Walking Pneumonia

Another first today: Micah's first day at school since he's started the meds. I'm happy to report he took everything on schedule; what a relief. Maybe we can make this work after all.

When I picked him up this afternoon, I could tell he didn't feel well. His little face was flushed and feverish, and his breathing was labored. Steve took him to Urgent Care and, one hour and one chest x-ray later, he was diagnosed with walking pneumonia and given a prescription for Zithromax. We gave him a dose before bed, so hopefully his lungs, at least, are on the mend. What is happening? He had been home all week, thanks to the winter weather, and he seemed FINE. How am I missing all of these problems? Has my mother's intuition gone completely dormant? I feel like I'm failing him when I don't pick up on the cues his body is trying to send.

A month ago, I made a reservation for tomorrow night at our favorite bed & breakfast, to celebrate the 16th anniversary of the day Steve and I met. A friend from church agreed to watch the kids overnight and, considering the stress of the past week, the timing seemed perfect. Now I'm not so sure. The doctor said Micah will be "minimally contagious" for the next 24 hours. The B&B is only 15 minutes from our house so I think, if our friend is willing to risk catching pneumonia, we'll keep our plans. It's all for the cause: sanity.

Emerging From the Fog

Micah threw an all-out fit today about taking his meds. He took them without complaining before breakfast; after lunch, however, was a different story. When I told him it was time to take them again, he glared at me and said, "NO!". "You need to. It will only take a couple of minutes," I tried to reassure him. But he still refused, clamping his mouth shut tight and pursing his little lips. I had to threaten him with the ultimate punishment, a nap, before he finally agreed to cooperate.

I'm wondering if my passivity the past few days is bringing out the worst in him. He needs to know someone is in charge, and I haven't exactly given him that impression. I wish he was old enough to understand that the benefits of taking the meds will outweigh the yucky taste and time out of his routine. Maybe it's time for a reward chart...

I slowly emerged from the fog today, starting with cleaning the house. The girls helped me vacuum, dust and clean the bathrooms. Everything smelled so clean when we finished, and I felt a sense of accomplishment. Maybe I really felt a sense of control, no matter how short lived, over these circumstances. I might not have control, but I do have clean toilets and, at this point, I'll take whatever I can get.

The Many Faces of Grief

Today I forced myself to think about the seemingly arbitrary ways sorrow shows itself. I have worn these clothes for three days in a row. I haven't regularly taken my meds, eaten healthy or exercised for nearly a week. Steve, on the other hand, is active and involved in work, errands and house projects, distracted in a strangely productive way. Mackenzie, naturally reserved and introspective, spends a lot of time in her room reading and listening to music. She treats her brother sweetly and helps willingly with household chores, but she chokes up occasionally and sleeps fitfully. Maddie has apparently chosen to cope by clashing with Micah at every opportunity. Usually laughing and lively, she has become bossy and sullen. I can tell she doesn't know how to process her hurt or how to help her baby brother.

Micah has opted for defiance. He tortures Maddie endlessly and resists every instruction we give him with a fixed gaze and a firm, "NO!". Sigh. We're trying to give him, and our daughters, leeway to adjust and grieve in their own ways without having to call in Super Nanny. As much as we want our home to be a peaceful place of refuge, that can't happen if our standards slip away. I'm no psychologist but I think maintaining our boundaries is imperative, for the kids' sakes and ours. We can't let our compassion for Micah outweigh our desire for him to treat others, including his parents, with respect. I pray we will find the balance in time.

Micah bundled up and bounded outside to play in the snow this afternoon. He chased the dog (He claimed she was playing with him.), made snow angels face first and fashioned a snow fort with Maddie. I watched from the window, smiling at his innocence, subtly severed just six days ago.

I only gave him his meds twice today. Guilt City.

My Spinning Head

Since Old Man Winter unleashed his fury last night, the kids are out of school today and probably tomorrow. Good thing since we started Micah's new regimen this morning. So far, so good. He took all his meds three times on an empty stomach (no small feat with this boy!), just like the doctor ordered.

The pediatric gastroenterologist can see us on March 2; one more step down this road. We're apprehensive about seeing him because he will probably recommend the same "treatment" I took: a combination of steroids and an immunosuppressant drug. We're not interested in that approach since we believe, confirmed by my experience, that it doesn't treat anything; it just weakens the immune system, in effect making him more vulnerable to bizarre infections that people with a working immune system don't even get. We're also concerned that this doctor might recommend a liver biopsy to determine the extent of the damage. While not particularly involved, the procedure is risky and painful. We are praying that God will give us wisdom and guide our decision-making process as we evaluate all of our options in the coming weeks.

