Cascade

Today Matt got called in to work, so I started the day with packing a diaper bag, a medical binder bag, a lunch, water bottles, and coffee. Then I drove 5 kids 90 minutes to Naomi's nephrologist. He said the rise in Naomi's creatinine was too big to be due to discrepancies in laboratory equipment alone--in other words her kidney function has definitely declined, at least some, since last December when it was last checked. He felt it was probably the beginning of a more steep decline in function now. He explained it like this:

Every person has a certain number of glomeruli--tiny tufts of capillaries which carry blood within the kidneys, and which filter or remove toxins from the blood. Most people could lose half of these glomeruli, (one of their kidneys) and never notice the difference because we are born with way more than we will ever need. Naomi was born with kidneys that were filled with thousands or millions of microscopic cysts which have rendered many of her glomeruli useless. When she was four years old we were told she still had about 60% of her kidney function, meaning about 60% of her glomeruli were still functioning, which was plenty to carry her through the last few years. But ARPKD is a progressive disease. The cysts continue to form and they continue to knock out the glomeruli with them, which causes a progressive decline in kidney function. Children with ARPKD progress to end stage renal failure at vastly different rates--some need dialysis within days of birth, while others have made it into their 20s and even 30s before needing dialysis or transplant.

All this I knew before, but what came clearer to me today in his explanation was this: there is a sort of tipping point for many kids where they hold steady for many years with their 60% or so of kidney function, where the kidneys are chugging away at a normal rate and able to handle the demands on them normally, but when enough glomeruli have been destroyed that the remaining 40% or so have to work harder than normal to keep up with demands it can actually cause the demise of the remaining glomeruli to occur faster. It's like a man trying to work double-overtime for months on end--sure he can do it for awhile, but eventually he's going to burn out.

It appears that Naomi's kidneys have hit this tipping point, where the demand is greater than they are able to comfortably meet. This starts the cascade: the kidneys work harder to meet the demand and more and more glomeruli begin to burn out, which only further stresses the kidneys, which only causes their demise faster. How fast she progresses to end stage renal failure, and needs dialysis or a transplant is still a guessing game. Just as one man can work double-overtime for years on end, while another burns out in a matter of months, so it goes with kidneys. I think Naomi's nephrologist would guess that we have a few years--maybe two, maybe six--we really don't know, but I don't think anyone is expecting decades anymore. The hope of Naomi reaching her 20's or 30's without transplant is pretty much out of the question now.

Right now he wants an ultrasound of Naomi's kidneys, since it's been over two years since her last one, just to make sure we don't see anything terribly abnormal (well, besides what we already know is terribly abnormal about them). Then we will repeat blood work in two months. We will not only be watching Naomi more frequently now, but also more thoroughly. Her kidneys are now at the point where their poor function can cause other problems to arise, such as anemia, parathyroid dysfunction, and electrolyte imbalances. I will probably be taking Naomi to the nephrologist every three months or so for the near future.

For the first time today we discussed what will happen when Naomi gets closer to transplant. Our current nephrologist does not work at a hospital that can handle pediatric transplants. He is comfortable following Naomi until either her creatinine reaches 4.0, or her symptoms become complicated by anemia, fatigue, or other renal failure issues. At that point we will have to transfer all of Naomi's care to the children's hospital that is 3 1/2 hours from our house, and we will have to get used to living on the road. This is the hospital where Naomi's GI doctor is, and it may benefit her to have all of her care coordinated at the same place even sooner, but that is something that is really up to me to decide.

Yet another decision we will have to make as this all unfolds is whether Naomi would benefit from a combined kidney/liver transplant or whether to transplant just the kidney and hope that her liver holds out without major complications. We know she currently has portal hypertension. We know this is causing her white blood cell counts to drop, and puts her at risk of episodes of internal bleeding or life-threatening infections. The question will be, as we get closer to kidney transplant time: is her liver going to be in need of transplant as well in a short amount of time and would it be better to just do them both at once? I know of at least one boy who had only a kidney transplanted, and has spent the last nine months since transplant battling one liver-related complication after another and is now looking at liver transplant less than a year after kidney. These are very difficult decisions to make, but the two best experts on ARPKD/CHF have recently released a paper recommending that children with significant liver involvement should receive combined transplants. The question will be, is Naomi's significant enough to warrant that?

