I t is good to love
L ittle kids love their toys
O ver the ocean there are other people that love
V ery many people love
E verywhere there are people that love
Y ou should love
O h, but there are lots of people who do not love
U nder us is China: people love there too
--Hannah Eby, age 7
Friday, October 4, 2013
Thursday, September 26, 2013
Ain't No Fwang
Toddler language development is such an amazing and joyful process. Elijah's linguistic capabilities have exploded since his ear tubes were placed three weeks ago. He talks non-stop now, straining to understand, repeating endlessly, proud to communicate his thoughts.
So far we've only hit one major hitch in his acquisition of the English language, and it's so fundamental I'm not sure how many months it's going to take to undo it, but for now, I'm actually getting more than my daily dose of laughs out of it.
You see, early this summer Elijah categorized swings, cars, trucks, trains, and other moving objects as, "WEEEEE!!!!" This was based on an entirely correct observation that adults often make that noise around moving objects. For months they were all "WEEEEE!!!!" which only solidified his understanding that they all shared a name.
Finally, I decided that my little boy should grow up and learn the proper names for moving objects. Taking him to the backyard, he announced "WEEEEE!!!!" and I corrected him, "No. SWING. It's called a SWING, Elijah. SWING." He stood silent a moment, considering the implications of this new information, then replied sweetly, "Fwang." I praised him for his great wisdom, and had no idea what I had started.
Later that night he picked up one of Toby's hot wheels cars and announced with authority, "FWANG!" I made the mistake of thinking this was cute, instead of immediately correcting it. Two months later no amount of correction will convince that child that cars, trucks, trains, bicycles, and airplanes are not to be called fwangs. They are now fwangs. End of story. Someone inform Mr. Webster.
The strange thing is, instead of getting tired of hearing this, my warped brain seems to find it funnier each time he says it.
When the school bus pulls up in front of our house each afternoon, Elijah announces, "Konk, Konk! FWANG!" (Watch out! Falling Fwangs!)
When his toy tractor tumbled down the entire length of our staircase he stood at the top and cried, "Uh oh! Fwang!" (I sure hate when I drop my fwang.)
When Grandma and Grandpa Johnson's visit ended he sadly watched them pull away. And daily he reminds me, "Bumpa ouside. Go bye-bye, fwang. Bye-bye, fwang." (Nothing worse than seeing the people you love disappear in a fwang.)
When Toby steals all the hot wheels cars for himself Elijah comes to me crying, "Toby! FWAAAAANG!" (To which I respond, "Toby, give your brother back his fwang. We don't steal fwangs in this house.)
When I carry him to his crib, he will reach desperately for any object with wheels anywhere in his sight and beg, "Fwang!" (Sure kid, have your fwang. Have any fwang you want in your crib. There's no rule against napping with fwangs.)
When Elijah wants to get out of the house he lures me with, "Come on, Mama. Fwang!" (I haven't had the heart to tell him that fwangs aren't really my thing.)
And then there was today when he asked for a turn on Toby's fwang (formerly known as a scooter) and I cracked myself up by correcting him with, "That ain't no fwang!"
Sometimes you need to stop fighting it. You need to laugh at it. A fwang is a fwang, and a fwang by any other name would never sound as sweet.
So far we've only hit one major hitch in his acquisition of the English language, and it's so fundamental I'm not sure how many months it's going to take to undo it, but for now, I'm actually getting more than my daily dose of laughs out of it.
You see, early this summer Elijah categorized swings, cars, trucks, trains, and other moving objects as, "WEEEEE!!!!" This was based on an entirely correct observation that adults often make that noise around moving objects. For months they were all "WEEEEE!!!!" which only solidified his understanding that they all shared a name.
Finally, I decided that my little boy should grow up and learn the proper names for moving objects. Taking him to the backyard, he announced "WEEEEE!!!!" and I corrected him, "No. SWING. It's called a SWING, Elijah. SWING." He stood silent a moment, considering the implications of this new information, then replied sweetly, "Fwang." I praised him for his great wisdom, and had no idea what I had started.
Later that night he picked up one of Toby's hot wheels cars and announced with authority, "FWANG!" I made the mistake of thinking this was cute, instead of immediately correcting it. Two months later no amount of correction will convince that child that cars, trucks, trains, bicycles, and airplanes are not to be called fwangs. They are now fwangs. End of story. Someone inform Mr. Webster.
