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Fractured Glass

I promise my life story won’t always be about grief, but that’s the season God has me in right now, and I’m  doing my best to learn from it and move through it.

Bad news is always a bit surreal until it sinks in.  I don’t know if I quite believed my brother had died when Mark told me.

I don’t remember how we got packed, only laying in a daze telling the nurses my IV needed to go faster because I needed to leave for my brother’s funeral.

Then, we were there.  The familiar Kansas plains stretched on in bright sun as if everything was right in the world.  Some part of me expected I would see him, well as ever once we arrived.

  Settled at my mother’s house, he never walked in to spend the evening with us like he usually did.

That’s when I knew what my eyes needed to see.  I set out with my hubs to drive to Ben’s house, needing to be surrounded by everything that reminded me of him.  Maybe this was all a dream and I will walk into his kitchen and see him pouring hot sauce on something, or cleaning silvery meat from a successful day’s fishing trip.

It was night, and his house had a dark stillness to it. All was quiet except the usual cracking of the aged deck beneath our feet.  That’s when my eyes saw it, and my heart started to believe it . . . The bookmarks of the horrible thing that brought us here.

His window smashed by the first rescuers trying to make their way to him, and once inside, the air felt thin, watery, lifeless.  There was no warm assurance that the nightmare was over.

His toil-stained caps that hung waiting  across the dining room, because what bachelor wouldn’t?

The cluttered bookcase where his firefighter books slumped, tattered by his earnest ambition to one day brave the hot flames and quench to victory its fiery talons.  The pulse of his passion for fire now blood-drained, left slouching in frayed pages of blank words.

I knelt at the place where he died, arms spread wide,  an empty embrace held closed-fisted by his absence.

Walking into his bedroom it seemed he had simply hurried off to work, not gone forever.   His sheets and pillow still rumpled from a night’s rest, as he wasn’t expecting visitors.  For a seemingly  unending  clock face of minutes I sat soaking up the essence of him.  Looking at the strips of all that he put his life into.  So many memories, happy, joyous, tender, but still mirrored by a veil of  heartbreak.

The realness my eyes took in was stored to solidify these truths once my heart is able.  For now it has been too much.  The pictures, the music, the seeing him still and breathless rakes too deep a hurt to occupy my emotions.  I scarce can think of it because it hurts so profoundly that fears rises and unease comes crippling to shatter my soul.  There’s just not time for that, I have to be solid for so much more.

There will come a day of facing it head on, of grappling with what’s left and realizing what never will be.  That day I will stand strong and feel all that I feel and not run; let loose the gravel that binds heavy with my sadness.  This day however, I can’t think on the pain, I have to only gratify the knowledge of his current wholeness, and acceptance, and rejoicing as he is no longer weighed down by this world.  I imagine the tenderness with which he scooped up my small daughter and held her close in the city of light, waiting for our homecoming.  My heart longs deeply for that day.

For now, days hammer on, and I still my heart-screams to focus on the ones who need me present.  Soaking up every memory made, thanking for the ordinary amazing graces that soothe the emptiness, and walking, walking stranger-like through this world that is not my home.

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Praying for Rain

“Trust in Him and He will do this.”
Psalm 37:5b

I’m not sure where it comes from, but I am often reminded of a parable of two farmers praying for rain.  The point of the story was that one farmer just prayed for rain, but the other farmer prepared his fields for rain.  He prayed with an expectation that God would give what he was asking for.

Lately our prayer lives have been transforming.  We are hearing from many promises, urging us to be diligent in our prayers, pray specifically, down to the details of what we are asking for, and to pray with expectation in our hearts that we will receive.  That last part is the hardest.  Deep down I want to protect myself, to not get my hopes up so I won’t be let down.  My heart is convicted though. . . pray specifically, and pray with expectation.

I some ways I AM preparing my fields, but I also feel the hesitation in the depths of my faith.  I hold back from telling most people what we are hoping, because I fear having to come back and tell them we were wrong.  Sounds silly when I hear some of the stories of prayers answered, but I am seeking, striving, to be able to give myself wholeheartedly to the expectation of our requests.

