It's been a couple months again. Keeping up with writing just doesn't take the priority that keeping up with life has. It's been busy, most of it good. In my usual fashion, I've chosen to just keep living, be it so with more intention than in my youth. Ah youth...we decided after a victorious year and some struggles that we were due for our first family vacation. It was touristy and the kids enjoyed it throughly. Taking 7 people on vacation is no easy task. The preparation is ridiculous even for someone like me that loves preparing (you're always preparing. What's the matter Colonel Sanders, Chicken?) Vacation was a reprieve from many of the everyday reminders of our set of challenges. We were a normal family. We were distracted but engaged in something new and wonderful. It was exactly what we needed before this last month of the summer as the pace quickens again.

Here we are a couple weeks out from seeing genetics and it's nerve wracking. These trips are never easy. Hours of testing and updating records, one room to the next, the drive...it's exhausting.The kids and I don't see the same geneticist so it's multiple trips to the university hospital but well worth it for the care we receive. The difference between diagnosis and prediagnosis has been the care. As I've said before my general practitioner is fantastic, but when you start adding specialists that know about your condition and how to treat it, it becomes that much easier to manage. The time sink is incredible. And while the preparedness required is daunting to some, we have figured out a thing or many about making life more manageable for a home with 4 vascular EDS people. You never know when when of us will get a debilitating migraine, crushing fatigue, immense depression, joints so unstable and rubbed raw that just existing is painful, seizures, when my organ failure is going to be over the threshold - which is exactly what happened this week.

As per my normal schedule, I had an ER trip a couple days ago. It really is almost a quarterly event. When presenting in the ER with tachycardia, abdominal pain, bilious vomiting, dehydrated and a history of cardiac arrest and strokes - they take you seriously. So serious that the ER doctor asked me what needed to be done and he called to consult another doctor on my condition. Have you ever had an ER doc ask you what treatment works and how they should proceed?! I was relieved that I didn't have to explain it. I was a little busy projectile vomiting like an automatic sprinkler. Dysautonomia and pancreatitis gave me a good go of it but we were able to reset my body after about 6 hours of throwing the heavy stuff at it. They gave me fentanyl twice and I didn't even ask for it! What is this now? Twice in a row. Some of these things worry me, like a lot. It would be a lie if said otherwise. There's no playing it cool for anyone here. That's the nice part of just quietly going about my life. There's not even a gossamer veil on the truth for the sake of shielding others and I'm damn sure not writing this to impress anyone. At times, it's at best an outlet to purge things before they rattle around in my noggin too long.

I was given palliative care a year ago and a 12% chance of making it 6 months multiorgan failure will do that 🙄. Last year was hell -managing severe PTSD while fighting for my life and fighting for my kids as well. Sometimes it's hard to believe how many times we have beaten the odds and not become a statistic. Even triumphing over that, some nights sleeping is next to impossible. Wildly unbalanced in my endocrine system means adrenaline surges when I should be sleeping (@ you 2:30am) PTSD leaves me unable to feel safe when everyone else is asleep, so the threat based Center of my brain stays activated and engaged when all I want to do is rest. Abuse does horrific things to people.

Speaking of sleep interruption and abuse...Tonight my daughter sleeps on the couch just outside our room because the nightmares have gotten too bad again. My heart breaks for her. The paralyzingly nightmare that left her shaken and us sitting up until the wee hours of the morning put her over the edge and she is trying to regain control over her fear again. I guess being beaten and held hostage for 2 days, being told she would never get away and that they had spies everywhere is still not far enough away a year later for her either. I wish we could put light years in distance from it for her. While she is ashamed of her struggle, I can't wait for the time when she realizes how amazing and strong she is. She sees me as this superhero - willing to fight any injustice for my family, super human like powers of resilience, unwaivering conviction, the one who rescues her. Maybe I am, it's not my decision how others see me. All superheroes have flaws to overcome, a weakness or some might even say they have some red on their ledger to erase *nod to you, BlackWidow* we need everyday superheroes - people that inspire us, people fighting for good in our lives, people who want the best for us and are willing to give their all to protect us. I can't think of a better description for a parent than an everyday superhero. I've definitely been called worse. For now, I call myself tired.

Goodnight ~ Ande