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Send Me A Sign

Have you ever yelled at God?  Not just one or two lines of frustration but a full-on tantrum based on anger, fear, confusion and, yes, a whole lot of frustration.

Did you scream for a solid twenty minutes, a blubbering mess of tears and snot?

I have.  I did.  I railed at my God the entire drive home as I fought nausea and vomiting, pain in nearly every joint, and fatigue so deep I could have slept for days, except my body hurt too badly to allow such a thing.

Thankfully, I was alone in the car at the time.

Correction.  There were no other people in the car, but I wasn’t alone.  God was certainly there, listening to my every word, every question I wanted answered, every bit of vile disdain I threw at him.

As if the drive wasn’t enough, my tantrum continued inside my home.  After I spent a few minutes dry heaving in the toilet, I recoiled to my bed, wrapped myself in blankets and sobbed into a pillow.  My husband was quickly by my side.  Not knowing what to do with me in this form, he did all he knew to do; he gathered me in his arms and let me weep into his chest.

I cried much of the same words I’d screamed in the car.  When will this end?  Am I being punished for something?  All I want to do is be a mom and a wife.  Why can’t He let me have that?  I’m so tired.  I hurt.  I just want it to be over.  Why? Why? Why?

Why don’t I hear you, God? I hear friends talk about listening to God’s voice, so why haven’t You shared Your voice with me? You allowed this disease to ravage my body and my life, and then You just left me here alone to figure it out. Where are You? Please, God, talk to me. Send me a sign. Send me something to let me know You are listening! I feel so alone.

I had screamed these words while driving. I’d cried the words into my husband’s chest. And later, I whispered them again, after asking God to forgive me for behaving like a petulant child and to please, please let Izzi have this moment.

You see, I had scheduled a playdate for my six-year-old Izzi.  Paisley was the first friend in her class she’d ever shown any interest in inviting to our home.  This felt significant, and I didn’t want to cancel.  I loathe when my sickness affects my children’s lives.  I want their world to be untouched by this darkness inside of me.  I want their childhood to be “normal,” even though I realize it’s too late for that.

The playdate itself was doable, even if I was too sick.  I knew my husband and older daughter could handle it.  The complication was that this particular friend is much like our Izzi, shy around new people and extremely timid without her mom.  I knew to keep the playdate I would have to be well enough to entertain Paisley’s mom, Jen, while our children played.  I had never met Jen.  Aside from the occasional posts I’d seen on Facebook, I knew nothing about her, and, I guessed, she knew little about me.  Given the amount of time I had spent with my head in the toilet that morning and the fact that much of my body was wrapped in ice or heating pads, I didn’t know if could fake normal for an entire afternoon.  Heck, I didn’t know if I could stay awake for one conversation, let alone hours of them.

But I didn’t want to disappoint two little girls.

This dilemma made me furious at God.  I had accepted the changes and the profound loss in my life.  I’d lowered my standards to a degree a healthy person could not imagine.  I asked for little.  So why couldn’t God allow me to be well enough to spend an afternoon with a fellow mom?  Why couldn’t He give Izzi this??

The momma bear in me was wide awake, claws out and mouth open. It wasn’t about ME being sick, it was about my Izzi being allowed to enjoy a simple playdate, to have a normal life despite the unreliable health of her momma.

 

Undeterred by my symptoms, I forged ahead with the playdate.  If I got sick during it or if I fell asleep while Paisley’s mom was talking, so be it.  I figured I’d explain my sickness at the beginning of the visit and hope her mom understood.  I took more medicine and mentally steadied myself.

Izzi was positively ecstatic as she’d waited, yet when Paisley and her mom finally knocked, Izzi was too shy to open the door.  This was all she’d talked about for weeks, but her introversion kept her rooted to my side.  I opened the door and immediately realized little Paisley was having the same struggle.  As her mom and I chatted, the girls would not leave our sides.  Their armor was on and their shields were up.  This was not the kindergarten classroom.  They were unsure in this different environment.

So Jen and I ventured upstairs under the pretense of me showing her the decor of our 110 year old house.  When we reached Izzi’s room, we stood and talked while the girls slowly began to venture from behind us and actually play.

My nausea was completely gone.  My joint pain was tolerable.  The fatigue had abated.

We stood for about twenty minutes, then I showed Jen the rest of our home, stopping in the upstairs reading nook.  We knew if we went downstairs, the girls would retreat with us.  So we sat in the nook, me in the recliner and Jen on the floor, just a couple feet away from each other, and although we had just met, this felt as natural as breathing.  We talked as if we were childhood friends,  reconnecting after decades apart.

