Thursday, July 28, 2011

The Comeback King

He's quick. He's witty. He can crack my hard shell of frustration with one well-placed reply. Toby is the Eby household's new Comeback King.

He has heard me frequently advise the girls that their loud, repetitive noises or their overly boisterous songs are "annoying." Then, one day in the car I turned the radio on to my favorite music and I heard him yell from behind me, "No, Mommy! That's annoying!" Just yesterday I greeted the girls with a good-morning song and Toby interrupted me again, "Stop it, Mommy! That's annoying!"

He hates when I tell him to stay out of my way, so when I insisted that he turn the wooden spoon back over to Mommy while we were making pancakes together he protested, "No! No, Mommy! Bad, Mommy!"  I sighed, "Toby, just let me stir my pancakes." To which he snapped, "Just let me stir my pancakes, Mommy!" Then, seeing that I wasn't giving in, he sat down in his chair, folded his arms over his chest, stuck out his bottom lip, and pouted, "Bad Mommy. Makes my sad!"

Toby's quick to tell us when the conversation is over his head. Hannah looked at the calendar yesterday and remarked that July was almost over. He scowled disapprovingly at her, "July? Don't know what that means!" We giggled at him, but no one offered an explanation, so he sat and mulled it over. An hour or so later, when we were discussing the day's plans he confidently inserted, "Tomorrow we gonna go to the July!"

Last night, while Matt was putting the girls in bed, Toby came downstairs to use the potty then found me working to organize some stored food in the basement. It was a dirty job and his insistent attempts to stack the canned goods five-high then knock them over, were wearing down my patience. When he stole my broom and attempted to sweep the walls I grabbed at the broom angrily and ordered him, "Upstairs! Enough, Toby! You need to go back upstairs to bed right now!" He looked at me as if he was annoyed, but pitied me and remarked on his way back up the stairs, "You have too many kids."

Five minutes later, as I came up the stairs, I saw Toby was waiting for me in the kitchen. His cheery nature had revived and he happily greeted me with, "Hey, I recognize you!"

I was still chuckling when I tucked him in bed late last night. Toby wasn't tired. He and Naomi and Hannah stayed up gabbing away with each other about complete nonsense for far too long. Finally, I put my head in the door and warned them that it was late and they needed to quiet down. Toby protested, "But we're talking!"

"You've been talking all day, Toby," I answered, "and you'll talk all day tomorrow, I'm sure. Let's give it a short rest."

He is back at it today, greeting my vacuum cleaner with, "Hi, Mrs. Vacuum, do you need a haircut?" and chasing Hannah and Emma around the house yelling, "I'm a slave trader!" To which Hannah is screaming, "Run, Lucy! Run! Isn't it dreadful? We must run for Narnia!" A short rest it was.

Monday, July 25, 2011

Sunday School Streaker

"What in the world?" Matt laughed on Saturday evening as Toby ran naked through the kitchen.

"I have to go potty!" Toby yelled back urgently.

I raised my eyebrows to Matt and shrugged my shoulders, "He has to go potty. It's his third day of potty training. Who cares if he takes his pants off before he gets to the bathroom? We'll work on the proper order of things later."

Toby was doing amazingly well to have the physical ability, mental know-how, and desire to perform so well so soon after having been introduced to the potty. I wasn't about to make things more complicated for him. Silly Matt, what does it matter, anyway?

Sunday morning our small church family was gathered together for an all-ages Sunday School class, as we often do during the summer. The kids didn't mind joining the adults since we were watching a movie about the life of Gladys Alyward, a missionary to China.

Partway through, the leader paused the movie and asked if I would read a passage from a biography that described how Gladys was asked to intervene in a prison riot. I began to read the tense narrative, but suddenly choked on my words when my peripheral vision caught sight of my son. He had stripped off his navy blue shorts and his pink princess pull-up and was on his way to the bathroom on the other side of the room. "Um...Matt!" I tried to whisper discreetly.

Matt quickly scooped up the half-naked Toby and walked briskly to the bathroom, explaining, "Sorry, we've been working on potty training at our house." A quiet chuckle swept through the room, and I continued reading, but the laughter welled up inside me, and snuck out a couple of times.

OK, so maybe Matt had a point. Day five of potty training will include instruction in the proper order of pottying. Hopefully he'll have it down before we have to venture into public again.