Tomorrow is the day we may see into a window of how our prayers will be answered.  The anticipation is light and excited, but not without fear.

Pray with us please, that every day we would increasingly trust He will give us the desires of our hearts, and that this story will develop into one of incredible goodness and faithfulness as we see our expectations come to fulfillment.

We have read again and again of His desire to give us good things, and His prodding to ask and we will receive.  We believe our desires were His desires first, and look forward with anticipation.  

Pray on with us my friends, and watch for good things!

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About Normal

I have faced it.  Challenged it.  Decided to keep living like I wouldn’t let it rob me of my dreams.

I thought I had been throwing myself hard enough to make that happen.

Last week though, there were words that cut.

I had urged the kids that if they diligently and obediently completed their chores and schoolwork, I would take them out for some fun that afternoon.  Obviously, since that was the first time in their lives that they had ever been required to do work or school, I was met with grumbling from one tired heart.

Sitting at the top of the stairs, my presence unknown, I could hear the frustrations being muttered from the next room.  My heart dropped hard as I realized what a deep and wounding disappointment had been planted in the freshness of a young soul

      “I doubt that will happen anyway; we won’t get to do anything special because YOU will probably feel sick again.  You’re ALWAYS sick and hurting, and you never are strong enough to take us anywhere.  You will never be well, because God doesn’t listen to me pray for you to get better.”

My joy fell, and my chest ached at the realization that life, the bitter grating side of it that drowns out all the good, had cast such a choking shadow on the spirit of my little one.  I cried. It was true.  No matter how stubborn my efforts to prove I can carry on as I always have, things are different.  In my determination, I have neglected to see how observant little hearts are, and how attentively they can sense the smallest changes.

That was a low.  I desperately want to cover my weakness, to be the mom my babies need  instead of such a painful disappointment to them.  It  hurts that they don’t understand.  While some of them have come to comprehend that a snuggle on the couch is the new best way to spend time together, others have written me off and stride out to find the attention their hearts need in other places.  It hurts.  I want to be able to do anything for my children. . . to chase them around the house or keep up with them at the park.  They deserve that.

Truth is, I can’t make it all seem right.  I can’t go farther and longer than my body allows, and I am prisoner to the days when I can’t stand.  It is a new challenge to reach tender hearts from the sidelines, and I pray that one day they will see that although the dynamics of our lives change, my love for them and my prayers for them have stayed the same.  They are my reasons, my inspiration, and my greatest joy. NOTHING can ever change that.

ABOUT NORMAL
Right now,
I don’t know what Normal is
Anymore.
That’s because Normal has been changing
So much,
So often,
Lately.
For a long while of lately.
I’d like Normal to be
Okayness.
Good health. . .
Emotional health,
Medical health, 
Spiritual health.
I’d like Normal to be
Like that.
I’d like Normal to stay,
Like that.
For now though,
I know that Normal won’t be normal
For a little while. . .
But somehow,
Sometime,
Even if things are not Normal,
They’ll be okay.
That’s because I believe
In the great scheme of things,
And life.
~Mattie J.T. Stepanek (my 13 year old hero)

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Give up my Hope?

                                                     

                                                Those of you close to my story know the last few weeks have been very painful.  I have never thought life needs to be perfect to be wonderful, but there are some times the pain is so heavy, so deep, every breath takes effort.
 
Disheartened, worn, clinging by strings of faith, it took a quiet sunless drive for me to cry out aloud for mercy. Convictions of where I could improve tapped at my heart, and my immense desire to live a legacy worth remembering pulled at the weight of my soul.

That was the night I cried for presence.  At the very desperation of clinging to hope, I needed to know that there was indeed a reason for this suffering, a purpose in the raw scraping of my heart, a confidence that yes, God is real and giving Him my all and enduring the wait of healing was what He really desired for me.  I begged aloud that I would see a sign that would give me the push to keep on in this blind and treacherous marathon to store up my treasures in Heaven.  I felt like I was losing, being mocked at my attempts.  I longed to know there was purpose for all this pain.

