Having another day where I do not feel like writing. I survived. It wasn't even that bad of a day. Just continued challenge and I swung from feeling purposeful and light to feeling every moment of my 41 year existence.
I don't even know what the temperature is but that wind chill has to be one of the coldest I've felt in awhile. Awful. Transporting, loading and unloading the wheelchair, harder than usual. Still nothing from the doctor regarding Jake's arm.
There isn't a day that goes by that I don't think about medical improvements. I've lived through far too much and it irks me that so much inadequate function exists. I'm probably not phrasing that right but it's hard to explain what it's like to have experienced the in/out of modern healthcare. There really aren't words to describe that clusterf*ck.
I feel especially blessed because before the kids were born, my background was in medical office administration and accounting. That career trajectory was cut short....so that I could keep them alive and well, micromanage. lol.
Having an understanding in those areas helped me deal with the complex grief and confusion that can plague patients when it comes to multi-million dollar health care concerns. I was able to advocate for myself and them. I wish I could say it got easier.
Micro-preemies - I haven't shared a photo of Jake and Julia at birth tiny and I really can't. It's too traumatic but here is one of them almost a couple months old.
It's difficult to comprehend the true size of a micro preemie, especially through a photograph. They were each born at 1 pound, 8 oz. Even at this age, their eyes were not open yet. They spent the first four months of their lives in the NICU. 111 days.
And now, 15 years later - I'm too tired to write tonight. :)
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