County Fair

It was hot and humid. A large part of me wanted to continue hiding in our air conditioned house, but Toby's pleas to "go bye-bye!" finally prodded me to action. He didn't care where we went at all; he just needed action, and though the girls were less vocal, I knew they needed a dose of fresh air and excitement too.  So last evening, as the temperature was holding steady in the low 80s and the humidity was climbing, I gathered up the supplies, the stroller, a reluctant husband, and four children giddy with excitement, and off we drove to the county fair.

"Are you guys excited to see some animals?" I asked, turning around in my seat so I could see their glowing faces. "Toby, do you want to see some cows, and horses, and pigs?"

"Yeah!" Toby squealed, "and dinosaurs!" This sent all three girls into giggles, which greatly pleased Toby.

The parking attendants corralled us to the far south end of the grassy field. We were a little annoyed as we loaded up the double stroller and headed to a gate we hadn't used before, but we were rewarded when we walked in and found a young girls' 4H riding competition underway. Some of the girls weren't much older than Naomi, and she was spellbound watching them guide their horses around the arena. We stood at the fence, with the horses trotting by a few feet away. We talked about how the girls used the reins to control their horse, and Hannah had to remark that the white horse wearing the hot-pink socks and hot-pink bridle was "so pretty."

Next up was the dairy barn, where a teenage girl let us pet her small, brown cow with huge, wondering eyes. Toby was very brave until the cow lifted her gentle head to stare him in the face. "It's not gonna bite Toby," he whispered, reassuring himself. The swine barn was full of enormous, squealing pigs with wet, snarffling snouts. The goat barn held curious goats that stood on the rails of their pens and leaned their heads over to nibble our clothing. "Look, Naomi," I joked, motioning to the goats lined up at the fences to see us, "the goats think the fair is for people watching."

Matt's brother, Philip, joined up with us, and Emma glowed as she held Uncle Phil's hand and walked bravely through the barns. "Are you Uncle Phil's girl, Emma?" I asked. She smiled and answered shyly, "Yeah."

We wondered at the funny looks of the llamas in the yellow tent. Hannah laughed, "They look like they belong in Narnia."

Matt agreed, "If they had a human head they'd look just like a centaur."

We admired the long, floppy ears and the soft fur in the bunny barn. We laughed at the strange feathers and jerky walk of the roosters as they crowed. We saw turkeys, and ducks, and geese. We petted lambs and peered into an incubator of baby chicks. There was a litter of day-old piglets all snuffling and snarfing to find their place at their mother's belly. There was four-week old colt of a miniature horse. And then there were the rows and rows of antique tractors. Toby got the chance to drive one before we saw the sign that read, "Please stay off the tractors!"

After a round of hand-sanitizer, water bottles, and gluten-free snacks from the diaper bag, we headed to the carnival. The rides were far too expensive to ride, but the kids enjoyed just watching the excitement. The music blared, the lights flashed in the dusky sky, and the people around us screamed with thrill. We stood quietly, just mesmerized with the sights and sounds. We wandered among the rows of carnival games, listening to the men call our their winners, and admiring the larger-than-life prizes they offered. "Look at that banana!" Naomi said. I brought her back to reality by asking her, "But what would you do with a banana that's bigger than you?"

The sky was dark as we made our way back towards the gate, three hours later, but there was one more stop I wanted to make. The draft horse barn was filled with the most heart-stopping giants that the fair offered. Enormous Belgian horses, weighing over 2000 lbs, towered over us and leaned their awe-inspiring heads down to inspect us as we passed by. "Look at their hooves!" I urged Hannah, pointing to the hard, glossy feet the size of Toby's chest.

Hannah agreed, "Those could sure squish a Toby!"

Naomi's pace slowed and she began to complain as we trudged back to the entrance, but the sight of the horse competition ring all lit up under the dark sky quickened her pace to a gallop. We stood by the fence one more time, admiring the girls and their horses, and then it was time to leave.

"Did you like the fair?" I asked Hannah as we passed the quiet trailers and made our way through the rows of cars.

"I still like it!" Hannah insisted, with her usual desire not to let the fun die, "I like the lightning bugs and the street lights and our shadows on the ground."

The girls were drifting to sleep as we drove the quiet county roads on our way home, but Toby's eyes still glowed with excitement. "We saw all those horses!" he reminded me when I turned to smile at him.

"Yes," I agreed, "and cows, and goats, and bunnies, and sheep...Which animal do you like best?"

Toby didn't hesitate one second. "Tigers!" he yelled.

Maybe a trip to the zoo needs to find its way to our August calendar, but the Fair must have been a close second.

