Thursday, May 29, 2014

Mayo Clinic Trip: Diagnosis Edition

I went out on a limb. I prayed for answers. And God delivered.

After years of bewildering symptoms, I was given a name.

A name is such a gift. Your insides never feel quite settled when you don't know how to identify a thing. A name says, "You're not crazy. You are not alone." These are comforting truths when the disease is isolating and causes you to question your own sanity.

I once had an allergist who was as perplexed by my symptoms as I was. Though I began to react to the allergy shots with increasing violence, he continued administering them along with steroids and epinephrine because he didn't know what else to do. After becoming tired of weekly anaphylaxsis, I ended the treatment. Recently, I encountered another allergist who refused to believe me, concluding I must be crazy because my symptoms did not fit with what he knew. Never have I had a doctor who both believed me and knew what was happening to me until Dr. Park of Mayo Clinic.

God bless this man.

After almost ten years of suffering and an earnest, two-year-long quest for diagnosis, Dr. Park told me on May 27, 2014, I have Mast Cell Activation Disease (MCAD).

Within a few minutes of my initial consultation, he suspected a disease involving the mast cells as opposed to a true allergic disease. Mast cells are found in the body's tissues, and promote immunity in a healthy person's immune system. Modern medicine tells us mast cells are disrupted by IgE antibodies. These antibodies are what allergists are looking for when they perform routine skin and blood tests. When the antibodies attach to a specific antigen such as ragweed pollen, they sensitize the mast cells and crosslink. The mast cells then break apart and dump certain chemicals like histamine, leukotrienes, and other nasties. The difference between true allergies and mast cell disease is the catalyst which angers the cells. With IgE allergies, the trigger is specific. With mast cell disease, the triggers are diverse and numerous.

In my experience, triggers are either debilitating or dangerous. Though the differentiation between debilitating and dangerous triggers varies from patient to patient, there are some commonalities. Common life-threatening triggers are fire ant, wasp, and bee stings. Typical debilitating triggers include high histamine or histamine releasing foods (fermented foods, alcohol, cheese, processed or left-over meats, yeast, many fruits, coffee, chocolate, tomatoes, fish, shellfish, wheat, nuts, soy, dairy, etc.), latex, chemicals, pesticides, fragrances, heat, cold, friction, injury, NSAIDS (Advil, naproxen), pollen, acute illness, and emotional stress. (Insect stings, peanuts/tree nuts, and latex are my most dangerous triggers.)

As you can probably guess, a person has difficulty avoiding this many triggers over the course of even one day, so the mast cells are continually releasing their contents, causing inflammation in all systems of the body. The chronic, widespread inflammation leads to quite a range of seemingly unrelated symptoms. The most common symptoms are flushing, itching, hives, chronic constipation and/or diarrhea, nausea, intestinal cramping, chronic fatigue, headache, wheezing, cough, dizziness, low blood pressure, fainting, fibromyalgia, arthritis, neuropathy, and shock. I have experienced all of these, most on a daily basis.

Because Dr. Park is knowledgeable and well-read, he immediately thought of mast cell disease of which there are several subtypes. Some types are worse than others. There are also a couple of altogether different diseases with similar symptoms. Dr. Park ordered specific blood and urine tests to exclude the possibility of systemic mastocytosis, mast cell leukemia, pheochromocytoma, and carcinoid syndrome. All labs came back normal which indicate MCAD.

According to The Journal of Allergy and Clinical Immunology, the criteria for a diagnosis of MCAD are:

1) Symptoms consistent with mast cell mediator release affecting two or more organ systems.


2) Other diseases with crossover symptoms ruled out.


3) A positive response to antihistamines and mast cell stabilizers.

Expected. Dr. Park is confident my symptoms will improve with the help of these drugs.

Basically, MCAD is diagnosed based upon clinical evidence and the exclusion of all other explanations. There is no cure for mast cell disease at this time. Not much is known about the disease other than it is real and it can be managed with a strict diet, lifestyle modifications, and relatively tame medications.

My life is unlikely to ever be "normal," but I'm okay with that. I'm not normal, so why should my life be? I have high hopes that the medications along with the continuation of nutritional therapy with Jennifer, regular treatments with Dr. Yakaboski, and regular chiropractic work with Dr. Frieden will eventually lead to a better quality of life. Insect stings will always be dangerous, I will likely continue to make my own deodorant and toothpaste, and I will usually use essential oils before medication. I have no reason to return to the Standard American Diet (SAD). But maybe I will be able to attend church again. Maybe I will be able to go to a movie with my husband. Maybe I can leave my home without a mask. Maybe I won't feel miserable every time I eat or end up in bed flat on my back with every virus which crosses the threshold.

