Friday, April 6, 2012


My Silly Lily,

I watched you struggle to pick up a little throw pillow from the couch tonight.  I wanted to run and help you because it is was so hard for you.  Instead, I sat and watched you...I listened to you grunt to move it.  The same pillow that the rest of us toss around and don't think twice about, took you at least 5 minutes to move.  I loved seeing your sassy little face when that pillow finally hit the floor.   As your Mama, I never want you to have to struggle for anything, but I also realize I can't do everything for you.  You HAVE to use those tiny little muscles and make them stronger.

It breaks my heart to think of the struggles that you'll face with this new diagnosis.  Merosin Negative Congenital Muscular Dystrophy (MDC1A)...I hate it!  It means that you will struggle to lift even one pound, you will struggle for your legs to hold you up and they may never be strong enough.  One day you could struggle to breathe.  God help me, I am so scared!!  We can deal with the weakness in your arms and legs, but you are my baby, I don't want to even think about the other struggles.

You are starting to learn more and more about Jesus and it is too precious.  Dancing with you to your "Jesus songs" today was so much fun!!  Plus, I got a great workout jumping around with you in those hard pants!!  Even as we struggle, He will be with us.  He loves you so much, just like the song said...sorry Mama can't sing, but you were sweet not to mention it :)  

I love you little ladybug, so proud and honored to be your Mama!!


  1. somehow I am taken by what love...and the power of it can do!!!!

    Somethings matter....other things not so much. BUT the love that is shared by your family..priceless and everlasting.....

    good job.....loving


  2. Oh My, Just started reading your blog. Lily is beautiful! Thank you soooo much for leaving a comment on ours. Would love to chat with you about our daughters. They seem so alike! I have been praying that we would find another adoptive family journeying down this path. So many questions rattling in my brain! My email is Email me if you are up for a chat :)

  3. Sweet Lily! Thank you for sharing her story and blessing others as you do.