MOSAIC MOMENTS

My dear friend, Linda sends me emails every so often that she gets on Down syndrome. I greatly appreciate the stories I receive because it gives me a glimpse into other people’s lives and helps me to understand what these families and I have in common.

Every now and then, a story will stand out among the others that touches my heart deeply.

This week, when I opened Linda’s email, I read a story about a man named Dwight Core Jr. and his family. This past Wednesday, October 1, 2008, at 48 yrs old, Dwight passed away. His four sisters were by his side and I can’t even imagine the loss they are feeling right now as they prepare for his funeral tomorrow.

When I read Dwight’s story and then, saw the video that was made about him, I was touched in so many ways. In 1960, when Dwight was born, families usually didn’t even bring their babies home if they had Down syndrome.

But this family did. And they loved Dwight with all their being. And the father, gave his son his namesake. It didn’t matter to him that his only son would not carry on the family name. It didn’t matter to him that his son, in other people’s eyes, was less than perfect. It didn’t matter to him that his son had Down syndrome. All that mattered was that this was HIS son and he loved him unconditionally because of it.

Throughout the Core children’s growing up, Dwight Sr. cataloged their growing through grainy, black and white, home videos. He showed his children through his eyes. I imagine that as he was doing this, it never occurred to him that these simple recorded memories would make it to the Library of Congress in 2006.

The Library of Congress chose the film out of hundreds to be preserved in the National Film Registry. Judges called it a “loving portrait by a father of his son with Down syndrome” that represented “the creativity and craftsmanship of the American amateur filmmaker.”

The film “Think of Me First as a Person” will be featured Oct. 12 at the New Orleans Film Festival, along with a video that former Virginian-Pilot photographer Roger Richards made about the film and Dwight.

The family struggled with what the best thing for Dwight would be. It wasn’t until the 70’s that children with Down syndrome were allowed in the schools. In the 60’s and before, families didn’t have the great support they have now. Families were not given advice on how to help their children read or talk or learn. In the 60’s children with Down syndrome were hidden away and usually died early in life if there was a medical problem involved, because children with Down syndrome were not considered “worthy” of life-saving medical treatment.

The most touching part in this film for me was when the father talked about placing his young son in an institution. He didn’t want to do it, but he and his wife did what they thought was the best thing for their son. As he watches his son play he talks about the inevitable. You can tell that just the words alone break his heart.

Then, you are taken to the institution where young Dwight was placed. It truly takes my breath away as I watch these young boys, all without shirts, excitedly vie for the attention of the caregiver.

Dwight Sr.’s words about this moment in his life, will probably haunt me forever.

“The guilt feelings, thoughts of D’s future welfare, so many emotional decisions seemed to arise. We were there possibly two hours, and as we prepared to leave, we could hear D sobbing. I shall never forget the sight of that little boy, tears streaming down his face.”

I imagine Mr. and Mrs. Core walking down that long hallway as they exited the building. I imagine Mr. Core wrapping his arm around his wife’s shoulders and the tears that are streaming down both of their faces. I imagine the emptiness they both felt on that long drive back home and the silence at the dinner table that night. I am sure they questioned constantly if they were doing the right thing. But I don’t fault them for their decision. Forty years ago their choices were very limited.

I think of the day when my own son, Tim was diagnosed with mosaic Down syndrome and how I was “encouraged” to place him in an institution. I am thankful that this kind of practice in America is no longer the norm. I am sad that in other countries it still is. I am encouraged that in this century, individuals with Down syndrome have so many options and with help they can realize their dreams. I am glad to know that a child born today with Down syndrome will live a long fulfilling life because they have parents who will fight for their rights and teach them how to fight as well. I am thankful that the Prenatally and Postnatally Diagnosis Act is on its way to be a law, so families can be armed with this information and support.

Dwight Cole Jr. was truly loved. His parents, his four sisters and the rest of his family loved him very much. I wish I had had the honor to know him as well. I am glad to know that the Library of Congress choose to preserve his life through this film, because it not only documents what life was like for those families who had children with Down syndrome in that era, it also preserves the lives of those with Down syndrome everywhere.

My most sincerest condolences to the Core family.

To read the entire story about Dwight Core and view the videos (part one and part two) you can visit The Virginian Pilot. Take the moment to watch this film. It truly will touch your heart!

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