A Candid Discussion of My Faith, Health, and 2013

In the beginning I felt a deep anger towards God. How could he let this happen to me? Why hadn’t he intervened? My anger was a spray covering everyone whose lives seemed healthy and easy

Eventually that anger turned to fear. I wrestled intimately with questions I had worked out theologically. Had I lived a life worthy of sitting at the feet of Jesus? Was heaven real? Had my faith been misplaced? I remember cowering on the floorboard of my car in a random neighborhood, feeling so lost and small. If God had overlooked me, who then could see my suffering?

In late 2007, I came down with a sinus infection that never went away. I began to faint and see stars. My breathing was labored despite an active lifestyle. Getting out of bed was a chore. After more than 12 rounds of antibiotics and a half dozen referrals I had begun to despair I would never breathe normally again. I began to see increasingly more distinguished and expensive doctors. My pain grew unbearable and the little bag of tissues I constantly carried around with me became a monthly bill. Eventually, I was given a diagnosis - Churg Strauss Syndrome. It was serious.

I was sent to a local specialist who began me on a daily regimen of the beast, Prednisone, a bitter foe and dear friend. My medicine cabinet which previously consisted of Eucalyptus oil and bandaids was taken over by chemotherapy medicine and an army of drugs to help me manage the effects of the medicine regimen. I lost touch with my own body. Its cues were now too complex for me to treat at home. I couldn’t tell if a sore throat was a little tickle or the beginning stages of pneumonia.

My job became to rest. Turn over all of my responsibilities and focus on the difficult work of reaching remission. I had joked every day for years that I wished I could slow down and nap, but I always knew it wasn’t true. I thrived on usefulness. Running circles around others mentally and physically felt like a calling. I soared at it. I volunteered 40+ hours a week, mothered my children, worked both in and out of the home, and still found time for profitable hobbies. My self-worth had wrapped itself like a pernicious vine around the god of productivity.

God stripped it all away.  A small voice asked me if I was still valuable to Him if I could give nothing. Oh how I wept! I couldn’t accept it. What value could I have lying in bed alone? As I faded from the foreground at my church, the phone calls and concern quickly tapered off. I was deathly ill and completely alone. With nothing to give, I began attending a new local church and I worried that people would think I was a newcomer to the faith. I felt the need in casual conversation to give a resume of my good deeds and drop names so people would know I was important - that I wasn’t a leech draining the resources of the church.

I don’t remember when pride became such a dogged friend. I couldn’t shake it. As I worked less and my husband had to take time off work to care for me, the medical bills began to pile up. Our credit card became a way to survive another day. To my surprise and embarrassment my new church reached out to help alleviate some of our medical bills and stress. If they hadn’t surprised me I don’t think I could have accepted it. I wasn’t humble enough to receive benevolence. I had pulled myself up by my bootstraps since I was a 15-year-old runaway. I didn’t want anyone to have a hand in the success of my life. I couldn’t face the reality of now needing the fellowship of believers.

I could admit to needing grace to cover my sins, but not $200 to put food on the table.

I am now six years into a disease that kills half of it’s victims between 5-7 years. I am no closer to remission than when I first began.

I pass by you at the store and at church stumbling through my day with ringing ears, intense aching pressure behind my eyes, weakened limbs, and nerves that tingle and burn through my arms and legs. Most days my lungs squeeze like a python depleting it’s prey of life.

When people ask me how I am, I smile and find a way to spare them the horrid details of nights spent vomiting, hair that is brittle and falling out at the slightest touch, lying in a puddle of my own tears or bodily matter because the chemotherapy has so wrecked my body I can’t stand or take care of myself. I dress to cover rashes and sores, not to mention the weight of five straight years of steroid therapy. I carry tissues everywhere to mop up mucus and blood that erupt involuntarily from my lungs. There are days when the pain is so great I cannot bear even the sweet smiles and gentle whispers of my children.

