"Are you frustrated?" the doctor stated with a dry chuckle.
It wasn't really a question.
Yes I am.
I was buzzing with it. Trying to convey just how much things are not okay without sounding overly dramatic or alarmist. I ache with the need to be heard. I worry sometimes that I can't quite convey what we're experiencing. The sliver of a day we spend in an appointment can't get it across.
Because things are not okay, and they haven't been for months.
"You know, people think that doctors know everything, but we really don't. There's so much we don't know."
I know enough about science to know how little we really know. How we don't really know even how some simple things happen in the body, let alone the complicated ones.
I had a professor once who loved to tell us how to win a Nobel Prize. He would say, "if you could figure out how this works, you would win a Nobel Prize for sure. Or that. We don't know how any of it happens."
It takes a wise man to admit what he does not know.
I prefer being told we just don't know to being given excuses or half truths.
But I need to know.
"So I guess the question now is what do you do?"
What do we do, indeed. We just don't know.
(Mini Meerkat used to say, "I can't know!" when we asked her things. Now the script has shifted to, "it's a secret." I think both apply.)
I need to know how to help my sweet girl who endures so much.
The endless diagnostic testing and constant appointments encroach upon her freedom. But when she is free, she doesn't have the energy to run.
She used to run up and down the halls when she couldn't stay cooped in those tiny rooms any longer. She would make a break for the waiting room, wanting to play or escape to the elevator or just go back and forth in the long narrow hallways.
Now she curls in my lap or at my feet, sometimes inching under the chairs to hide. Muffled whispers of "I'm hiding" or "I'm tired" interrupted the doctors reverie.
"Well, I guess we'll call you if we think of anything. But that's part of the problem isn't it? Each specialist says it isn't their problem." He shook his head.
He had been thinking, hands pressed together and watching her closely as she sprawled across the floor.
My floppy girl, making funny faces up at me but too tired to support her own weight.
We walked away with no answers and no ideas of where to go from here.
To the next specialist, I suppose.
I'm sorry. How very frustrating. It's amazing and scary how much is unknown.
ReplyDeleteThank you. It really is humbling when you stop to think about it.
DeleteI feel your frustration. With Boo I sometimes feel that the specialists pass on to the others. When she started turning blue, cardio blamed pulmonary, pulmonary blamed endocrine, endocrine blamed rheumatology. Finally Boo's cardio told me that everyone ends up in rheumatology when they don't have an answer (his wife happens to be a rheumatologist). I do appreciate your doc telling you he doesn't know.
ReplyDeletePS-found you via love that max
Yes, I call that specialist ping pong and we get it all the time! This particular doctor was a geneticist who also told us the first time we saw him that we were there because no one else could figure out what to do with us.
DeleteI'm loving the love that max link up. It's so nice to connect with other families that are going through similar things!
I really feel for your frustration, mama. I really really do. We did rounds and rounds and rounds of specialists with Little Miss. I still have follow-ups that I'm supposed to schedule that I just can't make myself do.
ReplyDeleteIt's so tough going through all those rounds and even more difficult when your sweet, beautiful baby is wrapped up in the middle. You're in my thoughts, lady... sending all the strength to you and mini MK I can muster!
Thank you so much!
DeleteWe've had so many appointments this month, and each time we leave we have to schedule follow ups or more appoints with new specialists. It just snowballs and yet no one can figure out what to do!
Oh I feel so sorry for you. Hope there is an answer somewhere
ReplyDeleteThank you. I'm still hoping someone can figure something out...
DeleteOh I feel your frustration! I so very hope that you can get answers or at least ideas on what you should try for your baby's increasing tiredness.
ReplyDeleteTo a lesser degree, we, too are frustrated with doctors. My son is 3 1/2 and while his speech therapist thinks he's autistic, his developmental pediatrician does not. So - what does that mean? I spend a lot of time telling myself that not knowing is ok. But, I still wish I knew.
Thanks for sharing. Found you via Love that Max.
Oh, we've been in that situation too on top of the physical issues! One doctor thinks asperger's but the neuropsych doesn't and the *new* psych that neuropsych referred us to said everything is still on the table.
DeleteI try to do the same thing and tell myself that it doesn't matter *what* it is as long as she is getting help, but man, some days I just can't be okay with it.
Thanks for stopping by! I'm really loving being able to connect with other parents going through similar things. Sometimes it feels like it is just us.
Just wanted to send you ((hugs)). Just the little bit of ping pong we had to do was too much for me.
ReplyDelete~ Jamie ( hopping over from Love That Max)
Thank you! It is a long process.
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