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A child wearing glasses and wrapped in a blanket is lovingly embraced by an adult woman on a comfortable sofa. Caption reads 'Personal Growth' with a green 'Read More' button below.

Personal Growth

William’s world is all-consuming. For 11 years it’s basically been my full-time gig. Actually, I think it will always be my full-time gig but I’m realizing that I can have other things in my life that provide personal reward and confidence that aren’t dependant on anyone else. I’ve written about my journey with fitness and […]

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A smiling child in a wheelchair, wearing glasses and a white shirt, sitting in a bright and cozy room. Caption reads 'Tone' with a green 'Read More' button below.

“Tone”

This 4 letter word has more power than I’d like to admit.  It rules our world! William’s tone is relentless. It fluctuates from hour to hour despite medications and well-planned routines. Everything impacts his tone – excitement, pain, hunger or him being too full, boredom, frustration, fatigue or the water being too hot or too

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A child in a motorized wheelchair engaging with two caregivers in a bright and cozy room. Caption reads 'Intellect' with a green 'Read More' button below.

Intellect

William is smart! Kernicterus impacts the part of the brain called the Basal Ganglia which mostly impacts movement. We have always been told that his intellect is likely intact. His learning is delayed because he relies solely on memory but he has the ability to learn and he knows what’s up. So we approach our

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A smiling child in a wheelchair, comforted by a caring adult, symbolizing perseverance and warmth. Caption reads 'Like a Marathon' with a green 'Read More' button

Like a Marathon

Life has been crazy. I’ve wrestled with sharing my personal story publicly, I question peoples’ interest in my story, my time has been scarce and I’ve been trying to meet the demands of parenthood and personal priorities the best I can. Lately, I’ve been waking up early and my mind rolls through all of the

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Boy smiling

Travel

Travel is something that currently doesn’t really exist for William, but it does exist for the rest of us. We don’t travel a lot and I wouldn’t call our travel “vacation.” Our travel is limited to travelling for work and travelling for the girls’ sports. When William was small, we did take him on holiday

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Parking lot with full with trucks

Amazon Over My Boy

It would be very easy for me to focus on all the daily hurdles that exist in my world of parenting a boy with exceptionalities. There are so many triggering events every single day that send negative thoughts rolling through my conscious mind, and I have to ask … why him? When William is hungry

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Child with his tutor looking at him kindly

Self Care

Over the years self care has evolved, changed, shifted and been non-existent. Self care has often felt selfish, exhausting, overwhelming but now…it feels sacred. No matter where I am at with self care, it is always the thing that makes my world feel in total balance or totally out of control. Every single day is

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