There will be other questions to face as well: should we use a living donor or deceased donor? Who should be tested for donor compatibility? Should we get used to commuting or look for temporary housing nearer to the children's hospital? And the list goes on... But those questions are for another day. We could possibly still have five or six years (maybe more?) before we need to face them.

Today Naomi feels great. She's playing "fairies" in our backyard with some neighbor kids as I type. She's excited to be in swimming lessons. She's looking forward to going back to LoveWay for horse riding next week. She's a normal kid, in so many ways, and I have to remember to be thankful for the last nine years of "health" that she has had. They have been a blessing.

I'm not sure how to feel about all of this quite yet. It is sad to let go of the hope that Naomi would reach adulthood before this all happened. It seems very overwhelming to think about, yet could be so many years away that I can't get all bent out of shape over it just yet. The next round of blood work in August will tell us more about how steeply the decline is happening. If the creatinine stays the same, we may be able to breathe easier on another plateau for awhile. If it is steadily rising, we will have to buckle up and hold on. Time will tell.

The Inevitable Decline

Since we pulled food dyes from Naomi's diet in May 2011 she has enjoyed an amazingly long period of relative health. She does have a cyst in the pineal gland in her brain, which warranted five MRIs at the children's hospital to watch for growth, and a spinal tap that landed her in the hospital for a week in September of 2011, but other than that, things have been relatively calm.

When Matt and I stood over her bassinet in the Neonatal Intensive Care Unit nine years ago and listened to the nephrologist inform us that out tiny new daughter would one day need a kidney transplant, we pushed him for times. He didn't want to make predictions, but his best guess would be around the age of puberty for Naomi because her kidneys had only a limited amount of function in them, and as children tend to add more body mass with puberty, they often outgrow their kidney function at that time. Nine years ago that seemed like the wonderfully distant future.

We have waited and watched, and been constantly thankful each time Naomi's kidney function is checked and shows that it is holding steady at around 60% of normal. Her ultrasounds and CT scans always remark at how abnormal her kidneys look. They are full of cysts and scar tissue, and are far too small for her size. A CT scan report from 2011 reads, "The kidneys are diffusely abnormal. They are malrotated. There are multiple right renal lesions. There are multiple areas of bilateral renal cortical thinning, suggestive of prior episodes of infection/infarction." Her last ultrasound report summarized the findings as, "Atrophic, hyperechoic bilateral kidneys," (which means they have atrophied and are filled with microscopic cysts that make them appear bright on the ultrasound image). And yet her little, browbeaten kidneys have chugged on. We have always known renal failure, dialysis, and transplant were coming, but in some ways, we'd almost forgotten.

Last fall Naomi suddenly began to gain weight. We searched for answers--looking at possible fluid retention, checking her thyroid gland, and even locking up the snack foods at our house so she would have less temptation to overeat--yet she continued to gain. Last Tuesday I took the three girls to the children's hospital for their six-month check-ups on liver disease and celiac disease. There the GI doctor confirmed what I had begun to suspect--Naomi is showing some possible signs of early maturation. (...Insert heavy sigh here...) This could be "normal" as many girls are maturing at an earlier age now, but she only just turned nine, and I have a hard time seeing that as anything close to normal. It is also possible that that cyst in the pineal gland has grown or is causing the secretion of hormones too early, so the GI doctor wants me to check with the neurosurgeon who had followed the cyst and also to send Naomi to see an endocrinologist.

