Saturday, May 26, 2012


Tuesday morning, around 6:00am, I was vaguely aware of a rumbling just outside my bedroom window. I was curious, but not enough to shake myself from slumber's grasp. Instead I lay, intermittently snoozing, then wondering again at the clanging and grinding sounds growing ever louder. Just before 8:00am Elijah smiled his enormous good-morning smile and began batting at my face. Drowsily, I peeked out my window to see several large pickups with trailers unloading excavators, bulldozers, and septic pipes.

"I thought they finished that last summer," I wondered to myself. The septic system for the trailer court around us had failed two years ago, and been replaced last summer. I slunk down the stairs, plopped Elijah in his bumbo seat with some plastic keys to chew on, and looked out the kitchen window. An enormous excavator sat just across our driveway, 20 yards from my window, with its metal-toothed bucket poised to devour one of the few grassy areas near our house. "Here we go again," I thought.

But it was far worse than losing a patch of grass. As soon as the bucket bit the earth there was a loud screeching noise, followed by a hissing and a spray of dirt and debris 15 feet into the air. The two men on the ground ran opposite directions and the man operating the excavator, jumped out with his cell phone in hand, dialing as he ran. He ran as if an enormous fireball could explode behind him at any moment, and judging by the hissing sound still audible even inside my house it probably could have.

I was frozen for a moment. I wanted to run too, but I had six other people to think about. I dropped Elijah by the front door and called to Naomi to get her shoes on. "Why?" she asked.

"We need to leave, now," I called back, grabbing the diaper bags and dropping them beside Elijah. "The workers outside hit a gas line. It isn't safe here."

"What about the other kids?" she answered, growing visibly worried.

"I'll get them. Just get your shoes on."

I ran up the stairs, two at a time and yelled to Matt as I flipped the kids' light on and shook the girls, "Get up, girls! Run downstairs and put your shoes on. We need to go outside for a little bit."

"What about our juice?" Hannah mumbled sleepily.

"We're going to have that later. Get your shoes on and wait by the door with Naomi."

To my dismay Toby was drenched in pee, head to toe. I stripped him while he screamed in shock, then I zipped him in a dry sleeper and carried him down the stairs, shoeing the girls in front of me. My mind was fogged, all the time trying to balance care for my children, with the pounding plea inside of me crying, "Get out! Get out now!"

A gas smell was detectable in our house now. Realizing this was the morning of Emma's last day of preschool, something she was looking forward to with all her little heart, I grabbed the outfit I had set out for her and stuffed it into the diaper bag. "OK, out we go!" I called, trying to cover the worry in my voice with an air of "isn't this an adventure," but probably failing miserably.

As soon as we opened the door we met a clear and strong gas smell. Even with a breeze, I knew the concentration in the air was dangerously high. We couldn't start our van, which was parked within ten yards of the leak, for fear that it might spark an explosion. So we walked down the hill towards some neighbors to see if we could wait in their trailer. Matt lagged behind to ask advice from the workers who were congregating in our front yard.

The elderly couple quickly let us in, and we discussed our options together as I dressed Emma and brushed her hair. We heard sirens then and it was only a minute before a fireman was knocking on the door and calling to us to evacuate.

"Where are we supposed to go?" I asked.

He shook his head. "Anywhere but here!" he called, hurrying to the next trailer.

"I guess we hike on foot in our pajamas," I sighed. "Let's go kids."

Matt joined up with us as we were leaving. "The firemen are here," he said, "but we're still waiting for the gas company to shut the gas off. I guess gas is heavier than air, so it's pooling here at the bottom of the hill. We need to get out of here."

The smell was growing ever stronger, and Matt's last words put the hurry back in my step. As we fled with our children, hiking over a grassy hill to the next subdivision, the last scene from "The Sound of Music" came to my mind where Mr. Vontrapp says, "We'll hike over the mountains on foot," and Maria says, "But what about the children?" "We'll help the children," he assures her.

I carried Elijah, who now smelled of messy diaper, on one hip and tugged on Toby's hand with my other arm.

"Where are we going?" Hannah asked.

"Up over the hill," I replied cheerily. "We'll wait for Emma's bus up there. Hopefully it will still come to take her to school." Our road was blocked by firetrucks with flashing lights a quarter-mile from our house on either side. Two trucks from the gas company were driving around the barricade just as we reached it. "Well good," I said to Matt, "They'll have the gas off in a few minutes and we should be able to go back in what? half-an-hour?" Matt agreed.

