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Archive for November, 2011

The "Which you talkin about?" face in our stinky hotel room on the Borneo Islands in 2005.

‎”Happiness does not come from acquiring things…It comes from doing something for someone who will never repay you.” Emmy S. Cleaves

My friend and yoga teacher, Marla, posted this quote from her yoga teacher on her facebook page a few days ago. The quote reminds me of a conversation Dave and I had over dinner last week about some of Ella’s classmates at school. The kids in Ella’s class are great with Ella, but there are a few that are exceptional when it comes to communicating with her. These kids go out of their way to engage and include Ella. In my opinion, it’s truly an unselfish act, Ella may not respond, she may not pay attention to you or she may be having a seizure while you’re engaging with her. On the other hand she may be totally engaged, give you a huge smile, laugh out loud or give you her very serious face, the “which you talkin about” face. It’s a gamble, but a gamble worth taking because the reward is huge and feels so good in your heart. These kids know that reward and when Ella responds to them it’s like they’ve won the lottery. They’re overjoyed and give unselfishly more and more of themselves to Ella each day. Overtime the kids come to understand Ella and her needs for communicating, her vision and her positioning for comfort. The kids recognize this and will bring pillows or blankets to make her comfortable, hold a book they are reading to her in a higher position so she can see it or wait till a seizure is over to repeat their question so Ella can respond. I hope to know these kids as they grow into teenagers and adults I can only imagine the positive impact of giving themselves so unselfishly to Ella will have on them.

In this season of thanks and Thanksgiving I’m thankful for the “gifts of nothing” that my beloved Ella gives so unselfishly each and everyday.

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Since Ella was born we’ve had a seating dilemma. Because of her spasticity and increasing scoliosis’s curve Ella is unable to sit in a carseat, stroller, highchair, wheelchair or anything. Dave and I have been very creative as we feed her, bath her, take her in the car, take her for walks and anything else that most people take for granted.  The only solutions given to us by most Doctors, Physical Therapists or Seating Specialists is major spine surgery so Ella can sit in a wheelchair. Either put a rod in her back to “straighten” her spine or perform surgery every 6 months to prevent further curving, both are not guaranteed to fix the problem. These options are unacceptable for Dave and me and her pediatrician agrees with us. Since Ella’s scoliosis affects her lower spine her lungs are not affected which would be fatal, so for Ella, surgery is not necessary to save her life.  Why put Ella through major surgery, which I am not sure she would survive, to make her sit in “adaptive equipment”? Why not adapt equipment to fit Ella?

Check out the photos of our latest creation for walks, hikes, bike rides and cross-country skiing. We cut out the back of the carrier to make room for her feet, built a platform for her to lay on, fastened straps to the sides to keep her safe and in place and are working with a sailboat canvaser to make a windshield for the front to keep her warm this winter. I think Dave, Ella and I should go into the adaptive equipment business and call it THINK OUTSIDE OF BOX and of course all equipment will include free bedazzling!

BTY…You should see the smiles we get on our walks when people see Ella’s cute smiling face.

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In the last few years I’ve completed a 10 day silent meditation, a 7 day juice fast, a 30 day raw food cleanse and 30 consecutive days of Bikram yoga. In yoga class today I was thinking about what my next challenge should be– 60 days of Bikram yoga, another juice fast? Then it dawned on me, 30 days of being kind and loving to my husband. Recently, I’ve been snapping and acting out in ways that I am not proud of and my sweet husband is the target. With Ella’s sleep issues and my inability to handle them Dave has to duck and cover to get through the day with me. So that’s it, that’s my challenge, to check myself before I open my mouth. Taking care to make sure that whatever I do or say that it’s done with love and kindness ALWAYS.

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