Saturday, June 23, 2012

Holding Flight

I went to the porch
As the evening crept in
For a quiet place
Away from the kids
To savor a bowl of ice cream

But found that my clanking spoon
And indulgent mood
Seemed as out of place
In the reverent solitude
As slurping it down
While a bride and groom
Pledged their vows

Before me stood the solemn pines
Piously still
Regarding the copper-lined horizon
Where it brushed
The deepening sky

Rows of corn leaves
Rippled and shushed
The new June fireflies
Bobbing and flickering
Like children in the pews

In the indigo blue
Presided a crescent moon
Excusing their impropriety
And mine

I gulped quickly, guiltily
And found I was relieved
To slide my bowl behind me
And join the worshippers

From the black horizon
Rose a mighty bird
And gently beat his powerful wings
Across the length
Of bronze-edged trees
With such beauty
That my heart pleaded
For him to stay

But I knew that my awe
Was in his flight
In the sun's fading rays
That beauty stayed
Becomes a bore
Ingraspable change
Both thrills and pains
The soul

Upstairs in their beds
Lay five children now still
One with one less tooth
And one with two more than last week
As I kissed their summer-short hair
Smelling of chlorine
And Grandma's backyard
My heart pleaded for them to stay

But beauty stayed
Becomes a bore
It is their change
That both thrills and pains
My soul

Sunday, June 17, 2012

Family Fun-cation

For three months now my girls have been counting down the days until our summer family vacation. In typical Hannah fashion, my second daughter has recounted almost daily the list of adventures she couldn't wait to embark on when my three siblings and their families convened with us at my parents' house this June, creating a 22 person family gathering, with a total of 11 cousins present.

The long-awaited expedition was off to a shaky start last Friday night. Elijah woke with a cough and an ear infection. We didn't succeed in pulling out of the driveway until 10:30pm, which was a less than ideal way to begin a seven-hour journey with five kids. Then Hannah and Toby began running fevers, and within two hours I joined them in the world of headaches, body aches, and general delirium. We pulled into my parents' driveway just as dawn was breaking. The chirping birds cued even our feverish children to wake and demand breakfast. I was thankful when my mom tended the older kids and Elijah and I could crash for a few hours.

Saturday was dedicated entirely to recovering from our travel and fevers, but by Sunday we were finally ready to meet up with the rest of my family (who had been hiding from our germs at my sister's house) and enjoy ourselves. Actually, enjoy might not be the right word for dressing 21 people up in coordinating outfits, lining them up outside in 90 degree heat, and snapping family portraits, but it certainly was an accomplishment.

Monday we met up at a county park to let the kids try a little fishing. Every child successfully caught something with gills, except poor Emma. She seems to get the short end of the stick more often than not. My brother, who was helping with the baiting and reeling, felt awful for Emma and prolonged the trip in hopes she would finally come up with a fish, but instead Emma only witnessed Hannah catch her second fish while her own line remained limp.

Tuesday our whole troop headed to Living History Farms and spent the day visiting working farms and shops from the 1800's time period. Our first stop was a 1700 Indian farm. My eight-year-old nephew saw the corn husk dolls there and informed our guide, "Those sure are ugly!" Toby chased the chickens at the log cabin and stood in awe of the 400lb sow on the 1900 farm. Naomi couldn't fill her eyes enough with the massive but gentle work horses. Emma laughed at the snorting piglets, and Hannah hungrily eyed the wheat-filled cinnamon rolls that the skirted ladies pulled out of their iron cook stove.

In the little town we clopped along wooden sidewalks to the broom works, where we watched a lady hand crafting brooms, the blacksmith, the general store where Toby attempted to swipe an iron train model from behind the glass counter, the drug store where each child took turns grinding cinnamon with a mortar and pestle, the print shop, and the doctor's office where we learned that you were probably better off at home in 1875.

"This is the best, best, best day ever!" Hannah glowed as we headed back to the parking lot.

Wednesday morning we took at a slower pace, letting the kids run free in the fenced-in backyard. It seems however that some adult supervision is still required. Toby's four-year-old cousin showed him how to open the gate, and, after Grandpa had wired it shut, his eight-year-old cousin showed him how to climb over it. Toby also picked a couple of Grandma's green tomatoes. This displeased Grandma, but she was glad he had at least left the red one alone. Ten minutes later he returned to inform her, "Grandma, this big red potato just fell off your potato tree!"

That evening we visited another county park to go for canoe rides, roast marshmallows, and try another round of fishing. This time Emma was the first to pull in a little fish. Her eyes just glowed with pride, and we all breathed a little sigh of relief at her eventual success. My sister-in-law stayed busy keeping Toby out of the water and the fire, and wiping him up after he devoured the first s'more of his lifetime.

Hannah was quick to layer on the praise after her first canoe ride. "So would you go again?" I asked.

"Oh, only a hundred, hundred times!" she swooned.

Thursday morning I woke early to dress the three girls, pack their lunch, and ship them off to a children's opera with my mom, my sister, my two sisters-in-law, and two of their cousins. I stayed at home with my boys, who would have made my time at the opera miserable anyway. It was nice to have a quiet house to ourselves while my girls had an awesome time getting a backstage tour of the opera house with their cousins.