The strange thing is, instead of getting tired of hearing this, my warped brain seems to find it funnier each time he says it.
When the school bus pulls up in front of our house each afternoon, Elijah announces, "Konk, Konk! FWANG!" (Watch out! Falling Fwangs!)
When his toy tractor tumbled down the entire length of our staircase he stood at the top and cried, "Uh oh! Fwang!" (I sure hate when I drop my fwang.)
When Grandma and Grandpa Johnson's visit ended he sadly watched them pull away. And daily he reminds me, "Bumpa ouside. Go bye-bye, fwang. Bye-bye, fwang." (Nothing worse than seeing the people you love disappear in a fwang.)
When Toby steals all the hot wheels cars for himself Elijah comes to me crying, "Toby! FWAAAAANG!" (To which I respond, "Toby, give your brother back his fwang. We don't steal fwangs in this house.)
When I carry him to his crib, he will reach desperately for any object with wheels anywhere in his sight and beg, "Fwang!" (Sure kid, have your fwang. Have any fwang you want in your crib. There's no rule against napping with fwangs.)
When Elijah wants to get out of the house he lures me with, "Come on, Mama. Fwang!" (I haven't had the heart to tell him that fwangs aren't really my thing.)
And then there was today when he asked for a turn on Toby's fwang (formerly known as a scooter) and I cracked myself up by correcting him with, "That ain't no fwang!"
Sometimes you need to stop fighting it. You need to laugh at it. A fwang is a fwang, and a fwang by any other name would never sound as sweet.
A Moment on the Pine-Wrapped Hill
One night on a pine-wrapped hill
Above the rocks, above the sea
You played what your heart overflowed
To say good-bye, you played for me
I held that tune a thousand miles
And loathed the distance, loathed the time
And wished to heaven it were now
When I could wrap your hand in mine
Now gazing back eleven years
I cannot see a sweeter place
Untouched by complicated tears
Unworn by this life's urgent pace
Tonight with dishes in the sink
With laundry strewn about the floor
With small feet sneaking for a drink
With clouds of duty on my soul
I almost didn't hear you play
I almost didn't hear you feel
'Till I saw your heart overflow
And watched the thoughts your fingers tell
Then saw the business fade to mist
And felt the notes shake through my bones
To call me out of all of this
Above the steady drone of chores
Above the rocks, above the sea
Onto a pine-wrapped hill
Where once you played to feel the pain
And now I see you play there still
One night in a pine-wrapped house
Below the moon, below our dreams
You played what your heart overflowed
Orange sun slipping through the trees
Notes that flowed with strength and hope
Contentment in the drudgery
A moment on the pine-wrapped hill
You play to feel, you play to be
Above the rocks, above the sea
You played what your heart overflowed
To say good-bye, you played for me
I held that tune a thousand miles
And loathed the distance, loathed the time
And wished to heaven it were now
When I could wrap your hand in mine
Now gazing back eleven years
I cannot see a sweeter place
Untouched by complicated tears
Unworn by this life's urgent pace
Tonight with dishes in the sink
With laundry strewn about the floor
With small feet sneaking for a drink
With clouds of duty on my soul
I almost didn't hear you play
I almost didn't hear you feel
'Till I saw your heart overflow
And watched the thoughts your fingers tell
Then saw the business fade to mist
And felt the notes shake through my bones
To call me out of all of this
Above the steady drone of chores
Above the rocks, above the sea
Onto a pine-wrapped hill
Where once you played to feel the pain
And now I see you play there still
One night in a pine-wrapped house
Below the moon, below our dreams
You played what your heart overflowed
Orange sun slipping through the trees
Notes that flowed with strength and hope
Contentment in the drudgery
A moment on the pine-wrapped hill
You play to feel, you play to be
Friday, September 20, 2013
Managing
Three months ago I received a phone call that completely reshaped our summer, and our lives. We had been waiting for Matt to receive an overdue promotion, waiting to be able to buy a home to live in, and waiting to feel settled somewhere where we could raise this family--the sort of feeling that doesn't come when you're in a rental home that is managed by people you don't trust. We pushed on doors that wouldn't open, and God kept us here, living in an old farm house in the center of our town's yuckiest mobile home park.