Friday, July 22, 2011

Potty Training Mommy

I've potty trained three girls, and none of those were pretty experiences. So when Toby began wanting to use the potty I tried to deter him. In my experience, starting early only means more months of cleaning up messes. But Toby has been so persistent in de-robing himself and putting himself on the toilet that, when a three-week break in appointments appeared in my schedule starting yesterday, I decided to give it a go.

I lined up paper towels and various disinfectants; I gave a pep-talk to the girls about being good helpers and a pep-talk to Toby about being a big boy now; and then I let him run in the buff on our tiled floor. Not long into the adventure he started to pee and, to my amazement, stopped himself mid-stream and looked at me with wide eyes. "You're peeing," I instructed Toby, "You need to do that in the potty. Here, come sit down. Put it in the potty now." And I nearly fainted when he actually followed instructions. That has been nearly the end of teaching Toby how to pee in the potty. He's a peeing pro already, with 95% average accuracy by his second day of training. Oh, if only it were so easy with that second bodily function.

The main problem with Toby's grand success yesterday was that I hadn't been prepared for it. With him performing so well I couldn't put him back in diapers, but I hadn't yet bought any little boys underwear for him. The poor child ended up in pink panties, and with his love of girls shoes, he looked like a full-blown cross-dresser by the time Matt arrived home from work. Fortunately, a quick run to Wal-Mart remedied that with some very manly Thomas the Train underwear. Toby was pleased to wear the same kind of underwear as his four-year-old cousin, and I went to sleep wondering why I hadn't trained this boy sooner. Today I was reminded.

It had been going too well. Toby had even made some decent attempts at putting his poop in the potty yesterday. Some mess is par for the course, so I was encouraged with his efforts. But today an unforeseen evil, far beyond anyone's control, an insidious evil, determined to undo my efforts, has crept into the intestines and underpants of nearly every child in my house: diarrhea.

There had been signs of this menace before I started potty training: some tummy aches, some loose stools; but today this growling bull-dog has suddenly sprouted seven heads, latched them all onto my jugular vein, and begun sucking every ounce of potty training ambition out of my blood. I fear it may not let up until all four of my children are again wearing diapers.

Toby started today with two self-led potty stops and sparkling clean Thomas underpants to prove it. So when he walked wide-eyed and stiff-legged into my office with a brown trail behind him I tried to take it in stride. "Did you have an accident?" I asked, in my most understanding voice. I coached him on the warning signs and the appropriate placement of such materials while I scrubbed him down and wiped up his trail. An hour later, in an attempt to obey my instructions he fled to his potty, brown trail following; swiped down his underpants, smearing all the way; and smashed his already coated behind all over the potty seat. I stood, breathing deeply, trying to remind myself that this was a good sign.

"Oh, did you go poopy again?" I asked sweetly, "Well, thank you for trying to get to the potty..."

"I oop in the potty!" Toby announced proudly, standing up quickly and pointing the the milliliter of brown liquid that had dripped in the proper place.

"Toby, sit down!" I barked, then, regaining composure, "you sure tried, didn't you? But you did get your underwear all messy (and your entire lower half, and the floor, and the potty...)"

"Can I have one Skittle?" Toby bargained, knowing he didn't deserve the usual three. And this was only the beginning. Shortly after I had bathed Toby for the second time and re-scrubbed underwear, potty, and floor, Toby began to pester his sisters. They responded by closing the door to their room in an attempt to keep him out. This, because of a history of finger-pinching along with its generally rude nature, is against house rules, as they well know. Toby, attempting to break into the room, accidentally pushed the sliding lock on the antique door-knob to the side, locking the girls in their room. Once they realized their plight they began frantically screaming, and once I realized that they had received just punishment (or what we often term "a life spanking") for their actions, I dawdled before freeing them from prison.

After listening to their screams for a minute I slowly made my way up the stairs, and finally unlocked their door. I raised my eyebrows to them with a confident "I told you so" look and began my speech, "Did Toby lock you in your room? Maybe that's what you deserve for closing the door on him..."

Hannah interrupted me with a pained look on her tear-stained face, "But Mommy," she cried, "I had to go potty...and I pooped in my underwear." Suddenly, I no longer felt victorious. Round three of diarrhea clean-up ensued.

I was more than anxious to put Toby down for his nap this afternoon, securely wearing a disposable pull-up. (Never mind that it was covered in Disney Princesses.) I calmed my nerves with half a cup of coffee and went downstairs to load my washing machine with infectious material. Before the washing machine was started Hannah called down to me, "Mommy! Emma just pooped in her underwear!" And I began to see the lighter side: hey, at least I hadn't started the load of wash yet.

