Wednesday, May 16, 2012


I 'interviewed' a new piano teacher for Desirae yesterday.  She came to the house to test her knowledge of music and to meet us.  As she sat in my living room, she asked how old Asa was.  I told her 6 months and she looked up on the wall and said "And I see you spent time in the NICU with him?"

I looked up confused and saw she was talking about Rachel.  We have a big picture of the one of us all on the hospital bed on the wall.  You can tell by all the wires around us and my hospital gown that we're not posing for the usual family photo - and who posts hospital pictures that big on a wall unless there is reason for it? 

I said "Oh, that's not Asa, that's Rachel.  She is my daughter who passed away."  And I waited for the common awkward silence that always follows... I told her she would be almost 18 months old but had anencephaly and she seemed to have heard of it before.  Not many people have so it was nice to not have to explain.  I didn't even get into the fact that Asa had NICU at birth too... he was bouncing on my lap so it seemed unimportant - although looking back, very traumatic after losing Rachel.

"I asked because we're a NICU family" she said. "My son's alive, but we spent 3 months in the NICU when he was born.  He's 11 now.  He can't walk or talk, but he's really cute." 

I don't even know this woman and I felt so proud of her - and honestly, I was honored to have someone in my house who cherished life like that - who could see beyond what so many see as a problem and love her child like God does.  The dedication and perseverance it takes to raise a child in a wheel chair that seemingly has nothing to give is a beautiful and rare thing.  And I bet he is such a blessing.

I told her Rachel lived for 43 minutes.  She looked at the picture and said "And that was one of them... how special you all got to be with her."

I nodded, proving you don't have to speak a word to tell a lie. 

I figured telling her she was dead in that photo would be a little strange... especially since we're all smiling....  I wish we left the NICU with our little girl.  Leaving there without her was one of the most difficult moments of my life.  She couldn't walk or talk, but she was really cute.  I would take her in whatever condition she was in to be able to raise her still.

Some people don't get that.  Some people are only interested in a baby who will blend in with the rest of the world, be able to play sports and do well in college.  But after you've experienced the loss of a child, you come to realize what's important... and that's not it.  Immediately following Rachel's scan when we knew something was wrong, but didn't know she was going to die, the first thing I said to Matt was "I don't care what's wrong with her, I just don't want her to die."

And I meant it.  My idea of perfect changed before I even knew she was going to die.  And it will never be the same.  To me, when this woman said her son couldn't walk or talk, but he was alive... I didn't hear 'disability' I heard 'perfect'.  And I have to admit, I was a little jealous.

I'd give anything... do anything... endure anything... for just one more day with my perfect little girl.

1 comment:

  1. I have to say I don't think your head nod was a lie at all. She was alive...just not here. ;) (Thanks for the Mother's Day reminder of this fact!) I LOVE you!

    I am so proud of all you are doing to use "Rachel's 43" to leave a legacy larger than most leave behind after 90 years on this side of heaven.

    Thankful that God continues to use Rachel's amazing life impact others! You are a blessing to everyone you meet.


We so appreciate your words of encouragement!
Thank you! ♥ The Aubes