We've been spending a majority of our days at UVA in the Battle building. The parking attendant knows me and we have had some fun conversations. When you walk in there's a food cart during certain times and the nice lady asks me if I want my "usual" (a black tea). I find humor in this and crack a wry smile as we chat briefly. She always offers me a milk too in case my little girl needs it and tosses me a wink. She remembers the panicked mama from several months before whose appointments ran over and "surprise" she forgot food. When you have a typical kid no biggie, that's why there are golden arches. A tubie child is a bit difficult to offer a mcburger to. Since I don't have a mcblender in my purse.....
Anyway we have had some good and not so good appointments. The good ones have been for my son mostly. We went to UVA since VCU stopped returning my phone calls and my son started having medicine reactions. I called my daughter's Dr in a panic and we were able to get things straightened out. They also squeezed me into neurology. Our Dr. was great. She explained that VCU had great concussion advice, 20 years ago...... Unfortunately, science has evolved at a more rapid pace than they have. Marvin was on unnecessary medication, bad advice, and mom did you notice that his left eye is wonky? I'd have that checked out, let me get you a referral ASAP! So for Marvin we now are off the bad meds, following a new protocol and gee guess what? He's slowly improving. Yay!!
For Cary Lynn she decided its really not fair that Marvin gets all the attention has of late, ha! We found out that her IV/IG levels are lower than normal. Which means a few things. Yes it proves that she is dysautonomic and that she's medically fragile. Unfortunately, it also means that exposing her won't give her a heartier immune system. I know people always say that. But in her case exposing her means chipping away at an already shortened life span. So we have to keep her well. Oh and her hips are dislocating. Quite a bit. From last years x-rays to this year there has been changes and it hasn't been great. We don't have really good options. The surgery she could get would need to be repeated often and because she isn't very mobile at this time the general consensus is we need to let her hips just fall out of socket. It won't hurt her. But it hurts me. There is really nothing worse than being told there is nothing to do.
Unless you are being told that your child needs a new piece of equipment. A lift. A lift looks like this:
You basically put the person in a sling and it helps lift them. The practical part of me says, well this is good and can possibly save my back. The human part of me is having a really hard time with this. Another piece that screams your child is disabled. Another chip in my heart. Another quiet round of tears. I'll adjust, it will just take a little time.
So while the kids have managed to keep me fairly busy I've managed to squeeze in a couple of cool things. I was asked to contribute to two books. One being about special needs parenting and the other on adoption. Both causes near and dear to my heart. One is out as an e-book and the other is being assembled now as I write this. Writing has been so therapeutic for me right now and telling our stories is important. These projects are just volunteer on my behalf so no giant royalty checks, lol! But every word I write helps me find truth and helps me let go.
There are also lots of good people out there. Sometimes in places you don't think to look. Last night we were blessed to meet some of them. My husband tells me that you never know when you are going to meet angels in disguise. Last night a whole herd of them blasted into our driveway on motorcycles. They are called Guilty Ones and they came and spoke to our family. We sat with a house full of gentlemen that some may never give the time of day to. In living the life our family lives we've learned that what you see is not always what you get. So while my son was enjoying the attention of two of the club members I got to share a little bit about our family. To talk about our children and our day to day lives. To share some of our needs as a family. Plus it was just stinking cool to hang out with them!! When they left my son cried for about 30 minutes because he was having so much fun. So if you see these guys anywhere smile, wave, better yet talk with them. They help families like ours and that means a lot.
They journey we take isn't always an easy one, but it's the only life I've known and frankly, I don't think I'd do much different if I could (maybe I'd remember to pack Cary Lynn's lunch that one day, but hey it all worked out). We take it as it comes and just roll around here. It's who we are and what we do. We also appreciate everything that others take the time to do for us to. It's never dull but I wouldn't have it any other way.