Pregnant After Rare: Week 30
“Congratulations!” “Thanks,” I respond, with a slightly strained smile. I am excited, right? There must be excitement, mixed in with all...
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a dragon mom’s words
Welcome.
An especially warm welcome to all you who’s lives have been altered by a child’s diagnosis - I see you, you are not alone!
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Time travel in the MRI suite
Returning to the MRI suite today was like walking into a memory. Three years ago and just to my left, I was sitting on a hospital bed...
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Family Planning
Opaque, a future like dirt inert but teaming with potential I squint as if I could see as if all the plotting could control what creation...
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Wheelchair Fitting Day
What is here today? Gratitude for the professionals that are guiding us while also respecting our wishes. Joy with all the trim options...
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Alden Update: 2 years old
Alden continues to show slow, but steady, advances. In gross motor skills we have seen increasing trunk stability leading to sitting with...
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West Bay
It is the last day of fall and definitely winter. The calm reveals the immense shifting, the vacillating energy under this copper green...
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Discovering The New Playground
We are rounding a turn when my daughter asks, “Will Alden talk when he turns one?” “No honey.” “Why?” “He’ll still be just a baby.” Eyes...
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Your Lineage
Following ancient patterns our minds traced cycles around the moon to the moment that led to the creation of you Emerging from a mosaic...
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Diastole
phase of the heartbeat when the heart muscle relaxes and allows the chambers to fill Today I offer an appreciation to the lub-dub...
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Main Street
Checking for atypical movement I peer through the window of the jogging stroller to see skinny little legs bouncing with each bump as we...
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The Great Gamble
Some time ago, we rolled and rejoiced, together in the rush. Laughing between wrinkled sheets, we knew our future to be flush. Now, how...
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A wet hammock
Simple twine reshapes the dense spring air into diamonds around and under us Held by this cradle of rope of tall trees of a heavy,...
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Those Words
Brain Malformation Genetic Screening, upside down and bold, those words creeping across the top of the doctor’s clipboard do much more...
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If you have never been
then please do not welcome us to Holland for you know nothing of the turbulence as we touch down unpleasantly surprised, nauseous and...
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Yes, lament
As from any blue horizon silently growing waves approaching sharpening, then foaming as they fold on and into themselves submit yourself...
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Practicing Profound
Profoundly disabled. Profound, on that we can agree. And there it is, the difference, the difference between you and me. Built profoundly...
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Failure to Thrive
For a while now, I have noticed the inky dots that doctors track flat lining. Despite all the mashing and blending straining and scooping...
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Every Three Hours
With a grin, he locks eyes and utters, in quick succession, little coughs; clearing his throat perhaps, requesting dinner, thrilled....
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Burn
With each moment, I might be a phoenix or smoldering ash as I cycle through my rage my sorrow, love, regret my sweat Mind shape-shifting...
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