Ok this pic is HORRIBLE quality, but Taters took it of Bailey on her ipod, and I charged her ipod through my labtop instead of using the charger, and there it was in iphoto. like magic! so I have to do Bailey's ipod that way - she has many more, non-blurry pics of herself :) But this pic with her big fat Oreo baby is so her.
Bailey is going to be seen by the chiropractor as an attempt to increase her lung function. I am trying to do anything I can to get that number up - she was down 4% at her last visit. She goes to CHOP quarterly, our next appointment is at the end of Feb and I am praying she is back up. We added an inhaler and increased her chest PT's (basically that's clapping her on the back, chest and sides with these plastic cup things, it's supposed to thin mucus), we have her back swimming each week and now we're trying this. If her lung function is not back up, or God forbid worse, she will have to go on a CF drug given by way of a nebulizer, and get a vest. The vest doesn't bother me, that was only a matter of time until we got that - it's the same thing as us doing her chest PT manually, it's just the vest does it for us. But the CF drug really bothers me.
So that's just why we were at the chiropractor. What I really want to talk about is what a sweet, loving girl I have. She was just a joy this evening. She was so good with the doctor, and even colored him a great picture while I was being worked on. She was respectful, a good listener, and kind. Then while I paid, she befriended a lady in the waiting room. She is such a Hiscott-Gutelius...so open, chatty, friendly. We used to joke that my dad could talk to a dead man, and Kevin's parents are also like that. We got to Friendly's and they were out of the one thing she was craving for dinner - their clam chowder, which she just loves. She hesitated a second - disappointed of course - but then said, "You know what? That's ok. Really. I'll have mac and cheese, please." Now, she's 8 and so I didn't expect a fit, but her ability to just shake off her disappointment and not whine even a little, made me proud. She colored a picture for our waitress, and wrote on it Have a Good Day! During dinner we made a list of goals for the next few months, like inviting a different friend over once a month to make their favorite dinner and watch a movie. She also said, "Mommy, do you want to talk about Jesus?" I said, "Sure, what do you want to talk about?" "Nothing...just sometimes I like saying his name and that we can talk about him anywhere, anytime."
Be still my heart! I was just bursting with gratitude for this girl. She s really getting 'it.' 'IT' to me is love...kindness, gentleness, patience, courage, generosity, gratitude...living as a mirror of the heart of Jesus.
There are times when I am still for a while, and really watch her like tonight, when I think "God, she is so special. Please don't take her." When she was little and such a sweetheart, I would be gripped with a fear so intense it would bring me to my knees, wondering if she was so sweet bc she was an angel, and only here for a short while. I grew out of that, and don't think that way often anymore. But there are times I still do, and it's just awful and it robs me of that precious moment we are having. God does not want me to fear the number of her days, and I don't want to either. But sometimes it's hard, knowing she does have a disease lurking in her body, that has killed children much younger than her.
Regardless, I am so thankful for my faith, which tells me God loves her more than I do. Seemingly impossible. We joke with the girls that I "made you from scratch" but really, God did - her big brown eyes, her brown hair with a hint of gold, her fair skin, her long slender legs, her kind heart. He created her for good things - He has already blown me away with how He has used her, and her life is really just beginning. I am so thankful to be a witness to it, so thankful to be her mama.
Growing up, all I knew for sure was that I wanted to be a mommy someday. Here I am, with 2 precious girls, and I am just overwhelmed with gratitude tonight that they are mine. They test me, they make me cry, and sometimes, I feel like a failure as a mother. But with every day that passes, they are learning, and I am too. Sometimes the lessons are learned the hard way, sometimes it takes several times over to learn.
But tonight, I saw the fruit of some of our labor. I saw a hint of the young woman that Bailey is becoming, and it is thrilling to watch. She's still a young girl yes, but I can see more. Earlier today, in an effort to organize our home movies, I watched a few that were unlabeled. One was when she was just 3 years old. I cried, frozen to the couch and gripping the remote, as I listened to her sweet baby voice, and watched as she sang, danced and played. I wished desperately to go back in time, to hold her as a little one again, to take back some of the precious time I wasted worrying about her health, or trying to survive her little sister's needs. But the fact is, those moments, those days, happened - days that flew yet dragged by as Kevin and I just tried to muddle through - and here we are, and I want to go back?! No...
I am really enjoying where we are at. The children are still young and with that comes all the joy and struggle of their ages. They still have crying fits, temper tantrums and their sister-fights can have me in tears. I still struggle to meet all of their needs, and sometimes I really drop the ball. But we are over the sleepless nights, the poop fests, (what is that you say? If you've never had a chronically constipated child who needs regular enemas, you can't know), the "what is wrong?! I wish you could just tell me!", the biting phase, the hitting phase, the crying-like-a-mad-thing phase when Mommy leaves the room or God forbid, pees without you on her lap. And it feels pretty good.
That being said, I can't promise that I won't want to steal your baby.