But thanks for trying. Really.
If you are lucky, you won't ever *have* to understand. In fact, I pray that no other parents ever have to experience this particular circle of Hell - the one where you must stand helplessly aside while your child is in pain. The one where you are useless to stop her suffering. Where there is nothing you can do but hold your child, and dry her tears, and promise her that somehow we will find an answer.
The last four weeks or so, Twinks has been hurting again. Almost all of the time; we did have a few lovely days that were pain-free scattered throughout, but for the most part, she has returned to that same terrible, dark, place we were at last spring.
Medicine A, and Medicine B no longer want to work together.
The doctors (note the plural) have no idea why A & B no longer want to play nice with each other, and make the pain go away.
So, they have begun adding and subtracting medicine(s), changing doses. We have been trying to keep a journal, to see if we can identify any pattern to Twinks pain - is it affected by weather? Her diet? The time of day she takes a particular medication? We journal almost obsessively, The Wrench and I adding details and comments that we hope will help us find an answer, or at least a clue to what causes her pain to flare up again. What causes the terrible "spikes" in her pain that leave her feeling cold and nauseated, her legs trembling, her head pounding.
Word of Twinks fibromyalgia has begun to spread through our community. Our friends, family and Twinks teachers all know about it. Probably the most interesting reactions that we have gotten, however, have been from the parents of Twinks friends. These are people we have known since kindergarten. People who know that she has had years of pain, countless miles back and forth to The Hospital. People who have seen her in a wheelchair, in her braces, using the walker.
Those who already know usually approach with sympathy. They tilt their heads towards one shoulder, and ask "How is she?" in that tone of voice usually reserved for hospital hallways. The Wrench and I can sense when the question is genuine; but typically about half of the time it is obvious to us that the questioner is just taking a round-about way to what they really want to know. They don't *really* want to hear about the pain, about the impossible number of pill bottles that litter our kitchen table, about how a little part of you curls up and dies every time she cries out in pain. What these parents want is a little bit of juicy gossip that they can pass along. We consider them to be polite, but fairly harmless gossips.
Next, we have the parent who obviously (and gleefully) uses your child's distress to bolster their own opinion of just *how wonderful* their own child is. Their sympathy is false, sugar-coated, and fleeting. What they really want to talk about is how great their kid is doing by comparison. These parents already know that Twinks can't do whatever it is that their kid is doing - but it makes them feel superior to think that their kid can do something better than she can. It seems to come from this weird competitive thing that some parents get into; "My kid's better than your kid". OK, fine. How sad is *your* life, if you have to compare it to *ours* to feel better about yourself?
Worst of all are "The Experts". I cringe whenever I see an Expert coming at me; they are inevitably ready to give me a fully-detailed opinion of how we should "handle" Twinks and her health issues. It matters not that we have engaged the services of the best physicians we can find - these Experts have, after all "been looking on the Internet" and can now tell us *everything* we might ever want to know about treatment options, pharmaceuticals, surgical procedures, etc. The Experts, of course, always know *someone* with exactly the same condition/symptoms/doctor/medication/etc., and never hesitate to tell us hair-raising stories of death, dismemberment, or permanent disability . The Experts spew sympathy and empathy in machine-gun fire, rapid staccato-bursts between rendering medical opinions. One well-meaning friend frequently brandishes a sheaf of printouts from WebMD and other sources - it is her contention that if we would just do what these experts say, everything will be alright. I love her for caring about Twinks so much, but she can't seem to understand that The Wrench and I have already spent countless hours in research. We can (and have) debated the merits of one drug combination vs. another with Twinks doctors. We already know where all the clinical trials are, who is conducting them, and what they entail. We also are fully aware of all of the alternative and non-traditional approaches to her disease. It is *part of our job* as Twinks parents to be an expert on our daughter's medical conditions, and it is *part of our job* as her parents to be her advocate. Trust me when I tell you - the parents of any disabled or special needs child will almost always know as much, if not more than you do - unless you happen to be a doctor who specializes in their child's condition.
The one thing - the common thread that binds all three groups (the gossips, the one-ups and the Experts) together - is one sentence. This one sentence is said in what seems to be a genuine attempt to be empathetic and/or sympathetic. I always want to reply to with a polite but firm "No, you don't..."
I know just what you are going through.
No, you don't.
And I pray you never will.