It wouldn't have been a half-bad place to live if the management had cared at all about keeping the place up: if the grass was mowed and the buildings were painted and the roads were repaired, and if I had a chance to get to know more of my neighbors. But the owners of the park lived three states away and were apparently unaware that the current management company was letting the park go to pot and laughing all the way to the bank. Our neighbors seemed nice enough, but spoke mostly spanish. My spanish was rusty at best, and I lacked the motivation to bake 40 batches of cookies in order to knock on my neighbor's doors and smile awkwardly at each other.
Our "backyard" was the common area for the whole trailer park and consisted of knee-high grass gone to seed covering litter of every dangerous variety possible: pop cans, food wrappers, and broken beer bottles so filled the yard that the lawn care company refused to mow--not that anyone cared. A twenty-year-old "swing set" sat in the middle of this jungle, just daring my children to wish for a normal childhood. On occasion I would let them put on some thick-soled shoes and venture out back, under my close supervision, but mostly we stayed inside, where I knew they were safe. Outside was out of my control, and so we waited to move. And we wondered why God kept us here.
I pushed harder on doors, determined to get us out of here. I thought maybe if I could get some extra income from home (if any actual work-at home opportunities existed that weren't total scams) we could get a loan for a half-way decent home. I toyed with the idea of working away from home one or two days a week and leaving the kids with my in-laws. We met with a counselor at a non-profit agency in town to see if their programs could help us get a house. And we were blocked at every turn. God kept us here.
On June 18th Matt informed me that some person with an out-of-state area code and a name he didn't recognize had tried calling twice, but he wasn't going to waste his time answering it. "You never know what they want unless you answer it," I reminded him, "it might be something important."
"What are the odds of that?" he retorted.
What are the odds?
That evening that same persistent person called again, and I opted to answer, against Matt's better judgement.
"Hi, is this Katherine?" he asked.
"Yes," I answered tentatively. (Not sure I really want to tell you that, strange man on the phone).
"And you live in the house at the Skyview Park, right?" he pressed.
"...Um...yes..." (Really not sure I should be giving that info out to you either, creepy man.)
"OK, well, I'm calling because I'm the owner of that park, and I'm actually wondering if you would like to manage the park for me."
Here is where my jaw hit the floor, and my brain malfunctioned from the impact:
"What in the world?!"
"Who calls people up that they've never ever met before and offers them a job out of the blue?"
"Wouldn't this be a great opportunity?"
"Can I handle all that?"
"But we were wanting to move..."
"But maybe we wouldn't have to move anymore."
"A real work-at-home opportunity?"
"No. There is no way I can handle any more stress right now..."
"But...maybe...maybe we could actually save some money. Maybe I could clean this place up and develop a good relationship with the owners and get to know my neighbors. Maybe I could like living here. Maybe this is why we're here."
And so, after my power of speech returned, we talked about it, and the more we talked, the more I realized God's unmistakeable leading in our lives, and the more excited I was at the possibility of being the new manager of Skyview. The owner revealed some of the details of the failings of the previous management and that he had offered me the job because I lived onsite, which he was realizing was essential to actually keeping an eye on the place, and because I had taken so much pleasure in fixing up this house when we moved in. He was hoping I would put some of that same energy into fixing up his park. I talked with Matt and with my parents, who all confirmed that this opportunity seemed well matched to my gifts and that it would alleviate enough stress on us to more than make up for the added stress of the position. Later that evening I called the owner back and accepted.
Why did I wait three months to blog about this? Well, first of all, I have been a whole new kind of busy for the past three months, and second, I wanted to wait a couple of months before happily announcing my miracle position just to make sure I could live through it. Three months after that phone call, I can still say that I am happy to be the manager of Skyview.
I spent the first several weeks getting bids and haggling with paving companies over fixing our pot-hole -laden roads, even before my official position began on August 1st, so that residents could sit on their front porches and watch with smiles on their faces as the pavers came through just nine days after I took over.
I put on gloves and picked up every scrap of trash covering the common area behind my house--bagfuls of trash and glass. I dug the riding lawn mower out of the barn and from under a quarter-inch of dust, sent it off for a tune-up, and lined up a resident to mow once a week. I knocked on 40 front doors and introduced myself to the residents, in English and Spanish. I walked the park with the state health inspector, then spent a day handing out notices of health-code violations, and park rule violations. I organized a pool for residents to chip in to buy a dumpster and haul out the enormous amount of large trash items that had accumulated on most of the lots. I hauled wheel-barrow loads of yard debris and trash. I even climbed into the dumpster to make more room when it was full.