Now comes the God-wink you’ve been waiting for.  You knew it was coming, right?  Well, I didn’t.  Frankly, I was terrified that in my honesty and yelling, I had angered God.  I was so relieved at our daughters’ playing and my worst symptoms temporarily subsiding, I thought those two things in themselves were gifts I didn’t deserve after my outburst.

But that’s not how God works.

I shared a little of my Lyme story with Jen, including my endless search for a specialist who would be able to cure me, and at some point she said, “I saw Dr. Onishi, too.

I blinked as the recognition of those words hit me.

My Lyme Literate MD operates in Pennsylvania, just across our West Virginia border.  Only a handful of people around here even know of him and those who do only know him because they, too, suffer from Lyme or other tick-borne illnesses.

Jen, like me, credited Dr. Onishi for putting her on a treatment of prescription and holistic medicine that likely saved her life.  The odds of the two of us sharing so much of the same narrative are impossible to even imagine.

I listened to her story, noting amazing similarities no other person in my daily life could possibly understand.  The constant pain.  The loss of time.  The uncertainty.  The treatments.  The fear.

Above all, that feeling of aloneness, that no one else gets it because so few in our area have been diagnosed with Lyme disease.  That people doubt our sickness or our treatment or our inability to maintain a normal life.  The frustration of this all.

We talked for hours.  The girls played and giggled just a few yards from us as we discovered our miraculous connection.

God didn’t just send me the sign I’d begged for.  God sent me A FRIEND, a fellow mom, a kindred spirit in our bodies’ betrayal of us, a woman who GOT IT completely.

After dinner, Jen and Paisley said their goodbyes, and we all hugged, gently, as if we’d known each other forever.  Her story had breathed life back into mine, and for the first time in a long time, I didn’t feel so alone in this journey.

As they drove away, I wrapped Izzi into my arms and asked her if she’d had fun.

It was the best playdate ever, momma!“she responded.

“I really like your friend Paisley,” I said.

“Me too.”

“But you know what?” I said.  “I think I might like her mom even more!”

She grinned and wiggled out of my arms to play with her sister.  I collapsed into my spot beside the fireplace, a cozy chaise that has become my “Sheldon spot” this winter.  I closed my eyes and took inventory of my body.  Still no nausea –what a gift.  Some pain and soreness.  My head hurt from concentrating for so long.   But mostly I felt overwhelming exhaustion.

Before I slipped off to sleep, I whispered, “I’m so sorry for questioning you, God.  But thank you for showing up in a big way, in a way that left no room for doubt.  I asked for a sign and you sent Jen.  Thank you, thank you, thank you.”

Peace filled me then and I slept, wrapped in a soft blanket and my Father’s unwavering love.

Too often I feel abandoned by God.  But here’s the truth; how I feel is not how it is. The pauses in our life are places meant to strengthen our resolve, not weaken it.  I must trust that my healing –should it come on this side of heaven or not –is based on the grace of God.  Even on the bad days, the truth is God is still good, and He will carry me through this season just as he’s carried me through the ones before.

And now, thanks to a “random” playdate for my child, I am blessed with a kindred spirit, an unexpected friend, to walk beside me on this journey.

I had requested a sign, and He responded.

“Truly he is my rock and my salvation; he is my fortress, I will not be shaken.” Psalm 62:6

I will not be shaken.  Will not is tough for me; should not is unfortunately more realistic.  No one is perfect, but will not be shaken is what we should strive for every day.

Thankfully, he loves us even when we don’t achieve it.

 

 

 


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Justifying Joy This Christmas

Christmas, with it’s promise of shiny trinkets and warm decorations, was once my favorite time of the year.  Each season I added a new tree to the line up, totaling ten trees by 2012.  Each tree has its own personality and memories.

There’s the towering pencil tree with snow covered branches, wrapped in white lights and green and gold ribbon and layered in dozens and dozens of green and brown bulbs.

There’s the tall, thin tree in my daughters’ room, which looks like a prop for the set of Who-ville or CandyLand, with massive lollipops and bright pink, teal, and green accents. Gumdrop garland and cupcake bulbs make this colorful tree a delicious sight.

There’s the Grinch trees, and one is so special to us because it was decorated in primitive decor, from faux popcorn garland to adorable woodland animal ornaments, wrapped tightly in trash bags, and sent home with my husband.  This happened the first Christmas I was sick, and there are no words for the tears, the overwhelming sense of community, and the love that washed over my frail body when my husband brought it in, stood it up, and unwrapped this magical gift.  More than just a quirky tree, it was truly a gift symbolizing the Christmas spirit.

Last year, we wrapped a few of my trees with Saran wrap and carried them, fully intact, to the upstairs of our storage building.  My husband brought them inside this year. I cut the wrap, pulled it off, and ta-da! those trees were done.  I wish I’d done this with every tree.