Two days later, things came crashing down again.  The deeper I dug, the more trials clawed at our foundation.  Our dreams of adding to our family collapsed.  Our marriage pulled thin.  There was disharmony in our children, and another joy-shattering loss slammed us in the chest.

My white flag flew. Tears burned hot scars of defeat across my face and my soul.

In the midst of my deep dispair, there was my man smiling and turning my eyes up.

    “Don’t you see?” “This IS the answer!”

His voice so gentle, heart so pure, spoke of how our strength is a threat. A powerful threat to the darkness that thirsts to destroy us.  The closer we walk, the faster the punches come, trying to end us.

At first, this seemed motivation to throw up my hands, give up my hope.  I would be lying if I said those thoughts were not seriously entertained in my mind.  In the end though, I had to admit I’m a fighter, and for a reason that good to fight, I’m going to remain gloved-up.  The heartache is painful, the blows discouraging, but with my mighty soulmate and the ever-cheering teammates beside us, it is a race worth running.

I have come to know life is filled with pain, but it is making the joys even more worth celebrating.

I’m sure there will be more days of being face-down, but I am thankful and blessed that my loves and my friendlies will always be willing to pick me back up and point me back on my way.


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Benjamin, death

The Pain of Searing Loss

Heavy, medicated sleep, my body weak and tender but I am awakened.  My husband’s worried face looks long and pained through the smears of my blurry eyes.  ” I need to tell you something,” he says,   “and it’s not good, it’s going to be very hard for you.”  My first imaginings were nowhere near as horrible as the next sentence which sliced the air, my heart.

Benjamin?  No.
My nearest brother. This can’t be.
 28 years young, never a girlfriend, a dream job, a wife. No first-born, no travels, no wrinkles from life.  My ears hear you’re gone now, slipped out while you slept, but my mind can’t yet comprehend.

I wanted to jump up and drive and drive ’till I got to you, to see you and touch you and say it’s not true. I got up to try and my body kept failing, the pain and the retching they sneered at my grieving and gave me more mountains to climb. I lay at the doctor with needles and tubing and scoffed in my mind when they said “this will help you, will give you more time.” Nothing you give me can heal me or soothe me, just hurry this up, for my family, they need me.

Trying again to gather my strength, I gathered and folded and dug through the shoes to take us to Kansas to tell my brother goodbye.  Again though the thorn in my flesh was too much and instead I melted, exhausted and tearful while my gracious best Buddy stepped in. With grace and with kindness he put us together and packed us in tight to begin the hardest of journeys.

I try to sleep, but my dreams are only replays of my reality. My belly that would not be coaxed to eat even before the news is cemented in emptiness, or is it just pain?

My brother, my Ben, you’ve left me so broken, my memories now swaddled in grief. Grief. Again. My familiar companion, and still I have not figured the balm that would soothe such a terrible wound.

There were plans we had, remember? For when you were going to move to Colorado and be near me again.  I was to be your Paramedic, and you my partner, saving lives together; swapping stories and jokes that no one else understands. We were going to introduce you to all our fine ladies that one day you might find your true love. You were the sibling I first shared a beer with, and the only one that could use a few swear words back at me. You were the one I so ferociously protected, that no one would make an ill comment or hurt your innocent heart. The day you called and asked me how to become an EMT, my heart swelled. It swelled so big with my pride for you, for my sweet little brother following my footsteps.

I watched you, both proud and so saddened as you fiercely chased your dream to become a firefighter, and kept going past every closed door. I knew in my heart they never could take you, the seizures were too much a risk, but I never could tell you because I didn’t want to be one more person that crushed your dream. I admired your determination, and secretly wished I could beg of those chiefs to please make you some kind of job. I knew you’d be happy just to be “in,” wearing that Maltese cross. I smiled each time you would text me or call me to share of a wild night’s calls.  I giggled at your “green-ness” but knew it didn’t matter, ’cause you were over the moon.

I have searched for more, to learn of this Heaven, and what it is like where you are.  The comfort is twofold, as I know that your last night you closed your eyes to sleep, that you opened them to the most amazing, indescribable place, and your niece, my Ellie, she welcomed you there and you both will welcome me home.

Today I will see all those other sad faces as we prepare to celebrate you. I won’t know what to say, I won’t know what to do, but sit in the heavy of grieving for you.

Benjamin William Leake July 2, 1985-March 16, 2014


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birth, Infant loss, Trisomy, Trisomy 13

Nothing Wasted

Last week while tucking my youngest into his crib I whispered a prayer over him in the darkness. It struck me later that the last sentence I prayed was not something I had prayed over my other babies.   It was a prayer that came from a place of knowing more than I’d ever known before. I prayed that I would get to see him grow old. That prayer came from intimately knowing that nothing in life is promised; a fresh scar from the gash of that loss.

There are many areas of my life that have been touched and changed by the loss of my daughter; areas that aren’t defined by what happened to me, but by what has happened -in-me. One of the most poignant events that reflected this was something I got to do for a dear friend of mine.

I met Candy and Dean and their 5 darling children when some friends of ours invited us to join them and a few other families every week at their home.  It was only a few short months after we had lost Ellie, and we were empty; hungry for  support, and needing friends who had the strength to help us through the difficult road ahead.  Candy warmed my heart immediately with her outgoing friendliness, her frequent smile, and her hilarious story telling. At the time, her youngest was a baby, and unlike other babes, he was content to let anyone hold him, without squirming or fussing to be handed back. Every time we met I would find an excuse to snuggle him in and feel the warmth of his baby softness heavy against my chest as we sang into the night. His sweet smile and puppy dog eyes warmed my wounded heart and empty arms.

As the next few years crept by and other hardships surfaced in our lives, Candy was quick to offer help, bringing meals and offering sweet encouragement and prayers.  She is a bright example of a compassionate and selfless soul.

This past summer, Candy announced that they were unexpectedly expecting a sixth member of their precious brood of little ones.  Although surprising, the anticipation of this new life was met with excitement and joy.

20 weeks in, it was time for the ultrasound to make sure all was going well with the baby’s development, and for Candy, a secret chance to sneak at peek at the gender that everyone else would have to wait for.  Instead of that eagerly anticipated black and white beauty of baby’s first photo, a heavy cloud of fear and sadness crept in. Candy and Dean were told their baby, another boy, had Trisomy 13; he was missing many necessary functions for life, and would never be able to live outside of the womb.

It was a heartbreaking, breathtaking reality. One that no one really knew how to face, but Candy and her family would have to.

I remember contemplating again that phenomenon of joy and pain coexisting. I listened to Candy express the JOY she felt while feeling his kicks and wiggles, and I witnessed her tears as each day brought her closer to a painful goodbye.  I wondered how torturous it must feel to know for so many weeks that the day was coming, so different than the unexpected whirlwind loss I have known. I watched Candy’s strength as she chose to embrace every happiness she could of knowing he was still with her, and I doubted I could show such bravery if I were in her shoes.

This was the first time I remember thanking Jesus for what I had been through. Not thank you that Ellianna died, but thank you that because of it I could reach out to Candy in a way I never would have known how before. I know how desperately I long for others to acknowledge my daughter’s life; to say her name, to not ignore that she was here for four and a half glorious months. So I listened carefully to the importance behind his chosen name, Beau Emmanuel. I prayed for a miracle, and I prayed for grace if that miracle didn’t come in the way we hoped. I anointed Candy’s beautiful belly with oil, and prayed for her and this delicate but lively little boy whose life could be seen and felt beneath her skin.

