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Category: Shiny

Things pertaining to my middle child, her special needs, 4q deletion, mitochondrial dysfunction and other issues.

Parents as researchers

In response to this article because I get Shiny’s story out when I can in hopes that it will give other parents the oomph to look past what they’re told:  https://www.propublica.org/article/muscular-dystrophy-patient-olympic-medalist-same-genetic-mutation I am the mother of a child with a rare chromosome deletion. Watching her…

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R-lipoic acid–FTW

Oh my god. I may be saying that for a while. So those who’ve been following our journey since Shiny was one know how significantly she has been impacted by supplements. And how badly she can be affected when a brand isn’t up to par.…

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Ridesource

So we’ve been using Ridesource (special needs public transport) since December. While it does save me driving, it has been a MASSIVE hassle. Top on the list is child safety seats. Technically Shiny is allowed to ride with just a belt. In practice, the belts…

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Objectively hard

My sister used those words to describe Shiny the other day. “She is objectively, genuinely hard, for anyone.” Today the kids had respite together at The Arc. I was told years ago that “ARC” stands for Association of Retarded Citizens. Now they’re just The Arc.…

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Trudge trudge trudge

In the morning I go to drop both kids off with a woman far more competent than I at this whole parenting nonsense–she handles Miles and Shiny and her four and five year old and sometimes a couple neighbor kids and she’s SIX MONTHS PREGNANT.…

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In the desert

So when Shiny was born, we did not go to Holland, but instead were dropped in the desert.  We eventually found a well, and managed to put together a dusty little life with just enough water to get by most of the time. There were…

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This was sent to me by the people who sent Shiny home from camp last week. This is the inside. Remember these are the people not trained to wipe butts. Nor, apparently, to have any tact whatsoever. I’m feeling very worn right now. This is…

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