FamilyColumbus

  • Subscribe to our RSS feed.
  • Twitter
  • StumbleUpon
  • Reddit
  • Facebook
  • Digg

Friday, April 5, 2013

This Little Miggy

Posted on 2:59 AM by Unknown
 her toes, 2008

In February I found myself wondering what we could do for Rare Disease Day, how we could reach a broader audience with information about Batten Disease.  I've been reading This Little Miggy Stayed Home for a few years, and have enjoyed the special needs spotlight series Miggy shares each week.  I wrote to ask whether she'd consider a posthumous spotlight.  We're there today, sharing Celia's story.  If you read here, you already know it, but perhaps you'd like to visit Miggy anyway.  She documents some of her own creativity - sewing and painting and decorating - but she mostly features her daughters in her writing about day to day stuff.  We're so grateful to Miggy for sharing her space and allowing us to stretch the circle of people who know about Celia, and about Batten, a little wider.
link
Email ThisBlogThis!Share to XShare to FacebookShare to Pinterest
Posted in | No comments
Newer Post Older Post Home

0 comments:

Post a Comment

Subscribe to: Post Comments (Atom)

Popular Posts

  • At Art
    Every day these boys look a little more like a miracle to me.  JEB
  • Raising Awareness (and raising empathetic children)
    Celia is lucky to have so many friends who give voice to the fight against Batten Disease.  We are fortunate to know so many of you will, to...
  • Party of
    We're home today.  Although all of us haven't been together at once yet, when the baby moved from abstract to tangible so did the i...
  • Revelation
    Life doesn’t always feel like smooth sailing along heaven's highways, but more like daily grinding through a maze of back alleys elsewhe...
  • Do Dad
    Among the millions of things he does, Andy keeps the cupboards full, the dishwasher empty and the boys happy. Father's Day 2012
  • Poppy's
    A trip, as told by Tuck: I go to Poppy's house.  I ride the cycle and my throw rocks over the bridge.   I see a  rabbit.  I see a chicke...
  • Gets to Go
    There is none of the stale “I can’t believe my baby is going to school.”  None of that, which I find particularly irritating and only slight...
  • Yesterday
    I asked the question half in jest and whole in earnest.  Could things get worse? Yesterday was hard.  The kind of hard that made my limbs f...
  • So Grateful
    It's a complicated thing, to be grateful for something you wish had never happened. It doesn’t change the power of that gratitude but i...
  • when listening feels kind of exhausting
    I stepped outside this morning, having sent the boys ahead while I strapped on my own shoes, and caught Tucker, head raised to the sky, yell...

Blog Archive

  • ▼  2013 (118)
    • ►  September (8)
    • ►  August (13)
    • ►  July (15)
    • ►  June (11)
    • ►  May (16)
    • ▼  April (15)
      • A few words
      • Sunday in the Swamp
      • His attachment grows less to me and more to the wo...
      • Fun things to do
      • Outside
      • Little Shadow
      • a month in moments
      • Erf could probably use a hug.
      • let there be
      • Want some?
      • every beautiful thing
      • He claps, but I may be his biggest cheerleader.
      • This Little Miggy
      • Spring-ish
      • getting up
    • ►  March (14)
    • ►  February (14)
    • ►  January (12)
  • ►  2012 (178)
    • ►  December (12)
    • ►  November (15)
    • ►  October (18)
    • ►  September (14)
    • ►  August (14)
    • ►  July (14)
    • ►  June (14)
    • ►  May (17)
    • ►  April (16)
    • ►  March (14)
    • ►  February (16)
    • ►  January (14)
  • ►  2011 (176)
    • ►  December (16)
    • ►  November (15)
    • ►  October (16)
    • ►  September (17)
    • ►  August (14)
    • ►  July (13)
    • ►  June (17)
    • ►  May (14)
    • ►  April (13)
    • ►  March (16)
    • ►  February (14)
    • ►  January (11)
  • ►  2010 (28)
    • ►  December (17)
    • ►  November (11)
Powered by Blogger.

About Me

Unknown
View my complete profile