I have no reason not to hope. God's love has made me bold. My recent encounter with His faithfulness has freed me from fear. I am resting in His Word--

"And whatever you ask in My name, that I will do,
 that the Father may be glorified in the Son.
 If you ask anything in My name, I will do it."
--Jesus, John 14:13-14

Obviously, this verse isn't a blanket promise. God doesn't always do what we ask. But when we abide in Christ, we know better what to ask for. And if we knew everything He knows, we would do things in the exact manner He does things.

I never asked Him for a diagnosis before last Sunday because I never felt compelled by the Spirit until then. I asked with a kind of desperation I had not previously experienced. It was a "do or die" kind of prayer. On Tuesday, God answered my request. While studying Jeremiah 17, I came across this verse:

"Heal me, O Lord, and I shall be healed;
Save me, and I shall be saved,
for You are my praise."
--Jeremiah 17:14

It has become my new prayer. I don't know when God will heal me, but I believe healing is coming. I don't know to what extent I will be healed, but I am comfortable leaving that decision in the ever capable hands of my wise and loving Father. For now, I will enjoy His goodness I have experienced here in Minnesota, and focus on getting back home to my Superman and red-headed loves. 

May God bless you all for praying me through this experience. I am so humbled and thankful to be a vessel of God's love and power. I am glad you were able to witness it! If you don't know Him, oh how I wish you would! There is no one more worth knowing! If you want to talk, I always have time and energy for conversations about the Savior.

Grace and peace. 

Wednesday, May 28, 2014

Thoughts Under A Minnesota Sky

Note: This is a stream of consciousness post--a kind of self-sermon. It was my intention to write about my diagnosis. This is what happened instead.

God's faithfulness is best measured by time.

I have been saying it and believing it for almost two years now. We like to think God works instantly like wifi and 4G. We want to believe we can short order our desires and have them placed before us steaming hot and just how we like them in ten minutes' time.

But look at Abraham.
Look at Joseph.
Look at Moses.
Look at Job.
Look at David.
Look at Paul.
Look at Jesus Himself.

God is no short order cook. He's an artist. And He works best over time. Lots and lots of time.

Under an endless, bright blue sky all things infinite come to mind--God, His love, His wisdom, His goodness, His faithfulness, His grace, His mercy, His power. Time. Me--though I am as finite as I am infinite and as lowly as I am glorious.

A marvel--"I am poor and needy; yet the Lord thinks upon me" (Psalm 40:17).
His thoughts cannot be numbered. Infinite thoughts.
He feeds me and rests me and works me over. And over and over and over.
And even when I don't feel Him, hear Him, or see Him, He hasn't forgotten me because even if He could, there I am--my name, my essence inscribed on the palms of His hands (Isaiah 49:16).

Oh, infinite love!

I am canvas. He is Artist. And all we have is time. Lots and lots of time.

Waiting isn't the wonder. The wonder is that He is able to paint something so complete and beautiful, something resembling His Son, upon a damaged canvas with limited hues over a single lifetime. Or less.

Here under infinite sky shouting out to me the glory of God, I step back and admire His handiwork. I see order. I see beauty. I see design and attention to detail. I see faithfulness.

The Artist comes to work every day.

I don't know where the work is going, but after years I can look back and see the progress. I catch a glimpse of the destination even if I remain uncertain of the plan. The strokes could transform the portrait any number of ways, but in them I see foreshadows of glory. Healing. Wholeness. Christ-likeness. Christ-withness.

The time has passed slowly for me. But two years, ten years, a lifetime--these are just drops in an infinite bucket.

Things may go faster without anxious twitching, but that isn't a promise.

And don't be satisfied with thumb twiddling in the meanwhile because proper waiting shouldn't be idle. Watch. Expect. Cooperate!

Cooperation in forms of gratitude, joy, and loving service yield the best work, but The Artist has a way of redeeming strokes we throw askew. I should know.

Cooperation is learned by fully facing The Artist. Observe Him. Learn Him. Admire Him. Experience His wildness and find it beautiful. Allow Him to see all the damage, all the flaws, all the shortcomings, and present them to Him. To know Him and be known by Him are the keys to deep-soul smiles, ceaseless thank yous, calloused hands, and a tender heart.

The waiting isn't over, and won't be until the Artist is done. Until the naked canvas is fully clothed. Until I am moved to The Gallery where all His perfect and finished work resides.

Basking in the glow of divine faithfulness and childlike obedience under a Minnesota sky with an Infinite Companion is the sweetest euphoria. Even if the waiting isn't over.

 Because the truth has been lived--the Prize can be had in the waiting.

 And His faithfulness is best measured by time.