This is bad news all on its own, but grew worse yesterday when the nurse called me with last week's lab results. Naomi's creatinine (a marker of kidney function) has suddenly risen over the last six months, which means that (unless we're dealing with a lab error of some sort) her kidney function has declined quite a bit. When she was a baby her creatinine sat around 0.7 (somewhat higher than normal, but pretty good for her condition). As she's grown it has slowly risen over the past nine years to 0.9 (still not too bad). Last week her creatinine came back at 1.24, which is a sudden 30% increase and could (trying not to jump to conclusions here too quickly) put her kidney function down from her "normal" of 60% to more like 40%. End stage renal failure is between 15 and 20%, where the creatinine level would likely be around 3 or 4.

I am afraid that as Naomi has gained weight (and possibly even entered puberty) that first nephrologist's predictions are coming true--she may finally be outgrowing her limited kidney function. How fast she will outgrow the remaining roughly 40% of function she has is still a guessing game. I have heard that it can happen in a matter of months or over several years. Today I am waiting for a call back from her nephrologist to see if he got these lab results from the GI doctor's office yet or not, and to see what he wants to do now. I am guessing he will want to see Naomi in his office and repeat the blood work, since different lab equipment can sometimes give slightly different results, and that he will need to watch her more closely now.

Today I am re-imagining what going through a kidney transplant would look like for Naomi. She is still so young for that. I am praying that it was a lab error, or that we can slow her weight gain, or that there is a medication they can prescribe to slow down the deterioration--praying for a few more years. I am praying for some sort of good news. And I am waiting.

Healing Naomi

When we moved in with Matt's parents in the summer of 2009, our family's diet went downhill right along with my morale. There were enough stresses with losing our jobs, losing our house, finishing a dissertation, and moving in with the in-laws, that cooking healthy meals for the family was honestly the last of my worries. When we lived at Cono, we ate two (relatively healthy) meals a day in the dining hall.  But starting the summer that we moved our diet became loaded with boxed mac and cheese, frozen pizzas, hamburger helper, chicken nuggets, and the like--if it was quick and cheap we ate it for over a year. What I didn't correlate at the time was how Naomi's health declined in perfect parallel with our diet.

Her social skills (which had always been a struggle) took a nose dive, she had a sudden spike in horrific temper tantrums, she had trouble at school and needed constant discipline at home. She had a lot of stomach aches. Nine months later she began to be plagued by joint pain and headaches. In September of 2010 Naomi was diagnosed with Celiac disease and we pulled all gluten from her diet. We also pulled dairy in the hopes that it would help as well. Naomi improved in many ways after these changes: the stomach aches lessened and her energy rebounded. But in many ways she grew worse.

The tantrums grew so severe that dealing with the hour-long fits of rage multiple times a day nearly consumed us. She would scream with such force that she burst tiny blood vessels in her face, she would spit and foam at the mouth, she would break items--all this even though we had never, ever, given into a tantrum in her life. We consistently and firmly disciplined the behavior, but it did no good. Her first grade teacher was at a loss. Naomi was brilliantly smart and enrolled in their high-achievment classes, but she refused to participate. She caused disruptions in the classroom by constantly kicking her legs into desks while she worked, not cooperating with transitions between subjects, and even physically fighting with other kids. Matt and I were told that we might have to sign a release for Naomi to be physically restrained if she posed a danger to herself or others.

I felt like we were losing her. She had two completely opposite sides to her: the very sweet, very bright, very eager to please side--which we were seeing less and less of; and the other scary girl who would suddenly take over her body and seemingly cause behaviors beyond her control. When the scary child would finally fade away I would find myself staring into the face of a six year old girl with dark circles under her eyes, bright reds specks from burst blood vessels all over her face, and eyes full of weariness and remorse. She never could remember much of what had happened, only that she hated it as much as we did, but she was powerless to stop it.

