Preparation

Today has been more difficult than yesterday was. Ava can't seem to get comfortable. Her heart rate is just so high. We've been trying pain medication, repositioning, massage. She just can't settle in. I think it's her crumbling metabolic system. Unfortunately, there is no medication that can counter act that.

Ava and Eric have a disease that is little known by the general population. What's known in the medical world is minimal and broad. It's vague at best. There is a handful of brilliant minds that are thinking all the time on how to identify all the inner working of the mitochondria and how to ease the disease process. But to date there is nothing to speak of. It is just so complex and individualistic. It depends on so many factors known and unknown. Mitochondrial disease research is at the forefront of medicine.

I can't even describe how sad it is that there hasn't been much progress in the 6 years that have passed since Eric was with us on this earth. While I have always hoped that Ava was not afflicted with the same terminal illness, I feared it was true. I hoped that she could become stabilized. I hoped that because of Eric there would be more management, more time, more hope.

While we will never understand fully the "whys", I will tell you what I do understand. God created Ava and Eric. He made them imperfect in His perfect plan. They were created for this purpose. They were given to us so that we could have the honor of loving them, knowing them and holding them. Ava gets the extra special treat of being loved by three adoring sisters who couldn't love her any more if they tried.

We feel like we are moving into a new phase: Preparation. We are trying to prepare the girls for what will inevitably come. They are wise and sad. They ask tough questions which helps us know what we believe. How I would do anything to see those faces smile. The muted glimmer in their eyes does nothing short of breaking my already torn apart heart.

I love how they encourage each other. When one is down, another one will try and be strong and cheer up her sister. They love the idea that Ava was given to us because God knew that we could love her the best. I'll tell you we certainly do. (We even learned tonight that she love her bottom lip and chin rubbed. As big a smile she could muster she did. This goes on the list of things about Ava I cherish from today. Also added are watching her play with the suction catheter in her mouth, sucking on her tube, which we haven't seen for awhile, and holding her in a more natural fashion. She was also OK to wear an outfit for a few hours as she was not as hot and sweaty today as she has been.)

Now if only I can get Elaina to understand that when Ava goes to God Eric will not show up in her place. She's just so adamant about it.

The faith of a child is awe inspiring and a breath of fresh air.