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a dragon mom’s words
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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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Five Years of Waiting Rooms
Over the last five years, my son and I have spent a lot of time in waiting rooms – neurology, gastroenterology, pulmonology, surgical -...
Alden's 5th Birthday
Alden, using his talker, to tell us how old he is today. It is Alden’s Birthday today. When I ask him how old he is, he smiles silently...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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,...
Those Words
Brain Malformation Genetic Screening, upside down and bold, those words creeping across the top of the doctor’s clipboard do much more...
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...
Yes, lament
As from any blue horizon silently growing waves approaching sharpening, then foaming as they fold on and into themselves submit yourself...
Practicing Profound
Profoundly disabled. Profound, on that we can agree. And there it is, the difference, the difference between you and me. Built profoundly...
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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