Well it’s pretty amazing, but Ava has been feeling a lot better the past two days. And she has been losing some weight – which is fabulous as she has some water-weight to lose, and her liver is smaller than it has been in weeks. And that of course is a good sign because it means that she isn’t so congested with fluid. But she was being a turkey yesterday, because she seemed to be the happiest when I wasn’t there. Three times yesterday she was happy and smiling at the nurses when I wasn’t with her… and I’m with her most of the time. Apparently I need to get to the hospital around 7:00 am, not go for lunch at all, and stay till after 8:00 pm… oh dear. 
But thankfully today I did get some smiles out of her, and it just makes my heart so happy to see her happy. She still doesn’t look as good as she did a month ago, but she’s still here and she still can smile and we’ll take it with thankful hearts. And I’ve been able to cuddle her again! When Ava doesn’t feel good she doesn’t like to be held, she just arches her back when I pick her up and wants to be put down again, and so for the past while I’ve been starved for snuggle time. But last night since she was feeling better, I took her out of her bouncy chair as she was falling asleep, and she snuggled down in my arms and it was just so wonderful to be able to hold her again. This afternoon when I took her for a walk around the unit (her huge IV pole in tow) she actually cuddled right into my shoulder and she hasn’t done that in ages and it’s a sure sign that she is feeling a little better. Isn’t God good?
And so we are truly grateful. And I’m glad to have something to be thankful for, because lately I just can’t help but think about how much our family is missing out with our baby in the hospital. Sure the kids are having fun doing things they normally wouldn’t have a chance to do, but we aren’t home, and I long to be home. We would have had so much fun this summer with a healthy 7 month old, Ava would have loved the pool and the kids would have had so much fun playing with her… and I feel like Ava’s babyhood is slipping away. And not only that, but because she is so weak, even though she is almost 8 months old, developmentally Ava is probably on par with a 3 month old in terms of physically ability. If a new heart comes we will have a lot of work to do catching up, but I guess that’s the least of our worries right now.
But I have to stop myself from feeling too bad for us, because I’m learning, self-pity doesn’t get you very far. And when I start looking down, I tend to forget to look up, and I need to keep looking up and keeping putting my faith and trust in God. He does know what He is doing and He has a plan. In fact, a friend sent me a text the other day and I’m going to share it with you… I get teary every time I read it…
Do not despair
God is always good
I will see the goodness of the Lord in the land of the living
I know that you have a future and hope for me,
and I know that you work all things for good to those who love you.
I will NOT despair God, you are always good.
Psalm 27:13-14
I believe that I shall look upon the goodness of the Lord
in the land of the living!
Wait for the Lord;
be strong, and let your heart take courage;
wait for the Lord!
(thanks Isabel!)
So instead of feeling sorry for myself and my family (which is so tempting!!!!!) I think I will choose instead to be thankful and to trust a great God. And there are lots of things to be thankful for… for friends and family who are doing such an amazing job supporting us through prayers, words and physical means. For a place to stay, for a great hospital… for being able to be together as family and an amazing God who will never ever fail us.
Please pray that I would continue to choose to look up… lately it’s become more of a battle, maybe because I’ve been alone now for a few days and without Jay and the kids here I’m more prone to feel sad. That and I feel like journey is starting to wear me out!! But even when my heart is weak, my mind knows that strength comes from the Lord and if I keep choosing to trust, He will never fail. He will never fail.
Amen.