Monday, May 26, 2014

Mayo Clinic Trip: Naked Edition

"Blessed is the man who trusts in the Lord,
and whose hope is the Lord.
For he shall be like a tree planted by the waters, 
which spreads out its roots by the river,
and will not fear when heat comes;
but its leaf will be green,
and will not be anxious in the year of drought,
nor will cease from yielding fruit.
The heart is deceitful above all things,
and desperately wicked;
who can know it?
I, the Lord, search the heart,
I test the mind,
even to give every man according to his ways,
according to the fruit of His doings."
-Jeremiah 17:7-10

"If I was a tree," I told Mom as I looked up at its crown, "I would want to be this one."

Our bench sat in its shade. The roots sank thick and sturdy into soft, lakeside soil. Its trunk stood fat and strong at the bottom, and reaching skyward, one became two, became three, became four. Supple boughs hung from brave limbs growing away from Mother, and came to life as the wind rushing off the water proposed a dance. We were mesmerized by the waltz. Sway, two, three. Sway, two, three. How many long seasons of nakedness, of bone-crushing winters she must have endured by the water waiting, waiting to achieve such poise and grace. 

Why must she be naked in winter? I want to know for it seems the Lord requires the same vulnerability from me, and the winter has been long. Ten years I have been sick, frightfully so for two. We began planning this trip six months ago, and here we are waiting, waiting over a long, holiday weekend for test results, for the next step. 

But I am like a tree in Louisiana, shedding its clothes in stages, hanging onto my last layers well into winter. I've been fearful to expose too much, afraid of being hurt. I did not know this about myself until last night when God showed me in the quiet and vulnerability of a bath. It has taken all this waiting to really see myself.

When friends asked why I was going to Minnesota, I would say, "Out of obedience to God," which was true. God made it plain I was to take this trip though I could not see the benefit. In my mind, diagnosis was unlikely and the odds of tolerable treatment options were dismal. I planned and prepared out of duty and love for God, but I dared not hope. Hope leads to disappointment, and disappointment after disappointment wears on a soul.

After the encounter with Arthur on Wednesday, I felt hopeful for the first time. The first time. I met with Dr. Park the next day, and left him feeling that maybe my new found hope was justified. He would check for systemic mastocytosis while doing some gentle "fishing."

And then Friday came along, and pressed the hope right out of me. 

The day was long. I woke before 5 with a twinge in my stomach telling me the day ahead would not be like the day before. I prayed, tried to push it aside, and left the hotel at 6 am. Six in the morning, y'all. The day began with blood work, a necessary photo, and "checking" in the dermatology department. An appointment could not be scheduled until June 23, so I was encouraged to wait to be fit in. I was seen quickly--probably because it was Friday.

Though the doctor was very kind and professional, the appointment was kind of degrading. The hospital gown--if one could call it that--was a joke. I was entirely unclothed and entirely unprepared for such a thorough exam which concluded with no clinical findings of cutaneous mastocytosis, a skin biopsy nonetheless, and a psych referral for anxiety. Apparently, my mask had raised a red flag.

After dropping off my 24 hour urine sample, Mom and I made our way to the psychology department. I had been warned by a friend ahead of time to not resist this appointment. It wasn't too bad. A nice lady asked me many, many questions, which led to the sharing of my story for the next hour. 
The "container of shame"

She peered at me keenly from behind her glasses. "This illness has left you disabled, hasn't it?"

I hadn't thought about it that way. "I suppose it has."

"Do you feel sad, depressed, or hopeless?"

I thought how to answer, and smiled when the words came. "You know, I used to, and I probably still would if it weren't for Jesus. But because of Him, I take joy in my life, and even though my life is small, I feel like it's valuable."

At the end of the appointment, the psychologist and a psychiatrist sat down with me. Were they concerned about anxiety? No. Depression? Nope. They wanted me to see a specialist of behavior modification for my migraines. Migraines. I was baffled. Yes, I have migraines. Yes, they persist, but they don't make the top 10 list of my most pressing complaints. Weird appointment. But they recommended Silver Lake Park to us, so it wasn't a completely wasted visit. 

Afterward, I was starving and on the brink of collapse. We ate lunch in "our" little courtyard, and made our way to The Quiet Room. The Quiet Room is this magical, sound-proofed space filled with hospital grade recliners and darkness. Mom and I both took an overdue nap. A half hour later, I woke with a start feeling strongly my next appointment would be the most discouraging of the day. I prayed and braced myself.

"Our" courtyard. So peaceful and empty. Mask not required.