Soon after Emma was cleaned up, Naomi and Hannah were engaged in a battle over who needed the potty worse, and I actually heard myself yelling, "Naomi if you don't hurry and get off the potty, and if she poops in her underwear, you're washing it! I'm done!"

My washing machine is doing overtime this afternoon, I am nearly out of paper towels, and my nose has started bleeding from the smell of bleach in this house. (I'm sure this isn't the best for the baby, but then again, catching a diarrhea virus wouldn't be all that beneficial for it either.) I am determined not to lose the ground I've gained in this potty-training war. I can handle this. All it takes is a plan.

"OK, anyone who is about to pee or poop in their pants line up here, in line A! Good, now anyone who has recently peed their pants here, in line B! And anyone trailing brown behind them, you're in line C! OK, line A, on the potty now! Line B into the tub, leave your pants at the hamper! Line C, don't move, don't touch anything! I'll be right with you. And line A, watch where you step!"

Nothing too it. I can handle this. How long can this virus last anyway? I just hope I don't pass out before it does.

Wednesday, July 20, 2011

Sharing Stories, Sharing Hope

I want to thank all those who have stopped by my blog in the last two weeks to read "A Letter to a Mother Considering Terminating a Pregnancy for ARPKD". Thank you to those who have posted this letter to your blogs as well, and to all who have taken the time to leave comments of hope and encouragement to me. I didn't expect this letter to reach thousands on the Internet, it was intended for one mother, but God works in ways very mysterious to us.

Sadly, I heard yesterday that the mother I had written this letter to did decide to terminate her pregnancy. Clearly, we hold different worldviews, and my letter could not change that. My hope is that others who have read my letter have been strengthened in their faith, and that God may use my words to soften the heart of another mother out there.

To my amazement, one non-profit organization called "Hunter's Hope" also contacted me to let me know that my letter touched their hearts. This organization was founded by NFL hall-of-fame quarterback Jim Kelly and his wife Jill after their son, Hunter, was diagnosed with a degenerative terminal illness. They have encouraged my heart by sending me an autographed copy of their book "Without a Word: How a Boy's Unspoken Love Changed Everything." So, in turn, I want to commend their story and their book to others who would like to read the tear-jerking, heart-warming account of their journey in faith through the life and death of their son.

Here is a clip from Jim and Jill Kelly's recent appearance on Fox News:

There is joy in sharing our stories, encouraging each other on our journeys, and bringing hope to those who follow behind us.

Tuesday, July 19, 2011

As a Father Has Compassion...

The perinatologist watched intently as the ultrasound technician measured each detail of our baby's brain and spine. I wished they'd move straight to the kidneys, but it seems these come near last in the long order of the anatomical survey. He questioned Matt and I about our previous pregnancies, wanting to know exactly what we were watching for today.

"Well, our son showed only one kidney at twenty weeks," I explained, turning my head away from the screen to talk to him, "and two of our daughters showed echogenic (bright) kidneys at twenty weeks."

I would have delved into more detail, but he interrupted me, and in one casual comment erased weeks of worry. "Well, there are your baby's kidneys right there," he shrugged, "and they look fine to me."

Reluctant to let my guard down, I questioned him further, "So you can see both kidneys? And they're normal sized? And they don't look echogenic? And the amniotic fluid level is normal?" He smiled and assured me that all looked perfectly healthy, but that they'd see me again in eight weeks to be sure. "I think you ought to leave here feeling pretty good today," he concluded. I looked back to the sweet, peaceful face of our baby on that screen and breathed a huge sigh of relief.

God has granted us a fifth child, our second son, who seems to be in perfect health. We could never take that for granted. We could not feel more blessed. Thank you to those who have stood by our side and upheld our family before him in prayer. And now, it's time to praise him.

