Wednesday, March 25, 2009

A Little Souffle


After three weeks (or so -- I've lost track in that particular way of long vacations or ongoing insomnias) of near-daily doctor visits and too-frequent ER dashes, we still have no diagnosis.

We have an old-fashioned quarantine.

Oh, they're not calling it quarantine. There's the lack of a sign on our door. And there's a serious lack of slowing in the visits and phone calls such as you would expect in a true quarantine situation.

Not that I have any knowledge of quarantine protocol that goes beyond what you could learn in a movie (by that name, I think? Quarantine?)... anywho, I don't know the first thing about quarantine.

But I do know Sarah's on steroids for their anti-inflammatory effect, and I know we're not going to chess class, or archaeology, or the zoo, or anywhere else but stir crazy for two weeks until her next round of tests.

Sarah folds over on herself. Sarah is as flexible as a gymnast, a ballerina, a switch-hit debate star. This flexibility is her strength and her signature and a great reason in a long list of reasons to love her.

But right now Sarah doubles over like a crepe, golden but much more fragile than your workaday pancake. She folds in on herself as a morning glory does at dusk, exhausted in retreat from the beauty of the day. She's a souffle', sensitive to temperature and sound and the moods of those around her.

She's been ultrasounded (now that's a funny made-up verb) and X-Rayed and EKG'd and poked and prodded and annoyed as all get out by (apparently) falsely cheerful RNs. Her blood's been drawn too many times to count and I want to shout at the medical profession to please plan accordingly. "How much blood can the anemic girl spare?" Katie wanted to know. I want to know too.

Staying home for two weeks sounds restful. But now that I've had a day of it? One day? I'm exhausted. I am strung out like a strand of costume pearls on thin elastic. I am run through a wringer washer and hung to dry with the wrinkles getting crackly in the dry heat of a desert day. I am possibly just now sifting through the half-dozen doctors' ideas and concerns and oft-conflicting recommendations. Did we really just do all of that? Did I remain standing for that? Did we all?

Why didn't someone warn me to sit down?

In these past few weeks I have given so much thought and prayer to the concept of chronic illness and disease. The need to remain cheerful and calm for my children and myself is prime, but the inner dread and worry that I feel is somehow projected outward to the thousands of families who face debilating and life-threatening problems. How does one march forward? How does one maintain grace and hope?

I want to know.

Oh, and this brings me to another point. Everyone else wants to know as well. Everyone wants to find out what's causing Sarah to be so sick. The doctors are working very hard, following thin leads, trying to alleviate her symptoms while we're at it. Our families are also very supportive. But it's maddening. It's easy to fall into the role of armchair quarterback, backseat driver, Doogie Howser, M.D. Every medical site on the Internet has been attacked by Sarah's extended family, every symptom searched, every known illness cross-referenced. There is an answer, and I am confident it will be found soon. I'm frustrated though. I'm ready for her to be better. A miraculous healing would be fine by us.

As soon as I tucked the girls in bed tonight I went looking for something to read. And Barb did not disappoint! I am so grateful for my front-loading washing machine and my stocked freezer and my pea plants peeking out of the soil. I'm so grateful for modern medicine and for the Internet (although sometimes the Information Age is overwhelming).

I've missed my friends here. Thanks for all of your prayers and emails. We'll be back to your regularly scheduled farm frolics just in time for spring and summer gardening season.


Alexis said...

Aww man, I wish she was feeling better. I wish she was ALL better... this is not fun, not fun one bit. My prayers are with you and your family right now and every day. It's a wonderful world when we have hope and we're hangin' on to that, for sure.

Carolyn said...

I am so sorry. I know how frustrating it can be. One of my sons has chronic asthma the other is autistic.

Although we know what's wrong. I remember the days of trying to figure it out. And now with the autism...there are still so many unanswered questions.

It is so painful to see children suffer...but they do it so bravely. Somehow I find hope in that.

Barb said...

I'm glad I gave you a little levity. I can't imagine how strung out you must feel. When Jane was tiny, we had to have her blood drawn and had to go to an allergist for testing and blah blah blah. All just to find she had a lactose intolerance that she would grow out of. (Sorry --preposition ending. Pre-coffee) I'll never forget it and it wasn't even one TWENTIETH of what you all have been though.

I'm praying for the spontaneous miracle healing. It's the best way.

Grumpy Momma said...

Oh, Miriam...I didn't know you were going through all that. (I just read back a few posts....)

Prayers and love and healing going up to God for you pronto!

I hope Sarah is feeling better must be so hard for you.

Katie said...

Aww, friend! Things will settle down and Sarah will be telling silly jokes again soon enough...

QuiltedSimple said...

How I wish she was feeling better! I'll be thinking of you!