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Grown Ups and Downs – A Down Syndrome Blog2019-07-21T10:46:08-05:00
mardra and marcus

In fact, sharing the theme of “What are you going to do when he grows up?” Has been my honor on sites across the globe and also ‘live’ at a Listen to Your Mother Event.

Following the “rules of blog” –  I sometimes share moments from then (we have 27 years of material to choose from) and I share moments from now. If I leave you with a question in this down syndrome blog, feel free to ask it. If I leave you with a revelation, feel free to share it. If I post a general rant or big news that has nothing to do with Marcus, well, that’s the blogger’s prerogative.

Here are some blogs or subjects to start with. Or just scroll down for our most recent adventures!

Come So Far And Yet

 

Just less than thirty years ago, I was handed a book written for parents of a new baby with Down syndrome that began with, “Do not put your baby in an institution.” Literally, this was the first line of the book.

Still, a social worker asked if we were “taking the baby home.”

Sigh.

Today I know women who coach doctors and nurses about how to share information about possible, potential, and available, instead of “put away.”

Be Beautiful, Be Yourself

Last weekend Marcus and I attended an important event hosted by The Global Down Syndrome Foundation, an organization founded out of the emotional and intellectual collision of love and anger. Many of us relate to this emotional state. More

Dignity, Risk, Harness, Support

As for me…

 

To be clear, When I look at this view I am not filled with excitement or exhilaration. I am filled with fear and anxiety.

It’s said that fear can’t kill you…I wonder.

I’ve mentioned before about my father and brothers, they often make decisions pursuing pleasure, whereas I often make decisions based on avoiding pain. In fact, I wonder if we even process pain, and the memory of pain, in the same ways.

In the strengths finder application, my brother, Tim (who took this photo) and my dad are both “Futurists” – basically it means they are optimistic about the future. And they are both, truly, visionary men with a keen eye for possibility in unique areas with incredible ideas.

The Most Generous Holiday

Halloween

It’s no surprise to me how many people we’ve met that tell us that Halloween is their  favorite holiday, and/or the favorite of a person they love with Down syndrome.

There’s a lot of theatrics to Halloween. You can be whatever you want and people are like…cool!

In my experience, Halloween is the most generous of holidays. Although it can be secular in who may choose to participate, it’s not secular on who is welcomed and included. In fact, everyone is included no matter how you look or speak. Anyone who

Legacy of Love

Immortality

One day, several years ago, my father asked me, “Why do you want to be a writer?”

“Immortality” I answered.

I think this is common for artists. Since accepting the challenge to write and share about Legacy, I’ve seen it sprinkled in many songs and art references. Pretty much the entire musical of Hamilton is obsessed with the theme of legacy.

Early in 2018, the lead singer of The Cranberries, Dolores O’Riordan, died at 46. Forty-Six. Too young. She touched many lives in her short life and her work will live on. This song, “When You’re Gone”  begins with the line, “Hold on to love, that is what I do…”

Me too.

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This was originally posted in 2018, I’m sharing again today because my FTSF peeps have asked, “

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