Making your own milestones.

The first three years of Ella’s life I went to very few Doctor’s appointments with her. These early appointments were terrible, filled with devastating predictions of Ella’s future. Doctor’s would pull out those charts, the growth and the developmental milestone charts. They would point out that Ella’s growth and development was not on either chart.  Doctors would explain over and over that Ella would never be able to walk, talk, feed herself or do anything for herself— that is if she lived past the age of 5.  I stopped going to the appointments, it was too painful. I drove Dave and Ella to all the appointments and waited in the car crying or sometimes throwing up in the parking lot until they came out. When the appointment was over I would make Dave recall and recite every detail, if he left anything out I would get very angry. Ironically, after those first few terrible appointments of Ella’s life the rest of the appointments were not so bad. Ella was growing, we were taking exceptional care of her, we taught her how to drink from bottle keeping her off a surgically placed feeding tube and she was happy. We found a good pediatrician in Baltimore who was positive and supportive of our family. However, I still couldn’t bring myself to attend any of Ella’s appointments. It wasn’t until we moved to Vermont when Ella was 3 1/2 that I started to go to some of Ella’s appointments. After moving we found a wonderful pediatrician, she is very supportive of our family’s choices of care for Ella. I slowly started to realize that doctors should be part of your health care team, they are not the all mighty predictors of  Ella’s fate. Doctors are just doing their job the best way they know how, making sure you know all of your health care options. I also realized that we needed to make our own milestones for Ella. Each and every day Ella is making incredible strides in her life, making eye contact, smiling, learning to drink from a bottle, learning to eat solid foods, hitting a switch with her hand for communication, using her eyes to respond to yes/no questions and so much more. All of this may sound simple when compared to a normally developing child, but for Ella and kids like her these milestones are just as important, difficult to achieve and exciting for parents. These milestones for Ella and kids like her should not be overlooked, they should be celebrated and applauded just as much as milestones met for any other kid.

Place your oxygen mask on yourself before helping others.

Anyone who has flown on an airplane has heard the flight attendant announce “Place your oxygen mask on yourself before helping others,” in their pre-flight speech (those people who pay attention to pre-flight speech anyway). As a mom this alway struck a cord with me as a selfish, even irresponsible act, “Of course I will always make sure my baby is ok before I take care of myself.” FACT: There is no taking care of your baby if you are passed out from lack of oxygen.

Several years ago when I returned to my yoga practice after Ella was born I finally began to understand this very important lesson. Taking care of yourself first only benefits those who you are caring for.

When Ella was 2 years old our family attended a Yoga for the Special Child training in Encinitas, CA, as I’ve mentioned before this was the first step in my long recovery from very severe postpartum depression (http://juliepeoplesclark.wordpress.com/yoga-and-healing/). After the training I began practicing yoga every day—meditating, reading The Yoga Sutras and practicing yoga asanas by myself and with Ella. I felt guilty taking an hour for myself and would always include Ella in my practice. After practicing this way for a year I attended another Yoga for the Special Child training by myself in New York City. I explained to the very wise and amazing Sonia Sumar, founder of the Yoga for the Special Child program, what my yoga practice had consisted of over the past year—practice each day with Ella always included. She encouraged me to take the hour I practiced yoga for myself, “Let someone else care for Ella while you care for yourself.” This advice was very hard for me to take at the time and took a long time for me to implement. I felt selfish and guilty leaving Ella out and taking an hour for myself. Finally I listened, as I began to practice non-attachment from Ella for an hour I found myself recovering slowly from my depression and I was becoming a better caregiver. This change in my practice not only benefited me if benefited everyone around me, I was more energized, more loving, happier and I was a better wife and partner to my husband Dave.  As I fast forward 6 years to the present I am still taking time for myself, practicing yoga daily, going to a yoga studio and spending time in an incredible environment with like minded people. I come home from my practice happy, energized and walk through my door to a happy Dave and a very happy Ella. Life is good.

I have decided to go to Los Angeles in April for a 9 week Bikram yoga teacher training. This will be a huge challenge for me in so many ways, the biggest challenge of all will be the separation from Ella and Dave. I know they will be fine without me, I just hope I am fine without them. Another lesson to learn how to practice non-attachment in a healthy way, be present and not dependent on those who I love. As it states in the Yoga Sutras of Pantanjali find “freedom from ego bound rigidity” that we create in our lives. I will let you know how that goes.