We waited a long time to see the gastroenterologist, and when we were finally called back I was underwhelmed to say the least. The doctor did not listen to me. I don't think he read my chart. He recommended a gastric emptying test, an endoscopy and a colonoscopy. I asked if he would do a stain for mast cells. He gave me a blank look, and assured me he would biopsy anything which looked abnormal. He had no clue what I was talking about, and had already made up his mind I had Celiac sprue. He asked me for my departure date. I told him Friday the 30th. I left his office with test schedules and instructions for the gastric emptying test, which required me to eat bread, milk, and eggs and drink radioactive water. The scopes were scheduled for the 30th, which would require me to stay another weekend. 

I was so tired at this point, all I could do was let the information crush me. 

The doctor ordered immediate blood work to test for Celiac disease. As I trudged back to the Hilton Building, I was so defeated I knew the only solution was a song. Not really caring if anyone overheard, I sang softly:

Jesus, Jesus, how I trust Him,
how I've proved Him o'er and o'er.
Jesus, Jesus, precious Jesus,
O, for grace to trust Him more.

After labs, we were finally free to leave. While Mom and I waited for the shuttle back to the hotel, she put her remaining brain cells to good use. I could only nod in agreement. No gastric emptying test. Duh. And the scopes--if necessary--could be done at home. Genius! I high-fived Mom for still being able to think. By the time we returned to our room, it had been an 11 hour day at Mayo. I have no idea how I managed it. 

Grace, grace, God's grace. 

Over the weekend, test results trickled in, all coming back normal. I can see all results on Mayo's Portal application, which allows patients to see consult notes, test results, appointments, etc. online. I've trembled inwardly each time I've pulled up my information, feeling a mixture of relief and frustration with each normal lab. I couldn't help but wonder what those trembles meant. 

On Sunday, we went to Silver Lake. Our thoughts and hearts were still as we watched feathered mothers teach their tiny flocks self-sufficiency. 

I read Psalm 1 and Jeremiah 17 aloud to Mom as we gazed at the tree by the water. My tree. Softly, so softly, God began to speak. Through creation and His word, He whispered subtle truths and made connections in my mind. It wasn't until I was naked and alone that He grabbed me by the shoulders. 

I opened my records again on my iPod in the bath, heart beating fast. And suddenly, I knew. I had been lying to myself. The heart is deceitful above all things. We don't even know our own selves. Until God shows us. 

I have been telling everyone I don't know what I want to come of this trip and diagnosis doesn't matter. But if that were true, my heart wouldn't pound so every time I access my records. All along I've been saying, "I don't know what I hope for, so I will hope in God." But what does that mean, really? Here's the truth--I have not allowed myself to want anything too much because I'm afraid of disappointment. Disappointment hurts.

Stoicism may look like faith, but it's a fake. Faith requires risk. Stuffing desires is not risk; it's self protection. It's the very opposite of faith. 

Can I truly claim with Job, "Though You slay me, yet I will trust You" if I don't give God the opportunity to make me bleed, if I don't put my desires on the altar (Job 13:15)?

Here is my honest desire--I want answers, and I want them desperately. 

Suddenly, I was pouring out my heart to the Savior as I sat in the bath, physically and spiritually naked and vulnerable before Him. And it felt good. Nakedness felt wrong in the dermatologist's office where I was being meticulously examined for flaws by indifferent, clinical eyes. In that hotel bathroom, I was being looked upon with the greatest love of the universe by eyes which see me as perfect and radiant. The love made me bold.

For the first time in two years, I begged God for an answer. I pleaded that I would not return home empty-handed. I sobbed with the psalmist in desperation, "Let me not be ashamed!" (Psalm 25:20) For I would be ashamed if I have come up here for nothing, risking my small measure of health and abandoning my family for ten days on a fool's errand. I reminded Him I had prayed for Him to be glorified. "How can you be glorified unless I am given an answer?" I cried through tears. I know my sight is limited and my wisdom is small, but I just can't see it. 

I. am. terrified. It is so scary to make these admissions to myself, more so to make them public. I am standing stark before you, feeling all the cold of uncertainty in my own Winter of Wait. But here is what I know--God brought me up here. God has led me to this terrifying place of risk, trust, and honest faith, and God wants you to see it. There must be a purpose. There just has to be! I don't know what that purpose is exactly, but I know the purpose is good. I know it will showcase His Son.

God gave me these desires. I didn't go looking for them, so I believe He will answer me. I am so, so afraid. But I believe.

Lord, I believe! Help my unbelief! (Mark 9:24)

"Blessed is the man who trusts in the Lord, and whose hope is the Lord" (Jeremiah 17:7).

Maybe one day I'll attain to the strength and grace of that tree. For now, I'm going out on a limb. 

In Jesus' name, I believe.

Now let's see what He will do. 

Wednesday, May 21, 2014

Mayo Clinic Trip: Taxi Cab Edition

Aslan is on the move.

