A bit better today.

I think Ava had a fairly decent day today. Her body is certainly still reeling from the toll it took over the last week. From the headaches and seizures and corresponding surgery, she is not physically where she was 2 weeks ago. Her left side is a bit weaker, her eyes do not quite track like they did, and her speech is a bit slower. However, her little crooked smile and her sense of humor have gone no where. They were evident again this evening as she asked me to sing more songs about "Daffney's mee-bum" which translated into plain english is "a song about our dog's behind". She got a good chuckle out of herself. It's nice when you can crack yourself up...you never get bored.

While we don't know what her ultimate physical progress will be, we are staying focused on listening to the doc in NJ who has helped two other girls with GBM. She is in contact with Lisa on a daily basis and is directing Ava's diet and treatment program from there right now. We are waiting on the all go for travel from her. She is helping us decide when Ava is physically well enough to make the trip without further hurting her body in the process. Meanwhile, there are things we are doing here to help keep the beast "in check". All of it is being directed from the only person who has given us any hope for Ava and actually has a track record to back it up. So, we wait and enjoy our times like today as we watch her make baby steps of physical progress.

Amazingly, Ava is not frustrated by her inability to do other things right now. She is a bit more concerned than she was that she is not well, but even those moments are fleeting. She is looking forward to meeting one of the girls who had the same boo-boo she has. She lives in New Jersey where they (Lisa, Ava and a couple of friends) will be traveling.

While it's hard to see Ava have reduced capability, it is quickly countered by the blessing that we had another day with her. Each one is a treasure. I am constantly reminded that I have to value time with not just her, but all of those whom God has put in my circle of care.

I was talking with my brother the other day and told him, "You know, I can honestly say that no matter what happens, I will not have regretted one single thing about the way we have raised Ava. She knows she is loved, knows God loves her, has always had to live within the boundaries of thinking about others above herself, lived everyday knowing that her mom and dad think the world of her because God gave her to us, and knows her dad and mom love each other and Jesus." I know not every parent can give that gift. It's something I wish I could pass on to every single person that has a kid.

The single greatest gift we can give our children is a knowledge of who Jesus is. The second greatest gift we can give is a mom and dad who live out a love for each other that models the way Christ loves us. Lisa and I are by no means flawless, but those are the goals we intentionally shoot for every single day. It has made a difference in the lives of our kids. They have a confidence that only comes from seeing that lived out over time.

We are quite the far from perfect. But, when I go to bed at night, I know that our kids have seen what it's like to try hard to live and love as Christ would. I truly believe it's something that gives Ava comfort right now. She knows we aren't going anywhere. We are right here no matter what. And so is Jesus.