Tuesday, November 18, 2014

Friends on Earth........

It is isolating to be the parents of a chronically ill child. You can't predict more than a day ahead, so rather than cancel at the last minute again, you don't accept invitations.  Invitations slowly stop.  People innocently ask how things are and you have such limited choices:  Flat-out lie, dodge the question, or let on that things aren't going well.

Each choice has its advantages.  Lying gets you off the hook, because if everything is going great, everybody smiles and moves on to the next topic of conversation, sparing you a blow-by-blow reliving of how much your life sucks.  Dodging isn't bad, a good choice with people who really don't care about the answer anyway, but sometimes painful to those who feel they deserve a more honest answer. Telling the truth gets you support.  But telling the truth is exhausting.  Exhausting.  When I was in Migraine Hell myself a few years ago I heard every "Have-you-tried-sacrificing-a-chicken-under-the-full-moon" suggestion from every corner of the universe.  I may have gone to medical school but I'm not so full of myself that I'm unaware that doctors can be ignorant prigs who ignore perfectly good natural remedies.  I tried a lot of them.  I checked known safety data on a lot more.  I've been down this road myself. 

Walking through an illness for yourself is not the same as watching your child suffer.  And she frankly has it a hundred times worse than I did.  Yes, we've thought about hormones. Of course we've examined diet:  Dairy, gluten, chocolate, caffeine, sulfites, cheeses, and every other imaginable food trigger has been investigated.  She has no allergies.  Yes, of COURSE we've had her eyes checked and no, she doesn't have TMJ.  The list of medications we've tried (herbals and supplements included) would astound you.  I will tell you that in the last eighteen months not once has any human outside of her neurologists' office opened their mouth to offer a single suggestion that we haven't already considered.  The only treatment I found on my own was an electronic trigeminal nerve stimulator recently approved for use in adults.  I asked her docs about it.  It hasn't been studied in kids.  I'm willing to sign her up.

All theses suggestions are kindly meant, as are the many stories about people (and it seems everyone knows at least one) whose headaches NEVER come under control (not sure how that's meant to be comforting except perhaps in the 'you aren't the only one' sense).  And I'm ashamed of myself for being so frustrated by the sincere kindness of people who care about me and Babygirl.  But her pain has me so exhausted and so discouraged that  I just don't have the courage to think about it any more.

But here is where I know the value of my friends:  Wednesday, when we get information from Babygirl's new tutor about what hours she wants to teach her, and we need an adult in the house to supervise, I won't have to make more than two phone calls to find someone who will either give Curlygirl a ride over so she can do it, or come over themselves.  I'm 100% certain that that is a gap people will stand in, just as they have stood in every other oddly shaped gap we've had in the past three and a half years.  I can't explain how huge the peace is that comes with that knowledge.


PS Funny story:  For a while the tutors were satisfied that my Mom was on the other side of the house.  Then one of them must have met her.  We got a request for an adult who "isn't so hard of hearing."  I said, "She isn't hard of hearing exactly, she's more.... hard of thinking."  The tutor responded, "Yes, well, I was trying to be polite..."


  1. One of my pet peeves is the "me too" stories when relating medical information to friends....the endless tales of the mother of a friend of an Aunt...blah blah blah. Having worked for a paediatric oncologist I saw grave illness which made other things seem so small to me...so when people go on about their knee replacement surgery and how tough it is going to be, I don't want to hear it.

    I think people need to ask better questions. Instead of "Does Baby girl still have bad headaches?" ask "what does she like to do when she doesn;t have a headache". Better questions direct the conversation away from the endless "me too" stories and help to distract both parent and child from the misery of the headaches.

  2. What an excellent suggestion!