We're also tossing around the idea of home schooling Micah, at least for the rest of first grade, so I can more closely monitor his diet and medications. Taking all the meds three times a day is going to be a daunting challenge when he's in school seven hours a day. Also, since fatigue is common with liver problems, I want him to be able to rest whenever necessary. But he loves school and will miss his teacher and classmates if we make a change. We oscillate between wanting to do everything possible to help him heal and keeping his lifestyle and schedule as much the same as possible. My head is spinning; there's so much to consider.

Again tonight, God spoke to me through indeed, my devotional magazine. "The most frustrating feeling we can have when our circumstances are overwhelming is our sense of powerlessness." Bingo! I'm SO there. "We can't pull enough strings to..heal an illness.. or to ensure our own security in times of trouble. But often we try.. We are weak. But we are strong.. We have no power in ourselves, but we are not in ourselves, we are in Christ.. We have great strength, but not ours.. Our weakness is God's opportunity to be strong." Thank you, Lord, for this timely reminder. I think I might be able to sleep tonight.

Micah's First Appointment

Micah's first doctor appointment was exhausting for both of us. Since Dr. R's testing is extensive, Micah got frustrated and a little defiant, constantly asking for snacks and saying, "Can we go now?" As my own frustration with the fact that he's sick in the first place grew, my patience thinned. But we made it through and four hours later, Dr. R was able to give Steve and me some useful information. He confirmed what we already knew, namely that Micah's liver is compromised and his immune system is confused. The doctor also pinpointed the cause of his abdominal discomfort, a parasite called giardia. He pointed out that if it hadn't been for the giardiasis, we might not have found out about the liver problem until much later, maybe too late. Catching this problem early is one of the blessings I can already see in this situation and another example of God's involvement in Micah's little life. The doctor gave us several homeopathic remedies to start Micah on, three times a day on an empty stomach, which feels overwhelming and empowering at the same time. We made another appointment for March 21.

Drained and depleted, I collapsed onto the couch after picking up the girls from school. Thankfully, some friends from church braved the snow and ice to bring our family a comfort food dinner: hot baked ziti smothered in cream sauce and loaded with cheese, veggies and crusty bread. They also brought a breakfast casserole, bagels and cream cheese, orange juice, lunch meat, cheese slices and two loaves of sandwich bread. Hallelujah! We are set not only for at least two dinners, but also breakfast and lunch for a few days. Thanks to them, our burdens feel a little lighter tonight. In my book, a casserole is worth a thousand bouquets and faithful friends are worth their weight in gold.

Micah is not excited about taking his medicines, but we've explained that sometimes we need to do things that we don't really want to do. Maybe tomorrow is soon enough to start fighting that battle.

A Few Hours of Joy

I feel blessed, today especially, to be surrounded by faithful friends who are praying for Micah, and all of us. As we entered the church this morning, we were greeted by hugs and encouraging words. But, after recounting the events of the past week at least 20 times, coupled with our inability to sleep well, Steve and I were exhausted. Micah, though, continues to do well. He has rarely complained of stomach pain the last few days and eats up every minute of life (and every snack in the house!) just like he always has.

A friend invited me to her house this afternoon, and I'm so glad I stepped out of the fog and accepted her invitation. We took a cold, brisk walk around her neighborhood, followed by wheat toast with homemade raspberry jam and hot cocoa, complete with mini marshmallows. We talked about life and grief and God's ever-present help through it all, while soothing music played in the background. When I left I felt a little stronger, a little clearer, a little more convinced of God's presence in our suffering. Through my friend's kindness, God also reminded me that He, the ultimate Comforter and Healer, often works through compassionate people who are simply willing to offer their hearts, homes and hot chocolate to the needy.

Meanwhile Steve, in a gallant attempt to catapult us out of despair and back into normalcy, prepared a first-class meal in the spirit of a Japanese steak house. He stir fried rice, noodles, chicken, steak and veggies while juggling the spatula (not the knives, thank goodness) and interacting with his "customers" in the worst Japanese accent I've ever heard. We all clapped, laughed and enjoyed each other and our meal. But most importantly, for a few hours, we made the conscious choice to look at the good in our lives instead of the bad. Hopefully, we'll make that choice more often in the coming days.

