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

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!

Everyone Needs Help

A Gift From the Universe to Change the World

coffee shop

My son, Marcus, and I have had many writing sessions and meetings with collaborators at our neighborhood coffee shop, particularly while we were working on his first book for children and the accompanying animated short. We also wrote the speech we gave at the United Nations building there earlier this year. Today I write solo and the notebook to my right has the lyric, “The universe is resting in my arms” (from Nina Gordan’s song “Tonight”) written and circled.

 

Gordan’s lyric took me back to the hours after Marcus was born, when nurses spoke in hushed tones while a social worker hovered outside my hospital room. Worry and doubt lay over us and between us. There was

On Becoming Marcus’ Mother

The sun shone in through the small hopper window near the ceiling. I woke up slowly and watched the sun beams that drifted to the floor. I knew it. I was a mother. From the outside I did not look…ready.

In my heart, I was. I smiled. I quit smoking.

The next week I went to the Doctor’s office for a pregnancy test. I didn’t bother buying one from the store because, well, as I said – I knew.

The test came back negative. The nurse and I spoke a bit about why I thought I was pregnant, her head shook dismissively as she wrote in the chart. I began eating lemons, friends looked at me and shrugged. Three weeks later I bought a pregnancy test at the drug store and it confirmed my knowledge. I returned to the doctor.

Why Marcus is Getting His Haircut at Home

We will be celebrating Marcus’ birthday next weekend. The big Three-O. Oh yeah! And all celebrations will be virtually shared with friends and family from our home.

Here’s the deal, you can believe your life is not at risk by whatever outside actions you are enjoying and, actually, for yourself, you may be right.

But hear this – that is not the case in our house. In fact, I live in paralyzing fear that I’m not stringent enough about our exposure factors.

Allow me to explain:

  1. People with Down syndrome are more likely to suffer further complications and require hospitalization.

Already studies have shown an 8.9-fold higher risk of hospitalization with COVID-19 for patients with Down syndrome as compared

I Cried Every Year on My Son’s Birthday

Baby!I cried when he turned one and I knew heart surgery was on the horizon. I cried when he turned five and we were fighting with the public schools. When he turned 11, and…Why did I cry when he turned 11?

I sat next to my dad and said, “My birthdays don’t bother me. His make me a wreck.”

“That’s because you’re getting old.” My father suggested with his normal tact and compassion.

No, that wasn’t it. It was the unknown. With each year we were one year closer to the great unknown: Adulthood.

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