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Mystery of Marcus

2017-02-19T16:36:43-06:00Categories: Grown Ups & Downs|Tags: , , , , , , , |

The Bates Motel asks: “What mysteries do you want to see unraveled for the future for your child with Down syndrome?” That’s a heavy question and one that I hesitate to answer via the internet. But that’s why we’re here, right? To shed light and truth. Yes, it is. SO, I will continue and you can and should look around at the blog-hop links below. This community is nothing if not prolific. :)

I purposefully waited to write my thoughts until after attending a webinar provided by the Global Down Syndrome Foundation and DADS (Dads Appreciating Down Syndrome) about research and Down syndrome. Two primary scientists spoke, I think most of it was English though I can’t actually confirm. Some of the words could have been Greek.

That’s a joke.

Mostly.

The information included a lot of talk about chromosomes, and genes, and cells and proteins, especially the amyloid precursor protein. This particular protein is a culprit and connecting factor between Down syndrome and Alzheimer’s disease. That’s the way I heard it anyway.

...

But most of that mystery, I must leave to science. I have a squishier wish than that...

I Wish I Knew

2019-05-11T15:25:16-05:00Categories: Grown Ups & Downs, Parent's Guide to Down Syndrome|Tags: , , , , , |

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I wish I knew…Oh my, we could be here a while. There is no end to what I wish I knew. To what I want to know. To what I am trying to learn and what I wish was just deposited into my tiny brain without me having to work so damn hard for it!

bubblesLately, I’ve been reflecting and noticing what I’ve learned over the last few years especially about medical and social issues relating to disability, of course, most specifically

A Short PSA to New Parents of a Child with Ds

2019-03-30T11:53:12-05:00Categories: Grown Ups & Downs|Tags: , , , , , |

screenshot-2016-09-19-10-44-05.

The Best Days Start with PBJ

Saturday launched with a peanut butter sandwich in Times Square, where we met many friends, some of which we knew before we got there, but not all. Then we watched a big screen in the city that never sleeps and saw babies we “awwwwed,” people we “Cool!”-ed, and – the man we came to see – Marcus.

Marcus on the big screen!

I don’t remember seeing him but I must’ve for the split second it took to hit record on my

Have You Met Natty and Downs Side Up?

2016-01-10T15:49:39-06:00Categories: Grown Ups & Downs|Tags: , , , |

Marcus Natty BookSometimes we just have to say: “Looky what I got!”

 

This little book came across the pond. It is a sibling’s story to share about Down syndrome and what it means to a family. Mia and her mom are doing their best to change the world and I am honored to have received a copy of their book. Here’s a bit more about the book and its release. “I Love You Natty: An Important Book Announcement.”

If you’re on

2016 The Word

2018-12-02T14:13:26-06:00Categories: Grown Ups & Downs|Tags: , , , , , |

Have you ever picked a word for the New Year?

I went to an advocacy event a few years ago, and as part of the decompressing and debriefing, we created collages and chose one word for our next year. That was 2014 and I chose the word: Create.

2014: Create

It calmed me when I fretted about things like, oh say, rejections from editors. (Don’t worry, just create more, I told myself.) More importantly, it was the answer when I wondered, “What should I do next? What should I do

Yes, I did have a Premonition

2015-08-06T13:21:47-05:00Categories: Grown Ups & Downs|Tags: , , , |

Did you have a premonition about Down syndrome and your baby? 

Well, Gillian Marchenko, thank you for asking in your blog: Premonitions and Down syndrome.

Let’s go back 24 25 Plus years ago…

As a youngin’ my life was clearly a runaway train. Of course, I could see it myself.  But that didn’t stop me from going full speed ahead.  Have you ever seen the movie Topper? It’s a great old Cary Grant classic with Roland Young playing the Topper role.  There’s a scene where Grant’s character is driving his car very fast

A Few Christmas Classics and Their Isms

2014-12-10T19:06:19-06:00Categories: Grown Ups & Downs|Tags: , , |

 christmas Marcus YAIn which I rant about a few of our favorite Christmas TV tales and their isms. Also, I learned a new word.

Ableism

Alright, let’s just get this out of the way: “Rudolph the Red Nosed Reindeer.” Yes, even as a child I was horrified. Horrified by Santa. What a jerk. He says, in words, actions and reactions, hide or change Rudolph, put him away, he is different and therefor to be hidden, changed or mocked. SANTA! But don’t worry kids because eventually

Life with Charley Book Giveaway

2017-09-02T13:06:00-05:00Categories: Grown Ups & Downs|Tags: , , , |

Before we Wrap up #DSAM2014

Click on Picture to read full disclosure Click on Picture to read full disclosure


Today and tomorrow we have special treats for you! Let’s start with a giveaway. Woohoo! I have shamelessly asked the publishers to donate a copy of Sherry Palmer’s honest and delightful read, Life With Charley: A Memoir of Down Syndrome Adoption

Fear, Loathing, and Cheerful in #DSAM2014

2014-10-10T11:07:00-05:00Categories: Grown Ups & Downs|Tags: , , , |

Free write FridayI’m breakin’ the rules today. Yes, I’m a rebel to my own rule. I’m writing with plenty of loud, melancholy pop music playing in my headphones. I don’t usually write with music that has words, cause well, words. But it’s Free Write Friday and that means we’re all about rule breaking. Ha! This melancholy music, and my favorite flavor coffee in hand, I’m surprisingly cheerful today.

I don’t know if I’ve told you, but one of the reasons I do this whole Free Write

Very Nearly Almost Our First Buddy Walk

2014-10-05T12:39:46-05:00Categories: Grown Ups & Downs|Tags: , |

Marcus and I very nearly, almost, kind of, attended our first Buddy Walk

Before I go on, I have to confess my biggest downfall as a writer, perhaps as a person if I’m truthful, is that I am incredibly selfish. Well, maybe a better term is self-centered, because it is not that I don’t care about others, I hope it’s clear from my actions that I do care about others. Where I fall short is that I notice myself first and sometimes, I can’t see past my own feelings to notice