Archive for August, 2012

Ella and me in a buddhist temple in Singapore. 

Recent conversations have left me feeling unsettled and frankly kind of shitty. Perhaps it’s a lack of articulation of my feelings or just not wanting to “go there” with folks. It’s not a new topic for me or I’m pretty sure for any other parent of a kid with a disability. Sometimes when I’m talking about Ella, people say things like, “It must be so awful for Ella not to be able to talk or walk or eat for herself or do anything for herself.” Or people will  give me a look of sadness and pity when I tell them about her. I usually just smile and move on.  However, sometimes I’m left feeling like shit and often like a failure as a Mom and a women. I do understand that this is not people’s intention and they’re trying to show concern. However, stating the obvious of Ella’s condition to me, Ella’s Mom of 9 years, is just hurtful. Our family has worked very hard to get past these incredible challenges, move on and live a very happy, fulfilled life. It wasn’t until recently that I realized that when people bring up these facts about Ella, it’s only awful for me not Ella. Ella doesn’t know a different way of living. She has adapted. She communicates in a non-traditional way. We help her get everywhere she wants to go and she is a very happy kid. As for me, I don’t really think about any of the things that Ella can’t do until someone brings them up and then I feel like shit. On most days, I am just doing what I need to do to help Ella. Enjoying the challenges that come with trying to get her involved in life and never thinking that Ella is missing out. Life is too busy and full to entertain such thoughts. Sometimes, I like to think of Ella as a zen master or a bodhisattva, who sits for many hours in meditation without moving. They don’t need food or water. Flies land on their noses and they resist swatting them away.  They’re not tempted by the frills and thrills of our physical world. They sit peacefully with a gentle smile on their face and teach us about patience, love and compassion. This is what I wish I could articulate about my sweet, enlightened Ella during each of these conversations that I frequently have (or perhaps cram down people’s throats). However, I always resist my urge to explain our lives or philosophies on life  (and my violent, unkind thoughts.) I take my lessons and lead from Ella and the enlightened teaching masters to act kindly, compassionately and to speak friendly, warmly, and gently and to talk only when necessary.

“If we could change ourselves, the tendencies in the world would also change. As a man changes his own nature, so does the attitude of the world change towards him. … We need not wait to see what others do.”  Gandhi


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Recently, I’ve been feeling ungrounded and unsettled. I’ve been having trouble focusing, my hands are in many pots. This seems to happen to me each year when September approaches as I plan my various teaching jobs, consulting work and preparing Ella for the start of school. I have been feeling very sensitive to other people’s energies both positive and negative.  In an effort to focus myself, I have been meditating more to get back into my own body, sluff off the effects of others around me, and practice my one-pointed attention. This practice reminded me of a trip that I took to India a few years ago.

One day I hiked up to a Hindu temple at the top of a mountain in the jungle in the central part of India. As I approached the top of the mountain getting closer to the temple the population of monkeys grew larger and larger. They were everywhere, cute, but very pesky. Anything that wasn’t nailed down the monkeys would steal. I had to keep my backpack with me at all times or else it would disappear into a tree and rifled through by a gang of monkeys. In an effort to control this the caretaker of the temple built several small cages that he put fruit inside. The monkeys could reach their hands inside the cages and grab the fruit. However, with their hands grasping the fruit they couldn’t remove their hands. The bars of the cages were too small for their clenched fists to fit through.  The monkeys were very determined and would spend hours holding the fruit in an effort to protect their find. The cages were pretty effective especially near the entrance of the temple. The caretaker explained to me, the number of shoes left outside the temple stolen by the monkeys had dropped since he built the cages.

Ahhh…those one pointed, determined little pests monkeys. As I work to get myself focused, settled and back into my own head I will take a lesson from you. I will not give up and keep returning over and over to my goal to live a happy, healthy and peaceful life.

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Recently, a friend approached me about her 13 year old daughter who is interested in babysitting and spending some time with Ella. She feels that it would be great for her daughter and I couldn’t agree more. Ella will love it! She will surely enjoy hanging out with a cool 13 year old, plus I think Ella gets bored of Dave and me.

This reminded me of when I was a teenager in high school and I baby-sat for a little girl with cerebral palsy. Her mom, who was a nurse, used to drop her off at my house after I got home from school for a few hours until her dad picked her up. It was a wonderful experience for me, serendipitous indeed, and the little girl was a delight, so happy and filled with joy. Now, this was not a babysitting job that I went out seeking on my own. My mother, who owns and operates the local beauty shop in town, and several of her costumers volunteered me for the job. I remember feeling a little scared and overwhelmed the first day she came to my house. I wasn’t alone with her. My mom was home working in the beauty shop in the basement of our house. So if I needed anything I could ask my mom and any of her costumers. Most of the ladies were grandmothers who came in once a week to get their hair washed and set. However, when her mom brought her in she had a beaming smile and reached for me right away. She was not as impaired as Ella, but at the time she wasn’t walking. She had a bar in between her legs attached to her shoes. I assume now this was to help with scissoring of her legs. She also wasn’t talking, but it was never hard to figure out what she wanted. I quickly became very comfortable with her and looked forward to her weekly visits. After she left, I always felt a warmth in my heart that resonated for hours.

As I think back on this brief and wonderful experience, I feel so fortunate that those around me saw something in me and knew that I was right for the job. I firmly believe that everything happens for a reason. I remember after Ella was born, Dave and I were taken into a small room off of the NICU and told that Ella had severe brain damage. Her future looked very bleak, if she survived. I was crushed, devastated and depressed. However, there were brief moments of hope for me as I thought of the little girl that came into my life, for such a short time, bringing and sharing her joy and making a lasting impression.

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