Shimmering ripples in the fabric of space and time dazzle our vision here in Minnesota. We stand in awe of the evidences of God's sovereignty. We arrived safely yesterday evening, and though I have been exposed to several triggers which have made me ill, I have not missed a breath or a step. Those Everlasting Arms are flexing (Deuteronomy 33:27). Mercy is holdng me up (Psalm 94:18).

Because this trip was not my idea but God's, I have felt since its inception I should leave the details up to Him. I bathed every decision in prayer. I felt His direction at every turn. But there was one question left unanswered until two weeks before the trip, and we needed to decide--taxi or car rental?

I immediately thought rental. Mom immediately thought taxi. We debated all the practical points. Which would be safest? Which would be the most economical? Which would save us the most stress? We did not know.

I was reading 1 Kings and the book of Acts at the time. In both books, there are examples of God's people casting lots to determine His will. In modern American culture, lot casting is considered to be a game of chance, but the book of Proverbs tells us differently--"The lot is cast into the lap, but its every decision is from the Lord" (Proverbs 16:33). Upon the belief God was leading me to determine His will in a new way, I asked Brandon to flip a coin. Tails. Taxi. Okay.

Our first taxi ride was uneventful. The driver was polite and friendly. He wore cologne, but left the windows rolled down. No big.

Today, we needed a ride to the grocery store in downtown Rochester. Once again, the driver was polite and friendly. And interesting. We small talked on the way to The People's Food Co-op without an inkling of how special this ride would be. We were mostly looking forward to the grocery store. Which. was. fabulous.

It was a mecca of organic, Melissa-friendly food and stuffs. Local farmers sell and trade their produce and meats at the store, which makes them available to the public. Most of the produce is organic. All of it is gorgeous. The meat is local and in some cases grassfed. There is also a large selection of specialty items and natural body care products. Mom and I were in grocery shopping heaven. Seriously, this store made the trip feel like a vacation. I could almost ignore the debilitating pain in my stomach, legs, and arms growing, growing, growing as we passed through the aisles. Almost. Until it began taking my breath away.

On the ride back to the hotel, I felt a nudge from the Holy Spirit as if to say, "Things are about to get interesting." It took a couple of minutes. We were almost at our destination when our driver began telling us about some of his experiences as a driver.

"I've laughed. I've cried. I've prayed with sick people," he said.

"Cool!" Mom replied. "Do you believe in Jesus?"

"Oh, yes. I used to be a pastor of an Assembly of God church."

He proceeded to tell us how after he had prayed for this one man with cancer, the cancer disappeared to the bewilderment of his doctors. He once led a girl to Christ in the front seat. And then he asked if he could pray for me.

"I would love that," I told him.

He took Mom and I by the hand, and began praying. The Holy Spirit fell in that vehicle. There was power in the prayer. I felt a warmth in my chest and torso I cannot explain. And suddenly, the pain all but vanished. I could breathe evenly again. No longer did I feel the need to hunch or clutch my rib cage. Never have I experienced immediate physical relief during or after prayer, but I did in that moment. I was stunned.

We asked his name. Arthur.

Arthur shared with us he was going through his own time of difficulty. No details. I asked if I could pray for him. He said yes. There were tears. I pulled out a handkerchief.

"This is for you," I said.

I told him my pain was better. He let me out of the car, and I couldn't help but embrace him. I loved him. He is my brother. Forever.

When we walked back upstairs, the cleaning chemicals and intense floral perfume did not overpower me. I have enjoyed pain relief all through the evening. Most of all, I have tremendous assurance we are right where we need to be. God has made trust incredibly easy.

He gave me three signs when I asked for one. He worked out every detail. He ordained we take a taxi. He put Arthur in my path as a result. God is here, and He is up to something good.

Thank you for praying for divine appointments! God has already begun answering your prayers! Glory to His name!

Update on Morgan: Surgery went incredibly well. It was not exploratory after all. Her doctor was able to assess and correct the problem immediately. She was discharged today with her pain under control. Praise God! Thank you for praying!

Sunday, May 18, 2014

Mayo Clinic Trip: Prayer Request Edition

After six months of thinking about it, praying about it, and planning for it, it seems kind of surreal the Mayo trip is upon us. We leave Tuesday. As in less than two days from now. 38 hours. We are down to hours, people.

A few of you have asked me how I feel about the trip. Truth be told, I am not thinking about it much. I am focusing on the task directly in front of me. At the moment, that means this blog post. For the past week, I've kept a manageable to-do list each day. There is grace to complete what must be completed, wisdom to know what is unnecessary. My days have been full, rewarding, and exhausting--mostly because the kids and I have cooked something up in the kitchen every day this week. Jesus has walked with me step by step, strengthening my soul, making me brave, and multiplying my efforts. (Can you believe I have prepared and frozen enough meals to sustain my family the entire time I am gone? I didn't think it could be done!) The moment my mind wanders from the task at hand to the upcoming trip--so full of danger and unknowns--I abandon the realm of grace.