So we set up camp on a grassy corner at the entrance to a subdivision. I breathed a little sigh of relief when the fresh morning breeze no longer smelled of natural gas. It was a perfect sunny spring morning, and I felt very thankful that this had happened in the best weather possible. I set about changing Elijah's diaper, and then his entire outfit, which had been drenched in yellow poop. I ordered the other four kids to sit in the grass and passed out zip-lock bags of Chex cereal which live in our diaper bag at all times--score one for being prepared. Unfortunately, we do not keep water bottles stocked and ready in the diaper bag, and I knew immediately I only had minutes before thirst was going to be a major issue, especially for Naomi, whose kidney condition causes her to thirst for constant water intake.

"I want my juice," Toby whined.

"I nee goo go pah-ee (I need to go potty)!" Emma informed us, dancing a little.

I looked at Matt, "We've got about five minutes before her bus comes. Want to start knocking on doors?" He took Emma into the subdivision and I tried my best to convince Toby we'd have juice soon. How long could it take to shut a gas line off?

Car after car pulled up to the firetruck, then turned around in front of us and sped back the way they'd come. People were annoyed and angry at the disruption to their morning routine. I felt like waving to them and pointing to my five thirsty kids camped on the roadside in their pajamas, "You think your morning is disrupted?!"

Matt and Emma returned from a charitable house where Emma had relieved herself. Two ladies, out for a morning walk, stopped to ask us what all the commotion was. They offered to take us to their house, a quarter-mile back in the subdivision, but I wanted to wait for Emma's bus, and I was certain we'd be heading home in a few minutes. We thanked them, and they walked on.

Emma's bus never showed up. Matt and I peered down the hill and noticed that none of the buses that normally traveled our street in the morning were turning onto our street. "They must have been rerouted," I said. "I guess Emma's not going to school." Emma's face fell into the most pitiful pout and tears welled up in her eyes. "I'm sorry, sweetie. I know you're disappointed," I sighed. "This is just a bad day."

"I'm going to get an update from the firemen," Matt decided.

"My cell phone is dead, Matt. Please don't be long," I pleaded. Matt left his cell phone with me and jogged back into the gas pit. I sat in the grass, nursing Elijah (more or less discreetly), and consoling my thirsty children. "At least Elijah's not thirsty," I said, sitting him up to burp. He grinned and cooed, happy to be outside.

A few minutes later Matt returned, driving our neighbors' car. He rolled down his window, "I'm going to take Emma to school. Put her in." Emma's face brightened as I strapped her in and Matt updated me, "It's going to be a couple hours until they'll let you back in." My heart sank as he drove away.

A fireman returned to the truck, watched us for a moment, then made a phone call. He strode our way. "I called our chaplain," he explained, "he's going to come and take you to a church where you can have water and shelter."

I wasn't sure how I felt about this development. I wanted to go home. I brushed my hair and we waited. A blue minivan pulled up and I recognized the two ladies who had been out walking earlier. "We decided that you need to come with us," they announced. "Hop in."

I've never put my five kids in a complete stranger's vehicle before, but this seemed to be the best option available to me, so I jogged over to the fireman and told him we wouldn't be needing refugee care at that church after all. He agreed and we drove off. I was thankful to be inside the bright, spacious new house. My kids couldn't wait to get back outside--through the patio door they spied the fenced-in backyard of their dreams, complete with playground. I had to reign them in to make them use the bathroom and drink water before they charged out the door. I called Matt to tell him where we'd gone, and wondered with him if Emma's bus would be able to get through to bring her home in two hours. It was now 10:00am, and Matt had to get home and get ready for work. He called me fifteen minutes later to give me the good news that the gas had finally been shut off and the road had been reopened.

My only challenge now was pulling the kids away from this house. When I announced that we were going home Toby actually pitched a fit and tried to steal as many match-box cars as his pockets could hold. Our new friend gave us a lift home, and I sighed a long sigh once back on my own turf with all my little ones safely inside. I looked at my pajamaed disheveled crew, then looked at myself in the mirror. We were a sorry sight. "Alright, who wants juice?" I sighed, "Time to start our day."
The next afternoon I heard sirens again. The septic system crew had dug multiple pits for new septic tanks, and the wall of one pit had collapsed, kinking a small gas line and causing a minor leak. Thankfully no evacuation was necessary. Later that evening I ran out to the grocery store for an hour while Matt put the kids to bed. I forgot that my cell phone was still dead. As I drove home, I could see multiple trucks with flashing lights blocking the road in front of my house. The fireman motioned for me to turn into the subdivision before my house. I rolled down my window and called, "That's my house right there. I just need to get to the driveway."

"I'm sorry, Ma'am," he called back over the rumble of the firetruck's engine, "I can't let anyone through for any reason."

"Is it another gas leak?"

"Yes, Ma'am. You're going to have to turn here Ma'am. Please turn."

"You're telling me there's no way for me to get to my house?" I asked in disbelief.