I yearn for the coziness and warm spirit the house exudes when all of the Christmas decorations are up, but I just haven’t had the energy to make it happen yet.  The boxes are in the dining room, ready to be emptied.  The Grinch tree is up, ready to be shaped, yet the entire house is pretty much devoid of the traditional holiday fuss.

I haven’t even released Eli, our Elf on the Shelf.  Who has the energy for that hassle every single night?  First, come up with a way for the elf to make mischief.  Then, stay up late enough to do it without getting caught.  And finally, after the ten minutes of laughter, clean up the mess ….only to do all this again, night after night, until Santa finally takes the pesky gal away.

Oh, and remember that adorable advent calendar we love doing every year?  The kids usually get more pleasure from its activities than their presents Christmas morning, so why haven’t I made the time to dig out that beautiful manager scene box with its 25 drawers?  Why aren’t we counting down the most important birth in history?

I can’t blame my chronic Lyme disease, directly anyway.  I’m doing pretty well.  Yes, that looks very different than wellness on a healthy person, but I can get through most days without handfuls of medication.  I’m able to function basically on an alternating day schedule with full days of rest and sleep in between.  I’m not in the hospital.  My chest port isn’t even accessed.  For now, my Lyme is in remission.  Sort of.

It’s the mental side of Lyme that has me in a funk.  I’m stuck in comparisons.  This time three years ago compared to now.  For the life of me, I still cannot wrap my mind around it.  Just last week, I received an invitation to join the WV Retired Teachers Association, and that piece of junk mail has thrown me into a tailspin.

I am a retired teacher at just 39.  My brain cannot process this.

A letter this week notified me that I have automatically been enrolled in Medicare based on my permanent disability.

Medicare.

Permanent disability.

Retired.

39.

These are all true words, true statements, but no matter how hard I try, I can’t grasp that these ugly terms describe me.  I am teacher.  I’m practically a newly wed.  I have five children and a grand baby.  I am supposed to have so much life ahead of me, but instead words like “permanent, disability, retired, medicare, pain, no cure” make the life ahead feel achingly long.

Forty more years of this daily pain and confusion.  God, I hope not.

A couple days ago, I, as a good wife should, accompanied my husband to his staff Christmas dinner, knowing from experience that the evening would be a challenge.  Remember, just three years ago, I was part of this staff, too.  Most of the time, I avoided eye contact because I feared tears spilling over, drowning everyone’s merriment.  I listened to side conversations about ornery students, funny anecdotes, and the looming grading deadline.  About a third of the faces I didn’t even recognize; the retirement turnover has been so drastic.  And as horrible as this truth will sound, as I discreetly looked at the faces I did know, I simultaneously loved and hated them.

I miss them terribly.  I’ve cried at the loss of their closeness, yet, in that moment, I hoped I would never have to see them again.  Their ability to do what I can never do again pierces my heart, and I am wrecked with cold, hard envy.  A few who have stayed in touch know how difficult the evening is for me and try to maintain safe conversation topics.  Others complain about paperwork or politics or parents, and I beg God to keep my mouth shut, to keep me from screaming, “You are so lucky to have these problems! Please take mine!”

People say that I have handled my disease and the changes it brought “so gracefully.”

I have not.

There are moments of sheer bitterness, moments of screaming, crying and questioning, moments when I want so badly to give up.  My husband and my children come the closest to seeing the reality of my sickness.  It is not pretty.  There is very little grace.  There is much anguish and jealousy, and the deep need to understand why me and why this pervades even my best days.

And, damn, I wish I’d witnessed some foreshadowing of how drastically my life would change.  I wish I’d known I was peaking when it was happening.  Was it the day my youngest was born?  Was it my wedding day, as that tick embedded itself in the back of my arm, infecting me with this disease?  Was that the best day of my life?  At the moment, it sure felt perfect and meant to be.  Now I wonder if this disease is a punishment, God’s way of reminding me daily that the path I took to get here was not the Godly one.

Is that how God operates?  Does he punish us for our sins in creatively callous ways?  If so, how long can one punishment last?  I look around at the immense heartache –thousands of children slaughtered in Aleppo, 36 dying in a warehouse inferno, a little girl gone because of a zip-line accident, a newborn baby with the same birth and death date.  Surely, these deaths are not designed as others’ punishments.  When my childhood friend was killed by an intoxicated driver, nothing could have convinced me that her two sweet little girls did anything to deserve living a life without their mother.  Her death was not a punishment from God, though somedays it sure feels like He turned away from us for a second and, in that second, she was gone.

Then, this week, the kindest, purest woman I know learned that she has spots on her colon, liver and lung.  This beautiful woman is the strongest prayer warrior I know.  She was a rock of faith for my children when I was first sick, and I have been undone by her news.  Doubting.  Questioning.  Angry.  Confused.  Most of all, heart broken.