Thursday afternoon was dedicated to a nine-cousin backyard water fight. Toby missed out on that one due to a nap, but given his distaste for water I don't think he minded that. He preferred to pass the time that evening amusing his extended family with bizarre scenarios involving chocolate consumption.

"Have you ever, ever eaten a chocolate rug before?" he asked his aunt, with a mischievous grin. When she gave an encouraging laugh he ramped up the questions to the next delightful notch of wildly odd ponderings. "Have you ever, ever eaten a chocolate-milk chair handle?!" he queried, giggling giddily at his own question.

Emma, though amused, shook her head at her brother. "I don't even know what a chair handle is," she remarked.

Friday afternoon my sister with her two sons, my parents, and Matt and I with our five kids, braved a water park. We took turns helping the girls, holding Elijah, and attempting to coax Toby into the water.

"Mommy!" Toby called out to me at one point, "I saw somebody with no somethings on her!" Yes indeed, I saw a few of them there too.

I tried to walk Toby slowly into the water, but he clung to my neck with all his might and yelled out, "This does NOT look like fun!" The girls splashed and laughed for a full two hours while Toby sat with his feet dry and firmly planted on the cement deck. There were some trains rumbling by with impressive force just outside the fence, and this at least redeemed the experience a little for Toby.

Just as we were deciding to leave, Toby's psyche received a sudden and unexpected jolt of bravery. Taking his daddy's hand, he willing waded out into water for the fist time in his life. Much to our astonishment and his, he enjoyed it. But just as he was finding his duck feet, the lifeguards blew their whistles for a pool check, and Toby had to leave the water. Maybe it's better he ended on a happy note, it might keep him coming back for more.

Upon returning to Grandma and Grandpa's house, we received another shock. A robin was caught in a net that had been draped over my parents' raspberry bushes. His foot was tangled in the netting and he was dangling from a leg that was clearly broken from his struggle. My girls all felt terrible for the poor little bird which they quickly named "Diamond."

He fluttered about furiously as I approached him, then sank to despair and sat calmly as I wrapped a towel around him and held him still. We snipped his foot free from the netting and set him on the grass. He rested then, seeming to understand that we had helped him and there was no need for fear. His leg was no use to him anymore, but within an hour he had flown away, and I was relieved that whether he lives or not at least my girls can believe that he did.

Elijah spent his week learning to sit independently, popping his first tooth through, and increasing his tolerance for rice cereal feedings. When it came time to pack our bags and say good-byes on Saturday, I met some resistance. "Well, Toby," I sighed, "Are you ready to go home today?"

"No!" he declared without hesitation.

I can't blame him. I don't believe we've ever had a week filled with so much family, fun, and first experiences. I would have stayed longer if I could have, but Matt's job has called us back to real life. And after a week of constant activity and very little sleep, there is something appealing about a routine day of sitting in my pajamas with a cup of coffee and my blog. Alas, not for long though. I still have some big goals for this summer: Elijah needs to learn to sleep in a crib, Toby needs to learn to use the potty consistently, Emma's got some intense speech therapy coming up, and Naomi and Hannah both need to learn to swim, ride a bike, and hit a ball with a bat. Back to work I go.

Friday, June 8, 2012


I ought to be packing, or preparing lists, or at least sleeping, but as so often happens when I am overwhelmed, I want nothing more than to sit down and sort out my thoughts here. The last few weeks have been very intense: swimming at two beaches, two birthday parties, a memorial day party, graduation parties, dentist appointments, doctor appointments, and another round of confusing illness. Oh, and I'm supposed to be getting ready to take my kids on a road trip to Grandma and Grandpa's house tomorrow for a 21 person family get-together.

In God's grace, he foresaw my weariness and sent two young ladies from our church to my door this morning, and with their help today (folding 5 loads of laundry, making lunch, cleaning up, helping with homeschooling, and toting Elijah around) I am keeping my head above water. We may even be ready for that trip tomorrow.

It is the illness that weighs heavy on my mind again tonight. Last February, during our infamous "February of Fevers" when Emma had pink eye and vomiting, Toby had strep throat, and Elijah had pertussis, Naomi also ran three or four mysterious fevers. Her fevers would come on quickly in the late afternoon, spike high between 101 and 103.5, and disappear by morning. Sometimes just for one day, sometimes repeating the pattern the next day. Headache, jaw pain, joint pain in knees, ankles, and hips, abdominal pain, and a mild sore throat appeared just before the fever and gradually improved over a day or two following the fever. I called our pediatrician after the third episode, but she wasn't at all concerned.

At the end of March Naomi spiked another fever in the same pattern. I took her in to the pediatrician that time, she ran some basic tests for liver infection and UTI (two things Naomi is at high risk for) but found nothing. In April it happened again and I just waited it out, not knowing what else to do.