Venturing outside of grace is like tiptoeing to the edge of a bottomless chasm. I look down into the darkness, feeling all my smallness and fragility. I attempt to imagine what's hidden in the shadows. It could be good. It could be bad. I don't really know. My stomach somersaults uncomfortably. My legs lose their bones. And that is all I can take before I run back to where grace is applied. When it's time to go spelunking, there will be grace for that. Everything I will need--physically, emotionally, and spiritually--is already supplied. But it's not yet ap-plied so I don't look there often. Or for long. And my stomach and legs thank me for it.

SO--I'm taking everything as it comes. I'm neither excited nor anxious about the trip. I am looking forward to walking with Jesus through it all, and experiencing His faithfulness in new ways. I'm curious about His purposes. Will He give me a glimpse of a few? Only the next two weeks will tell.

In the meantime, this is what you can ask of the Lord on my behalf:

1) God's glory. Whatever happens--whether good or seemingly bad--I want Jesus to be honored. His glory is more important to me than answers, my safety, or anything. When you pray for me, ask for God to be glorified first.

2) Mercy/safety. I want this trip to go as safely and smoothly as possible. Transportation is a significant concern. I am so thankful for Wings of Hope. Who could have imagined such a provision? But the plane will be small. I anticipate a fair amount of anxiety on my part. But who knows? Maybe I will like it! Either way, God does not abandon us after providing for us. He will help me out of His goodness and through your prayers. Also, taxi and shuttle services are potentially dangerous even with my mask.

3) Dr. Miguel Parks. I am asking the Lord to give Dr. Parks wisdom and compassion concerning me. I want him to want to help me. I want him to know what he should look for. I don't want a ton of unnecessary tests. Ask God to grant him discernment.

4) Mom. My mother will be my travel companion. This is no easy job. It will be up to her to perform rescue work if I have a severe reaction. She has to help me decide which tests to undergo and which ones to refuse. She is my advocate, and the only person I can really trust on this trip. Please pray for sufficient grace, wisdom, strength, joy, and peace for her.

5) My Superman. I have never been so glad to be married to a superhero, but even superheroes need prayer! Ask the Lord to give my man peace, strength, and patience as he becomes a working single parent for 10 days. His mind will often be in Minnesota. Pray the peace of God will stand guard over his thoughts. Ask that he would keep his eyes on the cross. 

6) Micah and Sara. My main concern is they would feel secure while I am gone. They are sensitive kids, and are used to having their momma readily available. Ask the Lord to manifest Himself to them in ways they understand. The childcare schedule is pictured below. You can pray for their caretakers each day if you wish. Dad is Arden, Nona is Sue, and Honey is Sue.

7) Divine appointments. I see this trip as a mission trip before I see it as a medical one. Ask the Lord to give Mom and me seeing eyes and open hearts. Ask Him to work powerfully in and through us to accomplish whatever He has prepared beforehand (Ephesians 2:10).

8) Helpful answers. I would love to leave Minnesota with a little more clarity and a firm plan in place.

9) Finally, I will ask you to pray for my cousin Morgan. She is more than my cousin--she has been my friend for 15 years. I love her like a sister. She is undergoing a high-risk, exploratory brain surgery on Tuesday, the day we leave for Minnesota. Morgan's neurosurgeon has admitted she is nervous about the surgery. "Nervous" is not a word you want to hear from your surgeon, especially your brain surgeon!

Mom and her mom (Suzonne) are sisters. Our family is close. We find it extremely difficult to leave at such a time, and we just can't understand why God would ordain both events to happen at once. However, we know God is GOD to both of us. We know He is God whether we are together or apart. He is God in Louisiana and Minnesota. We know He is equally present and active in both situations. We have nothing to fear.

Rather than explain the particulars of Morgan's situation in my own words, I have copied her Facebook status below:

"I have now been completely down since the beginning of March and lying flat almost a month. But I have been declining far longer than that. On Friday after getting much worse my doctor called me before leaving town for the weekend and scheduled brain surgery for Tuesday. She will be replacing my shunt for sure but doesn't know yet if she will have to replace the catheter that leads into my brain. Please pray for her as she makes this big decision. This will be the risky part of the surgery for me because my ventricles are slit (small) which puts me at high risk for a brain bleed or for not being able to get the catheter back in or back in a good place which would lead to more surgeries. If at all possible we would like to not have to have this part replaced. Also pray for peace for me and my family. And a speedy recovery. I am by no means looking forward to this. It is my 5th brain surgery on top of 4 other shunt related surgeries in 10 years. I am no stranger to the hospital yet I still have my fears. But my God has brought me through many trials and many hard roads. I know he isn't through with me yet. I maybe very tired a weary of these battles I face but Gods word says that He isn't tired of giving me power and strength. "Hast thou not known? hast thou not heard, that the everlasting God, the Lord, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength" (Isaiah 40:28, 29) SO I WILL "hope continually, and will yet praise thee more and more." (Psalms 71:14)."