Special Time with Micah

Our daughters are away tonight, busy with their friends and lives, a welcome distraction for them from the grief and struggle of this week. Steve and I have stumbled around, dazed, in a haze since we got "the news", so we were anxious to spend some precious time alone with our son. He and Daddy wrestled, then we all snuggled on the couch and watched a movie.

Micah's favorite outing is hanging out at the Bass Pro Shop, a cross between a monstrous retail store and a wildlife museum, so when we asked him what he wanted to do tonight, we figured it was a no-brainer. But, he surprised us and asked if we would take him to eat Chinese food at one of our favorite haunts. We looked at his sweet, round face and nodded our heads. He jumped up and down, wrapped his arms around Daddy's neck and said, "Let's go, guys!" We started with cashew chicken and vegetable fried rice at Canton Inn, a quaint, cozy family-owned restaurant. Then we headed to Bass Pro, where we gawked at the snakes, turtles, ducks and fish; "toured" pontoon boats on the showroom floor and relaxed in rocking chairs in front of the massive stone fireplace before leaving for home. Micah seemed so content and complete that I almost forgot his little body is broken.

Each day seems a little better, but the nights are difficult, filled with bizarre dreams and broken sleep. My optimism seems to set with the sun each night, and I know Steve struggles too. He holds me while I cry and reminds me of how far we've come. But the weight of illness, especially my child's illness, feels like more than I can bear. Too exhausted to read but desperately wanting guidance, I flipped open my Bible, which fell to Psalm 34, and the word I so desperately needed to hear. "The LORD is close to the brokenhearted and saves those who are crushed in spirit." (v. 18). Thank you, Lord, for pointing out that promise to my tired eyes and heavy heart.

The Day After

In the spirit of full disclosure, I am out of my mind today. I'm not sure I slept at all last night; nausea and Kleenex are my constant companions. I can't seem to get my mind around this unwelcome news and what it might mean for him. He's so little, and my heart breaks at the mere thought of him suffering. I'm grieving without even knowing what to grieve.

I called my doctor this afternoon to tell him he'll be seeing Micah, instead of me, at my appointment on Monday. I've gone to him for three and a half years, and he has helped me immensely, so taking Micah to him seems like a logical first step. The GI doctor I went to after my diagnosis gave me no hope, and the pharmaceutical drug "treatment" wasn't successful. That's when I found Dr. R. He is an M.D., but he practices a unique blend of complementary medicine, including homeopathy. He's particularly skilled at treating complex health issues, including autoimmune disorders like mine, and now Micah's. I bawled my way through the conversation. But in his gentle wisdom, he reminded me of how well I'm doing and that he's confident he can help Micah too. It all just feels so unfair today. Where is my faith and trust in God? I feel like a stranded sailor, floating on a midnight ocean toward nothingness.

Many people have asked what they can do for us. Maybe if I can ever 1) stop crying and 2) clear my head, I'll be able to think of something. I'd take heavy sedation for a decade or so, if anyone can make that happen.

The smell-or even the thought-of food turns my stomach, and the only thing that sounds good tonight is ice cream. All of us--except Micah, ironically--are down in the dumps, so the whole family readily concurred with my craving. We ditched dinner and went out for ice cream. Actually it was frozen custard: sinfully delicious, terribly fattening, and ridiculously expensive. But we did it anyway. There's probably no doctor or counselor anywhere who would admit that chocolate custard blended with raspberries and topped with hot fudge facilitates emotional healing. But you'll never convince me.

Our Worst Fear

I had lunch with a friend today. We had been trying to get together for a while, but our schedules usually clash. So when she had an open lunch date, I jumped at the chance. And thank God I did.

About halfway through lunch, Dr. B called my cell phone to give me the news: It appears, based on the blood work, that Micah has the same liver disease that I was diagnosed with when he was a baby. I caught that he wants to refer Micah to a pediatric gastroenterologist from Children's Mercy Hospital in Kansas City. He holds a clinic in our city once a month. Everything else is a blur.

As I hung up, I dissolved into tears, numb with disbelief and paralyzed by fear - of the unknown and the known. I stared at my friend through tear-filled eyes, her own grief-stricken look mirroring mine. But, even in the midst of that gut-wrenching revelation, God had already provided a measure of comfort, before I even knew I would need it.

My friend is a wise and steadfast Christian and just happens to be a psychologist. She listened as I lamented, reassured me of God's love and providence and prayed for me and my family in the parking lot as we left. What an unexpected blessing.