Psalm 103

 1 Praise the LORD, my soul;
   all my inmost being, praise his holy name.
2 Praise the LORD, my soul,
   and forget not all his benefits—
3 who forgives all your sins
   and heals all your diseases,
4 who redeems your life from the pit
   and crowns you with love and compassion,
5 who satisfies your desires with good things
   so that your youth is renewed like the eagle’s...
8 ...The LORD is compassionate and gracious,
   slow to anger, abounding in love.
9 He will not always accuse,
   nor will he harbor his anger forever;
10 he does not treat us as our sins deserve
   or repay us according to our iniquities.
11 For as high as the heavens are above the earth,
   so great is his love for those who fear him;
12 as far as the east is from the west,
   so far has he removed our transgressions from us.
 13 As a father has compassion on his children,
   so the LORD has compassion on those who fear him;
14 for he knows how we are formed,
   he remembers that we are dust.
15 The life of mortals is like grass,
   they flourish like a flower of the field;
16 the wind blows over it and it is gone,
   and its place remembers it no more.
17 But from everlasting to everlasting
   the LORD’s love is with those who fear him,
   and his righteousness with their children’s children—
18 with those who keep his covenant
   and remember to obey his precepts.

Monday, July 18, 2011

What Tomorrow Holds

Little Baby,

Tomorrow the world will decide
Whether you are worthy of life
They will use their best instruments
To painstakingly measure
Each tiny feature of your forming body

They will compare what they find
With the millions of others they've studied
They will make their best educated predictions
As to how long and in what way
You would live on this earth

And they will base the value they assign to you
On the numbers they have gathered
They will advise me to keep you alive
If they predict that you will live a long life,
Feel little pain, and cause me little discomfort

They will advise me to end your life as soon as possible
If they predict that you would not live to a full life expectancy,
That you may have to endure suffering,
Or that it may difficult for me to walk beside you
As you struggle through your life

Little Baby,
Tomorrow I will love you
As I have loved you today
Tomorrow I will protect you
As I have protected you
Since the day you were sent to me

Perhaps I will breathe a sigh of relief
When the medical experts predict
A long healthy life for you
And an easy, predictable road for me

But if they deem you unworthy of life
If they advise me that you would prefer not to live
And that the world would benefit
From not having to meet the challenges
Your unique life would present it
I will fight for you

I will fight for you
Because life's value is more than an equation
Than can be computed from the days of life
One is predicted to live
And the degree of hardship they are predicted to face

I will fight for you
Because my love for you is not founded
On what you can offer to me
Because love does not recoil at the prospect of pain
Or abandon when another suffers

I will fight for you
Because ending your life early
Would rob you of the chance
To see the sun's rays peeking
Between the ominous clouds
To learn the blessing of enduring
When everyone tells you to give up
To know the peace of resting in warm arms
That would not leave you in your darkest hour

I will fight for you
Because the world may not know that it needs you
But I know

They have forgotten that life without trials
Brings laziness, discontentment, and self-centered greed
They have forgotten that in giving ourselves
For the helpless, the hopeless, the defenseless and innocent
We learn patience, endurance, thankfulness, and selfless love
In laying down our own hopes, and sacrificing ourselves
We find greater joy than our own dreams
Could ever have brought us
I learned this when I fought for your sisters' lives
And I pray that I can teach them as I fight for yours

Little Baby,
Tomorrow we only learn their best guess
As to what sort of life we will share
But I promise our ways will not part
Until the hands that placed you in my safe arms
Reach down to lift you back to His

Thursday, July 14, 2011

Low White Cell Counts: Follow-Up

I just spoke with a nurse who finally released Naomi's labs to me. The white cell count rose slightly to 4.2, well below the minimum 5.2, but increased enough that it is not dangerous. We will just continue watching, probably with another count in a month. We do not know for sure what is causing the low counts, but it isn't low enough to warrant lots of investigation. I guess we just pray they continue to climb without intervention. Thanks for your prayers.

Wednesday, July 13, 2011

Low White Cell Counts: Naomi's Next Challenge

I'm spending another afternoon waiting for test results today. Naomi's white blood cell counts have been progressively dropping over the last five months. White blood cells counts are supposed to be between 5.2 and 14.8 K/mm3. In February Naomi's levels were 4.7, in May 3.6, and in June 3.0. In June Naomi had a terrible time getting over a stomach virus that went through our family. She had awful diarrhea for a week and lost four pounds, then was excessively tired and listless with low appetite for another two weeks. This is almost certainly due to her body's lowered ability to fight infection without the proper number of white cells.

We had another Complete Blood Count drawn yesterday, and I am anxiously awaiting word now. It's difficult not to speculate about what all this means. I have a detective's mind that is endlessly trying to draw connections to help understand my daughters better. Sometimes this gets me in trouble, but sometimes I am right and my thoughts prove valuable to helping the doctors treat my children. As writing seems to be my best therapy, I'm writing out my thoughts today.

