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 general public is mostly unfamiliar with something that impacts your life in ways deep and wide. It means less money designated, power wielded, and influence channeled for research and cure-seeking.  It means medical professionals may not have a great grasp on answers to the whats, hows, whens, and whys that poke at your brain and heart.  

**But what I kept thinking on this Rare Disease Day wasn’t really about that.  I was thinking about how rare it is to have the privilege of parenting a child who brings compassion, mercy, gentleness, and kindness out of the most unexpected souls.  I was thinking about how rare it is to be taught more about life and love and God and His Son through a toddler than through any other conduit.  I was thinking about how rare it is for the hope of the gospel to be preached so beautifully by someone who has never spoken a word.  (And have you ever been kissed by an “angel”?!  That’s my kind of rare!)

But I guess it’s not rare at all for the Lord to use the hardest things to do His best work in our lives.  He turns our our valley of trouble into a gateway of hope and gives us a garment of praise instead of a spirit of despair.  

One thought on “Rare

  1. Dear Kathy, My name is Carol Record and I’ve worked and grown with your Mom through CBS for about 12 years now.
    Your mother has been telling me about you and your beautiful family. She was so blessed by your recent blog entry, that she recommended that I read it … and I see why she was so blessed.
    Our LORD has indeed given you a rare and special gift in addition to this beautiful child … a gift of observation and explanation that brings encouragement to all of us as we face our particular challenges in life.
    Thank you so much for sharing what He is doing in your heart and helping us to recognize the great opportunities that He is giving to us as He allows us all to experience our own “hurdles” in life.
    May you continue to shine as the stars in heaven as you hold out the word of truth to the world through the context of your current life experience. And may your blessings continue to multiply as you allow Him to lead you all … all the way home.
    Hope I get to meet you one of these days. Your Mom is so proud of you and blessed by you and your family and she certainly touched us all deeply as she shared some of your story at a recent opening in CBS.
    Bless you dear sister,

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