I was just kinda wondering about a few things. Like, why do we get burned out? Why on some days do I love my son’s stuttering. It’s really not even stuttering, it’s halting, starting a word, bringing it back in and reforming it. Then it all tumbles out until the next words get backed up … Continue reading Creating Space & Saving Spoons
Creating Companions
Wil (in backwards cap) & friends To see our teenagers sit together comfortably, easily, familiarly — that was the goal many years ago when we parents joined Down Syndrome Support Team. We parents were just trying to figure out what the heck this life with an extra chromosome meant. We laughed, we cried, and we … Continue reading Creating Companions
Paradoxical Path
A singular new word Wil calmly adds to his vocabulary, in a such a way that only I — or his closest educators — would hear stands out like a stacatto flashing me back in time to a movie reel loop when he was 5 or 7 or 10, working a skill on a repeat … Continue reading Paradoxical Path
Light 💡 Ranch
Not so long ago, if anyone gave Wil choices he’d pick the last choice offered. This morning I asked him, “What dipping sauce do you want? Ranch, mustard, ketchup or honey mustard?” “H — Ranch.” Wil corrected his auto-response for what he wanted. Life is full of tiny miracles embedded within everyday occurrences. Our kids … Continue reading Light 💡 Ranch
Age is Just All Numbers
Wil and I decorated the Christmas tree. It’s the first time we’ve done it just the two of us. Usually the twins are here so he’ll hang a few ornaments, but then move on to singing or other activities around us. As Wil was home sick, and we needed low-key activities to stave off boredom, … Continue reading Age is Just All Numbers
Patience v Desire to Understand
I’m not a patient person. But I’ve been called patient a lot since raising Wil. And I started to believe I grew in my patience. It’s possible I did. Last weekend Wil got stuck, and we had a very important wedding to get to. As the clock ticked I grew very frustrated. I wasn’t feeling … Continue reading Patience v Desire to Understand
Whale Starts with W
“I swallowed a marble.” I was in the living room. Wil was sitting in his bedroom adjacent to the living room. Wil often talks to himself – many of us do. It helps us better process our thoughts, and it’s the same for Wil and for many people with Down syndrome. I quite like eavesdropping … Continue reading Whale Starts with W
Got Curiosity?
My Grandma used to wrap presents in newspaper. In the opening, my fingers would be covered in smeary black smudge, but as a kid who cared? My Grandma didn’t much care either, which is why she didn’t spend time buying pretty wrapping. What was important to her was the giving. Now I look back and … Continue reading Got Curiosity?
I Wonder, Wonder, Wonder
Wil talks all the time. He talks to me, he talks to friends, he talks to himself. I wonder at the time, listening to him today, how one hesitant word was cause to drop everything and celebrate. His verbalization today was once a distant, fuzzy dream. Like reaching for a cloud that my hands couldn't … Continue reading I Wonder, Wonder, Wonder
Extra Chromosome = Extra Life
Yesterday Wil and I were driving to get his hair cut. Wil always takes my phone, searches what he wants to play on Amazon music. If he diverges from Luke Bryan he’ll say to himself, “how to spell Dierks Bentley” and type it out using phonics. Sometimes this works, and sometimes it leads to frustration … Continue reading Extra Chromosome = Extra Life