Dee.
As the new year is quickly approaching, I am asking "How has another year gone by?" Wow. Another year. So many things have been amazing for the girl this year. She is doing things never imagined...
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Type A Personality (a.k.a.) The Multi-tasker
For someone who is blind and has hearing loss (deafblind), her feet are just as important as her hands. The girl is the ultimate Type A personality, something I think she inherited from me and her dad.
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Saturday at Target
Reminder: Getting lost in the monotony of feeding tubes, suction machines and medications has taken a swipe at me. Juggling education needs verses medical needs, finding a somewhat balance has zapped...
View ArticleThe 11th Christmas...
On the 11 Christmas, our girl enjoyed opening her gifts for the first time. Where she keeps holidays, especially Christmas (and Easter), real and grounds us in the purpose of the season, it was fun,...
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'Ivey'tude...when the stool is in her way
Mobility and language. She is so very 'finished' with the stool in her path. Not to mention that she is dragging the feeding pump behind her. Pre-teen life in our house. She's told me she was...
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The Animal Shelter
The final synopsis. The dogs were loud. She didn't even want to talk about the cats. The snake. That snake was her favorite.
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Teeth & A Port
Given that Ivey has a cleft palate that was pretty severe and extended far into her soft palate, even after repair, and years later, it has left her with some precarious cranial and teeth issues. So...
View ArticleDoes She Talk?
The thing about the term "nonverbal" - it isn't always accurate. Technically, it's a terrible label. I always get a little, how should I say this, perturbed when someone calls Ivey 'nonverbal'. You...
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The Price of Good Intentions
Last night I got my girl bathed and dressed for bed. Our usual nightly routine. Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day...
View ArticleAnd When This Passes, Remember Us: Thoughts on The Church in the Midst of...
And when this passes, families living with a someone with disabilities and medical complications hope our church families and congregations remember the isolation and loneliness they felt not being...
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Living in a Pandemic
Living in a Pandemic has made for interesting times. In the beginning, I panicked just as did the rest of the world. I read anything I could get my hands on. I tried as I might to weed through the...
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Unexpected Lady in the Parking Lot:
It's 2 am and I am up replaying one particular event of the day. It's one of those things that my mind holds tight, edging itself in my mind in a way that most people don't give a second thought. But...
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When You Can't Leave the Past Behind
Today Ivey and I will head to Emory. Specifically, we are heading to Emory's Department of Human Genetics. We are going back to hopefully find answers to a question that has materialized in the past...
View ArticleSevo (vs) Propofol.... Crisis Averted: Ivey's Hearing Update...
I used to say, "Life with Ivey is a rollercoaster ride." Scratch that. It's nosediving in an airplane where she pulls up on the controls in the last second just before crashing. We have updated...
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Submitting to Lack of Control
When Ivey was a baby, I literally had drawers and spaces in her closet labeled, everything had a space, a place. One special friend loved showing off Ivey's closet to newbies coming by for a visit....
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