In January of 2011 when we moved into our own house, we pulled Naomi from public school and began to homeschool her. This was an incredible relief to Naomi and brought much behavior improvement, but the joint pains and headaches became nearly debilitating. She cried daily in pain, avoided the stairs, avoided active play, and buried herself in books. In May 2011 her formerly benign heart murmur worsened and her mitral valve began leaking. What I didn't know then was that Naomi showed many signs of chronic inflammation. But I did finally draw the connection between birthday parties and an intense worsening of all of Naomi's symptoms. The cakes were already gluten and dairy free, so I pinpointed the culprit as the huge amounts of food dyes in the frosting. When we pulled all food dyes from Naomi's diet (strawberry Nesquick and "fruit" snacks were two big sources) the headaches and joint pain disappeared almost completely within two days. It felt like a miracle. But even more miraculously the temper tantrums vanished as well.

Within two days of pulling food dyes our daughter returned to us: attentive, affectionate, eager to please. Two years later I can still affirm: if we keep her diet free of gluten, dairy, food dyes (and other foods with high phenol content), and most preservatives, she remains a "healthy" eight-year-old girl. And if she accidentally gets a dose of any of these things, we can tell almost immediately.

Now here is more wonderful news for Naomi, just in from the cardiologist this morning: remember that heart valve that had begun leaking? It's not leaking anymore! He can't say why it started leaking. "The leaflets of the valves look normal," he had told me. And he can't say why it stopped leaking, just that it's good news and we don't need to see him anymore. I think I can tell you why though: chronic inflammation can cause heart valve damage, and resolving that inflammation can allow the valve to heal. Here's a link to a Wall Street Journal article that is a great read on this subject.

Why do I blog about this? Because I want you to celebrate with me. Naomi is healing! She will not heal from her kidney and liver disease, which is caused by a genetic mutation, but she is healing from all the assaults of her environment that have added insult to injury in her young body. But I also want you to share this information: there are many, many children who, for whatever reason are very sensitive to the foods they eat.

Do you know other parents who are struggling with children who have chronic pain and wild tantrums? Tell them that diet changes can help. Many parents of children with ADHD, Autism, and other psychiatric diagnoses swear that diet changes resolve symptoms. Lastly, if you see a child throwing wild, out of control tantrums in public, who is far beyond the normal age for tantrums, please don't assume you are witnessing the results of bad parenting. Sadly, it is more and more common now for children to have physiological, neurological breakdowns due to food toxicity, and it is safest for you to assume you are witnessing this kind of meltdown. Be informed, be part of the solution. Kids are what they eat. Some just show us in a more obvious way.

Today I feel encouraged: it's worth it. All the months of special diet shopping, and special diet planning, and special diet cooking are worth it. Naomi is pain free, she is pleasant, and beautiful, and her heart doesn't leak anymore. It's worth it.

Fresh Air

The fatigue had crept over me so subtly I hadn't realized how bad it had become, only that I longed to sit at my computer, and that it was taking more and more coffee just to get me through each day's basic chores. Sometimes when you have been tired for so long you forget what tired feels like, you forget how to shut down, relax, take a nap, or smell a flower, but you don't realize that you've forgotten. I began coaching myself on, bribing myself, "Come on, Kathy! Get up and do one load of laundry and then you can sit down again with a cup of coffee." I was secretly happy that the winter weather hung on so long, because I felt exhausted just thinking about spring time. How in the world could I handle taking the kids swimming and biking and to all the other outdoor activities that warm weather required when I was barely keeping it together sitting in the house day after day? Then there came a point where the coaching and the coaxing couldn't make this body go any longer, when I was just done.

I haven't blogged in a month because I've been so busy, but it has been a very different kind of busy than the previous year--I have been busy healing. This month I have been busy having surgery to remove an inflamed gallbladder with gallstones, and healing from the surgery. But even more, I have been busy reassessing my life--my daily habits, my priorities, my goals. I have been busy letting other people take care of me, remembering how to relax and renew my spirit, remembering the joys and the goals and the passions I had before I had five children, and trying to find ways to incorporate all these into my life now. Thanks to the generosity of my parents, my husband, my neighbors, and my friends, I have been taking naps, visiting coffee shops, reading good books, shopping for new clothes (yay for Goodwill!), going for long walks outside by myself, and even going on a few dates with Matt.

