Living the Good Life

On a recent road-trip to central Nebraska, my son Marcus leaned back and sighed, “This is the good life.” That particular weekend there was much ado about Nebraska’s slogan: “The Good Life.” So I smiled in agreement while my mind wandered over the parallel metaphor to our world.

 

I’m sure I don’t have to tell you, it gets old defending the place you call home. Do you get tired of explaining

what exactly is good about “the good life” to those who say they could never…? To those who are filled with ill-conceived notions and stereotypes about our day-to-day? What beauties there are to see and experience?

Like many kids, I knew I’d leave Nebraska when I grew up. But the days went by and, though there were other opportunities along the way, I chose to stay. And sometimes there were circumstances that chose me instead. Which brings me to the parallel metaphor. Life with my son, Marcus.

It’s not a new idea, the metaphor of the physical place we find ourselves and our larger fate. So here we go…

On March 21^st we will celebrate World Down Syndrome Day. We celebrate because Down syndrome is part of who Marcus is. Like many families who find themselves in an unexpected place – it is not about making the best of it; it’s about celebrating the best of it.

What I’d like to share this World Down Syndrome Day, with those of you who don’t live in the place we do: It’s not what you think.

Choosing the Madonna School

Happy New Year Friends,

This Post is taken directly from the website Grown Ups & Downs

It's a shameless plug to share with everyone why we are

gearing up to Celebrate again in 2014!

School Choices Part 2 - Choosing the Madonna School

So we left off last blog at the impasse between the public school system and me when Marcus was not yet 5 years old.  What happened next is someone told me about a local school for special needs students called the Madonna School. “OK. We’ll look into it.”

 In 1995 we toured the school, a small converted church in Benson, desperate for an option…We were greeted by book pages covering the principal’s floor. He apologized for the disarray, explaining he was creating the 40 odd math syllabuses for the nearly 50 students.

“Wait-” I said.  “You don’t force everyone into three peg-hole options?” Marcus was only five years old and I already displayed battle fatigue from our public school experiences.  The idea of school staff being on the same team as Marcus, of our educating and preparing him together to face the world-that concept created hope.

The Joy of Normal

At the end of the school day, children of varied ages burst from the school doors. Some rush exuberantly, others meander, perhaps tired from the grind or maybe just too cool to run past their friends.  They climb into busses or carpools while loudly clamoring “Call me later!” or “See you tomorrow!” My son waits just inside the doors until his ride is in sight.  Very much like me as a child, always hiding from the wind, looking for shelter even during recess.

What makes this scene so great is the normalcy of it.  When Marcus was born, the concept of normal seemed to fly out of our lives.  I didn’t even get a chance to say goodbye.  Instead of a normal birthday, we faced specialists, social workers, and fear.

I was a young mother, forthright and possibly stubborn.  I did not like the term “normal.” It seemed to be the barrier between us and the great, indistinct them.  The doctors told me, “normal infants” will cry in the night; yours will not.  A “normal baby” will roll over at three months; don’t count on this.  “Normal children” will go to school and learn and play and make friends; don’t have high expectations. 

Marcus did cry in the night, and I wept with joy because of it.  He rolled over when he was two weeks old; the doctor didn’t believe me.  And he goes to a school where he learns, plays, and most importantly, makes friends. 

This is what Madonna School gives to him – the joy of normal. 

The Madonna School offers Marcus and over 50 other children a safe and nurturing environment.  He is encouraged based on his own strengths; he is educated in academic and independent living skills.  And alongside his friends, he is moving to conquer the next normal.

Please help us ensure a Madonna education is available to children who need it now and for decades to come.  Browse through the tabs and pages on this blog for tickets to our Celebration event. More information about the school and how you can help. 

Thank you!

                                                                                               (c) Mardra Sikora

A Generous Life

“Let me tell you that the world is more generous than bleak;” sings Rebecca
 in The Omaha Project song Generous*, “Love is more tangible than grief.”

“Heaven won’t hand you the life you thought you’d lead.”

"Heaven will do better, if you let her...” 

Have you noticed this too? Isn’t it the truth?

If you want to witness good in the world, hang out with Marcus for a day. For example, as I stepped off the bus in New York City, I nodded at the large man with stubbled face and bright yellow “Transit” vest. Marcus was right behind me and I turned to grab his hand. Then I watched this gruff man bend over and tie Marcus’ shoe. “Oh.” Marcus said as he smiled, “Thanks.” And gave him a thumbs up as we walked away.