Inadequate…or…Can you bribe a chiropractor?

At least 20 times a day I wonder (often out loud) why I’m the only one who’s even trying to come up with answers when I’m the one without a medical degree!?! For goodness’ sake, our chiropractor is the only doctor who has even tendered a guess! He’s also the only one who will entertain my wild theories. Why is that?!?

I just don’t know what to do, or where to go for help. I wish I could take the chiropractor with me to the neurology appointments, so that at least the one expert-type person who listens to me could speak medical-ese to the others who won’t. Is it wrong to beg him to come with me? Is there a pocket-chiropractor that I could bring along and unfold so that he could sound smarter than I do? (Can you bribe medical people to advocate for you? Would a bottle of wine do it? I make a mean banana bread…..just sayin’)

We’re on waiting lists for other doctors, and have appointments set for the “first availables” which are months away. In the meantime, I have to work with what I have at hand, and I’m not doing it well. 

Kind people keep telling me that I’m doing fine and that I’ll learn, but I’m not learning fast enough – in part because I don’t know what to study. Other well-meaning souls tell me to take her everywhere and keep asking questions, to be a pest. I just smile and nod (and fight back the screams of frustration), because they clearly have never had to run the maze and gauntlet of finding a diagnosis in a highly specialized world. It’s not a matter of not scheduling enough visits; it’s a matter of not being able to see anyone for months. When there are only a few people specializing in a very specific area, there is going to be a waiting list, and sometimes that waiting list can be months long. I always want to ask how I’m supposed to get in to see three doctors a day when those doctors can’t see her for months.

All this delay and waiting is beginning to make other people lose patience with us. Our support system (small as it is) is crumbling as people get frustrated that we don’t yet have a name to call this. Guess what? We’re frustrated too!!! Partly because we’re beginning to look like bad parents to our real-life outside world, because how can we still not know? If only we would _____________, then we’d have answers. The funny thing is, no one can tell us what goes in that blank. They just assume that we should know that instinctively.

I feel that way too.

We should know. We should know how to help our baby. We should know where that is. Parents should just somehow magically know these things. How can we not?

There’s so much shame in having a child with a mystery illness, so many feelings of inadequacy….so much loneliness…..

I can’t end there… Here’s a happy thing. A friend of mine is a brilliant photographer. She took my eldest daugther’s senior portraits, and took these of Ella last weekend. (Eventually, I’ll get her to take pics of each one of them.) These are just a few of the previews: