Tuesday, April 15, 2014

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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Sunday, April 13, 2014

One Love

For my Lobster, my One Love.  Together we can move mountains.

The song that so defines us must be shared. . .

Click on the link below to watch my tribute to the love of my life.

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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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Wednesday, March 19, 2014

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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Wednesday, March 5, 2014

Wordless Wednesday





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Monday, February 3, 2014

Nothing Wasted


Last week while tucking my youngest into his crib at night,  I whispered a prayer over him as I snuggled him into his blankets.  It struck me later that my last sentence was not something I had prayed over my other babies.   It was a prayer that came from a place of sorrow that has become integrated into my life as a painful part of a healthy whole...

     I prayed that I would get to see him grow old. That prayer that came from a place of knowing that nothing in life is sure,  and from a scar of feeling the gash of that loss.

There are many areas of my life that have been touched and changed by the loss of my precious 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 has 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 since we had lost Ellie, and we wereempty,  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. Week after week I would find an excuse to snuggle him into my empty arms 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.

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. Candy and Dean were told their baby, another boy, had Trisomy 13,  missing many necessary functions for life, and would never 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 steadfast assurance if I were in her shoes.

This was the first time I remember saying thank You for what I have 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 wishfully 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. I anointed Candy's beautiful belly with oil, and prayed for her and this delicate but lively little boy whose life could be felt beneath her skin. We prayed, we cried, we made memories. I helped her think of things she would need to plan a service for him. I implored her to lean in, embrace, and take hold of every remembrance she could, because some day when her belly has melted away, those memories will be all she has left of him.

As the weeks grew longer, Beau surprised everyone by his determination and strength in 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 wistfully at the thought that maybe, just maybe his parents would get to meet him while he still had breath.

 Despite our hopes, days came when Candy began to feel weary, tired, and sick. Beau slowed down until one morning no more kicks were felt. Ultrasound confirmed his mighty little heart had ceased to beat as he was reunited with his Creator.  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 thankful and humbled when Candy spoke of her comfort in having me take pictures of this bittersweet day; to capture the only photos they would have of their youngest boy. I never hesitated, I knew it was a great honor, and I held dear how priceless the photos are that I have of my little girl.  I was disappointed when I was questioned, when someone even tried to discourage me from going, words burning sharp that I was not ready because I had not dealt with my own grief.  My sweet Rebecca was the one who spoke encouragement to me, knowing well the road of loss, and assuring me of the validity of my grief.

With prayerful reflection and a pounding heart,  I slung my camera over my shoulder and headed for the hospital room where only moments stood between the unknown and the reality of his appearance. The peace that filled the room was Heaven sent. 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 touched many lives. I did not feel regretful or anxious. It didn't  bring me back to my last day with my princess like others had warned. It was an intimate, crushing, priceless, holy snapshot of eternity that I got to witness, as if standing on chosen 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 "God doesn't waste pain?" I hated, hated that someone I love was having to face this tragedy, but I was oh so thankful that God could use my pain, my healing, my hope, to come alongside my friend and help her survive the impossible, just as I have, 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 diagnosed with Trisomy. She wants to minister to other moms by helping to answer their questions and ease some of their anxieties by sharing her experience. Here is a link to Candy's new page: http://candytenpas1.simplesite.com/. Please stop in and read Candy's story in her words, and if you know other families dealing with Trisomy during pregnancy, please point them to Candy; they may find comfort there.

No one asks for pain, but we can be encouraged by knowing it won't be wasted. God can use your story to help others through their own.



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Saturday, October 26, 2013

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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