We don't know how long our sweet Ava Bean will be with us. This has always been true, but we have never known so clearly that every day and every moment we have is a gift. In the past week, Ava turned 11 months old. She has lost the ability to eat by mouth and her brain is having more and more difficulty telling her body to breathe.  Many times a day she needs us to rub and stimulate her because she's starting to turn blue from the lack of oxygen.  She hasn't opened her eyes for more than a fleeting moment since Matt arrived home on Friday.

These are the signs of Alexander's Disease--too many astrocytes, cells filling up her brain, robbing our little one of her most basic abilities. Because Ava's disease is so rare, there is no path laid out for us. There is no one with whom we can compare stories or to whom we can look for more information.

Ava's hope is in the Lord alone.

We continue to pray that God would heal her in a way that would bring Him the most glory. It appears that He is taking her home.  A few nights ago, Ruby said, "Maybe when Ava gets to heaven, and God makes her whole, He can send her back to us." That sounds like a wonderful idea to me.

While we wait and hope and grieve, we are living on the razor's edge -- listening for her every breath and wondering if it will be her last, while willing ourselves to keep living life, caring for our girls and ourselves.  Our hearts are breaking over and over again and yet she could hang on for hours or days or weeks.

We don't know how to do this.

We don't want to do this.

We ask every day that God would let this cup pass. We plead, we bargain, we beg. Then we eat the bread of truth that His will is perfect, His ways are good and He loves her more than we do.

Pray for us.

Pray for Ava.