Life with MD

Muscular Dystrophy is a part of our life, each and every day.  Most days, it doesn't bother me at all.  I pick up the strongest little girl I know with her big smile and sweet little heart and my heart almost bursts because I love her so much.  I am so thankful she is my daughter, MD and all. 
Everything in her life is a challenge, but Lily's determination and sweet spirit keep her going.  She is ALWAYS smiling and happy.  She only cries when she's hurt and never whines or complains.  This little girl has taught me so much about being cheerful. 

Most days are so good, I don't think about MD very much.  Caring for Lily and helping her with even the easy tasks are just a part of our day.  It's no big deal...most days.  Some days, MD makes me want to scream...IT'S NOT FAIR!!! 

It's been one of those days.  As I got Lily ready for bed, I told her it was time to put her knee immobilizers back on.  We've given her a break from them for way too long.  Contractures are a huge part of her MD and since her knees are tight and don't straighten, she wears these braces at night to keep her legs stretched out.  She hates them but rarely complains.  As I put them on, she had lots of questions about what Muscular Dystrophy means.  As I explained why she had to wear them, she put on her brave face and did her best not to get upset.  We changed the subject and I bragged on what a big girl she was at the dentist today.  We chatted for a few minutes and then I saw the tears.  I scooped her up as she started to sob.  "It's not fair, Mama...I don't like Muscular Dystrophy".  Oh, my sweet girl, neither do I!!!

I rocked her and we both sobbed.  My sweet girl who is never upset, just needed a good cry.   Today is just one of those days that Muscular Dystrophy sucks (can I post that??)  OOPS :)  If I could give her my Merosin and make her strong and healthy, I would do it in a heartbeat!! 

 I'm thankful for everything about my Lily, even the MD.  It makes her who she is, it's taught her to be a fighter, it's taught me to enjoy every minute of life and not to complain about the small stuff.  It's made me trust God more than ever, because I know MD was a part of the plan that brought our family together.  Every day I'm just so thankful that she is ours, I can't imagine a second without her in our lives. 

So now, our pity party is over.  We've got snuggling to do...knee immobilizers and all.

My little hero!!!