"No, Ma'am. Please turn now," he replied, waving his little blue glow-stick at me.

I turned, not knowing what else to do, and parked in a cul-de-sac that backed up against the trailer court. I grabbed the grocery bag with the ice cream in it and walked between two dark houses and into a woods, pitch black, with only the lights from the trailers on the other side to guide me through. I scrambled through brush piles and arrived in someone's trash heap, climbed over some old car seats, and found my way through the trailer court to my house. Matt was holding Elijah and talking with some neighbors in the driveway.

"So I guess you didn't have to evacuate this time?" I asked.

Matt explained that the ground shifted again and caused a leak underground. Gas was bubbling to the surface and they had to dig down to it and repair it still. It was going to be awhile until they opened the road again, but wasn't really a danger to us. I couldn't smell any gas, so we went inside and waited. At 10:30pm, I was ready to head to bed but the road wasn't opened yet. I needed to get the car home so I could unload the rest of the groceries and so Matt would be able to drive it to work at 6:00am. I grabbed a flashlight and set off though the woods again.

Once I found the car, I drove though the subdivision and found my way out at the opposite end of the barricaded stretch. I went to turn past the firetruck and the fireman yelled at me, "No, no, no!"

I rolled down my window and smiled when I recognized him as the same fireman who had called the chaplain for me yesterday. "Hey," I greeted him, "I just need to get to my house. I have a car full of groceries here and my baby's crying at home. Can you just let me through?"

"Oh, I'm sorry, I can't let anyone through at all," he said to me, clearly feeling sorry for me.

I eyed him, "If I go anyway, are you really going to ticket me?"

"I can't ticket you," he smiled, "all I can do is try to stop you."

"OK, " I grinned, "You just yell, 'No, no no!' as loud as you can while I drive by you."

He laughed and gave a hearty, "No!" as I drove by, but nobody inside the no-zone seemed to care that I was there. It was a whole lot easier unloading the groceries from my driveway than through the woods, the house didn't blow up, and I got in touch with my rebel side. Fun as it was having three gas leaks in 36 hours, I think I'm ready for some boring days.

Sunday, May 20, 2012

An ARPKD Family Reunion

Some experiences in life are so unique, so filled with emotion and challenges beyond the grasp of the average person, that when you meet another human being who has shared those experiences, you feel instantly like family. Indeed, without a word spoken, this person understands more of you than some of your own family members. There is little need for introduction or explanation, you share your stories freely because you can tell there is understanding. There is encouragement just from being together--you are not alone.

Yesterday Matt and I packed up our five kids and drove four hours for a "family" reunion. It was the 2012 ARPKD/CHF Midwest Family Gathering. We had never personally met most of the people there before--some I recognized from online forums--but it didn't take long to make friends. Eight families from the Midwest, all affected by ARPKD/CHF (the kidney/liver disease that Naomi and Emma have) met at a county park to share hot dogs, games, face painting, information, and encouragement.

Seven children living with ARPKD/CHF (there was also one affected adult present) ran and played with the other kids, and except for some rounder tummies and one feeding tube, you would never have known that this was a gathering of families battling serious chronic disease. You wouldn't have known that two girls present had received kidney transplants, that one father there had donated a kidney for his daughter, or that most of the children were dependant on daily medications to counteract high blood pressure, anemia, electrolyte imbalances, and a host of other issues inherent to kidney failure and liver fibrosis. 
The kids had their faces painted, caught butterflies, tossed bean bags, explored a nature center, and let balloons sail into a picture-perfect sky. Although they knew we were there to meet other kids with kidney disease, I don't think they thought that they met anyone special, just other normal kids, like themselves, and that is exactly what I was hoping they'd feel.
The adults listened to each other's trials and triumphs, compared doctors and hospitals, and asked each other's advice on nutrition, medication, dialysis, surgical procedures, infections, emergency care, and organ transplant procedures. I learned more about the challenges my daughters face in one afternoon than I had in a year of doctors visits, because, as with most rare diseases, the families living with the disease know more than many of the doctors caring for them. But even better, I saw with my eyes two little girls thriving post kidney transplant and one adult thriving post liver transplant, and I heard weary moms and dads laughing even as they shared their challenges. In this fertile soil, our fragile roots sank a little deeper and drank of the nutrients that nourish hope. Today, in my heart, hope is in full bloom.

Friday, May 11, 2012

Riding and Falling

Naomi will be turning eight next week, which is hard enough to believe. Even harder to believe is that we haven't taught her how to ride a bike yet. What kind of parents are we? Lazy? overprotective? way too busy?...maybe some of all three. Anyway, this chore has topped my priority list for this summer. So when gorgeous weather aligned with Matt's day off today we declared this evening "Bike Night."