Disease has created a deep dark hole that I must face completely alone. In this darkness I have found two things - myself and God. The fast pace and over connected tailspin of my life left little time for deep reflection and even less energy for listening to a God that I could not see or touch. But in the darkness and void, it was quiet and still. I could hear my own worry. I could sense my own exhaustion. I began to hear again another voice speaking to me. My busyness had drowned out the voice of my creator.

I was left with the choice to continue trying to cover up my innermost thoughts, to dress up and excuse my jealousy and fear. I could frantically paint a veneer of righteousness or unclothe my sins and stand before Him exposed. I obsessed over the question, why me? Tenderly, I would hear why not you? Would I stumble and faint from pain? Could He be good and let me suffer? Disease is a curse we have brought upon creation by the sin of mankind, nevertheless the daily agony feels very personal.

In this place, I finally shed the lie that my salvation or goodness had anything to do with my own vain efforts. God had freely given me grace when I was a 16-year-old homeless punk and still loved me as a broken body unable to give anything in return for his grace and love. My value comes from being created in His image and redeemed by His wild and freely-given grace.

Eventually, I turned my heart to living the life I’ve been given. I culled the ministries to which I give my time. First and foremost, I serve my husband. It involves a lot of listening, laughter, patience, and keeping our home in order. I dug deeper into my role as a mother and try to be a woman they will admire and an example they can follow. There can hardly be a better example of patience as I grit my teeth through a migraine and sing along with their nursery rhymes or walking them to the park short of breath and dreaming of my pillow. I divide the rest of my time between my closest friends, my church, and making pocket change when I can.

Mostly now, my work in internal:
I lay down my sins.
I pour out my fears.
I cough up my anguish.
I weep for lost strength.
I mourn my plans and my health.
I dream of heaven.

I see His kingdom in the bowl of hot soup delivered by a friend.
I sense His compassion in the knowing hug of the chronically ill.
I feel His tenderness as my child wipes hot tears from my eyes.
I know His faithfulness through my husband who walks beside me in suffering.
I am comforted by the sincere, nightly prayers of nieces and nephews.

God gave me this one word for 2013 - MOURN, and oh how I’ve wept! I've choked on my loss. I've grieved and wailed and screamed and torn my pillow open with the gnashing of my teeth.

Last December to this one were absolutely wretched. My body burned from chemotherapy. It swelled and ached from steroid therapy. I lost a job that I poured everything into. My spirit was crushed by people I counted as friends before their true character was revealed. I had to draw more boundaries. I had to give up more things and accept less invitations. I have had to learn to be content with less in most areas of my life. It has not been easy, but I am no longer angry. There were moments I begged for relief from my pain, longing for Jesus to take me home.

It may not be pretty, but I will declare what I know to be true -

He has not healed me, but he has not abandoned me.

My life is not perfect, but I am blessed.

His praise will continually be on my lips. I have a sweet peace. One day I will see Him with my own eyes. I will touch his scars. I will drag myself before him and kneel with this broken tired body, and He will make me whole.

I am looking forward to 2014. In Christ, there is more to live for than ever before. I love my friends and I hope that you will bear with me as I press on towards the goal God has called me heavenward in Christ Jesus.

Special Needs

This morning at Walmart -

(Seeing a child struggle)

Blue - "What's going on?"
Me - "He has special needs."
Blue - "What's that?"
Me - "Um.. when a person needs more understanding, grace, and patience from everyone around them. We should either help or mind our own business."

Sofie (whispering to Blue) - "that's how we should treat everyone."

Husband

I was overwhelmed. He supported me.

I lost my temper. He apologized and made me laugh.

I ran out of time, and he gave me his.

I was an hour away from home at a birthday party developing a migraine and he put two grumpy kids in the car and drove to get me without a complaint or cross word.

I cried and he listened.

Tough day, but very grateful for my husband.

Feeling blessed and humbled.

A letter to my son, upon turning four

I lie awake watching the peaceful rise and fall of your chest. For four years you have slept inches from my side, your bed nestled next to mine, easing my mother’s heart with the soft sounds of your even breathing.