I bought bags of crushed lime and dumped them on a septic system leak, then called a crew out for repairs. I showed my neighbors what weeds were and how to pull them out. I poisoned poison ivy. I planted plants around my house. I talked the tree-trimmers in our neighborhood into giving us an entire truck-load of mulch for free. My brother and his family came one day and helped us put up a new swing set and distribute the mulch under the swing set and around my house. My dad came with his power saw and helped trim all the neglected and overgrown bushes. I got some of the teens who had been prone to vandalism involved in the clean-up work, and they learned that work can be fun and rewarding.
When the state inspector returned to check on my progress he walked the park grinning and repeating, "Wow! This is fantastic!" And I felt exhausted, but fulfilled.
I have been busy developing spreadsheets, collecting rent, documenting expenses, and communicating with the owners. I have had some unpleasant confrontations, lots of interruptions to my routine, and a few too many emergency calls, but overall, I have enjoyed the challenge.
I have enjoyed getting to know my neighbors, most of whom are a delight to be around, even if we're just smiling awkwardly at each other for lack of other intelligible communication. But most of all I have enjoyed turning my kids loose in a backyard that is a clean and safe place for them to exercise, make friends, and learn some serious soccer skills from the neighbors.
A local church donated soccer goals for us, and even Matt has enjoyed getting out for the nightly game of soccer with the neighbors that is available almost every evening now. Where else can you have the pleasure of an enormous block-party in your backyard every night?
One of my neighbors recently said to me, "You work hard. Very hard. Before no one was here. No one cared. But you fix the roads and clean the park. You do a good job."
Yes, I am tired. And some days I feel the stress. But there is enormous reward in this work. I have picked up homeschooling my kids at the same time now, and (knock on wood) I think I can do this all. Maybe I have been given supernatural help. It seems there was a reason he wanted us here.
"He leadeth me, O blessed thought!
O words with heav’nly comfort fraught!
Whate’er I do, where’er I be
Still ’tis God’s hand that leadeth me.
Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me."
--Joseph H. Gilmore
It wouldn't have been a half-bad place to live if the management had cared at all about keeping the place up: if the grass was mowed and the buildings were painted and the roads were repaired, and if I had a chance to get to know more of my neighbors. But the owners of the park lived three states away and were apparently unaware that the current management company was letting the park go to pot and laughing all the way to the bank. Our neighbors seemed nice enough, but spoke mostly spanish. My spanish was rusty at best, and I lacked the motivation to bake 40 batches of cookies in order to knock on my neighbor's doors and smile awkwardly at each other.
Our "backyard" was the common area for the whole trailer park and consisted of knee-high grass gone to seed covering litter of every dangerous variety possible: pop cans, food wrappers, and broken beer bottles so filled the yard that the lawn care company refused to mow--not that anyone cared. A twenty-year-old "swing set" sat in the middle of this jungle, just daring my children to wish for a normal childhood. On occasion I would let them put on some thick-soled shoes and venture out back, under my close supervision, but mostly we stayed inside, where I knew they were safe. Outside was out of my control, and so we waited to move. And we wondered why God kept us here.
I pushed harder on doors, determined to get us out of here. I thought maybe if I could get some extra income from home (if any actual work-at home opportunities existed that weren't total scams) we could get a loan for a half-way decent home. I toyed with the idea of working away from home one or two days a week and leaving the kids with my in-laws. We met with a counselor at a non-profit agency in town to see if their programs could help us get a house. And we were blocked at every turn. God kept us here.
On June 18th Matt informed me that some person with an out-of-state area code and a name he didn't recognize had tried calling twice, but he wasn't going to waste his time answering it. "You never know what they want unless you answer it," I reminded him, "it might be something important."
"What are the odds of that?" he retorted.
What are the odds?
That evening that same persistent person called again, and I opted to answer, against Matt's better judgement.
"Hi, is this Katherine?" he asked.
"Yes," I answered tentatively. (Not sure I really want to tell you that, strange man on the phone).
"And you live in the house at the Skyview Park, right?" he pressed.