I was told that if the counts dropped below 3.0 at all it would be considered dangerously low and we'd be referred to a hematologist for follow-up. The most likely explanation for the low count is that Naomi's liver fibrosis has progressed to where the blood in the portal vein cannot easily flow though the liver, causing portal hypertension (high blood pressure in the portal vein). This is an extremely common result of congenital hepatic fibrosis. The pressure in the portal vein causes the spleen to enlarge and small blood vessels in the esophagus may burst, causing life-threatening bleeding. The spleen under pressure may begin to sequester or trap platelets and/or white blood cells. Typically an enlarged spleen with low platelet counts are the first signs, but a slightly enlarged spleen with only low white counts can be the first sign as well.

Obviously, there are other explanations for low white cell counts including immune-system disorders where white cells are destroyed in large amounts (since Naomi has one auto-immune disease already this is not entirely out of the question), and bone-marrow disorders where white cells are not produced in sufficient quantities. However, I think the theory of the spleen trapping the white cells because of portal hypertension is most likely.

If this proves to be the case we are probably looking at four options:

1) Shots of a medicine that forces the bone marrow to produce more white cells, though if the spleen is just going to trap these again this seems an unlikely solution.

2) Surgery to place a shunt from the portal vein to another major vein. This allows some of the blood in the portal vein to be rerouted off of the backed-up portal "highway" to a less-crowded side road that leads to the body's main "interstate highway." This is an effective way to relieve pressure on the spleen and the vessels in the esophagus. It is proven effective at restoring blood cell counts and preventing esophageal bleeds. The problem is that the blood in the portal vein was bound for the liver for a reason: it is full of toxins that need to be filtered out by the liver before being released to the rest of the body. When a shunt sends portal vein blood to the main vascular system again these toxins can reach the brain and cause slowed brain waves (hepatic encephalopathy) in 1/3 of shunt patients. Naomi has enough issues with clear thinking already; I am not anxious to add encephalopathy to her troubles.

3) Removal of the spleen. This would restore normal blood counts, but does not lower pressure in the portal vein and so does not prevent the life-threatening esophageal bleeds. When the spleen is otherwise healthy and normal sized this is often not the option of choice.

4) Liver transplantation. Now that organ transplantation is becoming more common and successful, and now that it is possible to transplant one lobe of liver from a living donor this is fast becoming the treatment of choice. The fibrosis does not recur in the donor liver, portal vein pressure is restored to normal, the spleen can remain intact, blood counts return to normal, and there is no longer a risk of esophageal bleeds or the liver infections that often plague kids with hepatic fibrosis. Of course, there are the draw-backs of major surgery for both donor and recipient, life-long immune suppression therapy for the recipient, and the possibility that the liver may be rejected or may need to be retransplanted later in life.

As I wait for the phone to ring, none of these options sound appealing to me. I would like to hear that Naomi's white cell counts have inexplicably returned to normal levels and that no further follow-up is needed, but that probably isn't what I'm going to hear. I will post again when I have more information.

Sunday, July 10, 2011

Toby Wins the Word Battle

Yesterday Toby was shadowing my every move as I cooked dinner, as he always does. I turned my back for a minute, and he cautiously picked up a knife from the table. Emma spied this from across the room and yelled, "No! Goby! No ay!" (No Toby, no knife). I turned to Toby and scowled at him with a "put that down right now" look.

Toby was disgusted with Emma and fired angrily back at her, "Go away, Emma. Why don't you go play with toys!"

I stood a moment processing what he had just said, but it didn't take me long to figure out where he'd learned that language. I think I've used those same words to him when he was driving me nuts before. His amazing ability to remember phrases and idioms and use them correctly with appropriate intonation at the age of 2 years, 4 months leaves me astounded every time. It might be time for me to start watching what I say to him.

Tonight Toby dragged a bag of toys into my office and announced, "I've got myself and my bag!" Yourself is all you're ever going to need, Little Buddy.

Thursday, July 7, 2011

A Letter to a Mother Considering Terminating a Pregnancy for ARPKD

I joined the yahoo group for ARPKD/CHF (the genetic kidney/liver condition that Naomi and Emma live with) just a few days ago in order to post a question about Naomi's recent low white cell counts. Now I have found myself in a world with hundreds of others affected by this disease. Most are asking questions like mine, or sharing support and comfort, but this morning a mother posted that she had just received the news that her 13 week gestation unborn baby has ARPKD/CHF (definitive genetic testing had been done). She is considering terminating the pregnancy in order to avoid the otherwise inevitable suffering of her child. Many on the message board have also chosen that option, so I chose my words carefully, but I just could not remain silent. The following is my response. Please pray for Emma as she makes this most heart wrenching decision.