We prayed, we cried, we made memories. I helped her think of things she would need to plan a memorial service for him, and made keepsakes to have small daily reminders of his presence in their home. I implored her to lean in, embrace, and take hold of every remembrance she could, because some day when her belly had melted away, those memories would be the best of what she had left.

As the week count grew longer Beau surprised everyone by his determination and strength; he was holding on and fighting for day after day safe in his mommy’s womb. We wondered if he would make it all the way through after all. We smiled longingly at the thought that maybe, just maybe his parents would get to meet him while he still had breath in his lungs.

Despite our hopes, days came when Candy began to feel weary, tired, and sick. Beau’s movements slowed down until one morning his strong kicks had faded to stillness. Ultrasound confirmed his mighty little heart had ceased to beat. It was such heartbreaking news even after the long anticipation. It sank like rocks.  Again my mind marveled at Candy’s fortitude as she bravely and calmly faced the strenuous labor that would bear a newborn without a cry.

I was honored and humbled when Candy asked me to be present at his birth and capture his moments in photos; the only photos they would have of their youngest boy. I never hesitated; I knew it was a great responsibility, as I hold dear the photos I have of my own baby girl.

The day came, and with prayerful reflection and a pounding heart I slung my camera over my shoulder and headed for the hospital where only moments stood between the unknown and the reality of his appearance. It seemed so unnatural to behold the absolute quiet of a birthing room that usually was filled with the sounds of new life and great joy.

There was an intense peace that filled the room that could only have come from the hands of God. Candy’s gentle brokenness flowed down her cheeks as Dean stood near, beholding the beautiful, yet lifeless bundle of their son, Beau Emmanuel.

The next few hours were heavy and sweet as I clicked away, capturing these moments of hello and goodbye. Dean and Candy absorbed every detail and feature of their newborn as they helped wash, dress, and finally snuggle and kiss this little person who had already captured their hearts. It was an intimate, crushing, priceless, holy snapshot of eternity that I got to witness, as if standing on holy ground. It blessed me to try to give something, anything to another mama reaching for something to cling to in the life-shaking aftermath of losing a child, and how sweet for me to get to love on him and kiss his beautiful little cheeks.

Remember how I’ve said God doesn’t waste pain?  I hated, hated that someone I love was having to face this tragedy, but I was so grateful that God would use my pain, my healing, my hope, to come alongside my friend and help her survive the impossible just like I am; one day at a time.

Only days after Beau’s memorial service, Candy came to me looking for an outlet to share her story. This brave and compassionate woman already knows that she wants to help other moms going through what she is. Candy expressed how hard it was to have so many questions and unknowns about being pregnant with a baby with an unsurvivable diagnosis. She wants to minister to other moms by sharing her experience.

Here is a link to Candy’s new page: Click Here. Please stop in and read Candy’s story in her own words, and if you know other families dealing with a life-altering prognosis during pregnancy, please point them to her as well; they will surely find comfort and strength in her and her story.

                

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Give It Up: Losing Control

Those who know me well agree that I like order.  I’m not a big fan of surprises, I like to know what’s coming, and have predictable, straight lines.  If I’m going to be “spontaneous,”  it had better be written on my check off list for the day.

I find that my need for control has only grown since burying my daughter. I hunger for the peace of mind that I have done everything possible to protect my loved ones from whatever complications the day could present.

Life is not conforming to my plan.

Maybe that’s the point… to let go.

But I don’t like it.

Recently,  I missed work for the first time because of my disease.  It was humbling and  frightening. I have fought hard.  I have trudged to dozens of appointments, complied with every treatment, pushed through days of pain and not wanting to get out of bed, all with the desperate hope that I can control this instead of it

controlling me. But this day came that no matter how hard I pushed, I couldn’t do it; I literally could not walk down the stairs that day.

Mark had faithfully tended to me through the night, bringing my medicine, quietly letting me squeeze the circulation from his hand through the pain, and offering words of comfort and encouragement when I didn’t want to breathe through another minute.  I was at the mercy of my body and my sickness, and it terrified me.