"...Um...yes..." (Really not sure I should be giving that info out to you either, creepy man.)
"OK, well, I'm calling because I'm the owner of that park, and I'm actually wondering if you would like to manage the park for me."
Here is where my jaw hit the floor, and my brain malfunctioned from the impact:
"What in the world?!"
"Who calls people up that they've never ever met before and offers them a job out of the blue?"
"Wouldn't this be a great opportunity?"
"Can I handle all that?"
"But we were wanting to move..."
"But maybe we wouldn't have to move anymore."
"A real work-at-home opportunity?"
"No. There is no way I can handle any more stress right now..."
"But...maybe...maybe we could actually save some money. Maybe I could clean this place up and develop a good relationship with the owners and get to know my neighbors. Maybe I could like living here. Maybe this is why we're here."
And so, after my power of speech returned, we talked about it, and the more we talked, the more I realized God's unmistakeable leading in our lives, and the more excited I was at the possibility of being the new manager of Skyview. The owner revealed some of the details of the failings of the previous management and that he had offered me the job because I lived onsite, which he was realizing was essential to actually keeping an eye on the place, and because I had taken so much pleasure in fixing up this house when we moved in. He was hoping I would put some of that same energy into fixing up his park. I talked with Matt and with my parents, who all confirmed that this opportunity seemed well matched to my gifts and that it would alleviate enough stress on us to more than make up for the added stress of the position. Later that evening I called the owner back and accepted.
Why did I wait three months to blog about this? Well, first of all, I have been a whole new kind of busy for the past three months, and second, I wanted to wait a couple of months before happily announcing my miracle position just to make sure I could live through it. Three months after that phone call, I can still say that I am happy to be the manager of Skyview.
I spent the first several weeks getting bids and haggling with paving companies over fixing our pot-hole -laden roads, even before my official position began on August 1st, so that residents could sit on their front porches and watch with smiles on their faces as the pavers came through just nine days after I took over.
I put on gloves and picked up every scrap of trash covering the common area behind my house--bagfuls of trash and glass. I dug the riding lawn mower out of the barn and from under a quarter-inch of dust, sent it off for a tune-up, and lined up a resident to mow once a week. I knocked on 40 front doors and introduced myself to the residents, in English and Spanish. I walked the park with the state health inspector, then spent a day handing out notices of health-code violations, and park rule violations. I organized a pool for residents to chip in to buy a dumpster and haul out the enormous amount of large trash items that had accumulated on most of the lots. I hauled wheel-barrow loads of yard debris and trash. I even climbed into the dumpster to make more room when it was full.
I bought bags of crushed lime and dumped them on a septic system leak, then called a crew out for repairs. I showed my neighbors what weeds were and how to pull them out. I poisoned poison ivy. I planted plants around my house. I talked the tree-trimmers in our neighborhood into giving us an entire truck-load of mulch for free. My brother and his family came one day and helped us put up a new swing set and distribute the mulch under the swing set and around my house. My dad came with his power saw and helped trim all the neglected and overgrown bushes. I got some of the teens who had been prone to vandalism involved in the clean-up work, and they learned that work can be fun and rewarding.
When the state inspector returned to check on my progress he walked the park grinning and repeating, "Wow! This is fantastic!" And I felt exhausted, but fulfilled.
I have been busy developing spreadsheets, collecting rent, documenting expenses, and communicating with the owners. I have had some unpleasant confrontations, lots of interruptions to my routine, and a few too many emergency calls, but overall, I have enjoyed the challenge.
I have enjoyed getting to know my neighbors, most of whom are a delight to be around, even if we're just smiling awkwardly at each other for lack of other intelligible communication. But most of all I have enjoyed turning my kids loose in a backyard that is a clean and safe place for them to exercise, make friends, and learn some serious soccer skills from the neighbors.
A local church donated soccer goals for us, and even Matt has enjoyed getting out for the nightly game of soccer with the neighbors that is available almost every evening now. Where else can you have the pleasure of an enormous block-party in your backyard every night?
One of my neighbors recently said to me, "You work hard. Very hard. Before no one was here. No one cared. But you fix the roads and clean the park. You do a good job."
Yes, I am tired. And some days I feel the stress. But there is enormous reward in this work. I have picked up homeschooling my kids at the same time now, and (knock on wood) I think I can do this all. Maybe I have been given supernatural help. It seems there was a reason he wanted us here.
