I have no jazzy title to this post at all. Maybe something like, LIFE SUCKS, but, hey, I’ve gotten some remarkably kind and hopeful emails from many of you, so I don’t want to scare anyone.
Our daughter, Molly Kate, has been in the Barrow’s Neurological ICU since June 22, the day after our son’s wedding. Since then, she has gone through two surgeries, a major infection, a dangerously low white blood cell count (2!!!) and is facing a fairly big brain surgery on Tuesday, if “all goes well“, which is always a dicey thing to write at this point. On the optimistic side, she is eating well (no feeding tube!), awake most of the time, and her pain is diminishing. All the medical hoo haw is complicated and frankly I don’t want to get into that shit here. I came home for two days to wash clothes, get some sleep, water dead plants, and pretend I can walk around without paralyzing fear and anxiety. And to not hear endless beeping of monitors.
We are not strangers to this situation. Molly since birth, has had many surgeries for her condition, hydrocephalus. It’s a bitch. I have learned enough about our completely backassward and negative health care system to know that it’s in complete and utter crisis. I have learned that most doctors just want to cover their ass and will try to avoid family members and their questions at all cost. Hey, who can blame them? When their malpractice costs are above $200K per year, they have lost their passion. I have learned that you have to advocate constantly for your loved ones and be demanding and assertive 24/7 when they are helpless. But all that stuff doesn’t matter right now. I’ll deal with those issues later, probably in a future post that will make you groan and wonder what it has to do with food.
On the bright side! Barrow’s is one of the premier “brain” hospitals in the country - we are lucky it’s only two hours away, and takes our insurance. Her nurses are, for the most part, extremely, wonderfully good and compassionate. Her original surgeon, who has performed some 50 surgeries on her as a child, is back on the case, coming in from Utah to take care of “his girl”. I feel this is something of a miracle, because of his guidance and relationship with our family, he has led us away from a truly dangerous situation to a real solution. We have friends and family who pray and help - my dear sister flew in from San Francisco and helped me in a way that only she understands. Our other children are so helpful and make her laugh - even our son in Iraq calls every chance he can, which is no small thing. We have a powerful and loving circle around us. I am truly, deeply thankful.
And, I hear from some of you that have learned of this situation. Your emails and posts move me very much. Sometimes I think that a complete stranger, who has no connection with us at all, sending prayers and good wishes, is the strongest indication of human…goodness and compassion. It is surprise and wonderful revelation
So, I’ll end with that….otherwise this post will get stupidly emotional and really, I just wanted to let you all know what’s up and to thank you so much.