I called Steve on my way to pick up the kids from school. He sounded shocked and scared, and we hung up as my oldest daughter climbed into the van. My puffy, red eyes and tear-stained cheeks clued her in to the reality we are all now faced with, and she sat in sad silence all the way home. She walked to the elementary school to pick up Maddie and Micah since I was in no shape to talk to anyone. Micah bounded through the door, as usual, dropped his backpack on the kitchen floor. It was an unusually warm afternoon, so he headed outside to play basketball with the neighbor boys, snack in hand.

While he shot hoops and rode his bike, I sent an email update to everyone I knew was praying and called my mom, my sister and a close friend. Their shock and sadness echoed in my ears; that's when I knew this isn't a dream.

Steve came home early from work, concern etched into his face. He hugged me tightly, then made several calls to break the news to his family. Micah came inside at dinnertime, tired but happy, and Steve and I took him aside. We somehow managed to hold it together long enough to tell him that Dr. B had called today to let us know there was "something not quite right" with his liver, and that he would be going to see a "special doctor" in a few weeks. He got a concerned look on his face and said, "Do I have liver disease like you?" "We hope not," we both answered, trying to assuage any fears he might have. That seemed to satisfy him, so we let it go.

About 6:00, a friend who had gotten the email brought over a prayer shawl that some ladies in her church had made. I hadn't heard of that, but apparently the women say a prayer with each loop, then pass it on to people who need prayer. As I tucked him into bed, I wrapped him in the bright blue shawl and laid down beside him. "How are you feeling about everything?" I asked. "Scared," he said. "Why are you scared?" I asked, trying to choke back the tears. "Because I don't know if something bad is going to happen to me. I'm hoping for good, but it might be bad." He paused. "Mom," he continued, "everybody wants to see Jesus, but nobody wants to die." I kissed his forehead and promised him I would pray with him every single time he gets scared. He snuggled into the shawl and closed his eyes.

No Word Yet

I'm still waiting for the doctor to call. Waiting is hard, but I'm trying to be patient. I can tell people are praying because I'm not a total basket case like I would be on my own. Maybe I've finally learned that everything happens in God's perfect timing. Or maybe I'm just numb.

A Lazy Sunday

I spent a lot of time reading the Psalms last night, probably the reason I slept a little better. I was up early and off to church. I'm thankful for my job coordinating the children's Sunday school classes, especially today, since it gives me something positive to focus on. The kids' smiles brightened my morning, and I'm always inspired by the creativity and energy of the faithful teachers. Besides, busy is good on a day like today.

I've missed my family this weekend, but I've also enjoyed the solitude. All this unstructured time has allowed me to pray and read more, relax in the tub and take a long Sunday afternoon nap. God feels close today, but what I struggle with is the reality that He is always close, regardless of how I feel.

Steve and the kids arrived home, safe and sound but tired, about 8:00. Micah begged Daddy to set up the Wii, which he did while I unpacked their bags. They bowled and boxed to their hearts' content, then headed for their beds. I took special pleasure in tucking each of them in tonight, maybe because they've been gone, or maybe because of my heightened awareness of how they bless my life. Either way, as I crawled into my own bed tonight, everything seemed (almost) right with the world.

Fear

After tossing and turning all night long, I woke up this morning with that "hit by a truck" feeling. Out of habit more than will, I rolled over and picked up my devotional magazine and Bible off the nightstand. Immediately my eyes fell on this scripture, "Don't be afraid; just believe." (Mark 5:36).

My devotional passage expanded on that admonishment, as follows: "No one ever gets mountain-moving faith by obsessing about the mountains. They get it by focusing on God... We think about the threats to our well-being, never realizing that the threats are lies and our God is true. Will we suffer harm? Perhaps--but not ultimately, not out of His time, and not without a greater purpose. Faith knows that, and it isn't afraid." Tears rolled out of my swollen eyes as I silently thanked God for guiding me in such a personal way and giving me the strength to get out of bed and face this day.

I didn't feel like eating, so I skipped breakfast and checked my email instead. There were 18 messages from well wishers assuring us of their prayers and support, more clear evidence of God's presence. My heart swelled with gratitude for God's care and our loved ones' prayers.

I called Steve twice to see how Micah is doing. He has only complained of pain, and slight nausea, a few times. But he and his sisters are enjoying their big brother, aunts, uncles, grandparents and cousins. I think the doctor was right: going to see the family is proving to be beneficial for him and Steve and the girls. The mother in me wanted to keep Micah close and never let him go. But I know that is neither possible nor healthy, for either of us.