I don’t understand the ugliness in my world.  I want God to take care of it, to shelter us from the evil around and within us.  Instead, we are attacked by our own traitorous bodies, and I am left with a wounded soul.

A soul that asks why, while knowing the answer will not come while I live.

A soul that begs for children to be protected and for moms to live.

A soul that wants so badly to be in the Christmas spirit, to celebrate the birth of our Savior, who will take all of this pain, both physical and mental, from me someday… yet I can’t seem to move beyond the whisperings of my mind.

There is so much beauty in my life, even if it isn’t the life I’d planned.  My children, my grand baby, my husband, my volunteer time at my daughters’ school, my charming home full of projects, bookcases of wonderful books, my goofy puppy…

My soul longs for happiness and gratitude for all these blessing, but my mind relentlessly whispers contemptuous words….retired, disabled, Lyme, permanent, pain, punishment, cancer…and joy feels impossibly out of reach right now.

How can I feel joy when thousands of innocent refugees are stranded in Aleppo, dying as I type?  How can I even think of joy when my dear friend struggles to find the right words to tell her children how sick she really is and about the battle they are about to face?  Decorating a Christmas tree seems so trivial, and I just can’t bring myself to open a single one of those damn boxes of decorations.

Pain and joy are universal.  They spread to those we love, and sometimes, to those on the other side of the world, who we don’t even know.  These days, I am drowning in the pain of the world.  I come up quickly for just enough air to keep going, but the heaviness of my heart makes each gasp for another breath shorter and harder to take.

I find myself asking over and over, “How is this our world?  How is this okay?  Where are you, God?”

And all the things I am supposed to be doing….decorating, shopping, the advent calendar, that creepy, pain in the ass Elf on the Shelf….seem silly.  Actually, more than silly, they seem shameful.

Children are dying.  People are sick.  And I ache.

Christmas doesn’t create a “ceasefire” to any of these horrors and heartaches.

Today, as I compare my life now to the life I had just three years ago, I am bitter.  I miss my colleagues, who were back then also my friends.  I miss my students, on whose futures and choices I know I made an impact.  I miss being able to clean my house in one day and put up all the Christmas decorations the next.  I miss having all of my children under one roof, and knowing all of them thought I was the greatest person on earth.  I miss feeling confident, pretty, and intelligent.  I miss feeling needed and productive.

Today, I have no colleagues because I am permanently disabled and, therefore, unable to have a full-time job.  I have few friends because friendships require time and effort, and I am forgetful, depressed, and have nothing exciting to add to conversation.  I have no students; my impact is limited to the children in my own home.  I will never have my entire house clean because I do not have the energy for such a task, and if the Christmas decorations go up, bit by bit, they likely will not come down until spring break.  I will never again have all my children under one roof as they are growing up and raising their own families, and since they have seen me in tears of despair, screams of agony, and sobs of loneliness, they know I am far too weak to be the greatest person on this earth.  Every single day, I battle feelings of complete inadequacy, Lyme brain fog forgetfulness, and the day to day markers of a body in constant turmoil.  My illness has rendered me unreliable, and I no longer feel pretty or needed in this world.  I avoid mirrors at all costs.

I am simply taking up space until God calls me home and answers a whole bunch of questions I have for Him.  In the meantime, I will be the warm body my children and husband need me to be.  I will put on a happy face, appear to walk with grace, and fulfill whatever duties I am physically able, like decorating this darn house for Christmas.

Somehow, I’ll get it done.

And with every ornament I place, every ribbon I tie, every twinkle light I turn on, I will pray.  Pray for Aleppo.  Pray for the sick and the hurting.  Pray for my dear friend.  Pray for motherless children and childless mothers.

This is the only way I can justify tasting a little joy in such an ugly world this Christmas season.


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The Throne

I loathe vomiting.

When a stomach bug attacks, I will remain in the fetal position for days with agonizing nausea rather than just getting it over with and throwing up.  I’ve always been this way.  Had I been one of those pregnant women with constant morning sickness, there would likely be three less children in the world.

Nearly all of September, I endured constant nausea, vertigo, and vomiting.  My entire world became the twelve steps from my bed to my toilet, and the return trip often required a pause midway.  We aren’t sure if these symptoms were a result of my horrid headache —I have a history of vomiting when pain heightens –or if it was just another side effect of my aggressive antibiotic treatment.  Either way, I was miserable.

One of those beautiful fall mornings, I woke feeling usual queasiness and significant pain.  I messaged a friend to cancel plans yet again and asked her to remember me in her prayers.  She asked what she should specifically pray for, and I quickly responded.  I need God to ease the nausea.  I can handle mind-numbing pain over continuous sea sickness any day.

