Friday, September 15, 2006

No, you don't...

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..."

The sentence?

I know just what you are going through.

No, you don't.

Trust me.

And I pray you never will.


Kelly said...

Thankfully, I have never had to deal with the "one-ups", mainly because there's not even anywhere NEAR a close comparison. So be it. I don't mind missing out on those people.

As far as the experts go....yeah, I've had those. Especially since it's "epilepsy" I'm dealing with. EVERYONE knows someone with that. What they don't realize is that there's different flavors of the condition, and Michaela's is a "Limited Edition."

I'm sorry you're going through this. Can I say I understand? I can't say I understand the pain part ---Michaela doesn't deal with that. But the people. The drugs failing. The trips to the hospital. The "unnormal life". And yet, if our lives WERE normal, it would mean that our beautiful children wouldn't be a part of it.

I'll take the trips, the meds, the people.....anyday.

Hang in there, Thim. You're loved.

Melinda said...

I don't have a child, so I won't pretend to understand how you feel.

When my mother had open heart surgery after the doctor's suddenly discovered a tumour in her heart, I felt like my whole world was caving in. Seeing her scar still makes my stomach jump - I was lucky though - she healed and is doing fine.

I pray that your family finds peace and a way to help your little girl feel better soon.

Stu said...

Hey, wow, so sorry to hear of this. If there's anything I can do, like try to make Twinks laugh, or maybe send you home-made chicken corn soup, let me know.

Continue on your path. Continue your bravery, your strength, your determination. You will find your way home yet.

Danger Mouse said...

We're here for you in any way we can, be it through prayer or other forms of support (i.e. Stu's soup - I myself make a mean potato soup, if needed). Thinking of you, the Wrench and Twinks... **HUGS**

Ericka said...

*sigh* you're completely correct - i have no idea what you're really going through. of course, i've never pretended that i did. it totally sucks that on top of every thing else, you have to deal with icky people.

wouldn't it be great if there was a way to set up an internet site so that people could click to volunteer to take a minute (or some increment) of someone else's pain? i would click a few times for twink, and i'm sure everyone else here would too. we'd have her up and bouncing around in no time.

i'm sorry y'all are going through this. i thought the worst was over when you figured out what was causing the problem. it's so unfair that that was just one step on the ladder. please let me know if there's ever anything i can do!

(i too make a mean potato chowder, and an awesome beef vegetable soup. ooh, and cheesecake. man, i'm making myself hungry.)

Suldog said...

What a beautiful idea, Ericka. I surely wish there was such a thing.

Thim, I don't have anything to offer except my promise of continued prayers.

Chuck said...

Hey T, hope that Twinks is feeling better soon. Good luck with everything.

Rurality said...

Dang I thought y'all had it licked for sure. Sorry to hear that things have gone backwards.