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Uncategorized
kathleenganderson

Waves, something with waves.

Are we all riding waves right now? Some days we’re doing just fine, trusting God with all this craziness and feeling surprisingly sturdy, and the next day we just want to fold up and cry? I am. Today was one of the better days, and I’m putting this here to try to remember it in the next dip. (PS: Jesus walks

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Faith
kathleenganderson

Do the next thing

From an old English parsonage down by the seaThere came in the twilight a message to me;Its quaint Saxon legend, deeply engraven,Hath, it seems to me, teaching from Heaven.And on through the doors the quiet words ringLike a low inspiration: “DO THE NEXT THING.” Many a questioning, many a fear,Many a doubt, hath its quieting here.Moment by moment, let down

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Angelman syndrome
kathleenganderson

Rare

Maybe you saw it, or maybe you didn’t.  February 29th was Rare Disease Day: yet another day I didn’t know existed until this year.  Now that we have Maeve, and now that Maeve has a diagnosis of a rare disorder (Angelman syndrome affects one in every 12-20,000), this day means something to us.  Having a rare disease means that the

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Angelman syndrome
kathleenganderson

The Tale of the Scale

As we were getting ready to package and weigh some of our first orders for postage costs, Nathan and I had the same idea: Maeve’s infant scale! I’ll explain. When Maeve was just a couple weeks old, she was given that delightful “Failure to Thrive” (FTT) diagnosis. Both nursing and bottle feeding were proving to be a significant challenge for

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imago dei
Angelman syndrome
kathleenganderson

Imago Dei

There was a good bit of time, when Maeve was younger, when I still hoped and prayed that she would “catch up” and be a “normal” baby.  Maybe her difficulty nursing and eating was due only to her tongue tie!  Maybe the way she didn’t look at me or hold onto my finger with her chubby fist was a personality quirk!  Maybe I

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Angelman syndrome
kathleenganderson

International Angelman Day & Launch

Today is International Angelman Day!  Since Maeve’s diagnosis of Angelman syndrome in August ‘19, we have done a lot of listening, reading, researching, and general “soaking” in this new-to-us rare disease world.  We’ve met (in person and virtually) a slew of remarkable families who have angels of their own, and we’ve been inspired by their tireless passion for making the lives of

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