Tag: challenges for families of disabled individuals
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“No Pressure”
Andy and I watched Encanto for the first time this past Sunday, broken into sessions wrapped around the chunk of hours I needed to work with a new habilitation provider. As I listened to Luisa sing “Surface Pressure,” I felt how aptly and concisely it seemed to capture the way I feel so much of…
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Revisiting Moments of “Grief and Rage”
Nearly 3 years ago, I shared with those of you reading our blog at that time some words of the hilarious guitar goddess Mrs. Smith to describe some of my feelings about some of the things people say to us about the circumstances we are in. At that time, I shied away from saying that…
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February Gratitude & Some Reading
To Eowyn The razor thin edges on so many words, the shattered shards of a strong divide, coated thickly with the dust of nearly a decade replaying only echoes of it all… a formidable array of obstacles that would have dissuaded many from trying to bridge such a potentially jagged and emotionally fraught gap. Thank…
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Key Moments From Our Latest COVID Quarantine
Andy actually wasn’t the first person in our family to develop symptoms, nor was he the source of our exposure- though he was the only one to be PCR tested because of his job. Two days after I got my new piercings, our sweet Hannah had brief unmasked contact with her boyfriend…who developed symptoms the…
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Navigating The Stress Of Allergies, POTS, And All Things Health & Being Needed On The Therapy Team
For nearly a year now, I have been bobbing up and down on the waves of life, trying not to get swamped or washed overboard as I navigated managing my health and maintaining the active role I must play in all of Tony’s therapy programs that transpire outside of our house. These programs are essential…
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“Bring Me [Back] To Life”
The past several years have felt like life coming at me as I stood, like Amy Lee in the video for Bring Me To Life, on one circumstantial ledge after another, trying to climb up from an effort to solve one problem to a solution for the next. And every time I get to that…
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Not This Year
I am often asked what my plans are for Tony in terms of public or private schooling, especially around this time of year when school age children are typically headed off to one classroom or another. In previous years, my answer was there were important behavioral concerns we were addressing in therapy at home that…
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Maybe Someday
A few weeks ago, I resumed active participation once a day in community safety walks for Tony with both Casandra and Emily. We had told Tony that I couldn’t run yet, and he was trying his absolute best to control his urges to sprint ahead. During our first walk back with Emily, she asked me…
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On Life in a Snow Globe
Two weeks after I stopped shopping at Amazon, I made the mistake of putting up one of my e-mail addresses on our family’s profile…and then promptly took it down a week later because all I was getting were vendor requests and one person who admitted after several back and forth exchanges to being a curiosity…
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Mylan & Insurance Providers: Shame. On. You.
Sometimes life can wrap itself around me and suck upon any eloquence I had until only crusty cracks of effort remain. The past two weeks have certainly left me feeling artistically desiccated and a bit more to the point. So let’s get more briefly to it… This was me, the morning I wrote my last…