a VW station wagon. It is difficult for me to get in and out of and I have to stoop to put Esra and her baby sister into their car seats. Plus, I must lift her 40 pound manual chair into the back compartment. There is a lot of wear and tear happening to my body. The chair and van will change everything!

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As you can see, there is a lot to say. I'm looking for help...even if you are far, far away, I could use some help with getting the word out (and organizing all those words!). Does anyone want to help with brainstorming and, possibly putting together a brand/logo/identity, as well as a blog? Plus, some press releases and posters. Anyone want to volunteer? Please email: peggy6e(at)gmail(dot)com. Thats the number "6" in the first part, not the letter "b". Or if you have my phone number, call me!

An Incredible Journey

Sam's dad published his first post on his blog, detailing his journey with brain cancer. Amazing...And he has the fortitude to post amidst the fog of chemo and radiation.

Please leave him a comment and tell him that you want to read more!

Strike of Inspiration

I am typing this post from the public library, since last weeks lightening storm took out our phone, internet and fax. If it weren't for the cell phone on the kitchen table and the glass cook top in the kitchen, you'd think it were 1990 at my house. (If it were the nineties, I wouldn't know about or be tempted to watch "What Not To Wear".) I'm so glad that the distraction of the computer is gone for the time-being. I think this was a strike of inspiration, as I am sleeping better, our family has more of a routine and I am getting more tasks accomlished that have meaning and a physical return of enjoyment in either "scrum-diddley-umptious" or "ah-hah, that's how I do that" or "wow, I did that!"

I really think that I was/am addicted to the email and internet. It is so easy to get sucked in to hours of compelling, interesting, and add-to-my-to-do-list-of-cool-projects-I-see-on-my-Google-Reader, but I still feel unfulfilled when I finally pull myself away.

I was talking to another mom today. She, too, has some technology addictions, but I don't think she quite grasped them, as she tuck her Blackberry away to chat with me. We were talking about the internet and all the great stuff you can find on it and how distracting it can be. We talked about other distractions too. She said she took her t.v. out of her bedroom and is now sleeping so much better, even though she doesn't go to bed until 11pm or so each night. There are still two other t.v.'s in her house. After work, she enjoys surfing the net into the wee hours. (Who doesn't?) And her little son, who is immensely energetic, usally doesn't go to bed until then either. I commended for making improvements in her life and I tried to recognize the healthy habits that I am trying to instill in my life.

Is there more of a problem out there? Is there anyone else out there that feels distracted?