People have been asking how I've been doing. The first week after surgery was really rough. The pain was not so much a problem as the nausea and the burden of wondering if I had done the right thing. But slowly I began to feel better, the nausea left and I told people, "At least I'm not any worse than before surgery."

Two weeks after surgery I had a few days where I felt like I might have some extra energy, but they were always followed by more tired days. The chest pains and nausea finally stopped completely. I dared to hope then that I was on the right path.

Now, just over three weeks from surgery I can announce (knock on wood here) that I am feeling much better! If I get nine consecutive hours of sleep per night (and it has to be nine, eight doesn't cut it yet) I can actually wake up feeling well rested--a feeling I had almost forgotten entirely. I feel ambitious, like I want to paint the ugly back door, and clean the minivan, and scrub the shower, and cut Toby's hair all before lunch. Of course, making breakfast, getting a shower, and keeping Elijah from killing himself is usually more than enough to fill the morning, but at least I finally feel energetic doing those things. I have actually had mornings where I got all those things done and then realized I hadn't even thought about drinking coffee.

Two days ago, when the warm weather swept in. I spent the morning removing storm windows and putting up screens. I took the window insert out of our back storm door and fastened the ghetto screen insert in place. I duct taped the loose edges and the holes to move it from the "ghetto" category to "redneck"quality and felt pretty good about my achievements as the warm breeze swept in through the few remaining porous surfaces. But yesterday I got even more ambitious. Matt offered to clean up from dinner and put the kids to bed! (!!!) So I ripped that screen door back off the frame, and I got out my hammer, pliers, screwdrivers, wallet, and car keys. Two trips to Menards later, I had all the supplies I needed to improve that screen door ("fix"would probably too generous a word for what I did). I spent three hours plying all the tack strips off the edges of the frame, ripping up the old screen, pulling out at least fifty tiny rusty nails, stretching the new screen, and tacking everything back in place, but by 10:30pm our screen door had been promoted from "redneck" to "country-bumpkin," a category with which I am much more comfortable. And it felt good. It felt good to be outside, to be productive, and to use my mind and my hands for more than the daily grind of keeping everyone alive.


Today I feel bright and ambitious again. I made a huge pot of baked beans, put a roast and potatoes in the crock-pot, cleaned the kitchen, and kept Elijah off the kitchen table for an entire morning (with the last of those being by far the most challenging). I have big plans to cut the boys' hair, mow the lawn, finish switching out the fall to spring wardrobes and maybe even paint that country-bumpkin back door.

I have plans for this summer now too. I felt more excitement than dread when I went this week to sign the girls up for swimming lessons. I picked up a brochure at the Park and Rec office about local nature trails and took the kids for three long nature walks. We studied the signs of spring that we saw and wrote a poem about them, and I can't wait to go back again--after hair-cuts and lawn-mowing and painting, of course.

It feels wonderful to feel much more like myself again. I can't say for sure how much of my recovery is due to gallbladder surgery and how much is due to the generosity of people around me who have helped to shoulder the burden for awhile and allow me to rest and re-prioritize. Whatever the case, I have a really long list of things I look forward to getting done today, and I can't wait to get out from behind this computer and get going. If you've prayed for me, thought of me, or helped me out this past month, thank you! Maybe I'll eventually have the energy to return the favor.

When Mama Goes Down

As tiring as it was having a newborn (and four other little ones) on my hands last spring, a different sort of tired began to settle over me last summer. And a little nausea. And a little bloating. And some abdominal tenderness. I took a few pregnancy tests (even though I knew it would have to be next door to a miracle for them to be positive) because that's what fatigue and nausea and bloating have always meant for me before, but they were definitively negative. I waited for it to go away, but it stayed and slowly crept up in intensity.

By October my in-laws were mostly convinced I was pregnant again even though I told them I wasn't.  I don't blame them. My middle had swollen, I was tired and cranky, and I would have thought I was pregnant if I'd seen me then too. At the end of October Matt finally told me to go to the doctor. I was reluctant because my symptoms were so vague and unspecific and I'd seen enough doctors in high school for vague and unspecific symptoms to know what an endless and expensive wild goose chase it can become to track down the cause. But I went.