Around 2:00 that afternoon, I pulled my hair back in a ponytail, grabbed a receptacle, and forced my aching body to drive the 35 minutes into town to pick up my daughters.  I’d already vomited once, so I rationalized that I could probably make it there and back before requiring my bathroom again.

Boy, was I wrong.  The more I drove, the sicker I became.  The more I moved, the more the world spun.  I knew I wasn’t going to make it, so I frantically pulled into a BFS gas station and dashed to the restroom.

Let me tell you. As awful as it is to be sick in your own home, it is infinitely worse to vomit into a public toilet.  I had no choice.  My body seized and heaved until I was beyond exhausted, sitting on the cold, sticky tile, knees up and head bent.  Tears rolled down my cheeks, another automatic effect of vomiting.  I couldn’t move.  I was too tired, and I wasn’t sure if my body was finished betraying me.

I pulled my cell phone from my sweatshirt pocket and attempted to distract myself until the symptoms were tolerable.  No texts.  No messages.  Just one email.  I began reading.

Just a short note to let you know how very special you are. I am so thankful that you are in my life and that I am getting to share in your life with your sweet children. My prayer is that God will touch you right now and give you strength and a reprieve from the pain AND an overwhelming sense of peace in knowing that you are being used to share His glory with all those that know you.

My mouth filled with a familiar wetness as my stomach churned. I thrust the phone back into my pocket, moved from my bottom onto my knees, and once again retched into the public toilet.

Too spent to move, I rested my head on my arm and concentrated on breathing.  I longed for the overwhelming sense of peace my friend had prayed for.  But what were her exact words?  Still caressing the toilet, I retrieved my phone and reread the email.  An overwhelming sense of peace in knowing that you are being used to share His glory….

As I lifted my head, I thought there is NOTHING glorious about THIS.  Poop splatters were visible on the back ring on the toilet.  Splatters, mind you, that were not mine.  The stickiness of the floor, again, not a result of me.  The hundreds of germs I pictured under a black light were in no way glorious.  This part of my story cannot possibly share God’s glory with all those who know me.  I managed to chuckle a bit at the horrible timing of this sweet prayer from such a well-meaning friend.

It took about twenty minutes to pull myself together and get to my daughters’ school.  I pulled into the parking lot, reclined my seat to ease my headache, and called my husband.  Tears of frustration, pain, and exhaustion poured.  We contacted my doctor and he called in several different nausea medications with the hope that something would work.

(As a side note, often Lyme sufferers lose the ability to feel any relief from medication.  I have potent prescriptions for pain, nausea, sleeping aids, etc.; yet, nothing affects me.  The strongest sleeping aid doesn’t even make me drowsy.  Morphine might as well be an M&M.  This is why I rarely take medication.  It’s pointless.)

My husband retrieved my daughters from their school.  We decided to divide and conquer.  The girls and I would head home slowly while he went to the pharmacy to pick up the new medications, which I hoped beyond hope would somehow help this time.  If the nausea or pain became too intense, I agreed to pull over and wait for him.

I encouraged the girls to tell me all about their day as we made our way back to the safety of my bed.  Gracie realized that if she kept talking, it distracted me from the nausea and pain.  So she chattered and chattered.  When she’d exhausted all the actual academic topics, I learned which girls like which boys in her class.  She speculated on whether or not her teacher dyes her hair because “it’s beautiful and never has a single grey strand, Momma, and you have lots.” We discussed a book I was currently listening to, which led to an important discussion about refugees and our responsibility as children of God to help them.  This reminded me of the email I’d received that day.  So I told Gracie all about my rough drive in, my time in the gas station bathroom, and the kind albeit ill-timed email.

“Isn’t that funny?” I said.  “There is nothing glorious about puking, especially in a public restroom.”

Without missing a beat, Gracie said, “Well, they do call it The Throne.”

Have I mentioned how much I love that girl?

We pulled into our driveway, and as I walked up the sidewalk, I suddenly became aware that my body felt different.  I was still tired and achy, but the nausea was gone.  Completely absent.  My husband arrived home 15 minutes later.  I was already tucked safely in bed when he entered the room, ready to dispense whichever nausea medication I wanted to try first.

I smiled.  I didn’t need any medication because the relentless nausea that had plagued me for three weeks had disappeared.  That beautiful prayer had been heard and answered in God’s time.  It was only 6:00 in the evening, but I was so tired I couldn’t help drifting off into the deepest sleep I’d had in months.  I slept for almost three days, waking only long enough to use the restroom and kiss my children good morning and good night.  Peace had found me.

It trickled into my life on the sticky bathroom floor.  It took hold when my daughter and I giggled over the glorious throne.  And it filled and sustained me for three days while I slept and my body recovered.