My family has been weathering my storm with such grace.  My husband has never complained when he has worked all day and then come home to clean and cook and tend to the kids so I can rest.  He has never uttered an ill word about accompanying me to all my appointments, or missing an opportunity to go out when I needed someone to sit next to me while I slept.  My sweet children have quietly understood when we have missed special outings because mommy wasn’t up to it.

 They have cried with me, snuggled up beside me, and whispered earnest prayers for healing.  I will never forget the disappointed sweetness on Jacob’s face when we were supposed to go out on a Mommy/Son date and I felt terrible that day.  Trying to hide his discouragement, he said, “that’s OK

Mommy, how about we snuggle on the couch together and watch a movie instead so you can rest.”

 Always a tender heart

I want to call a time out… I want to shout that I have already done my “tough.”  I want my “get out of jail free” card.  I know that sounds so selfish… but I’m scared, and I’m worn, and I don’t want my husband and my kids to have to bear the burden of fear again.

I am struggling to accept that the things I imagined for my future are being reshaped by this new normal.  Right now I am fighting with letting go. It is a hard battle, one that in reality probably every person struggles with in some way.

People try to give comfort by saying “God won’t give you more than you can handle.”  Have you heard it? Have you asked where He said that?  He didn’t.  So maybe when I reach the point of being burdened beyond my strength, when I am empty and have nothing left, when I reach the point of giving up…maybe that’s when His strength will be seen in me.

I am terrified to get to that point… but I am thankful beyond words for my faithful team that is here to walk through it with me.

“Wait on the Lord; be of good courage, and He shall strengthen your heart.” 
                                                                                      Psalm 27:14

He will strengthen my heart!! YOUR heart!!  What a powerful promise; one I will be clinging tight to as I learn to loosen my grip on the things I can not control.

Time for more patient waiting, and less kicking and screaming.  Oh boy. That’s not my strong suit. Please pray me through it, and my poor family and friends who have to put up with me along the way.

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Perspective

Last week I tried to be normal.  I insisted hair be combed and clothes be matching, and made sure smiles were pasted on, so as to not make anyone uncomfortable.  I tucked in the ragged edges of my soul and leaped high over my protective wall to face the picture perfect world that I have scowled at for so long… and I landed with a thud.   No matter what face I put on, the truth is something on the inside has changed, and that is why I just don’t fit in.

But that was the day I also realized I really don’t want to.

These days instead of boasting coordinating shoes and hair ribbons, it is an achievement for my children to make it through the day without breaking down sobbing.  Instead of performance in school or sports, it is a joy when they sneak out of bed for “one more hug and kiss.”  It is an accomplishment  to get up and make them breakfast instead of staying curled up in a ball under my covers.

My little people are my life, and I don’t ever want to take one moment with them for granted.

There came a day  when it stopped mattering if pigtails were lopsided and if I ended up sharing my bed with three sets of sharp elbows by morning… because it matters more that I am still getting to experience these moments, no matter how imperfect.

Everything feels so shallow, so trivial compared to the depth of missing a life instead of a milestone.  With my youngest, now those milestones are miracles no matter what age they may come. With each adorable new outfit he grows into, I am thinking about a lonely stack of unworn clothes tucked away in a closet stacked with memories.  That is the new normal.

I decided not to fit in.  I would rather wear my raw heart on my sleeve and scare away the shallow-minded, than become a facade playing pretend in real life.  I want my children to remember that I cherished their winter-boot-summer-dress style, cheered at whatever age they reached a new goal, and accepted them whether they had a smiling-skidding-through-the-house-in-socks-day, or a hide-under-the-covers-cry-cause-I-miss-my-sister day.

I want them to know it’s ok to be real, because it’s too hard to pretend… that they don’t have to act like everything is ok, when they feel like the world is crumbling.

If I have learned anything from these past few years, it is that no moment should be taken for granted.  I hope I can instill in my children to cherish the things that are eternal.

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