"He leadeth me, O blessed thought!
O words with heav’nly comfort fraught!
Whate’er I do, where’er I be
Still ’tis God’s hand that leadeth me.
Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me."
--Joseph H. Gilmore
Thursday, July 25, 2013
Stalker
Having a child with a chronic, incurable, progressive disease is like having a child who has a monster stalking them everywhere they go. You know it will never leave, in fact you know with certainty that it will one day strike. Even now it lashes out on occasion and sinks its claws into your child. As she cries, all you can do is take her back to the doctor, who will measure the wounds and try his best to treat them, but everyone is powerless to stop the monster. One day he will pounce, and when he does, it will take every ounce of strength in you and your child to fight him. She may succeed in holding him off another 10 or 20 years, or she may not. But for now, the doctors say, he appears to be calm. For now, they say, "just relax and enjoy her."
Just relax and enjoy her, and try not to think about the monster.
Until it looks like he is about to fight. Then rally your strength, gather your support, bring to mind what you have learned, and let the adrenaline wash over you...this is it.
~~~~~~~
Yesterday I took Naomi for her next blood test since we first learned her kidneys had taken a decisive turn for the worst in late May. I had been reading up on the dietary changes we would need to be making soon: low sodium, low potassium, low phosphorus and so on. We seem to have something in our family genetics that predisposes our kids to dangerously high potassium levels since both Naomi and Toby had been hospitalized as infants for several days with that condition. So I was concerned that we'd hear Naomi would need medication to keep that level low. I had decided it was time to transfer Naomi's care completely to the children's hospital. I was prepared for the worst.
When the nurse woke me with a phone call this morning I feared the worst. But, contrary to all reasonable expectation: all was well. Naomi's creatinine level, the marker of kidney function that had suddenly and dramatically risen in May and which the kidney doctor fully expected to continue rising had (miraculously?) come back down to the same level it was at last year to 0.92. Her phosphorus level was a tad on the high side, but the other electrolytes were all properly in line. Her tiny, atrophied kidneys are still chugging along, upheld I am sure by the finger of God.
I don't know what this means. I don't know which reading was the fluke. In the last year her creatinine readings have risen and dropped, then risen even higher and dropped again. This is not supposed to be the way the numbers behave. According to every doctor I've ever spoken with, the kidney decline is supposed to be gradual and predictable, not bouncing all over the place. We know for sure from her last ultrasound that the kidneys have atrophied considerably, and it is quite surprising how well they are functioning right now, given how they appear. How long they will keep going at this point is truly anyone's guess.
This is all great news, for now. But what makes it so hard to process is the "for now" part. It's difficult to know how far to let my guard down. But we are thankful to let it down, even a little bit.
~~~~~~~
Then just as you are sure he is about to pounce, he slinks back to the shadows. It appears as if the monster is being held at bay, for now. You try your best to calm you nerves once more, to relegate the monster in your child's shadow to the shadows of your own mind. For now he is calm. For now she is "healthy." Just keep your eye on him. Just relax and enjoy her...until the next time he flinches.
Just relax and enjoy her, and try not to think about the monster.
Until it looks like he is about to fight. Then rally your strength, gather your support, bring to mind what you have learned, and let the adrenaline wash over you...this is it.
~~~~~~~
Yesterday I took Naomi for her next blood test since we first learned her kidneys had taken a decisive turn for the worst in late May. I had been reading up on the dietary changes we would need to be making soon: low sodium, low potassium, low phosphorus and so on. We seem to have something in our family genetics that predisposes our kids to dangerously high potassium levels since both Naomi and Toby had been hospitalized as infants for several days with that condition. So I was concerned that we'd hear Naomi would need medication to keep that level low. I had decided it was time to transfer Naomi's care completely to the children's hospital. I was prepared for the worst.
When the nurse woke me with a phone call this morning I feared the worst. But, contrary to all reasonable expectation: all was well. Naomi's creatinine level, the marker of kidney function that had suddenly and dramatically risen in May and which the kidney doctor fully expected to continue rising had (miraculously?) come back down to the same level it was at last year to 0.92. Her phosphorus level was a tad on the high side, but the other electrolytes were all properly in line. Her tiny, atrophied kidneys are still chugging along, upheld I am sure by the finger of God.