I told the kids to hurry with the nightly clean up because we were going to go ride bikes at a nearby church parking lot. Toby entered panic mode and followed me around asking me, "And will I get to go too?!" and reminding me, "Bring my bike! And my red helmet! I want to have my bike and my red helmet!" I actually had to strap him into his booster seat just to get the bags packed: water bottles, knee pads, elbow pads, helmets, band-aids, antibiotic ointment, paper towels. Yeah, maybe I'm a little overprotective, but you can't take five kids to play in a parking lot and not expect to see blood.

Naomi began to grow nervous as weunpacked, but after a few turns on her scooter and a reassuring pep talk (just disregard all those band-aids Mommy packed, OK) she was ready to get suited up for her first ride.

After Naomi's successful first run, even Hannah got a turn on the two-wheeler, and she did alright. It's hard to say whether the highlight of my night was watching both Naomi and Hannah successfully take their first assisted bike rides or just enjoying Toby's dorkiness. But we all had a great night...until we didn't.

First Emma, the only girl not wearing knee pads, tripped over her three-wheeled scooter and scraped a knee. Mom was quick to the rescue with her first aid kit. Five minutes later (as Matt was napping in the back of his Camry--a little tuckered from running with the girls' bikes) Emma wiped out again, skinning the same knee, on the other side of the parking lot. I was holding Elijah when she went down so I woke Matt and passed Elijah to him, then grabbed the first aid kit and set off on Naomi's bike to help Emma. She stopped her tears to giggle as I pulled up making loud "weee-ooohh, weee-oohh" siren noises. I slapped another band-aid on her, made her sign some discharge papers, and charged her a hundred dollars. We laughed, and all was well again for about a minute.

As I rode back to the van Naomi decided to race me on her scooter. I, of course, had to show her that a scooter was no match for a bike. We were having the time of our lives, until Naomi tripped and went sliding across the pavement. Thankfully, she still had her elbow and knee pads on or it would have been much worse. The force of her slide pushed one elbow and one knee pad off and left her with a bleeding scrape on each. At least I had the first aid kit in hand. "This sure is a busy night for the ambulance service," I remarked, and that brought a smile back to her face.

I was so busy dressing wounds then, that I hardly noticed Matt dropping Elijah into his car seat and pulling Toby from the front seat of the Camry. Apparently Toby had snuck in an opened back door and climbed into the front seat, stepping on both Matt's cell-phone and ipad in the process, then breaking a knob off the dashboard. Sensing that Daddy than pleased, he decided to make himself useful by "helping" Elijah, who was crying at having been set down. Unfortunately, he didn't realize that Elijah wasn't strapped into the car seat. I didn't witness any of this. I only heard an awful scream and looked up from Naomi's knee to see Elijah face-down on the cement and Toby running away from him as fast as he could go.

Amazingly, Elijah was not hurt, save for a pink spot on his cheek. No blood, no brain injuries, he's fine, but I know it could have been much worse. I wish I would have seen what had happened, because Toby is usually quite careful with his brother. In five months, this is the first time any of my kids have done something that could have really harmed Elijah. We decided it was time to head home then.

Tonight at bedtime Naomi said, "Well, we still had fun. It was worth a few scrapes." I have to agree and call it an overall success since, at least, no one was injured while bike riding. After tonight Naomi may decide that bike riding is safer than scooter riding, and I think she'll be ready for lesson two by next week.

Monday, May 7, 2012

On the Porch

My grandmother's rocking chair bumps and creaks
Across the unfinished boards
Of the farmhouse porch
Clacking and creaking
Clacking and creaking
I hum the melody
With the crickets soft in harmony
And his blue eyes peeking up at me
Not wanting to close the day

Across the field, not yet sprouted
Misty with evening dew
Over the dark ridge of woods beyond
The horizon glows a brilliant pink
Bids the stars appear
And the light to sink
To close the day

Lone Venus shines
In the dusky blue
Through the ragged branches
Of the weather-beaten pines
They whisper to the elm
Now stripped of its bark
But somehow majestic
Covered in ivy
Sharing stories too soft to hear
For the last hundred years
To close the day

The brisk, sweet breeze
Quickens me and quiets him
Warm under his blanket
Cradled in my arms
He listens for their whispers
Gentle with the crickets
Rockers softly creaking
Slumber slowly sneaking
Under heavy eyelids
To close his day

Long after he stills
And I can no longer tell
Field from horizon
Or branch from black sky
I repeat the song, keeping pace
Preferring the weight
Of his sleeping form
To the weight of the unfinished chores
And the unspoken words
Inside the door

On the unfinished boards
of the farmhouse porch
Clacking and creaking
Clacking and creaking
I hum the melody
With the crickets soft in harmony
To soothe the wounds
Inside of me
And close my day