I met a new lady doctor who was much heavier-set than I am, and I felt silly lifting up my shirt and complaining about my four-month-pregnant-looking bump, nausea, fatigue, tenderness, and general icky feeling. She felt my tummy and thought my colon felt funny and wanted to order a CT scan. I recoiled at that since our insurance is only high-end, and that $2500 would come out of pocket. I asked for an ultrasound instead, but she insisted on a CT and some blood work. A few days later the blood work showed I was not anemic, my thyroid was functioning perfectly, and only my bilirubin levels were slightly elevated (a dead-end lead we had followed up way back in high school). CT showed only an enlarged spleen (same dead-end road that has been there since high school) and a few small gallstones.

Sure that those few little stones were an incidental finding, and frustrated with another dead-end, I declined the doctor's offer to follow-up and decided to focus on getting more rest. Then Elijah acquired a two-week case of diarrhea, then Thanksgiving came, then Elijah's birthday, then Christmas, then ten days at my parents' house while we fought a nasty virus. I didn't expect to actually feel any better during any of that. But when February came along and we were all healthy and Elijah was finally sleeping through the night I was daily frustrated with my increasing level of fatigue.

I was met with another challenge in February as well: revamping our diet once again to meet our shrinking grocery budget. This was no small task and certainly added more stress to my daily routine.
It wasn't depression. Despite my many challenges, I still woke each day with ambition and eagerness, but my body just wouldn't rise to meet me. I had a lot I looked forward to doing, even with the stress, but just couldn't get done. I was tired and achy doing laundry, my middle was sore driving in the car, I felt bloated and sluggish after meals. But I kept pushing myself, because, well....what other option was there?

On Monday, March 4th I drug all five kids to an Amish store to load our cart with a 50lb bag of oats, a 50 lb bag of potatoes, a 25 lb bag of dried beans, and various other bulk groceries. I felt shaky hoisting them into the cart. I felt shaky carrying them into our house. I herded the kids inside, whipped up a quick dinner, left the kids with Matt for bedtime, and ran out to three other grocery stores after that to stock-up on a months' supply of all our essentials. I came home at 10:00pm, unloaded bag after bag, put some bread in the bread maker and collapsed in bed.

On Tuesday, March 5th I filled my mug of coffee, packed our lunch, loaded my kids up in the van, and rushed off to art class like any other Tuesday. I tried to ignore being exhausted, but I grew shaky and began to feel weak, lightheaded, and cold. I set out plates and tried to make peanut butter and jelly sandwiches for my kids while the other moms set out their food, but a new question nagged me now: "What if I actually can't do this anymore? What if it's not a matter of pressing on and putting up with any longer? What if my body actually tells me 'No. No more.'? What then?"

At that critical combination of physical exhaustion and emotional weariness, I broke. I tried not to. Toby asked me something and my brain just wouldn't process it. I stared at him, hearing words, but not understanding them. Someone else was talking to me, but all I could think about was, "What am I going to do if I can't keep this up? I have five kids depending on me. I have to make sandwiches now. I have to." The person in the background spoke to me again. I looked my hand, holding a peanut-butter-laiden knife. It was shaking. And for the first time in my long, proud tenure are Super-mom, I had to admit to myself that I was done.

I said something to my friend like, "I'm sorry. I'm not feeling well right now." But in my heart I said, "I'm done. I can't keep going at this rate. Physically, emotionally, I'm depleted. I admit it." Several wonderful women immediately swooped in. They ordered me to lay down. They made lunch for my kids. And I lay on the couch a long time, wiping a few tears, wondering where to go from here, and feeling a little silly over it all. A friend drove me home because I was still feeling a little disconnected and I wasn't sure I was safe to drive. I laid on my couch all afternoon trying to assess my situation.

