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photo by @hannaodras

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She’s baaack 🥳

This is a photo of Eloise on a potty. “Wait. Where is the potty?” You ask. It’s underneath Eloise who is contained by a banana box. “But why is Eloise in a banana box?” You wonder. Because making a daily schedule filled with stretches, time in her stander, making her walk from place to place,…

Getting (some of) Eloise back

Once upon a time, we were new parents and freshly grieving Eloise’s diagnosis. I’d found groups with kids like Eloise and seen all kinds of videos and photos of older kids with overlapping genetic deletions and it felt like my worst nightmare had just happened. I remember collapsing in the shower one afternoon, picturing a…

We should get her out more

Once upon a time, any trip outside our home ended in a complete Eloise meltdown. It didn’t matter if it was quiet or loud, light or dark, inside or outside, cold or hot, or she was carried or pushed — Eloise couldn’t handle it. As she grew older, however, things changed and it became the…

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