Since we last spoke (ha!) here we've had a few new experiences for Galyna. Aside from the needles and saline (more below) we introduced her to the following:
- Camping: Okay, she's been camping before, but this was our annual family camping trip to the Wisconsin Dells' Jellystone Campground. Yeah, it's campy (pun intended) but it's fun. Also, when you go over a September weekend you pretty much have the joint to yourself. On a side note, Tierney appears to be getting too "old" for this campground. I've been doing a bit of photo labeling and sorting of late, and watching how much the girls have grown...better stop now before I get eye moisture on my keyboard.
- First Grade: this is Galyna's first year in everyday school. Last year she was in a couple of school-based programs the days she wasn't in kindergarten, but this year she has all-day/everyday class with the same teacher and classmates. Conferences come up Thursday evening, so we'll see how she's doing. She was fairly nervous about homework, although why that would be we don't know; her sisters rave about homework and want to get lots. Maybe she's hearing things from other kids!
- The Great Minnesota Get-Together: I'm not sure Galyna has yet recovered from the incessant over-stimulation that is our state fair. From games and rides to food and animals, she saw more of pretty much everything than she ever had before.
- Church: Yeah, she's been going since we adopted her, but this summer she was in the service on Sunday mornings since children's programming was a "one hour or the other, but not both" option for us. It'll be interesting to hear, as she gets better at expressing herself, how she perceived this.
I'm sure there are other things I'm missing, but this is already looking to be one of my (in)famously verbose posts.
On to the medical portion of our show. We've had the opportunity (challenge? distress? stress?) of a lifetime, twice since our last hospital visit, to inflate Galyna's tissue expanders. It can't be a good sign when she starts crying hard and tightening up long before I even pull the needle out of the packaging. What is hardest for her is the inflation of two ports on her neck (which inflate expanders on the sides of her head) and the discomfort caused by her stretched skin over the two days or so subsequent to each expansion. All of which I completely get. The last time, she even said she wanted to have them removed and forego hair for the rest of her life. Fortunately, the two ports on the top of her head don't cause her as much trouble, so by the end of the procedure she's generally calmed down.
Aside from the obvious pain/discomfort, there are also starting to be some aesthetic concerns. The expanders lift the scalp tissue, which makes Galyna's head look very "lumpy" and not round. She sees this as "gross" and "ugly." Which, again, I understand. It has to be so very hard for her to see what we do, which is the end game. Her immediate pain is the hard part, and knowing she won't fully grasp the benefits of this until months (or years) from now is difficult on all of us. But. We persevere.
We do this because the procedure is a blessing from God; Shriner's care has been excellent, and the gift of free procedures is humbling. We're not "fixing" a broken doll, but Shriners is helping us heal a hurt child. We don't minimize the pain she feels now, but we know she'll at some point have part of her past healed from this. We also persevere because we want for her the best life possible, and although we'd like to think she'd always be treated normally despite having physical differences we're not so naive as to believe that's reality. She's always been beautiful to us; we want her to be beautiful to herself too.
So as you go through your Thursday evenings these next few weeks, please remember us in a prayer. I'm sure Galyna will appreciate it, even if she doesn't know it's happening.
God bless,
Ron
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