Note: Morgan is wife to Nathan and mother to Shelby, age 4. Shelby and Micah are best friends.

One final thought--If something goes wrong, know that it hasn't.

I wrote these words in my journal the other day. I spoke them to Brandon today on our date.

 Let's decide now we will abide in this mindset. My trip and Morgan's surgery were planned before the beginning of time--small events woven into a fabric of glorious, grand proportions. God is weaving our threads into beautiful purposes. He sees the big picture. He knows what He is doing. His heart is kind, and His purposes are good. We can trust Him. I speak this over me, my family, over Morgan, and over you, Dear Reader--"If something goes wrong, know that it hasn't." Not really and not forever.

Mom and I will post updates to Facebook. For those of you who are not on Facebook, we will also send out texts. We only need your cell number. You can email your number to If you are on Facebook, but would also like to receive texts, please let me know.

Thank you for taking an interest in my life and my family. Thank you for reading my thoughts and praying for me for the past two years. Thank you for praying now. God bless you.

A perfect way to wake up on Sunday morning. I'm gonna miss these monkeys while I'm gone. 
All three of them.

Friday, May 9, 2014

A Legacy of Grace

Mother's Day is almost here. I've been gratefully thinking of my mother and wondering what kind of mother my children will remember when they are grown. It won't be Supermom. She died long ago. I no longer measure my worth by perfect birthday parties, trips to the zoo, little league, and ballet classes. (Not that I think there is anything wrong with these things. I just can't do them due to my health. If I could, I would!) I don't beat myself up over dirty bathrooms or piled high laundry. I know I don't have to follow the latest Pinterest trends to be a good mother. But last night as I lay wide-eyed in the dark listening to swirling wind and pelting rain batter our little tin roof, I wondered what legacy I am creating for my kids. What impression are my words and actions leaving upon the little souls I care for?

Though I'm glad I have learned not to hold myself to an impossible standard, I know I sometimes allow my illness to excuse bad behavior. I'm ashamed to admit it, but deep down I justify my sharp tone, exasperated sigh, and angry body language with the pain turning my stomach inside out and the fatigue transforming me into a useless rag doll. Extenuating circumstances permit me to withhold empathy from the small boy who late at night cries real tears over real fears which seem ridiculous to me, right?


My illness does not entitle me to any free passes. I have one shot to make the most of this parenting thing. Disease has stolen so much from me. I cannot play the victim, and allow it to thieve away my best opportunity to make the love of God tangible to my precious ones.

But there is this very real problem of being a sinner. Trial is a wine press--it squeezes and applies pressure until juice is extracted from the fruit. What is inside is what comes out. I exude sin because I am full of sin, full of self. Despite my best efforts, I am unable to live up to even my reduced standards of "good motherhood." I will inevitably fail to be the woman I want to be.

It was with these thoughts anxiety began to use my insides as percussion instruments, almost drowning out the sound of the rain. I remembered how I had endlessly chided Sara for picking the pretty purple flower out of the butterfly garden with a disgusted tremble. I shuddered as I recalled my impatience with the kids as they noisily dragged up chairs to our too-small counter in our too-small kitchen, crowding me out of my workspace, asking to "help," which may be the most exhausting request of all. I saw in my mind's eye two sets of sweet brown eyes filled with confusion and hurt, and had a wild thought--I'm failing! I am ruining my children!

I suddenly realized I was trying on that old cape I thought I had put away two years ago. Supermom may be dead, but the woman left behind is still trying to save herself. She still believes her performance will determine how her kids turn out. Gently, tenderly, Truth sidled up beside her, and whispered to her in the dark--

Micah and Sara don't need another savior. They already have One.
They don't need a perfect mother. They need a penitent one.
They don't need to witness unflinching strength. They need to behold God's glory in human weakness.
They don't need a hero. They need a damsel running again and again to the ultimate Hero with all her inadequacies, failures, and sin.
They need "I'm sorry," "Please forgive me," "Mommy was wrong," and "This is why Jesus had to die--for mommies like me."
Micah and Sara need grace.