Check that ego at the door butthead.

Recently the Bikram yoga studio where I practice has been very crowded, lots of new people and people who haven’t practiced for a while that made New Year’s resolutions to come to class. It’s always fun to have new people, during class I silently encourage them, hopefully, helping them to stay in the very hot room and get through the series of yoga postures. One day this week I found my ego beginning to spin a little out of control. I got to class early and set my mat up to practice, a lady came in at the very last minute and set up right next to me. She was new to the class and very, very physically fit, possibly a triathlete, here in Burlington,VT there are a lot of very fit people, it’s a city of triathletes. Not sure if I was annoyed that she set her yoga mat so close to mine or that I had to look at her beautiful flat stomach and long, lean muscles next to my Christmas cookie filled belly the whole class—-Whatever it was, I was annoyed. We began class and it became pretty clear that she was new to the yoga practice, not very flexible and not used to the heat of the class, she struggled through the standing series. Was I wishing her well during the class like I usually do to newcomers? No, I was taking note of each and every mistake she made. As the standing series of class was over and we were transitioning to the floor series the lady leaned over to me and said, “You have such beautiful form in the postures, I love to watch you.” Man, I felt like a real butthead, letting my ego get the best of me and run my mind with superior thoughts.  Once again I thank yoga for helping me to learn to check my ego at the door, it’s no fun to feel like a butthead.

Early morning on the Ganges in Varanasi, India.

Hoarding behavior.

The purple couch, our house in Baltimore.

Dave and Ella's tricks, our house in Baltimore.

Several times a year I clean and purge our clothes closets, linen closet, medicine cabinet, pantry, bookshelves and Ella’s toy box. I end up with several bags of trash, recycling and donations each time I clean, along with a huge sense of satisfaction for the tasks completed.  I don’t like to hold on to things that we no longer need, use or wear. I try not to place attachments on things in my life.

Last night as I finished my work I sat down to watch some TV before going to bed. I ended up watching Hoarders, a show about people who have extreme attachments to all things in their lives. They live in houses overflowing with clutter, trash, spoiled food, clothes and anything and everything else that they are unable to get rid of in their lives. It’s pretty scary the conditions that some of these people are living in. As I sat and watched the TV show I felt a sense of pride puff in me for the work I’d completed of de-cluttering our house, then I remembered the state of our house the year after Ella was born which de-puffed any pride in me.

We owned an old row home in Baltimore City when Ella was born. The house had cracks in the walls, creaky floors, a postage stamp yard and tons of character, I loved it. We lived in the house for two years before Ella was born, Dave and I spent most of those two years scraping and painting, pulling up carpet and planting a beautiful flower garden. When Ella came along we were pretty satisfied with our progress on the house and we had a beautiful nursery ready for Ella.

After Ella’s birth and spending 4 weeks in the NICU we finally came home to our house. I sat on our couch and didn’t move for much of the first year. I never cleaned, I let things pile up, get very dirty and cluttered. Dave didn’t have time to clean he was working, taking care of Ella’s multiple needs and a depressed wife. I stopped cooking so our kitchen was full of take out food boxes, Dave and I were both drinking very heavily at the time so our counters were stacked with wine bottles and beer cans, and then the mice came. Not just one mouse, several mice and I did nothing to stop them, I remember sitting on the couch watching them run across the floor and having no reaction at all, just watching. UGH, it hurts to think about now. Finally, my Mom, Dad and sister intervened while Dave and I were away exploring an alternative therapy treatment for Ella. They came in and de-cluttered and de-moused our house without a word or judgement —thank goodness.

By the end of the Hoarders show last night I felt a shared experience with the people struggling with their illnesses and clutter, just an example of the shared oneness we all have. If we look deep enough inside of ourselves we can surely find a teaspoon or perhaps a cup of someone else’s pain or neurosis. Although my house in Baltimore was no were near the cluttered houses on the show I feel that I can understand the hoarding behavior a little better now.

Update on the Windshield and our no longer seating dilemma.

