In our window...

If you were to drive down our street tonight, and past our home, you might see the soft glow of the lights from her Christmas tree in our window.

If you were to stop outside our door, and pause for a moment, you might hear the sounds of her carols softly playing.  The same Christmas carols she's been falling asleep too almost every night since we brought her home.

If you stepped inside the door of our house you would smell the sweet fragrance, you all know my favorite by now, coming from her playroom.

Those are the beautiful sights, and sounds, and smells...coming from our house on this night.

If you stayed for very long, you might be comforted as I am by the above, and my hope is that she is too, but I'm afraid you would also see and hear things that would break your heart as they are breaking mine.

Tears are falling.  Some silently some not so silently.  We all have our moments that we spend crying.  Some as we sit next to her bed.  Others while we hold her hand.  Lying next to her, listening to her every breath, causes each of us to cry.  I'm lying on the floor of her playroom.  Resting on the rug that she has spent so many hours playing on.  I look up at the ceiling and I realize how peaceful it is in this room and that brings a smile to my heart.  She's had a beautiful view as she's fallen asleep after an afternoon of play in this very room all these years.  I'm thankful we were blessed to give her that.  I can only imagine the dreams she has dreamed as she napped underneath the branches of this tree.  I smile at the remembrance of the many days I would peek in at her lying asleep in a pile of books, or dinosaurs, or toys.  

Ashley Kate is not going to recover.  The very knowledge of that fact is destroying me.  She has crossed a line and without a miraculous move of the Father's will she is going to lose her battle.  I so desperately wanted for her to show them all, the whole world, every doctor, therapist, social worker, and nurse who ever said to us the words "failure to thrive", "chronically ill", "developmentally delayed", etc. that they were wrong about her.  I wanted her story to be so different.  I wanted her to triumph.  I wanted her story to be one of survival.  I wanted to keep my baby.  I really did.  We never really accepted anything other than a happy ending.  Despite it all.  All the predictions.  All the negative.  All the struggle.  We thought she would make it.  If we took care of her, and loved her, and provided for her...she would make it.

As I listen to the struggle, and watch the changes in my daughters body, I now know that she is not going to make it.  We weren't able to do anything to save her.  Loving her is not going to make her whole.  She will never be whole.

I lie awake at night and think thoughts that I never imagined I would have to think.  I realized that once she leaves us there is no one in Heaven who knows her.  I struggled for days and days with that thought.  Who will love her...and who will greet her...and who is waiting for her there....there is not another soul whom she knows that is there.  Every person in her life whom she has ever loved is still on this side of Heaven and my heart was breaking as I struggled and searched for who I might know who is there that actually knew and loved my baby.  Two days ago it came to me...our pastor...he knew her...he loved her...her prayed for her and over her...he held her in his arms the day we brought her before the Lord...he is there. I searched and found the pictures of her in his arms as the church gathered around her to pray for her.   He knows her.  She will not be alone.  She will have someone who actually knew her and touched her and kissed her precious face.  I know it sounds crazy.  I know it does, but this is what comes across the mind and heart of a mother who is so broken that I fear will never be made whole again. My heart hurts so deeply.  I never knew I could feel such desperation, or pain, or fear.  Still I know it will become even deeper the moment she leaves us.  I don't know that I will survive.  When the pain inside of you is so deep that it becomes so real it makes you physically sick.  Have you ever been there?  Do you know what I'm talking about?

My world is a mess.  Its a mess of wanting to never leave the walls and the safety of our home again, but knowing I have to keep going out there because I have three children. If not for Blake and Allison I assure you I would never step out the front door.  Because they deserve to have us too, we keep going out there.  Its the hardest thing I've ever done...leaving Ash inside while I step out across the street to the school.  I go because I never want to look back on this time and realize that I did them wrong.  I go because I want to have no regrets.  I go because they are important, and loved, and treasured just as deeply as their baby sister.  I go because they have no choice but to go and how can I ask them to keep on if I refuse to keep on?

The days are hard.  The nights even harder.  I have no idea how much time we have with our sweet Ash.  Only God knows if and when He will take her.  The one thing I do know is that if you could look into the windows of our hearts tonight you would see that we are broken.  Shattered.  Destroyed.  Our hearts are aching.  We are so very grateful for your prayers.  So grateful.