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Marcus Sikora Global’s 2017 Ambassador Video

2017-11-26T09:50:00+00:00 Categories: Grown Ups & Downs|Tags: , , , , , , , , |

Marcus’ Big Night

at the Be Beautiful, Be Yourself 

included a tribute video.

To start with, Marcus gave a speech in front of 1200+ people under the spotlights. (That speech is here). He spoke to journalists and faced the flashing cameras on the runway. (One of my favorites is here). And he ROCKED the runway. Marcus and the Stars!

Like most successful, public events, it came after a lot of practice. He practiced his speech. He practiced his model “moves.” It also helps how many big events he has been a part of this year, TV interviews, speaking

Actor, Singer, PB&J Connoisseur – Introducing 2017 Be Beautiful Be Yourself Ambassador: Marcus Sikora

2017-09-21T10:32:46+00:00 Categories: In the News|Tags: , |

From the Global Down Syndrome Foundation official release:

As an author, singer, actor and self-advocate, Marcus Sikora has already accomplished more in his life than most other 26-year-olds. Now he’s gathering yet another accomplishment as the 2017 Be Beautiful Be Yourself Ambassador.

When it comes to describing the Nebraska native, many people tend to use the word creative. The description aligns perfectly with Marcus’ ambitions, in 2015 he released his first animated short and children’s book Black Day: The Monster Rock Band to wildly positive reviews.

“I’ve always liked to make stories,” Marcus

Another Poem About the Truth

2018-04-16T16:50:18+00:00 Categories: Grown Ups & Downs, The Innocent Prince|Tags: , , |

The truth is
people born with 47 chromosomes have been locked away
left alone and died alone
in voids of confusion and loneliness
throughout history and throughout the world

The truth is
Some still do

47 chromosomes
do not preclude a human from learning
from feeling
from reaching for more

Science can see this trisomy
before a mother
feels her child developing
Science cannot see possibility
Science cannot tell the future
Neither can you
Neither can I

The truth is I need help
to facilitate my son’s reach
toward his potential
The truth is he has dreams for his future
do you have dreams, too?

The Promise – We Belong

2018-02-23T10:50:40+00:00 Categories: Grown Ups & Downs|Tags: , , , , |

Wedding days are full of promise.

Promises made and promises kept.

This picture is from Quinn and my wedding day and it speaks of promise like no other.

Pretty much the universal favorite pic from our wedding day. Quinn and Marcus.

 

Sure, there were promises, vows – you know, between Quinn and I. However, those are the obvious ones, the “givens” of the day. The look between these two, it speaks to our life together, to comitment, to belief, to trust – this, my friends, shows a lifetime of promise.

Cure

2018-02-17T12:47:38+00:00 Categories: Grown Ups & Downs|Tags: , , , , |

“If you could cure…”

I stopped him, “That is not a fair question.”

The scientist raised his eyebrows.

How can you speak of “cure” when the issue in discussion is in every cell of his body?

What does it feel like to have 47 chromosomes? I wonder. Does it feel different than 46?

Every cell in our body contains our chromosomal makeup.  Cells constantly regenerate, each set (or triplicate) of chromosomes generating and regenerating as well. Sometimes cells in the typical population, triplicate the 21st chromosome, here and there. But it’s scant –

Learning to Celebrate Love

2018-03-31T14:09:46+00:00 Categories: Grown Ups & Downs|Tags: , , , , , , |

Bringing a circle of support around two people is beautiful. My favorite weddings combine celebration, tradition, and personality, with the rituals chosen on purpose, a specific and unique start to their new adventure together.

Last year we went to the wedding of my dear friend, Christine. The small congregation of close friends and family spontaneously sang her down the aisle of the small chapel. The scene was gorgeous on a beautiful island off of Seattle. It propelled me to live like we have 100 Junes.

 

Also last year, my youngest

Legacy of Love

2018-02-09T10:57:57+00:00 Categories: Grown Ups & Downs|Tags: , , , , , |

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.

Only a few weeks ago 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

Dear 2018

2018-01-06T17:47:18+00:00 Categories: Grown Ups & Downs|Tags: , , , |

In 2015 I said, I want it all. (Also, I said Publish)

In 2016 I said, Purpose.

In 2017 I said, Patience.

In 2018, I say: Produce.

(Also, Stretch. And Clear. But these aren’t as alliterative, so they’re forced to be a subtitle.)

Dear 2018,

I’m still a little tired from 2017, recovering from a good, no – more than good, a seriously incredible line-up that 2017 delivered. (Holy cow, where do I even start on the links? Try this.)

Every year I say I’m scaling back on this or that, every year my husband doesn’t believe me, and I defend that

Some of the Marcus Equation

2017-12-17T12:58:32+00:00 Categories: Grown Ups & Downs|Tags: , , , , |

When you have a child with an intellectual disability the tests come early and often. Medical tests, intervention tests, IQ tests.

IQ tests are the worst.  On the parents.  I’ll never forget Marcus’ first IQ test, he was three. He communicated mostly with action/expression and sign language. But not that day, well I take it back. He was clearly communicating, just not compliant. An important differentiation that, as his mother, I could see but the Ph.D. in the room clearly could not, Or did not.

One moment that stood out, the psychiatrist held before Marcus a doll with its head off, laying

How Alike Do We Have to Be?

2017-12-11T20:00:41+00:00 Categories: Grown Ups & Downs|Tags: , , , , |

In about 5th grade I thought, “I hope when I have a daughter she’s not too pretty. Pretty girls…they don’t understand anything.”

In fact, when I was pregnant, of all the things I feared, I feared having a daughter.

##

I had one big birthday party when I was 6. It was a whopper, my whole grade was there. We ran across the lawn with raw eggs on spoons. There was a huge array snacks and more games. A long table made of planks and concrete blocks, perfect for 6 year olds to fit around. The radio was