Tuesday morning

It’s a beautiful Tuesday morning here in Alexandria, VA.  I woke up to the sun shining and the birds singing.  I was going about my morning in bliss (ok, not complete bliss since I do have 2 kids that have a lot of needs in the morning) when I grabbed a couple of minutes to check facebook.  That is when the wind got knocked out of me.

Last night the EB world lost another warrior.  This time it was an 11 year old girl.  Her name was Hannah.

I hate EB.  I rarely express it with words, but I do.  I hate this dreadful disease.  I hate what EB does to precious kids.  I hate what EB looks like.  I hate how EB feels to my sweet daughter.  I hate the toll it has taken on her little body.  I hate that it has forced her to grow up way too fast.  I hate that, because of EB, too many children leave this world long before they should.

But on the other hand, I love how EB has opened hearts.  I love how EB has given our family a chance to share Christ and his mercy.  I love how EB has brought our family closer together.  I love how EB has allowed Christ to use his strength in us.  I love how EB has taught me never to take a day for granted...to love and cherish each day and not waste time stressing about things that aren't important.

I rarely post about people with EB who pass away, mainly because if I did then I would be posting nearly every week.  I can’t handle the emotion of that.  But this girl, something about her struck me.  I didn’t know her.  I have never talked to her parents.  Honestly, I hadn’t even seen her picture until she was already gone.  What stabbed me right in the heart was her age.  11 years old.  Only 5 years older than my sweet Ella.

At 11 years old I was in 6^th grade.  Caught in the middle of childhood and adolescence.  Anticipating Jr. High and all that it would entail.  Just starting to notice boys.  Yet, still playing with Barbie’s and enjoying a good ice cream sundae.  I spent my mornings at school, my afternoons playing with my friends, and my nights at home with my loving family.  That is how 6^th grade is supposed to be.  It is not supposed to be filled with surgeries and hospital stays, bandage changes and narcotic pain medicines.  You are supposed to eat dinner with your family around the kitchen table.  Not eat carry-out over your hospital bed while your parents take shifts staying with you.

Today I will pick Ella up from school and squeeze her a little tighter.  I will cuddle her a bit longer, and I will cover her face with a few more kisses.  I will, once again, pray my way through her bath and bandage change.  I will try my best to comfort her when she cries in pain from the bath water.  I will try to be sympathetic when she’s moving slower than usual and I’m in a hurry.  I will do all of this and more, because there is nothing in the books that says Ella isn’t next on the list.

**This was actually written on Tuesday April 22nd, but posted today, Wednesday April 23rd.