Some nights when you wake up to the darkness of the house your tiny voice reaches across to me asking “Momma, will you holds my hand? I am afraid.” I think ahead to you as a grown man who will show the world no fear, who will probably endure my mothering with long-suffering and gritted teeth, and I stretch out my arm so that I can hold your tiny hand through the night.

I read once that a boy learns empathy and compassion from his mother. When my nerves start to dance and tingle from hours of holding your hand or cradling you I hope that you can sense how important it is to me that we love others.

Most mornings I crawl back into my bed hours after I’ve woken up just so I can start your day with a few minutes of my undivided attention. You roll into my bed like a growing snowball, gathering blankets and pillows along the way. You love softness.

It usually takes you several minutes to warm up to the idea of being awake. You ask me to scratch your back and get you a cup of cold ice water. Occasionally you wake up chipper, giggling, and ready to fly from the bed. Most often you wordlessly run your hands over my face, tuck yourself closely to my side, and play quietly with whatever toy you took to bed the night before. You want to enjoy my company and the calm of the room before tackling the day. I’ve learned to respect your silent routine for no other reason than you delight me and I comfort you.

You must be slowly unraveled each day. Those layers are not easy for me to peel back. Sometimes you come wrapped in anger because you didn’t get enough sleep or food, a flexing of your strong will - demanding to have your own way. Some days the layers are impatient: with me, with yourself. You cannot wait to outgrow your littleness. You want to be taller and stronger. You want to understand how everything works and have a bigger vocabulary. You want the whole world to move quicker and talk less. In this, you are definitely my child.

Your favorite foods are dark red strawberries, fresh blackberries, juicy watermelon, and sizzling bacon. You love icy cold salads, late night pizza, and cookies sneaked after bedtime. 

You’re a quiet mystery. You don’t gush forth your thoughts and we can’t read your emotions in every wrinkle across your face and gesture with your hands. When I laugh it fills a whole room, but your amusement barely fills a smirk.

You express yourself in subtlety.

You’re often still and silent, observing. I gather this is why you always seem to know how things work. More than once you’ve completely surprised me with information or skills you’ve learned just by listening in the background or tinkering instead of playing.

You are four-years-old today and I am weepy. I’ve watched you shed the last layers of babyhood and become a boy. I wish that I could heighten all of my senses to capture every small detail of your passing days even the frustrating ones that make me want to rip my hair out..
You’re such a moody soul.

Where your sister is sunshine and warmth, you are my rainstorm - but OH how I love the rain. It cools down our soaring temperatures. It brings stillness. It sustains and renews. When you were born you forever changed our family. You demanded we slow down. You ask us to be quiet. You enjoy peaceful activities. You hate to be rushed or hurried. You do have days of dark clouds and thunderstorms, but you’ve pushed me to find a tranquil pace of life for our family.

You’re at your best at night - an unrepentant night owl, coming awake as the sun goes down. I used to have the house to myself to read and craft through the night, but now you’re my constant companion.

You are my tiny precious bit of something other. You are completely irreplaceable. I jealously guard my time with you knowing the day will come when you ask me to yield my place to another.

Right now I am your favorite person in the world.
I know exactly how you like your food, warm never hot.
I know that you’re extremely left-handed, and left-brained.
I know you like the black Spiderman shirt and not the blue.
I know your routine and the repercussions for breaking it.
I know some days you need firm discipline, and some a generous dose of grace.
I know you are sweet and gentle, a balm to my soul.

I love you. You’re still my baby. Happy fourth birthday.

Your Shadow

Your Shadow
by DeeDee Roe

I slipped beneath the weeping willow bearing hurts and dreams,

Yes escaping from relentless sun
bright yellow wearying beams.
I lay upon the crusty Earth
my thoughts drifting with the breeze:
the busy ant, a sweet song bird
and in the dark, there’s me.
Betrayed/Betrayer
somehow Redeemed
Your shadow is a weeping willow
washing away my sin and pain.