“A heart at peace gives life to the body…” –Proverbs 14:30

What a gift I received in that powerful prayer.

 

 

 

 

 


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All, Momma, Not Just Some. ALL.

By the sound of crickets here on the blog, you’ve probably speculated that my life is either full and busy or it has collapsed once again.

It’s actually been a mix of both.

I kept intending to write, filling the Moleskin journal in my purse with idea after idea, but I was “too busy” to pour my heart out in a post.  Every mom in America can relate to my simplest excuse; it was the beginning of a new school year.  The back-to-school list, especially for five kids –three moving into new places in three different college towns –would have overwhelmed a healthy mom, let alone me.

On top of this, I was offered the volunteer position of Learning Support Specialist at my daughters’ school.  My giddiness was uncontainable.  I miss my high school English students, the content, and my colleagues terribly, so I viewed this opportunity as an olive branch from God.  I am not, and probably never will be, able to work full-time.  I just don’t have the stamina, but this, this idea, felt doable.  In fact, it felt perfect.  All the best aspects of my old job wrapped into this one, tied with a glistening green and gold St. Pat’s bow:  the writing process, literature circles, newspaper class, grant writing, web administrator, public relations.  This particular olive branch was custom-cut for me.

Volunteering at my daughters’ school proved refreshing in so many ways.  Transitioning from high school students who are sooooo over this whole learning thing to bright-eyed children hanging on your every word is restorative in itself.  But add to that, the women I get to work with??  Oh my, sent from God himself to lift me up and remind me that I still have purpose, even if it isn’t in the life I’d imagined.  This team of teachers is unlike any I’ve ever encountered.  They take genuine pride in one another’s successes; there is no jealousy when one receives special recognition.  They talk about their kids as if they truly are their kids, and whether they had the student three years ago or today, they are just as proud or worried or humored by him.  These beautiful women welcomed me with open arms, and poured their love and prayers and light into me from Day One.

To put their goodness in perspective, above the school copier is a little sign that says something like “Have a minute while waiting for copies?  Say a prayer for our students.”

Yeah, it’s just a good place to be.

By the end of the first week though, my husband feared I was doing too much.  Instead of volunteering seven hours like we’d intended, I found myself spending 20-25 hours a week at school simply because I enjoyed it so much.  Surrounded by intense love and hugged each time one of my daughters saw me in the hallway, St. Patrick School felt like a place of healing.  How could that be wrong?  Still, I promised to slow down and observe my body’s signals.

I had three beautiful weeks. But, momma, you know how that goes, too. We are on top of it all that first week, right? Clothes laid out and lunches packed the night before, hair in the latest Pinterest braid with just the right bow, healthy family dinners and no-rush homework time, lots of conversation before our nightly bedtime story.  We got this.

Until we don’t.  We fall off the wagon.  Did I sign her planner yesterday?  I haven’t had the energy to go to the grocery story, you’ll have to eat hot lunch.  You need your library book today?? Seriously, you have to recreate a 3D saint this weekend, and you are just telling me about it?? Yep, those first few weeks of school lull us into a false sense of security.

Then my body crashed.  I knew I was failing at the whole balance thing, so I desperately tried to rest, but it was too late.  The Lyme spirochetes woke once again, and since my brain was the most active part of my body, they plunged right in and started having a party.  One weekend I’d spent an entire afternoon with my three-month-old granddaughter and the next evening having dinner with my in-laws who live four hours away.  On Monday, while talking to my mom on the phone, I lamented how long it had been since I’d seen my sweet grandbaby.  She said, “Jen, you just saw her Saturday!”  I argued with her.  I thought she’d lost her mind.  I hadn’t seen Hensley in two weeks.  Then I looked at the photos on my phone.  Hen.  Hen.  Me and Hen.  Hen and the girls.  Hen.  John’s parents.  Puppies.  People picking out their puppy.  Me and the puppy.

I had absolutely no memory of the entire weekend.  This shook me to my core.  I know my body is unreliable, but now my mind?  What if I lose my memories, too?  How could I just completely lose a full block of my life??  A wonderful block of time at that?  I called my doctor immediately, explained the situation, and began a six-week round of IV and oral antibiotic treatment that very day.  Neurological Lyme symptoms are serious and terrifying.

So my life hit pause yet again.  A tremendous headache settled in, and I spent about 22 hours a day lying flat to ease the pain.  I actually had so much pain that after three straight weeks of it, I willingly allowed my doctor to schedule a lumbar puncture to drain some of the excess spinal fluid.  I had double the normal pressure, and within a couple hours, my headache was gone.  A few days later, it started to return, so I once again returned to lying flat to ease the pressure.

