I'm happy to report we are out of ICU and have been for 3 weeks now!! Woo hoo! It's been so nice to be out of there; no constant beeping, noise and lights but some peace and quiet where we can rest and just hang out together on the couch and watch 101 Dalmations, Madi's all time favorite movie by the way. No big surprise though, she's obbssessed with dogs, mostly big dogs, can't imagine why that would be?? Lol, yes we do Face time with her brothers Huck and Kodiak at the house when we can so the three siblings can see each other :). Madi tells them "hi" when she sees them, so cute!
Anyway, all is going very well here, we're maintaining and just waiting for her gift to arrive! Really trying not to think about it and just keep going on each day because if I think about it I wonder, when will it come? Why hasn't it come? What a terrible day that it will be for the family who donates but a great day for us? That in itself is difficult to think about! So, when I start to go down that road, which I clearly have, I just try to quickly get off it because it doesnt get me anywhere but anxious and upset "So dont worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today" (Matthew 6:34). Isn't that the truth! Today has enough to deal with to worry about tomorrow. Duh, so just worry about today, no big deal! I wish it was that easy but it's not supposed to be easy I guess; learning to use our faith in God instead of our own strength to get us through each day (each week, each month, each year etc.). Again, something I admit I am really crappy at but I'm getting better each day I think. I've always been one to think that nothing is done right unless I do it myself, but what if what you want done is your baby to get a new heart? Obviously I can't do that myself so it becomes pretty clear that not only can I not accomplish that task on my own but really who was I kidding prior to Madi? I can't do anything by myself, I have to let go and let God. Again, I really wish It didn't take my baby needing a heart transplant for me to learn this! Whoever knew and didn't tell me where were you! I'm sure I was told I just never listened. Funny how that happens!
This whole experience has made me a completely different version of myself, I don't know if it's a better or worse version, just different. I told Austin once, I feel like one of those soldiers you here about coming home from war where they struggle to live a normal life. We havent been to actual war but we have been in a battle to save our daughters life since the day she was born. It's something that forever changes you and makes you think about life in a completely different way. We, like soldiers, have seen and done things that no parent should ever see or do but yet I think it has made us more appreciative of the life we are currently living because we know it can be a lot worse and Madi can be a lot worse. I just hope that never changes and we will continue to see the good and not the bad in each situation we are dealt. I will say that God gave me the best partner for this battle because Austin has a special gift for seeing the light even in the darkest of times. It doesnt mater what it is but he has a way of making things seem not so bad, just another gift God handed me; this gift just happened to be walking down the hall at RHS about ten years ago and caught my eye. I did have to stalk him a little in the end and ask him on a date myself but hey my "nothing is done right unless I do it myself" attitude worked out for at least one thing, lol :)
Over all we are hanging in there, making the best of each day and just glad Madi is doing so good! Our main focuse right now is Physical and occupational therapy, which are going well. We're just trying to build up the strength in Madi's legs that she lost after being sick for so long and having a stroke. Her left leg is really functioning well, almost as good as her right that wasn't affected by her stroke. Her left arm is a little more of a struggle but we knew it would be from the start. It has limited function but we're working on it and if I had to choose between the arm or the leg I would hands down choose the arm because we need the leg for walking, which the doctors say they have no doubts she will do with time :)
Sorry for such a long post, guess I had a lot to share! Thank you as always for all of your thoughts, prayers, gifts, phone calls, texts, meals, etc. that you all have sent our way! We couldn't survive without you!!! I've attached a few recent pics of Madi as well!
Love Tabi