I don't know what this means. I don't know which reading was the fluke. In the last year her creatinine readings have risen and dropped, then risen even higher and dropped again. This is not supposed to be the way the numbers behave. According to every doctor I've ever spoken with, the kidney decline is supposed to be gradual and predictable, not bouncing all over the place. We know for sure from her last ultrasound that the kidneys have atrophied considerably, and it is quite surprising how well they are functioning right now, given how they appear. How long they will keep going at this point is truly anyone's guess.
This is all great news, for now. But what makes it so hard to process is the "for now" part. It's difficult to know how far to let my guard down. But we are thankful to let it down, even a little bit.
~~~~~~~
Then just as you are sure he is about to pounce, he slinks back to the shadows. It appears as if the monster is being held at bay, for now. You try your best to calm you nerves once more, to relegate the monster in your child's shadow to the shadows of your own mind. For now he is calm. For now she is "healthy." Just keep your eye on him. Just relax and enjoy her...until the next time he flinches.
Monday, July 22, 2013
Photo Album: The Fair 2013
We took the kids to the 4H fair yesterday evening to look at animals, rides, tractors, sights, sounds, and horse competitions.
Grandma and Grandpa Eby gave my kids their annual treat of a ride on the carousel. Elijah was absolutely thrilled when we put him on the horse:
Grandma and Grandpa Eby gave my kids their annual treat of a ride on the carousel. Elijah was absolutely thrilled when we put him on the horse:
And he was absolutely devastated when the ride stopped. It was all we could do to pry his clinging little hands from the bar as he sobbed, "No! No!" long after the other kids had already left the ride.
Thank goodness there were plenty of amazing animals after that to distract him from his broken heart.
Here is one of the most amazing fair experiences we've ever had: Meet Ollie, the 1800lb, 4 year old, Belgian horse--a gentle giant, who only wanted to play.
Naomi was fascinated at the sight of him.
And delighted with his nuzzles. Now I know how to get Naomi to smile naturally for the camera.
A little kiss for Emma...
Ollie liked my girls so much he began kicking at his gate to get out and play.
Hannah really liked Ollie, but she wasn't so sure she wanted to nuzzle with him. I love how she's totally plowing over Elijah here, to put a little more space between that horse's mouth and herself.
And yesterday's winning photograph: Ollie licking Naomi's hair. He must have liked that strawberry scented shampoo. This smile is worth a million dollars.
There were many other amazing sights and experiences at the fair as well. We spent over an hour at the horse arena watching 4H kids compete in barrel racing and keyhole racing. Naomi and I were both spellbound--the others not so much, so Matt took them for a walk to see the lights and rides. We watched fast horses and slow horses, spooked horses, rearing horses, and one that slipped going around a barrel and went down with the rider, but no one was hurt. It was fascinating and inspiring.
Is it time for the 2014 4H Fair yet?
Friday, July 19, 2013
The Beach Through Elijah's Eyes
They took me to a place called "beach"Another world entirely
Where floor is gritty, air is hot
Where wet is good and dry is not
A giant bathtub full of friends
With birds that flew over my head
The ceiling was too bright to see
A world where walls are made of trees
My mother sat me in the dirt
Then laughed and said it wouldn't hurt
When I decided that I'd munch
A fistful of the sand for lunch
She held me in the giant bath
And didn't scold me when I splashed
She didn't try to scrub my back
I never even took a nap
No crib or highchair in that place
No rag to wipe my messy face
I'd never had such room to run
I'd never known that kind of fun
I ran into the tub some more
And ran until there was no floor
And for a second wondered why
It hurt to breathe this kind of sky
Until I popped back up again
In Mommy's arms and saw her grin
And with the floor and ceiling back
We shared a coughing sort of laugh
I thought it would be funny then
To dunk and cough and cough again
But Mommy frowned and called me "dense"
I think it's her that makes no senseI didn't want to leave that place
When Mommy carried me away
She tricked me with a sippy cup
So cold and sweet...
Then I woke up
And cried to find myself at home
The land of "beach" completely gone
My mommy tried to soothe my cries
To hush my sobs and wipe my eyes
I fought to find the word to say
To tell her how I missed that place
But as my sobs grew stronger yet
All I could think to say was, "Wet."
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