I am so sorry that you received this news. Please know there are hundreds around you who have been in this same or a very similar position. We know the pain that facing this decision brings you. Many others before you have followed the advice of doctors, family, and friends to terminate such a pregnancy. I understand that the decision they make is almost always out of the highest love for their child and a desire to prevent suffering. I want to be very sensitive to that, but to also encourage you to look from a different point of view.

It seems to be a foregone conclusion in our culture that preventing suffering is the highest goal, but I think we lose sight of the fact that sometimes in our lives the greatest blessings come to us after we have gone through the greatest suffering. I was advised to terminate with two of my ARPKD daughters after their 20 week ultrasounds. The following weeks, months, and years have been difficult and even terrifying, but I am so glad that I did not follow my doctors’ advice. Yes, my daughters have suffered to some degree (though I know not as much as many other ARPKD kids do), but their pain and tears have grown them into strong little girls who do not take life or health for granted, and who know how to be thankful for the little things in life. They are more mature, more wise, more grateful, more loving, than so many other children their age who have always had “perfect” lives.

Children with special needs have a way of blessing and inspiring those around them too, in a way that healthy children never could. I know greater suffering probably lies ahead for our girls as we face esophageal bleeds and organ transplantation, but we have talked these things through with our oldest, and if my seven year old daughter can face these things with courage, then perhaps she doesn’t need to be shielded from the suffering, but only equipped to walk through it. Someday my girls will take the faith and the strength that they learned from their sufferings and use it to inspire and bless all those around them. It would have been great loss for all who know them to have ended their lives early.

I know that this is one of the most sensitive and personal topics. I pray that I do not sound judgmental in any way. I only mean to offer hope.

With love,

Katherine Eby

Wednesday, July 6, 2011


Naomi and Hannah were anticipating the Fourth of July celebration ever since they remembered that July is the month that follows June. "We're going to go see fireworks!" Hannah informed Toby. "You'll like fireworks! They make a loud BOOM!" And after that cat slipped out of the bag Toby wouldn't stop asking if today was the day we were going to see fireworks.

When I laid him down for a nap on July 2nd he cried, "I not going nigh-night! I going to see fireworks! Makes loud noise!" I stretched the limits of his two-year-old brain by assuring him we would see fireworks together "the day after tomorrow." Thankfully, he fell asleep trying to figure that one out.

We tucked the kids in bed by 8:30pm on Sunday the 3rd and talked about seeing fireworks the next day. Then, with a phone call from my mother-in-law, I realized I had wrongly assumed that the show we'd been planning on seeing as a family was on the 4th. It was actually set for 10:15 that night, in less than two hours. Frantically, I gathered diapers, wipes, snacks, sippy cups, blankets, sweatshirts, bug spray, a double stroller, and a wagon. I scoped out the best place to park and walk online, then Matt and I loaded four very excited children into the van, still in their pajamas.

We arrived a little after 9:30pm, but ended up having to park 3/4 of a mile away, a bit farther than I'd planned. With Toby and Emma in the stroller, and our enormous pile of supplies in the wagon we began the speed-walk race to the show with Naomi and Hannah skipping ahead. "Oooohhhh!" Hannah squealed, each time someone in the neighborhood lit off one of their own fireworks. "This really is the Fourth of July! It really is, because those are fireworks. I know because they make that loud boom, and they look like real fire! Real fire, Emma, see? So I know it's the Fourth of July! It really is! And we're going to see more fireworks, even bigger ones, and....Ooooohhh! There's another one! Did you see that Naomi? Mommy, did you see that? That was a real firework! It looks just like real fire!"

I wasn't sure whether my legs or my ears were more tired by the time we found our place among the throngs and settled down on our blankets. Fortunately, the crowds of moving, chatting people decked out in glowing necklaces entranced my children, and even Hannah found herself speechless. Even better, every mosquito in the city seemed to have already drunk its fill by the time we arrived and I was spared the ordeal of bug spraying the kids. I distributed baggies of apple slices and we quietly munched as the sunset disappeared.