With everyone at school and work, the days became long again.  I struggled with vision and facial palsy on my right side, which compromised reading or blogging.  Television was just hurtful noise.  I would lie in bed and in the quiet wonder, “God, what do you want from me??”  I thought I was doing His will.  I had shed my old life and was learning to embrace this new one He had shaped for me, so why was I still being punished?  Why wouldn’t He just let me live this new life?  “Lord,” I cried, “what do you want from me?”

The highlight of every day is when my daughters would come running into my bedroom after school.  Full of life and light, they tell me all about their day.  They snuggle in beside me, and I laugh at their stories.  One evening 11-year-old Gracie said, “I learned a new Bible verse today, Momma, and it’s so perfect for us.”

“I can do all things through Christ who strengthens me.” — Philippians 4:13

I smiled at her fresh, hopeful face.  I could tell she believed I was hearing this scripture for the first time.  What she said next though took my breath away.  “It says ALL things, Mom, not SOME.  ALL. We can get through Lyme disease because God will give us the strength to do it.  We just have to ask.”

Sometimes I forget that God might be using my situation to change someone else.  As my girls and I held hands and bowed our heads, my purpose became clear.  Gracie prayed for God to give us strength and to get us through this, and I cried and cried because God had already listened.  My little beauty has strength and wisdom and empathy beyond her years because of my journey with Lyme disease.  Her faith in her God is unwavering.

Could anything more important, more beautiful come from this disease?  A parent’s job is to raise a good citizen, someone who will contribute positively to our society and who will put God first in her life.  Every part of my physical body still hurt, but my heart was full of a joy no pain could touch.  How narcissistic was I to assume my purpose is always about me?

Sometimes as we are doing this whole parenting thing, we wonder if our children are getting it, you know?  Are they seeing what we’re trying to model?  Are they hearing our words?  Are they paying attention?

I would cherish the ability to play soccer in the yard with my kids or to be well enough to travel to my son’s away football games, but it’s okay that I can’t because my purpose is so much more important than my physical presence.  Gracie is paying attention.

Now I am, too.

XO!
Jena

P.S. I painted this sign for her room to remind her she can do ALL things, not just some.

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Get Ticked Off –Part 4: Be Strong

This is the final article in a four-part series on tick safety and Lyme disease. Read the first article “Be Aware” here, the second “Be Proactive” here, and the third “Be Reactive” here.

It’s been over a month since I posted, which is just embarrassing, especially considering I was in the middle of writing this important series.  However, the hiatus actually illustrates one of my key points better than I could have with words.

You see, over the last 36 days, I have been snuggling my now 38-day-old granddaughter.  There is no coincidence in those similar numbers.  She and her parents resided with us until just a week ago, and I was blessed to capture an intimacy few grandparents experience.  Unlike the exhausted new mommy and daddy, I was able to relish those late night cries.

There’s something about a newborn’s cry, isn’t there?  Knowing a diaper change or a little breastmilk is all that wailing child needs allows you to smile at her end-of-the-world, woe’s-me sobbing.  Our Hensley’s little tantrums are particularly unique.  She cries out like every newborn, but when she inhales, if she’s really letting the world know she’s dissatisfied, she makes this squeak, just like a puppy chew toy.  Truly, she’s a little squeaker.

IMG_6444Maybe this is just the way all new grandmothers are –so completely in love that even the grandchild’s crying feels cute, her neck smells delicious, and those blue eyes….oh my, I can’t find the words.

But I’ve done more than snuggle our little squeaker.

My girls and I initiated a 100-Book Reading Challenge, convincing about twenty other local families to commit to each reading 100 books as a family by the end of summer.  We meet every couple weeks at the park to exchange books and chat about our favorites.  Currently, the girls and I are on book number 64.

I repainted one of the bedrooms, preparing it for the return of my son and his then pregnant girlfriend.  When his little family moved out, I repainted the excessively large living room in their new apartment.  Now I’m working on redecorating their bedroom for my Pinterest-loving eleven-year-old.  Can you picture the gallery wall and DIY projects??

Every Wednesday we attend KinderGym, where Izzi flips and ta-da’s and gets my undivided attention.

My husband and I traveled to Virginia to celebrate a good friend’s 50th birthday by floating down the North Fork of the Shenandoah River, which we were told would be pleasant two-hour adventure.  Eight hours later, just as the sun dipped over the horizon, we finally arrived at our vehicles, ready for hot showers and pain medicine.

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There have been cook-outs and swimming, birthday parties and late night campfires, a crazy cat story and a litter of twelve puppies.  (More on that in a future post!)

The first weeks of July we spent five days and our wedding anniversary on our annual camping trip in Smoke Hole, WV.  This was the scene of the crime, the place where I was bitten by a deer tick and originally infected with Lyme disease two years ago, though I wouldn’t know it for months.  My family and about forty other campers set up our tents and canopies, then beat the heat by kayaking and floating down the South Branch of the Potomac River.  We ate deep fried everything, from fish to Twinkies, and sat around the campfire, laughing and telling stories.