Someone Bombed the Boston Marathon


Someone Bombed the Boston Marathon -
a poem for my friends who run
by deedee roe

I’d barely taken off my mourning clothes
for the children our nation lost in December
when I heard the news -

Someone bombed the Boston Marathon.

Even in my desperate grief I couldn’t help, but think

You bombed the wrong people.

We run for our mothers and brothers and friends.
We run for remission and cures.
We run for remembrance and celebration.
We run AGAINst cancer.
We run to raise money and awareness.
We run to show our inner fight.

We run from handicaps and we run WITH handicaps.
We run despite and throughout.
We run hot and cold,
blistered and bloody,
lonely and fatigued,
worried and stressed,
together and alone.

We run to shed our grief,
each mile jogging the depression,
losing the weight, and dropping the baggage.

We run undeterred by hardship and difficulty.
We run out of excuses and we.just.keep.running.

We run to declare new life[styles].
We run in defiance of of death.

We run to give blood to broken bodies.

We run into the shrapnel and smoke to drag out the hurting.

We run as an exercise to show that we can take our bodies
from point A to point B
by the strength of our minds and these fragile vessels.

If someone thought they could make us cower and whimper and stay home,
if they thought they could strike us down with terror,
whoever thought that hatred and evil could overcome our spirit -
You bombed the wrong people.

For we will carry our wounded on our backs
and our dead in our hearts
and we will run on from this place forward
without your terror
your fear
or your hatred.

You have detonated our determination.
You have exploded the exercise of our freedom.
You have unified us.

For despite your evil
tomorrow we will lace ourselves with resolve
and we will run.

7th Birthday

It is January 8th - the quiet rainy eve of your seventh birthday. You are curled tightly in a ball with your pillow over your head, and your blankets on the floor given generously to your stuffed animals as you shiver against the cold winter night. You are wearing one sock - a polka-dotted toe sock given to you by your beloved cousin Kaylen. Your room hums with activity even while you sleep - mostly because you move a lot in your sleep. Ponies line the windowsill along with a small bubble-filled tupperware bowl where you must have shampooed their hair after your bath. Pens, pencils, crayons, markers, stickers, and little notebooks are strewn variously throughout the room each marking the exact spot of your inspiration. Books, small readers, and catalogs peek from beneath your pillow. I reluctantly pull them from your bed smiling because I’m pleased that you’re turning into a voracious bookworm. I cringe a bit when I see that you dog-ear your pages and write through the margins.



I can hardly believe it’s been seven years. I remember vividly the night before you were born. You were two whole weeks overdue, and finally my water broke. We were literally in the middle of painting your bedroom adding a dark pink stripe to your light pink walls, and I insisted on finishing before we left for the hospital. Little did I know that stubbornness could be passed through the umbilical cord, and taking on large projects at the last minute would become a way of life for us. I love that your ideas are always big. I love that your imagination is limited only by your vocabulary, and even then you make up words. If something is uncomfortable or rubbing you the wrong way - it’s friggly. If something doesn’t match, but you still think it is cute enough to wear it’s taxi (as in borderline tacky). 



Every morning when you wake up and get ready for the day I see you stretching more comfortably into your personality. You used to be so offended when people called you bossy, and now you mostly laugh and shrug it off. It’s a joy to watch you grow every day. I feel that sometimes you must see me as an itch on your side constantly irritating you to address this side or that. God has done amazing things in your life the last four years. You won’t even remember, but there was a time you had very little concern for other people’s feelings and refused to say sorry. Now you’re unfailingly compassionate and apologize without prompting. I was so proud to see you recognized this school year for your compassion and hospitality towards others. Through you God has reminded me of the best parts of myself I have hidden away. 



Most days I cannot believe I am so blessed to be your momma.

You always, without exception, make me proud. 



Your warmth makes the sun seem a cold autumn breeze.

Your energy makes the pink bunny look like a middle-aged man with a bad knee.

Your curls have more bounce than an Olympic trampoline.

Your hugs are more precious than jewels.
Your love is pure and sweet.

You fill my heart with gladness. 


You are my first baby. 

I love you.
Happy 7th Birthday Sofie.