Naomi squinted and covered her eyes as the first few flares lit up the sky. "It's too bright," she complained, backing off our blanket a few feet, as if that extra yard would protect her eyes from the light. Toby quickly scrambled into the safety of my lap, then sat happily mesmerized with the show. Hannah and Emma's faces glowed as they smiled quietly at the colorful sky. One of the first loud "Booms" set the tiny baby in my tummy kicking and squirming. I had just read about how hearing and reflexes were intact by this point in my pregnancy, and I've no doubt that little boy was startled by the sound. I snuggled Toby in close over my tummy to muffle the noise for his little brother.

"Look at Toby," I whispered, nudging Matt beside me. Toby had suddenly reached both hands high into the sky above him and silently held them there. We chuckled a little, then Toby gasped, straining his little voice, "I can't reach them!"

It was a spectacular show, but, of course, over too soon. We packed up and quietly made our way through the crowds. It wasn't until we were walking again through the dark, less crowded neighborhood that Hannah found her voice. "Those sure were fireworks!" she sighed. "Maybe we'll still see some more. Maybe more people aren't done with them yet. Oooohhhh! There's one! See? I told you there would be more fireworks still. The Fourth of July isn't over yet, because it isn't really even the Fourth of July yet. It's only the third today. So the fireworks aren't done. I'm glad, because I like the Fourth of July. Right, Emma?" But Emma was already sound asleep in the stroller. "Well, right, Toby?"

"Makes loud noise!" Toby agreed.

"We'll probably see some more in Grandma Eby's neighborhood tomorrow," I reassured Hannah. "And we'll have a cookout, and you can go swimming."

"I just can't wait!" Hannah squealed. She was not disappointed, and now we have fuel for the imagination for a whole nother year.

Today, if you visited my house you would hear little girls asking each other, "Who wants to pretend seeing fireworks? How about Narnian fireworks?! I bet they have fireworks in Narnia!"

Tuesday, July 5, 2011

Into the Wardrobe, with No Hope of Return

Matt has been reading through C.S. Lewis' Chronicles of Narnia with our girls at bedtime for several months now. The story has filled their minds and our lives for weeks on end. Each "Little People" doll in our house is now designated as a character from the story. Paper towel rolls have been transformed into swords. Two egg cartons, cereal boxes, and yarn have been intricately designed into an exact replica of the Dawn Treader. Finger-paint swirls are a Narnian landscape at sunset. Play time now holds epic battles against the White Witch or Miraz's army. And I have lost the privilege of calling my children the names I chose for them.

The girl I used to call Naomi now answers to "Susan." Hannah fires an angry response my way each time I forget that she is really "Edmund." Emma doesn't mind being called Emma, but the others are quick to remind me that her name is "Lucy." "Peter" is always present, I just can't see or hear him. Toby announces with a grin, "I Caspian! Prince Cas-Pi-An!" "Reapacheep" also haunts our house along with a female counterpart mouse named "Dally" that Hannah imagined to keep him company.

My children have all acquired something of a British accent as well, no doubt from hearing how the characters talk in the movies. If I question my children about spilled cereal I am likely to hear the response, "Eet wahs prohbably Reapacheep. He's ahlways geetting into trohble. Reap-a-CHEEP! Geet in thah ahnd clean up yah mess!" Or a slightly more realistic, "Go ahsk Prince Caspian."

It's hard for Susan, Edmund, and Lucy to understand that their cousins and church playmates don't understand or enjoy living in Narnia the way they do. No matter how they try to explain to their cousin, whom they've dubbed "Eustace," that the boat in the swimming pool is actually the Dawn Treader in a vast Narnian ocean, all he wants to do is sink it. This infuriates Susan, and she sometimes has to be removed to a Narnian time-out to be reminded that not everyone realizes they are in Narnia yet.

I have been assigned multiple roles in this drama, probably based on my children's disposition toward me at the time. While overseeing the evening toy clean-up I have heard all of the following from my children: "The professor wants us to clean up our toys, he's tired of stepping on them all the time," "Yes, you have to clean up, Edmund. Aslan says so, and you have to do what Aslan says," and my favorite, "The White Witch just told us to clean. Don't do it, Susan. Don't do what the Witch says!"

I probably ought to scold my children for this disrespect, but I get better results if I play the part and offer them some Turkish Delight if they clean, or threaten to turn them all into stone when they don't. Somehow, imagination suddenly transforms toy clean-up into a race to save their lives from the evil witch. We soon find ourselves laughing, in the clean castle at Cair Paravel and enjoying "Narnian Popsicles," which, according to Edmund, taste "much better" than ordinary Popsicles. Yes, of course, everything tastes better with a little imagination added.