Size Matters When You’re Growing Up Giant, on Mamalode.com

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  Parenting makes us protective from day one. When our kids are couch surfers and becoming teetering toddlers, we get expert at assessing risk from their perspective. Out go the pristine sharp-cornered glass-topped tables and the décor items that can be gummed, swallowed or face-planted on. We go to exhaustive and embarrassing lengths to prevent […]

He Has His Own Definition of Forever, on Mamalode.com

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  I call them the Invincibles: those teenagers who walk across parking lots and streets in defiance of the “look both ways” that you can be certain their parents repeated laboriously to them as toddlers and preschoolers. I see the Invincibles stepping off of sidewalks, with hoodies pulled up and forward like the blinders on […]

When You Say No To Support — Mamalode.com

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“Through all of this, I stopped knowing who I was. I lost myself. Parents of kids who live with chronic and critical diseases and disorders are not quite whole anymore: they are assemblages of limitless energy, capable of morphing and moulding into whatever the medical system and their child’s symptomology demands. Rare disease Moms are […]

Becoming More Than Mom — Mamalode.com

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“I didn’t know where I’d find the words, but I was sure that anything I uttered after “you have a brain tumor” would just be white noise. I rose in the morning and fell to sleep at night spending every waking moment protecting my sons’ health, safety and happiness. My message, and these words would […]

When Unremarkable is a Good Thing

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My family has been staring down rare disease, arming ourselves against the regular onslaught of bad news for a long time. When you’re hit with a rare disease diagnosis…. When rare disease invites itself into your house and won’t leave… When your notion of normal becomes permanently tinged with a “but”… you live differently, more […]

Getting to Okay (for Throwback Thursday)

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(written in May, 2009 just days after my son survived two high-risk surgeries) There are so many flashes of pride as a parent. They are flashes, brief pulls of heartstrings, little twists in the gut. I have been more blessed than some, I know. I’ve had more time with my sons than others. I am […]

Write to Prime the Pump that is your Memory

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We all feel our memories are fading.  From an early age, our memories are selectively taking things from the ‘active’ file, shifting them to the ‘for later’ file, and sneakily moving details to the permanent ‘archive’ from where we fear we will never retrieve them. I’ve got news for you – the memories are there.  […]