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!
My mother’s things are in disarray all around me. Her sunglasses are in the center console of my car. Her signature “Betty Boop” coat is draped over my back seat. Her purse is next to the couch in my family room.
The clear baggie (fancy hospital luggage, I call it) holding her pictures and coloring books from her bedside is on the floor under my kitchen counter. It’s next to Christmas gifts we haven’t yet put away. Her health took an emergency turn just before Christmas, really, and my time quickly segmented into caregiving, staging/transporting, waiting, watching, planning (pointlessly in many cases, but it’s what I do), work when I could, and then the rest of real life…
When she died, taking that clear bag of her things and rolling her blanket into my backpack, it was all very
One of the things I love about my son is his ambition. His dream of creating and starring in his own Broadway Musical is never daunted. Last time we went to the theatre to see a Broadway Across America production he stood in front of an empty poster frame and gave me the thumbs up. “This,” he told me, “Is for Marcus the Musical.” He believes in himself and this dream.
The fact that he can’t read a script doesn’t concern him, he's preparing his own. The burdens of official training in the areas of playwriting, acting, stagecraft, and so on…not an issue.
I would never, ever, tell him he won’t, or worse can’t, reach this dream. His passion is clear and he spends both waking and sleeping moments working toward this.
Another 23 year old without training and facing the uphill, dare I say impossible, mountain of learning and struggle, would likely give up. In fact, most young people are talked out of their dreams and move on because they “know better.”
The Goodbye Girl movie credits scrolled on the TV in my mom’s hospital room just after she fell asleep on Monday. I sat next to her as the song played:
Goodbye doesn’t mean forever.
Goodbye doesn’t mean we’ll never be together again.
I left for a few hours for an event with Marcus, we came back to the hospital after.
She was asleep. I talked to the night nurse a bit and told her I’d be back the next morning, but we agreed she would call me if I needed to come earlier.
Marcus whispered, “Goodnight Grandma” as we left the room.
After the funeral Saturday, Marcus he told us he’s thankful that Grandma Sam is “not confused anymore.” He helped me several times with my mom over these past several years as her lucidity came and went.
Today he said he’s also thankful we
Right now I feel both drained of inspiration and full of emotion, which seems contrary because inspiration is borne of the rawest and truest emotions.
Inspiration when you’re empty.
I don’t know. I feel very empty.
Yet, I realize that all of this…all of this experience, these moments of reflection, hard truths, and harder lived lies. These minutes that alter between cleaning up, caring for, enlisting help, and often just watching…that seep into numb hours, still provide learning moments.
The textural backdrop that fills in everything which connects us.
Inspiration, as another concept of the muse, is a gift when it comes. Sometimes inspiration can be promoted, like with a prompt or a deadline. Like many writers