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This has been my last few weeks.  I have been living life, something I could not have dreamed of two years ago.  After rounds and rounds of IV and oral medication, homeopathic treatments, dietary changes, acupuncture, massage therapy, blood oxygenation injections, and so much more, I am finally an active participant in my life again.

It can happen.

If you are a Lyme warrior, it can happen for you, too.

There were times along this journey I wasn’t sure if I would make it.  There were moments I was ready to give up.  The chronic pain affected every aspect of my life, including my cognitive processing.  I couldn’t imagine spending the rest of my life in that condition.  Though my family never complained, I felt like an incredible burden, requiring so much time and money just to survive.  Often I wondered if they’d be better off without me. The guilt was as heavy as the symptoms.

Thank God I hung on.

This illustrates my final advice in this series.  Be strong.  Keep fighting.  There is always hope.

Like me, you CAN get better.  

With Lyme disease, especially chronic or post-treatment Lyme, there is a tremendous lack of research and knowledge.  There are oodles of treatment options out there, but not one tried-and-true cure.  Because Lyme attacks our immune system, each person responds to the illness and, therefore, the treatments differently.  What worked for me may not work for you.  Lyme warriors, while typically fighting heavy brain fog and cognitive deficiencies, are forced to research the options and try treatment after treatment until something starts working.  Often the medical community is unequipped to properly advise us, so healing requires our own brain power, physical might, and, for me, spiritual strength.

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A strong support system is essential, especially if the Lyme warrior is straining to think, to comprehend what she is reading, to remember appointments.  I have been lucky in this department.  My husband was my everything, supporting every decision I made, every treatment I chose to chase.

So much support allowed me to be strong.

To keep fighting.

To believe there was hope.

You must trust that eventually something will start working and you will slowly return to life.  For me, there was a lot of trial and error, reading and researching, pain and tears.  But now I know what to do when I feel like I’m relapsing.  I wear a pain patch constantly, and it has been an absolute game-changer.  I know how to handle a seizure so as not to get hurt, but even more importantly, I know to get enough rest and to remove as much stress as possible to ward off seizures completely.  I listen to my body, and I try not to feel guilty when I have to lie down in the middle of the day.  I know I am not being lazy; I am recovering.

I remind myself to be strong.

To keep fighting.

To believe there is hope.

I know not to to overplan my week, to leave a couple days open for rest.  I know to avoid sugar, gluten and dairy because I will regret it later if I don’t.  I know nothing tastes as good as healthy feels.  There are activities I did before Lyme, like jogging and teaching full-time, that I’ve surrendered.  But even if this is as good as it gets, I am okay with it.  Life is full and wonderful, and in some ways, even better than my pre-Lyme life.

I am strong.

I keep fighting.

Because there is always hope.

There is life after Lyme.  It’s a different life.  That’s for sure.  But it doesn’t necessarily have to be a lesser one.  My experiences allow me to see everything differently.  I am more grateful, more aware, more empathic.  I am now able to see the good that came from this ugly disease, and I subsequently know it’s worth it.

For the first time in my life, I wouldn’t change my wedding day, tick and all.

Unfortunately, I’m sure there are readers who are thinking I’m lying or I’ve completely lost it.  Or you’re thinking I must not have been as sick as you are.  I promise.  I’m sane, truthful and chronically ill, but I am also active, content and managing my symptoms.

You may be in trenches, unable to see beyond the ugliness.  I’ve been there to.  I watched interviews with people who had Lyme disease and scoffed when they professed to appreciate their disease.  I read books and articles, hoping to find the answer, only to finish them disappointed.  I spoke with individuals who had beaten Lyme, but I couldn’t see myself getting to that point.  As long as I saw myself as sick, I stayed that way.  Once I was able to begin seeing some hope, I fought even harder and eventually attained wellness.

Be strong.

Keep fighting.

There is hope.

You can get life back.  It may not be your old life; however, believe it or not, it might be an even better life than you could imagine.  It’s critical that you have faith in this.

I know where I am right now is temporary.  I have a chronic illness, and by sheer definition, it’s not something from which I will ever be completely free. There will be relapses and flares.  There will be more pain and sickness.  But I’ve learned to live in the now, and right now, I am in remission.  I am not perfectly healthy.  There’s still pain and stiffness, but it’s tolerable.  I have been able to enjoy our summer, checking off our summer bucket list, making memories with my family.

These memories will help me get through the next relapse.

I will be strong.

I will keep fighting.

After all, when I hold my newborn granddaughter in my arms, I know there is hope.

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