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.
The Lord is faithful to all His promises and loving toward all He has made. The Lord upholds all those who fall and lifts up all who are bowed down. Psalm 145:13-14
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!!