Last Tuesday, June 5th, Naomi complained after lunch, "Mommy, I have a headache, and my jaw hurts, and my knees and ankles, and my tummy hurts too." I went over everything she'd eaten in the last two days, but couldn't find any culprit. Within an hour Naomi was shivering and piling on blankets and up went the fever to 101. Tylenol only brought the fever down a little, and didn't help her pain much. At midnight I woke to Naomi standing beside my bed. "Mommy, I feel like I'm going to fall when I try to walk," she whimpered. Her fever had reached 103.5.  I stripped her to a T-shirt, gave her more Tylenol, and put her back in bed. I checked on her once at 4:00am and she was still hot to the touch.

Naomi woke yesterday (Wednesday) morning with a mild fever, mild pain, and fatigue. She spent the entire day on the couch reading C.S. Lewis' "A Horse and His Boy," cover to cover as well as five "Magic Tree House" books. She ate nothing, and for the first time I can ever recall she didn't feel thirsty. I actually had to force her to drink fluids. I debated all day about taking her back to the doctor, but she seemed stable enough that I decided to wait until a regularly scheduled appointment today (Thursday). Late in the afternoon she began to shiver, the fever spiked over 101, and suddenly, just as we sat down to dinner, she cried out that her tummy hurt really badly. Tears welled up in her eyes and she doubled over in pain, refusing to straighten out to stand or walk. I watched her for a few minutes, then packed Elijah up and headed for the ER with Naomi, leaving the other three kids with Matt.

The doctor listened to my concerns and ordered all the tests I wanted, checking for liver infection, UTI, and strep throat. Naomi cried and hobbled all bent-over to the bathroom to give her urine sample, she cried harder as they put an IV in and drew blood (talk about insult to injury), and I assured her that this was necessary to help her. I felt certain they would find something this time. One hour later the doctor breezed into the room and nonchalantly declared the "good news" that "everything looks normal." When I opened my mouth for more detail he actually cut me off mid-sentence (yes, in the middle of the very first sentence I tried to speak), looked at Naomi and said, "Would you like some juice, young lady? Let me see if I can get you some juice." He quickly left and never returned. We were discharged with no discussion at all.

The nurse with the discharge orders cheerily consoled me, "We've been seeing a lot of fever and tummy aches lately. There's just stuff going around."

I tried to control my anger as I said, "But Naomi's condition ISN'T going around. I've got six other people in my family and no one else is sick! No one else ever gets sick when she runs these fevers. It isn't a virus!" We looked at each other awkwardly for a moment, then she handed me the papers to sign and an enormous packet of utterly useless information on coping with "Pediatric Fever"-- the consolation prize that's supposed to make me feel like I'm leaving with more information than I came in with.

As I helped an unsteady and sore Naomi back into her clothes I noticed a light, fine raised rash that covered both of her knees symmetrically. I considered insisting the doctor take a look, but quickly decided it was pointless, his mind was made up already. I took Naomi home, put her to bed, and she woke fever-free and mostly pain-free this morning. She has acted completely normally today.

Fortunately, Naomi and Hannah were both scheduled for their one-year check-ups today, and their pediatrician was in a listening mood. She heard me out, and was clearly concerned. She suspects Systemic-Onset Juvenile Idiopathic Arthritis (a subset of what was formerly known as Juvenile Rheumatoid Arthritis, and also known as Still's Disease). This is an autoimmune disease that Naomi is at extra risk for since she already has one autoimmune disease (celiac disease). Systemic JIA "flare-ups" can be triggered by many environmental factors and cause inflammation throughout the body including inflammation of the liver and spleen, which would explain the severe abdominal pain. Naomi's presentation is actually quite classic with cyclic fevers, salmon-colored rash, joint pain, jaw pain, sore throat, and abdominal pain. I had suspected this disease in the past when Naomi suffered severe joint pain, but when I linked the joint pain to her consumption of food dyes, and discovered that eliminating the dyes also eliminated 95% of her joint pain, I naively concluded that it hadn't been JIA after all. I now believe that Naomi most likely does suffer from JIA, with gluten and food dyes being two of the primary environmental triggers that set off an inflammatory reaction. She has also apparently developed another trigger that is now setting off the cyclic fevers, and it is my job to track that down, if possible.

It is a difficult disease to diagnose. The doctor wants me to bring Naomi in for more bloodwork at the peak of the next fever, but even then no test is definitive. The CBC they ran last night does show changes that would line up with JIA: low hemoglobin and hematocrit (even though Naomi takes an iron supplement daily), and elevated monocyte percentage indicating a chronic condition, but these changes could be caused by myriad other issues as well, which is probably why the ER doctor so glibly declared everything "normal." Mostly the diagnosis is made from observing symptoms and ruling out other possible causes. It will be tricky to get any doctor to observe her symptoms since there is such a small window of high fever and severe pain. The pediatric rheumatalogist is a four hour drive away from us, and the last place Naomi wants to be when she's in pain is sitting in a car for four hours. If this is the diagnosis we eventually get, the prognosis is uncertain, ranging from "outgrowing" the disease (20-40% chance) to a chronic, progressive, debilitating disease (60-80% chance).

Once again I feel burdened to fight for and protect my daughter who struggles with more medical conditions at age 8 than most people see in a lifetime. But now it is late, and I need to sleep. I have a road trip with five little ones tomorrow, and after that...who knows?