Was it a physical problem? Was it an emotional problem? Did I have a panic attack? Do I go back to the doctor? Do I just need to rest more? Finally, I called Matt at work, and I called my parents. Wednesday I rested and a friend brought dinner. Thursday Matt was off of work and I went to see my doctor. She drew more blood for labs. Friday my parents arrived to stay with me for a week and I began having chest pain. It was slight, but something I'd never felt before and stayed with me all weekend. On Monday the 11th it was worse and I had a sharp pain between my shoulder blades. I went back to the doctor feeling a little shaky. My blood pressure, which is always quite low (being no higher than 110/70 even at the end of a pregnancy) was up to 128/86. My heart rate, which is normally no higher than 70 was up to 106. So I was sent for a chest CT scan to make sure I didn't have a blood clot in my lungs, but when that and an EKG were all clear, I was sent home to rest.

The doctor scheduled an echocardiogram for the next week, to get a better look at my heart, and I spent the week trying to relax and let my parents help out. I began to have more specific and sharp pains directly under my ribcage on the right side, where my gallbladder is, and decided to look again at the possibilities that I was having gallstone complications. When my parents had to leave they graciously offered to pay someone to come to my house a few hours a week to help out with kids and chores until I got my feet back under me. I didn't know who might be able to do that, but after I mentioned the need at church I got hooked up with a homeschooling family nearby, whose 17 year-old daughter would be perfect for the job. J met our family on Monday the 18th and came for her first afternoon of work with us on Tuesday the 19th. I showed her how to run our washing machine and dishwasher, how to put the laundry away, make a few simple meals, and help the kids with schoolwork; and she rose to the challenge.

On Wednesday afternoon the chest pain began to burn. My whole chest wall burned into my armpits and up my neck. I felt lightheaded again. I called my neighbor over, afraid I was going to pass out. Matt  finally told me to go to the ER, but after five hours there, another EKG, and more blood work, they gave me an IV bag of placebo-fluid and sent me on my way.

This Tuesday I went for an ultrasound of my gallbladder which showed "multiple small stones" and yesterday I met with a surgeon who said there were at least 20 stones and who was confident that these little rocks were the source of all my problems: bloating, aching, chest pains, back pains, and fatigue. He said it was a "no-brainer" to take it out now before I get a stone blocking a duct and end up with emergency surgery. I've spoken with many people now who have had their gallbladders removed and are happy with the result. I've spoken with at least one person who has delayed her surgery and tried homeopathic remedies and who wishes she would have just had the surgery. It is laproscopic, outpatient surgery, and I should be up and running again in a couple of days. So I agreed and surgery is scheduled for Tuesday April 9th.

I think these little gallstones have been, in many ways, the straw that broke the camel's back for me--enough to push me over the edge into asking for help, something I probably should have done awhile ago. In many ways, despite my physical illness, the last few weeks have been my healthiest mental weeks in awhile. So many people have stepped in to watch kids, to bring meals, and to help out. I feel cared for.

Yesterday J came for a full six hours and I left. For the first time in nine years of parenting I really left it all behind. J did the laundry, she washed dishes, she ran the homeschool, she served snacks, and she cooked and served dinner. I picked up a good book, drove to a coffee shop, and read in the quiet, soft lamplight while sipping steamed milk. For over two hours I didn't think about parenting or cooking. I thought about being a woman, and a follower of Christ. I went for a walk on a path by a stream and soaked in the sunshine and warmth of a first spring day. Even better, when I came home I found that nobody had really missed me and that things were well under control, which gives me the freedom of heart and mind to leave again the next time J comes.

The gallstones will soon be gone and hopefully with them, my aches and pains, but I'm thinking I might keep the habit of taking some time each week to take my engine from fifth gear to first, now that I know it's possible.

