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Author: Amber

Anderson James / Making Things

Artwork by AJ

Amberby Amber

AJ will be creating artwork to help raise funds for those uncovered expenses. All of these pieces are hand painted by him, while jamming out to his favorite tunes and finding joy in covering himself and all his helpers in paint during the process. He paints over the art/text so the quotes and images are revealed when we remove the vinyl after he’s done painting, so there’s no risk that the design will peel or fall off, and AJ also helps seal the canvases afterwards for good measure.

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Medical Parenting / Special Needs Parenting

Camp for Special Needs Moms – Wonderland Camp

Amberby Amber

Wonderland Camp is a camp for kids and adults with disabilities at the Lake of the Ozarks. Once a year they host a camp for moms who have a child of any age with any disability or chronic condition. I heard about it from some other moms in local support groups who raved about their experience. On a whim I sent a message in to see if I could make it work to attend. I quickly got back a “yes!” response, lined up respite coverage, wrote it on my calendar, and promptly forgot about it until the week arrived.

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Medical Parenting

I Am More Than A Caregiving Robot

Amberby Amber

As medical parents, we tend to not talk about OUR hard moments. There’s a general understanding that we just “do what we have to”. We are told that we are “strong” and “amazing” for supporting our kids through these things. It doesn’t always feel that way, but we know people mean well when they say it even if we don’t believe it, so we smile – and often deflect it back with a “thank you, but my kid is the one fighting these battles.” type of response.

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Medical Parenting / Special Needs Parenting

Hospitals Will Be Making Decisions About Who to Save – And It Won’t Be My Son.

Amberby Amber

Who will get the remaining ventilators? How long should they let an existing patient with long term ventilation needs stay ventilated when that one ventilator could potentially save multiple other people in the same span of time? What level of care can be supplied with the available nursing staff? Who will get the beds that are open? Who will they turn away or decide to only provide palliative options for?

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