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Molliemae's Heart- A Down Syndrome Story

10/2/2012

October is national Down syndrome awareness month.
What can you do to help raise awareness? As it turns out, alot!

I stopped by the National Down Syndrom Society website (http://www.ndss.org/About-NDSS/Newsroom/Recent-News/Down-Syndrome-Awareness-Month/) and found several ways to help educate and celebrate the lives of these angels.

The most known event is the annual Buddy Walk. Dates and locations of these vary but you can search the website above to find a venue near you. Did you know that every year Times Square shows a Down syndrome video on their jumbo screen in the streets of NY? You know the saying...if you can make it there you can make it anywhere! Way to go Down's Diva's & gentlemen.

I have decided to help raise awareness by sharing a story written by Terri Adrian on her niece Molliemae. This piece was featured in the book Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child. It is a reminded of just how special these children are.

Molliemae's Heart

My niece, Molliemae, is a three year old Down's child. She is bit small
for her age because she was born with a defective heart and they had to wait
until she was six months old to operate and fix it. She didn't do much growing
in those first six months of her life because her heart was so weak.

I don't get to spend much time with her. When I do see her I normally
have to chase her down, scoop her up in my arms and steal a kiss, and if I am
lucky, she might give me a hug, too. She is just far too busy a girl for all
that mushy stuff!

This past July one of my sisters lost her oldest son in an accident.
Molliemae was at the funeral with us all and after the service I saw her in the
arms of another family member, so I went over to her and gave her a big kiss on
the cheek. She smiled that big, beautiful smile of hers and then promptly
reached her little arm out to me, grabbed me around the neck and pulled me to
her in a big, tight hug.

Needless to say, I was very surprised and touched beyond words. She has never
spontaneously hugged me (and never has since). It's like she instinctively knew
that particular day how sad I was and how badly I needed that little bit of love
from her. I had hugged a whole lot of people during the two days we had all
spent in that funeral home but none of those hugs comforted me or moved me as
much as the one I got from our little Molliemae on that sad day. I will never
forget that special moment with that special little girl and how much it meant
to me to receive such a random act of kindness and love from a little girl who
obviously has such a big, strong heart.

I think that heart doctor of hers fixed her up just fine. Maybe he even
put a little something extra in there for her to share with us all. Something
beautiful and pure, warm and fuzzy. Something to fill our own hearts with so we
don't have to be so sad even in the worst of times.

~Terri Adrian

Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child can be purchased through the following sites:

Amazon.Com:
http://www.amazon.com/Sometimes-The-Wind-Blows-Sideways/dp/1466419180/ref=sr_1_1?ie=UTF8&qid=1349209079&sr=8-1&keywords=amy+quonce

Kindle:
http://www.amazon.com/Sometimes-Wind-Blows-Sideways-ebook/dp/B00757ISSM/ref=sr_1_2?ie=UTF8&qid=1349209079&sr=8-2&keywords=amy+quonce

Barnes & Noble:
http://www.barnesandnoble.com/w/sometimes-the-wind-blows-sideways-amy-quonce/1036936317?ean=9781466419186

Do you have a story that you would like to share? Email me at WindingRoadBook@aol.com or click on the "How to submit your story" link above.

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We didn't run away- A story by Amy Julie Becker

9/13/2012

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This morning while trying to multi-task by blow drying my hair and trying to surf the internet I came across an article that immediately caught my attention. Straining my neck to get closer to the computer screen without pulling the blow dryer cord out of the wall my eyes scanned the words that hit so close to home. "We didn't run away."

Now I don't normally repost other people's work on my website but I felt that this one needed to be passed on. A woman named Amy Julie Becker wrote about her feelings after she found out her child had a disability. Feelings that I'm sure every parents in similar situations have felt as well. I must let you know that I did look over the article to see if there was a caveat about not re-posting the work and I did not see one, but just in case I will apologize in advance for sharing this wonderful article without the direct permission from the author.

Amy Julia Becker
Author, 'A Good and Perfect Gift: Faith,
Expectations and a Little Girl Named Penny'

WE DIDN'T RUN AWAY

My husband and I found out that our daughter Penny had Down syndrome
two hours after she was born, and we shared the same instinct. We wanted to run
away. Within minutes, I had the route planned out from the hospital room to my
grandparents' summer cottage, three hours north, at the end of a secluded dirt
road that would be abandoned in the wintertime. No matter that the cottage had
no insulation against the December cold. It represented a familiar and safe
place that would take me far away from everyone else, and I wanted to get there
as quickly as possible.