At Loveway Stables

When she was a toddler
Her therapist showed me
How to hold her on an exercise ball
To improve her balance and strengthen her core
But we both quickly tired of that daily chore

For years her orthopedic doctor
Has stressed to her the importance
Of stretching her achilles tendons
That were shortened from birth
By the clubbed feet life dealt her
But lists of rehabilitative exercises
Have always fallen short
Of motivating her little girl's heart
Well-meaning though it is

Her pediatrician has been worried
By the upward trend in her weight
But running in the backyard
Or playing team soccer
Haven't been as appealing to her
As the endless adventures available
From the comfort of our couch
In her library of books

She's been reading about horses
Fanciful tales and factual lists
She's been drawing horses
Sketching them
Painting them
Sculpting them
Filling her bed and her head
Day after day for over a year
With horses

Her face has never lit so bright
As when I told her she could ride
At Loveway stables

She bit her bottom lip
And wiped her eyes
And bounced up and down a little
Because some kinds of joy
Just can't be still

She was a little shaky
With nervous excitement
When she met a gentle brown horse
At Loveway stables

But the volunteer was so kind
So patient and encouraging
That she brushed Shanna
And helped carry the saddle
And lead her horse to the arena

Then the little girl
Who had only wanted
to bury her nose in book after book
Was riding a horse

She was sitting tall
And balancing to strengthen her core
Because the instructor told her
That was the way proper way to ride

She was stretching her achilles tendons
With her toes in the stirrups
And her heels down
Because it gave her better control

She was exercising
And meeting people
And growing more confident
With each task mastered
And with each word of praise

She was excelling at something
Her sisters couldn't
And she was beaming through it all

No words of admonition
No charts of responsibilities
Could work the magic
Of turning the burdens of her diagnoses
Into challenges she is eager to meet
Like the gentle brown horse
At Loveway stables

She has seen too many doctors
And too many therapists
Had too may procedures
And hospital stays
For an eight year old girl

But one hour a week now
Her work is pure joy
Grooming, riding, focusing, bonding
Because there are donors
And instructors
And volunteers
And a gentle brown horse
At Loveway stables

Naomi's First Riding Lesson

Naomi was dressed in her favorite horse shirt yesterday as we entered the stable. It didn't matter much that it was under a sweatshirt and a winter coat, as long as it was on. Her face was lit with excitement, and a little apprehension, as she followed her teacher, Miss Chris, and the volunteer who was working with her, Mr. Peavy, back to the stalls. Naomi was introduced to Shanna, a gentle, dark brown quarter-horse, who stood quietly as Naomi learned to brush and tack her.



Mr. Peavy's grandson, who has cerebral palsy, had ridden Shanna for many years. Mr. Peavy patiently allowed Naomi to carry the blanket and the saddle. He showed her how to put them on and talked to her about horse safety. Naomi quietly took it all in and did her best to do as Mr. Peavy asked.

When Shanna was saddled, Naomi helped to lead her into the arena and line her up. Her class is supposed to have four students, but the two other girls didn't show up. The other boy in her class was older and quite good already with his horse so the teacher spent most of her time catching Naomi up with what the others had learned in the first four classes that Naomi had missed.

Mr. Peavy held onto a lead rope and walked beside Naomi and Shanna the entire lesson. Miss Chris started with walking on the other side of Naomi, but soon felt comfortable leaving her side. It was a lot for an eight-year-old to take in in one night: mounting, balancing, starting, stopping, turning, weaving, reversing, and dismounting; but Naomi focused the entire 40 minutes she was on horseback and worked hard to control Shanna.

Both Miss Chris and Mr. Peavy were impressed with how well Naomi did. Mr. Peavy told me that he'd never totally held back and let a rider control the horse herself on their first ride. "It was all her!" he assured me, "I just walked beside her." It may not be too many lessons before they can take the lead rope off and allow Naomi to work with Shanna herself.

Naomi was quietly pleased on the way home--I think it was so much to take in. She showed more excitement when her sisters asked her about the lesson before bed. And this morning she is all beaming and chattery, talking about how much fun it was and how she can't wait for next Thursday to come. "Now it will be even harder to wait for next Thursday," she giggled, "because I know how much I like it."