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Archive for the ‘Grown Ups & Downs’ Category

Marcus Makes the Most of Every Meeting

On Tuesday, March 21st, we met people from around the world. Marcus gave copies of Black Day: The Monster Rock Band to a person with, or a family member of a person, with Down syndrome from Italy, Algeria, Mexico, Canada, and the US.  World Down Syndrome Day at The United Nations We listened to the […] ...read more

The Video Of Marcus Speaking at the United Nations

For real. . . . If you want #BlackDayBook and Grown Ups and Downs updates, not too often – I promise, Join the Club here! . Here’s What We Said. Listening to Self-Advocates: Relate, Respond, and Amplify (Marcus parts in bold) Ladies and Gentlemen, I’m Marcus Wright Sikora.   I wrote a book called Black […] ...read more

Marcus and Moving Mountains

This last Tuesday Marcus and I travelled to Bennington, NE. We shared the animated short and book Black Day: The Monster Rock Band with the students. The kids were all in their pajamas as it was “pajama day.” And also Dr. Seuss week. So the PTO invited a local author in to tell his story.  […] ...read more

Marcus’ Big Announcement #1

You know what didn’t cross my mind in those hours after my son was born and nurses spoke in hushed tones while a social service worker hovered outside my hospital room…when certain family members chose to scoff at certain other family member’s expression of love over doom? The United Nations. On June 20th, 1990, I […] ...read more

Unexceptional Moms Interview Marcus (Video)

Guys guy GUYS!  I don’t think I ever showed you this interview. A great podcast and video interview with two moms, plus Marcus (and me too.) One mom I’ve known virtually Ellen Stumbo.  She has a beautiful blog, I’ve been lucky to guest on now and then. And now she and and Erin, another mom, […] ...read more

Mystery of Marcus

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...

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I Wish I Knew

. 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 […] ...read more

Yes, Actually, These Opinions Are My Own

I still have Opinions For some reason, I thought that with the election “out of the way” maybe the “political” posts would settle down and my opinions could be demonstrated simply by how I live my life.  However, we as a planet have entered an alternate universe and… Politics are Personal. Yesterday I watched a […] ...read more

Changing One Person at a Time, starts with me

Today the big pressure is: Marcus’ probate paperwork is due tomorrow. Shit. I’ve shared before how much I loathe the paperwork process that comes with guardianship (although I am simultaneously understanding of its purpose). Too Tired For paperwork. Travel makes me very tired. Anxiety also makes me tired. I’ve done a lot of sleeping this […] ...read more

The New Year’s Rant

. The last few years I’ve chosen to gulp up life, racing like I’m running out of time. I do feel that way. I don’t know what’s next (after this life) but I know the time we have here is precious and brief and for reasons I cannot explain, I am compelled, pushed, to make […] ...read more