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| Nurses always called her Angel, because of her big eyes, ready smile, and strawberry blond curls. |
August 2nd marks the 41st birthday of Bethany Joan Marie, Erin's older sister. Both had the same neurological condition that slowly weakened them.
Bethany sat up on schedule but lost that ability. That meant she was not retarded but suffering from some degenerative neurological condition. The Cleveland Clinic and its associates in medicine were never able to arrive at a diagnosis. We had to deal with profound ignorance on the part of many, from doctors to nurses to social workers and minsters. That is why we wrote Angel Joy.
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| Holding up her head was a normal developmental benchmark. Bethany propped herself on her elbows too, but lost that ability. |
Bethany had big smiles for everyone, and her favorite nurse, Ida, just adored taking care of her.
Ida's favorite story was feeding baby-food beets to Bethany, who spit them out into Ida's face and laughed. Ida was delighted that her little charge could muster the strength and humor to offer a critique of beets.
Bethany loved to hear the beets story, over and over again.
The clergy in WELS used our daughters' terminal illness against us - not just in Paul Kuske's reign of terror in the Michigan District, which voted him out of office. Mark Schroeder's pals do the same thing, and the synod president supports them. A pastor must be a particular brand of vermin to engage in such tactics, but it only shows a vulpine lack of character behind an ovine mask of piety.
Bethany and Erin taught us to see the eternal life side of life, which is a constant Gospel message in the traditional liturgy and classic hymns. They suffered from bad medicine, foolish do-gooders, and their disorder, but they also had their guardian angels, many of them human, who showered them with love and got even more love back.
They received so many gifts that we gave giant bags of toys to various charities to share with others. Some decided the girls needed the very best clothes. Bethany and Erin loved their finery and the attention it drew.
The girls could not speak or turn over, but they knew how to communicate, through their eyes, smiles, laughter, tears, and outbursts. Once Bethany threw a tantrum in my arms. I asked, "Is that how you get your way around here?" She relaxed at once and laughed.
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| Bethany, Little Ichabod, and Erin Joy. Bethany always looked at the camera. We had Martin avoid the flash reflection. Erin was grinning at her mother. |