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Archive for May, 2010

I found this poem in Ella’s backpack, it was written by a classmate.
E eloquently cool
L lemon hair
L loves oatmeal
A awesomely nice
C can Ski!

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Today at Ella’s school, we had an IEP (Individual Education Plan) meeting. These meetings are held twice a year, we talk about goals for Ella, accommodations that need to be made for her in the classroom, and any other issues that may arise. There are lots of people involved in these meetings–Ella’s teacher, a speech therapist, a special educator, a physical therapist, a vision specialist, Dave and me. The meeting was great–Everyone involved is very gifted at their jobs, they throughly enjoy working with Ella helping her maximizing her potential, and each one makes the school experience very positive for Ella and us.  However, I cannot seem to exorcise the ghosts of my past.

I enter these meetings and any like them with a protective momma bear attitude ready to defend and protect Ella against anyone who doubts her potential or disagrees with the path that we have chosen to handle Ella’s disability. This is not necessary with the team of teachers at Ella’s current school. I find myself not saying much during the meetings because I am so dumbfounded by the positive swing of them.

In the early days it seemed as if I had to amour myself each time I met with an educator, a doctor, or anyone else who had a hand in Ella’s future. Finding it very frustrating that doctors and specialist who saw her for less then half an hour could make judgements on how she would live her life.

I learned today that I can soften my approach, put down my amour–I think that the work that we’ve done so far has laid positive groundwork for our future. I am sure that we will run into many roadblocks along our way but it is so nice to know that we have many people who are on our side and see the potential in our beautiful daughter.

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Ella's 1st smile

Ella’s first smile–15 months old Montreal, Canada

Sunday night, I returned home to Vermont from three days in Boston. When I walked in the door I got my usual over the top greeting from my husband—he yells my name and gives me a huge hug and lots of kisses—it is the best. Then I went over to Ella who was in her spot on the couch. Her reactions are never immediate, it takes a little while for her to organize her vision and process what she is seeing. When she got it all together her face lit up, she smiled, a huge smile, it was apparent that she saw me and was very happy that I was home. This is the way things are with Ella it takes her extra time to do everything: to eat, to drink, to go to sleep, to get over a cold, to learn and to show emotion. She can’t talk so she can’t tell me how much she missed me or even that she loves me, but I know she does.

Several of my friends and even my sister had babies around the same time that I had Ella. Hanging out with these Moms and their babies was a very clear and at times painful reminder that my situation was not normal. Ella was not hitting any of the milestones that the other babies were: she wasn’t smiling, reaching for toys, sitting up, waving bye-bye and so on. Above all I think the hardest for me was not smiling, it seemed like she was always on the verge of a smile but couldn’t get it out. Then it came, she was 15 months old, we were in Montreal, Dave was doing some PT on Ella’s legs, moving her legs in a running motion and she smiled. Not just smiled but laughed out loud! Dave started laughing, I started laughing, I started crying, Dave started crying and Ella kept smiling and laughing! It was the moment that we had waited for and it didn’t disappoint, Ella’s smile is a very, very beautiful thing and she hasn’t stopped smiling since.

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A dear friend sent me this last week, I love it and agree so very completely with what Emily has written—The last line is the best!
“Welcome to Holland”

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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…For reminding me why I practice yoga.

This morning I returned to my yoga practice after a brief break due to a family visit and Ella’s lack of sleep–which hasn’t gotten any better. When it does, I will let you know. I am reminded of when I was pregnant and so very overdue, I avoided phone calls because I was so tired of people asking, “When are you going to have that baby?” Anyway I digress…

This morning in yoga class I was one step ahead for first part of class. I practice Bikram yoga, the class’s structure is always the same, a set of 26 yoga postures each practiced twice. I’ve been practicing for many years, know the sequence very well and can easily go on auto-pilot.  The first half of class my mind wasn’t in it–I wasn’t listening, moving into postures before the teacher called them, moving ahead to fast and falling out of postures. Each class is broken up into two parts, the first half is done standing, the second half is on the floor. In between the two parts of class there is a short savasana (corpse/relaxation pose.) During today’s savasana, Mandy, my teacher, spoke about staying present (not sure if you were directing that at me, but I heard you!) She gently reminded the class to stay with our breath, not move to fast, not anticipate, and not to go on auto-pilot. I snapped out it, became present for the rest of class and the rest of the day. Too often this past week I have felt too tired, drained and short of patience to recognize the present moment. I have been thinking about the past, the mistakes that were made and what life would be like if they were not made. Feeling sorry for my situation, my daughter, my husband and most of all feeling very guilty. However, when I stay present, life is good, daily tasks become movement meditations. I recognize the gifts that have been given to me and slow down enough to appreciate them. Each and every moment a chance to connect with my breath, my daughter, my husband and become closer to my true Self.

So Mandy, Thank you.

Bikram yoga, Thank you.

Present Moment, Thank you.

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