Grace doesn't give me permission to be the biggest brat in the house (Romans 6). Rather, it gives me the grit to keep aiming for God's smile in the face of failure. It assures me that He is somehow working good in, through, and in spite of my brokenness. He does that, you know.

Grace holds the balance--I can neither parent so poorly I ensure the destruction of my children nor perform so well that I ensure their success. Grace both covers my failures, and puts me in my place. It supplies a welcoming smile on my tired face when baby birds chirp--"Help! Help! Wanna help!" It provides binding when sharp eyes and words wound tender souls. It silences the broken record-like reproach, and finds a glass jar in which to showcase a purple flower freshly-picked by tiny, well-meaning fists. It calms the fears of a sick mother in the night, inspiring her to rise, lean on fresh mercies, and try again. It fills her with the Sweet Spirit who enables her to love in the little things until the little things make well-worn trails through the little ones' hearts, leading them home to Grace Personified.

The mom who burns her cape is the bravest mom of all. This mom courageously admits her limits, and waits with expectation upon the Lord to perform what she cannot. She plants the seed and pleads for it to be given growth. She knows how weak she is, and trusts in the infinite power of her God. She is a mother on her knees because she knows without her Savior neither she nor her little ones can stand. She knows God is after her dependence, not her capabilities.

I am not the mother the holiday cards talk about. I am the mother who yells and fails and falls flat on her face. But from the ground I call out to my God. My kids hear it. They see it. They drink of the wine pressed out by trial--fermented, aged, entirely transformed by glorious, glorious grace.

Grace, grace, God's grace......

Feet quick to run to Jesus and an extravagant expenditure of grace. This is my legacy. And I'm okay with that.

Happy Mother's Day! 

I have a cape to burn.

Friday, May 2, 2014

The Second Anniversary: In Acknowledgment

The Lord has acknowledged the second anniversary of my health collapse by granting me a rare, good day this 2nd of May in 2014. I was well enough to take the kids outside for a few minutes after lunch. As I soaked in the heat and healing of the sun, I thought about the fact that one day there will be no need of a sun because we will have the Son with us for all eternity. He will be light, warmth and healing forever. The life humming in my cells in response to golden rays is a foreshadowing of the eternal state of my soul. Hallelujah!

The weather was perfect. I listened to songs of breeze and birds. I took the kids over to Dad's up and coming butterfly garden where flowers of every vibrant shade are blooming. We made our way to Daisy's grave where Dad planted the yellow rose bush in her memory. I miss that dog. Honeysuckle climbs the shady pine standing tall next to the little patch of still-bare red earth. I breathed deeply of its sweet, heady perfume. We made plans for the blackberries just beginning to emerge from the blooming brambles in our front yard. There will be pie! I found an autoimmune paleo approved recipe on Pinterest the other day. Lord willing, the kids and I will make it together. I wonder if the berries will be ripe before I leave for Mayo in a couple of weeks.

In the stillness of these moments, I have reflected on the scared, young mother I was two years ago. I quietly bless her heart with a sad, knowing smile. She thought she was dying while--in fact--she was coming alive for the first time.

The road has been admittedly difficult--full of heartache and disappointment. In many ways I am sicker today than I was two years ago. I had every intention of planning my "I'm healed"/30th birthday shindig at this time, but I still don't know the name of my disease--assuming there is a name--and my symptoms remain largely uncontrolled.

Nonetheless, I'm not sorry. I would not trade what I have seen and known of God for perfect health.
I have had the privilege of learning the meaning of the psalmist's words:

"Those who sow in tears
Shall reap in joy.
He who continually goes forth weeping,
Bearing seed for sowing,
Shall doubtless come again with rejoicing,
Bringing his sheaves with him."
-Psalm 126:5-6

I have given Jesus my tears and brokenness. In return, He has given joy and wholeness--by giving Himself again and again and again. He is joy. He is wellness. If I miss this, I miss everything.

For all He has brought me through, for all He will do-- 

"Bless the Lord, O my soul, and forget not all His benefits:
Who forgives all your iniquities,
Who heals all your diseases,
Who redeems your life from destruction,
Who crowns you with lovingkindness and tender mercies,
Who satisfies your mouth with good things,
So that your youth is renewed like the eagle's."
--Psalm 103:1-5

I would like to dedicate this beautiful song to my Superman, who has faced with me the difficulties of these past two years with courage and faithfulness. You have loved me as Jesus has loved me--knowing me fully and loving all you know. Thank you, B, for drinking this cup with me, enduring the miles, and not leaving me to face the dragons alone. Happy second anniversary.

If you are new to my blog, I recommend these posts:

The Journey and A Rough Landing: The first post I wrote after my health collapse

The Rough Landing and A Journey: The one year anniversary post