I know you’re weary. I feel it, too. I feel it deep in my bones before my feet hit the floor in the still-dark hours of the early morning. I feel it... weariness. I'm so tired of a broken world full of darkness unspeakable. Tired of shoulders hunched from the heavy load of caring for family. My cheeks are red from the frustration of mothering a child with special needs and a teen struggling … [Read more...]
Bittersweet Autumn
Bittersweet autumn. The world changing color before our eyes. That certain slant of light, tinging the clouds with violet. The smell and crunch of leaves underfoot. Pulling out all things warm and snuggly - sweaters, hoodies, down comforters, and fleece throws. And yet, the shadow of winter hovers just ahead. Bare trees. Cold winds. Sleet. Ice. Snow. And darkness. So many hours of … [Read more...]
For parents who aren’t ready to celebrate Down syndrome during Down syndrome Awareness Month
For parents who aren't ready to celebrate Down syndrome (This is a post author Gillian Marchenko (Sun Shine Down) shares every year in October for Down syndrome Awareness Month. If you are a new parent or a seasoned parent to a child with Down syndrome, wherever you are in the journey today, Gillian is here to tell you it is okay.) I read a blog yesterday from a mother of a child … [Read more...]
Understanding the Privacy Gap
For those of you with a son or daughter who requires 24-hour care, you know exactly what I'm going to talk about. It is something that those outside of this demographic take for granted. It is something called "privacy". We have very little of it in our world given all of the caregivers in Ben’s world. Without question, these important team members have helped to lighten our load and give Ben a … [Read more...]
Anxious Minds
“I have a theory about Caillou,” Noah says. I have been bent over, picking things up in the front hallway. My three have been away from me, testing the patience of my parents for two weeks while I've finished my next book. So this mess, today? I’m okay with it. It’s proves they’re here. And I’ve missed them fiercely. “Dying, huh? Well, this should be interesting.” I stand up and face him. I … [Read more...]
Running on EMPTY
Seeing the red light blinking that I’m almost out of gas and having a mini panic attack knowing how much farther I need to drive is how I feel when I’m depleted emotionally and physically in my care-giving responsibilities. Even an avid, well seasoned, and trained runner might say some of the same things we do, when we realize we’re running on empty: “I’m SO tired!” “I can’t do this … [Read more...]