For years, the memory of that desire haunted me, until I finally realized
that every time I had envisioned our escape, I envisioned us as a new family of
three. In other words, I wanted, desperately, to run away from the doctors who
were predicting a life of difficulty and hardship, from the nurses who I
imagined whispering about our situation, and even from friends and family who, I
suspected, just wouldn't know what to say or how to think about us as anymore. I
didn't want to run away from Penny. I wanted to run away from everyone else.

And I wanted to run away from the future. I was scared of the labels that had
all of a sudden been added to our family. I was scared of therapy and
specialists and perhaps most of all, special education. I was scared that Penny
wouldn't learn, wouldn't make friends, that school would be a source of stress
rather than a community in which she could flourish.

We didn't run away. Looking back on it, there were some reasons to fear.
People still use words about kids with disabilities as jokes and slurs. In
Penny's short lifetime, that list includes everyone from high government
officials to TIME magazine to high school kids walking past me on the street.
And plenty of people still see Down syndrome as a source of suffering or assume
that Penny's life will be impoverished as a result of her extra chromosome.

But I've also found a host of people who want to see Penny succeed, and if
there is any place that she has been accepted and supported it has been at
school.

It is six and a half years later, and we just moved to a new town. A few days
back, Penny and I visited her new school. She stuck out her hand to introduce
herself to the women who work in the front office. We noted the fresh green and
blue paint on the walls. And we met Penny's two teachers, one of whom has
training specifically to support students with special needs. If first grade is
anything like kindergarten, Penny will thrive. She will make friends and read
chapter books out loud and squirm her way through art class and yearn to grow
tall enough and strong enough to do the monkey bars all by herself.

Forty years ago, Penny might have been denied access to a free public
education. Forty years ago, we might have been advised to institutionalize her
upon birth. But in recent years, parents, teachers, and legislators have worked
to ensure a place for kids like Penny in our nation's classrooms. It isn't
always easy or pretty. Plenty of kids still suffer the injustice of unequal
resources, abusive classroom aides, the social ostracism that can come from
peers and teachers as a result of their disabilities. But the doors are open to
them, at least in legal terms. And countless families can attest to the value of
including kids with special needs in our classrooms, both for the kids
themselves and for their peers.

This morning, our whole family walked down our new street to wait for the
bus. We stood alongside four other kids from our neighborhood, and when the bus
finally arrived, Penny raced to board it, hand in hand with a third-grader who
volunteered to be her buddy.

Six years ago, I wanted to run away with my little girl bundled up in her
receiving blanket to keep her protected from the world of Individualized
Education Plans and reading assessments and behavioral modifications. Today,
with gratitude, I watched my little girl run away from me.

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My daughter has designer genes

8/25/2012

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It's almost back to school time and with that comes back to school shopping. What do most teenagers want in their fashion attire? Jeans. And not just any jeans, they want designer jeans. This is usually to a parent's dismay because these come with a huge price tag. I guess that makes me lucky. My daughter was born with designer genes, and they were free.

Just recently we found out my daughter's exact genetic code. For sixteen years we knew she had a deletion, but were never told of it's specific identification. While it is relief to finally have some answers, the sad part is that the doctor's don't know what her genetic defect means. They know having an extra chromosome #21 means Down Syndrome. A deletion in 22Q11 means Velo Cardio Facial Syndrome. But the deletion that my has does not come with a diagnosis, so still we are left with many unanswered quetions.

So, what do you know for sure? We know that my daughter is one of the happiest and easy going person I have ever met. She is kind, gentle, and loves everyone and everything. She is unique. Even the Chromosomal Disorder database cannot match another person exactly like her. My daughter is a one of a kind anomaly, and I wouldn't have it any other way!

When you are off at the mall searching for those specialty jeans that will make your child look fabulous and assure their place in a specific social status, take a moment and think of those children who were born with designer genes. They want to be socially accepted too.

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Molliemae's Heart- A Down Syndrome Story

We didn't run away- A story by Amy Julie Becker

My daughter has designer genes

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