Micah called me about 9:00 tonight, screaming excitedly such that I couldn't even understand him. I finally gathered that Grandpa and Grandma bought them a Wii for Christmas, and he and his sisters were overjoyed. Micah played our friends' Wii a few weeks ago and discovered a new talent: boxing. At least now he can beat up cartoon characters instead of his sisters. :)

The Doctor's Call

The phone rang at 8:00 this morning. I had a bad feeling when Steve told me it was the doctor, not the nurse, calling. They weren't even supposed to have the results until noon, which scared me even more. Dr. B said everything was normal except for his liver enzymes, which were elevated to about twice the normal level. My heart sank and my eyes filled with tears as he talked since six years ago, when Micah was newborn, I was diagnosed with autoimmune hepatitis, a rare and often deadly liver disease. He said he was going to send out for more tests specifically for the liver, and that it could be the end of next week before we hear anything else. He doesn't think the liver is causing the pain, so the tentative plan, if these results come back normal, is to have an abdominal ultrasound done.

I thanked him and hung up the phone. Steve had gathered enough from my end of the conversation to know there was a potential problem with Micah's liver. We hugged, cried and prayed, hoping for the best and fearing the worst.

Steve had planned to take the kids to Kansas today, since they're out of school, to visit his family, since we didn't see any of them over the holidays. Our beloved neighbor is gravely ill, plus I need to work, so I am staying here. The doctor said it would be fine, probably even beneficial, for Micah to travel. "He needs to be a regular boy," he said. (Those words echo like a strange foreshadowing of what might come.) I kissed them all goodbye and waved as they drove away. Fifteen minutes later, our neighbor's grandson called to say she had passed away. What a sad day...

I don't know how I feel, but I know we need prayer, so I shot an email to our friends and family asking them to pray for normal test results next week, Micah's healing, and peace for our family. I am so thankful for a circle of loved ones who will lift up our needs to the all-knowing God, the Healer and Comforter.

I walked around in a daze most of the day, trudging through the house sweeping floors and folding laundry, blinded by tears. In between household chores, I emailed and prayed. I know it's too soon to grieve, and God tells us repeatedly not to fear. But how, I wonder? I'm trying not to over-react or borrow trouble; it just feels like an all-too-familiar nightmare. Plus, I'm the world's worst at waiting, but, once again, that's all I can do: wait and pray.

Micah's Appt

We went to see the doctor at noon today. He's a kind man with a gentle smile and dry sense of humor. Micah thinks he's the "nicest doctor in the whole world." Steve met us there, and we gave the doctor a run-down of Micah's symptoms, or lack thereof. Next he did an abdominal exam, during which he discovered a small hernia. (He let me feel it too.) Because the hernia was smaller than his finger, he doesn't think that's what is causing his pain, so he decided to run some more tests.

The urine lab results came back normal, but we won't have the blood test results until tomorrow. If everything comes back normal, the plan is to see a pediatric surgeon to see if he thinks the hernia might be causing the pain. Dr. B doesn't have any specific recommendations for managing the pain or dietary changes. The nurse is supposed to call tomorrow about noon with the blood test results. So, for now, we wait.

Strange Symptoms

Micah's been complaining of a "tummy ache" for a couple of weeks now. At first we thought it was probably a virus, but he hasn't developed any other symptoms. He's come home from school a few times because of the pain, right around his belly button, which seems to come and go very quickly. His teacher has also been taking notes to see if we can establish some sort of pattern. Right before he complains of the pain, he gets very pale and "droopy". He loses interest in whatever he's doing and refuses to eat or drink, something he never does.

I was at school for a meeting last week, and the nurse found me and said Micah had been in her office again. Since he didn't have a fever-or any other symptoms for that matter-she sent him back to class. I went to his classroom about 11:00 and could tell he didn't feel well. One of my daughters has blood sugar issues, so my first thought was that he had gone too long without eating. (At home, he eats constantly!). The teacher had offered him a snack, but he refused. I checked him out of school, fully intending to take him home for a nap and some mommy TLC. But when we got here, he wanted to eat an apple with peanut butter. Then he ate half the soft taco I made for myself. Immediately he perked up and wanted to go back to school. I took him back, and he had no more "tummy trouble" the rest of the day. The teacher and I thought we had pinpointed the problem; alas, we were wrong.

He started complaining again yesterday, and last night the pain brought him to tears. I'm baffled since I usually have an idea of what's wrong with my kids, but it seems my mother's intuition has failed this time. One thing I know for sure: something is wrong, and I'm making an appointment with the doctor right away.