Ella’s windshield was finished yesterday. The sailboat canvaser did an incredible job! Now all we need is some snow so we can switch out those wheels and strap some skis on that baby.

http://juliepeoplesclark.wordpress.com/2011/11/17/our-seating-dilemma/

How to wake up happy, by The Clarks

Each day when Ella wakes up we have a ritual that we follow every morning. She usually lets out a yell to let us know she is awake and needs to be flipped from her back to her belly. Dave and I get to her fast because she can easily get pretty mad if she is left on her back too long. Once she is flipped and comfortable we leave her alone for 10 minutes or so to see if she falls back asleep. If we check back in on her and she is still awake we know she is ready to start the day, this is when the fun begins.

We open up the window shade, pick Ella up and sit on the edge of the bed, she is almost always smiling. Then we sing our good morning song, it goes like this:

We wake up this morning and we smile. Twenty-four brand new hours are before us. We vow to live fully in each moment and to look on all beings with eyes of compasion. Hooray, Hooray today is gonna be a great, great day. Hooray! Hooray!   Dave usually adds an  Oh YEAH! Oh YEAH!

You are welcome to steal our song, make it part of your morning routine and see if it makes you happy to get out of bed each day. Yes, we are fully aware of what big dorks we are, however if you would like us to record the tune for you we would be happy to do so.

Ten Silent Days.

Each morning when I wake up I lay in bed for several extra minutes and look out the huge window in my bedroom that overlooks the park in back of my house. This morning as I was laying there I began to think about Ella and how incredibly sweet she was all day yesterday. Her smiles and laughs are infectious, my heart expands each time I think of her and all the joy she brings to me each day. I’ve always taken my time to get out of bed each morning. I’m very lucky that I don’t need to set an alarm to wake up and I can get up naturally and without a rush. I have time to reflect on what the day will bring, what happened the day before or just muse over how lucky I am to have Dave and Ella in my life. However, this time in the morning  used to be a time for me to wallow in guilt and worry. For several years after Ella was born I would lie in bed each morning and think about the circumstances of Ella’s birth injury. I’d feel extremely guilty for my decision to have a natural birth in a birthing center, questioning myself, wondering if I made a different choice would the out come have been different. These few moments laying in bed each morning set the tone for the rest of my very depressing day.  Overcoming this thought pattern was not easy and it took ten days of silent meditation to change my mind and my life.

Two years ago I spent ten days in silent meditation at a Vipassana Meditation Center http://www.dhamma.org/en/schedules/schsuttama.shtml in Canada. It was so incredibly hard, we spent all day, except when we were eating or sleeping in silent meditation. I wanted to run away most of the time, Dave dropped me off, so this was not possible. If I knew how to hot wire a car I would have been out of there.  Needless to say I was stuck. Each day I sat in meditation and each day I experienced the same excruciating, radiating pain in my hips. It wasn’t until I think day 8 of the meditation that things changed. About two hours into the meditation on this day I began to feel very hot and started to sweat. Not just a little sweat, a lot of sweat beaded and poured off of my body. It was not hot in the meditation hall, it was February in Canada! This heat continued to build in my body and the pain I had been experiencing in my hips intensified almost to the point where I thought I was going to have to get up and leave the meditation to lay in the snow outside. I didn’t, I stayed and then I felt an incredible whooshing energy move through my body and right out of my hips. The pain was gone, I didn’t and still don’t experience the pain in my hips when I sit in meditation. I finished out the rest of the silent mediation with no pain. I came home to Dave and Ella and stepped back into my role with them as Mom, caregiver and wife. It wasn’t until about a month after my silent meditation that I realized that I no longer laid in bed each morning and thought about the terrible circumstances of Ella’s birth. I wasn’t thinking about the past, I wasn’t chastising myself for past mistakes and I wasn’t thinking about what could have been. I was present. My days were no longer sad and depressing, I was opening up to the love and joy of Ella.  This wonderful, terribly hard experience changed my life and I am thankful for that. It wasn’t easy getting myself to the meditation center, I signed up and canceled many, many times before I followed through. In fact, Dave pretty much had to push me out of the car and drive off very fast when I finally went to the center. Ahhh.. If I only knew what ten silent days could do to change my life, I would have shut my mouth a long time ago.

Gifts from nothing?

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.

Our seating dilemma.

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.

My Next 30 Day Challenge

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.