Suzanne — 5 Minutes for Special Needs

Suzanne



                               

When Zoe was little I spent a lot of time thinking  ( and writing) about about how different she was. Then she grew, and through her grade school years blossomed with the encouragement to try and do her best as I made sure she was always included, and treated just like everyone else.

Zoe will be starting sixth grade next year, and growing into who she is meant to be. She is quick to laugh and smile, full of pre-teen sass.

I have always maintained my own set of rules for Mothering Zoe. Many of them involve not making a big deal about her disabilities, within our family .. even in small ways. [click to continue]



                               

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Summer of Independence

It’s seems like only yesterday I was sitting in a small room, with a desk between Zoe’s Doctor and I as I asked him question after question- all of them starting with “ Will she ever..?  And in that moment, instead of feeling tragically overwhelmed- I was empowered.

Finally, I was getting confirmation on something my mother’s instinct had always known. I was getting answers.

Seven years have passed since then, and for the first time, in a long time- I find myself starting over asking questions again, researching and  learning new methods for tackling daily life and Zoe’s physical and medical challenges.

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The ” Good Enough” Mom

I am about 12 years into motherhood now.. and like lots of Mom’s I know, I still don’t feel like I’m getting it right. Mothering kids with medical issues takes a purposeful amount of focus and attention, the kind that sometimes prevents you from being that cool ” chill” kind of mom..yet still I try , and every day I learn.

I have learned that sometimes rolling off the bed as a result of a tickle fight is the kind of good clean fun that all kids need, low muscle tone or not. 

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Message for ALL Mom’s.. LOVE your kids, as if they were dying..

My day had started like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I had an appointment at the office later, so I spent a few minutes standing in front of my closet perplexed and sighing. I looked in the mirror, briefly noting the major damage 40 plus years and nightly interrupted sleep can bring.  Finally, by 7 am, we were all dressed and ready, so we hit the road to drop Zoe’s big sister O, at her school first.

Later, it was just Zoe and I in the car. The sun was streaming through the car windows, the radio was on and I was trying to make Zoe laugh.. 

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The Anonymous Note, Part 2 And Those Kids Who Inspire Special Needs Moms


When my daughter Zoe was a toddler, she didn’t spend her days spreading out her toys and playing on our cool tile floor , or toddling around clutching her favorite doll with sticky juice hands like her big sister Olivia did.

Instead,  Zoe preferred to cuddle for comfort. Her speech didn’t develop until late so I spent a lot of time trying to interpret her sound and movement, solicit a response, and get to know my little one, trying to discern what made her happy and what was making her hurt.

Zoe was 3 years old when she was finally diagnosed, when we learned she would never walk by herself.

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


I think I recognize you!  I do.. 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.  

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Ordinary Acts, Extraordinary Love

My girls have been in school a few weeks now, settling in- despite the challenges- two weeks of record Arizona heat, new classrooms, new schedules and the same old pressure to eat snack, eat lunch, drink water and do their best work.  Two different schools, two different nurses offices’ stocked with medicine and strategically planned driving routes to include both schools and a quick commute to / from work. We are all doing the best we can, and achieving more than we even realize.

We have set routines, schedules and some pre-packing we do the night before; lunch boxes, snacks and backpacks.

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Truth and Beauty

When Zoe was little, each moment of truth was stunning. She will never walk by herself. She won’t run in the grass, walk in the sand, or recklessly dance her way across the room. These moments have continued as she grows older. Drive a car. Have a child. Grow old.

I grieve these truths and then move on, trying to live so typically that sometimes I can forget for a long, long while. Until now, now that Zoe, and her big sister, are coming to know these truths- and understanding them enough to shed their own tears.

Zoe is 9 now, and loves to sing and dance- read about sassy girls like her, and is smart, especially in that ” when you least expect it” kind of way.

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The Value of Life.

…”The hard part is trying to answer the questions Walker raises in my mind every time I pick him up, What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? … If Walker is so insubstantial, why does he feel so important? What is he trying to show me?”

-excerpt from Ian Brown’s Memoir “ The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son“

It was this passage of the book  The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son that first stopped me.

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The Words That Matter Most

I remember the exact moment I got the news, when my world stopped and for the moment -nothing else mattered. I remember the way the doctor led us across the recovery room and into the makeshift office of the medical tech I saw scurrying away.  Some guy who, at the doctors urging, left so fast, his abandoned cup of coffee still sat steaming on his desk. We sat talking until that cup of coffee grew cold.

At first there was relief, I was strung out from sleep deprivation, and determination. I knew something was very wrong, but no one in  Arizona could figure it out.

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