The Year To Tell My Story

 

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ScaryMommy.com

My first post for Scary Mommy is a true story about the normalcy I wanted on a sunny day at the park with my kids. Instead it turned into something else. The most interesting thing about sharing this story on Scary Mommy, was the feedback and suggestion that maybe I was being a bit judgemental and displaying preconceived notions of my own. This is just another example of how being vulnerable, makes you grow, think and think a little more. 

The story starts like this.. 

The Golden Hair Girl In The Princess Tower

I have always been the nice mom in the neighborhood, comforting the upset kid waiting alone at school pickup, worrying about the preschooler cruising the grocery store aisle, until yesterday, when I told the golden haired little girl at the park to go away. It was a warm beautiful day, and I was intent on making some memories. Head on over here to read the rest.. please comment, tweet and share the love while you are there...

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Letting Go Of Summer, Getting Closer To Goodbye

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I don’t know which love is greater, the love I share with my husband, or the love I have for my children. More than intertwined, they are deeply tangled. To try and choose, would require unraveling their knots of time, and pulling them apart would cause too much pain. 

Both of these loves began with worry. Early on love's seed was barely planted, still loose beneath the soil.  I should have been nurturing it's newness but instead raced ahead. I was worried about what loss would feel like, before love even had time to take root, grow and blossom. 

The story of my husband and I began with a dance. Something moved in me that moment when he took me in his arms. We danced the way my parents did, after spending half their lives together. And like my parents, my husband and I are both tall, yet still somehow I felt small and light within his arms, as if we were floating across that room. 

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What I Want For My Special Needs Child

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Zoe just turned eleven! And after these eleven years of mothering her, I know better now, what I want for my daughter. 

Acceptance, Open your eyes. I want others to accept my child for who she is, to look close and see her goodness. At first glance you might miss her amazing sense of humor, the way she can make you laugh or the positive light she radiates, and really.. that is your loss. My child greets everyone she sees with “Hello” , and tells each person she meets, store clerks included, goodbye.She has taught me how meaningful this simple gesture is-because what she is really saying is.. “ I see you. “ Zoe knows that when people look at  her, they first often see her “ equipment”. She has accepted that kids stare (a lot) - but seeing the person behind the wheelchair is important. Acceptance starts with a simple and meaningful  “ hello”.

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Honeymoon Summer

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“ I like helping you..” My daughter Zoe tells me. We are cruising through our neighborhood grocery store, as I weave through the aisles, with my shopping bag overflowing and hanging from the back of Zoe’s wheelchair. Zoe expertly balances a half gallon of milk, green bananas and a loaf of crusty bread on her lap as she goes on.. “ I need to learn this stuff,  how to be a Mom for when I grow up. I have been thinking about this....” Her words stop and start again, as she retrieves the word she was looking for and finishes the string of her sentence. She ends with most difficult question. “ Is it hard to be a Mom?” She is smiling, happy to imagine her future- self this way.

I can’t imagine Zoe being a Mom. She is 11, and without detailing her prognosis, and debating the opportunities for adults with intellectual and physical disabilities, there are basic truths I have come to accept; Zoe’s metabolic disorder is progressive, her generalized epilepsy diagnosis is complex, and looking into the future makes my heart hurt.

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The Lesson I Learned Again, The Day I Cried In My Car

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When my daughter Zoe was little, I looked to the doctors to forecast her future. After all , they had the clinical experience from thousands of patients , and I was the first-time parent of a special needs child. I  would cover Zoe’s baby face with kisses, all the while wondering, “ Will her words ever come?” Will she ever walk? The doctors were uncertain. 

As Zoe grew older, she missed  “ milestones” , yet amazed us with her tenacious achievements. We learned to embrace her uniqueness,and I found peace with the fact that as her Mother, I knew her the best. 

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To The Author of The Anonymous Note Left On My Car Window

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I think I recognize you!  I do.. Before becoming a Mom, I used to live in your world of Black & White, everything in order- in it’s place- I  got a plan- got a schedule- a list of finished projects- checked -off checklist and all. How wonderful for you that your life is so structured , so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines. 

 This time though, in your hurry to keep things neat and orderly.. you didn’t see the whole picture. I guess you didn’t see the accessible permit hanging from my car mirror, giving me permission to park close to the entrance. You didn’t see the wheelchair lift permanently installed into the back of my SUV, and you didn’t see me unload my little girl's pink manual wheelchair that we use for “ quick “ trips. Maybe from your view you only saw my older daughter and I, and not Zoe’s bubble gum pink wheelchair.

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