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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The Sting

Letting my sweet baby boy suck some icing off my finger this week, I got bitten by the edgy rough of a very first tooth.  My heart swelled with joy at this next new milestone and the thought of the new discoveries it will bring... and then just as fast, my heart throbbed, bleeding from shards of guilt at enjoying this moment.  A milestone I never got to see... and it felt like I replaced it, and it didn't seem fair.

So many moments, stolen by the sharp sting of the real.

Death, where is your sting after all?

The sting is when the muscles of my arms remember what it felt like to hold her.

The sting is when I see a little girl her age running around with pigtails bouncing behind her.

The sting is when I dream of holding her and kissing her cheeks, only to wake up to realize she is not here.

The sting is when no one mentions her anymore, and the only time I see her is on the background of my phone.

The sting is when I look at a picture of her and her features seem unfamiliar because it has been too long.

The sting is when I see the beautiful green I chose for a bedroom she doesn't sleep in anymore.

The sting is everywhere, and it is just as hot and sharp every time.

I am ready; ready for the sting to be soothed and the moments to be sweetly savored.  For joys to be embraced, never stolen.

Until that day my hope holds on, though by a string.

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Coming soon... Losing Control: The battle I am facing

The Ugly

This week was not pretty.  Rather, the way I acted was not pretty.

I threw an all-out "inner" foot stomping, arm crossing temper tantrum.

This was supposed to be the week that began the uphill climb.  For the past three months, that day was my target, keeping me looking past the muck and focused on a goal.

That day did not go exactly how I had planned.  Well, not AT ALL how I had planned, so I took my hope and my patience, put them on a shelf, and embraced a frustrated rebellion.  I will spare you the picturesque details... it was bad and ugly.

I apologize to those of you who asked how I was doing and got more than you bargained for.  I am also sorry for those of you that wanted to pray and got held back at arm's length.  I am embarrassed at the despair my husband and my children witnessed, and also so humbled at the way they stood close and waited for me.  I am married to one of the most gracious, steadfast, patient men on the planet.  I truly do not deserve.

And that is not even my REAL pouty face... thank goodness no one took a picture of that...

My turning point came through the words of my wise friend, Matthew.  It came from a simple verse I have heard many times, but I guess never really let it sink deep.  That night it sank, and it sliced.

"In this world you will have trouble, but take heart; He has overcome the world."

He spoke of how our time here is such a tiny glimpse in the picture of eternity... how our troublesome days are nothing compared to the number of days we will spend in perfect joy.

Duh.

I felt silly for having missed that.  I do not like to be uncomfortable, so I bargain constantly!  "Ok God, I got through that hard season, now you owe me a smoother one."  That evening I realized, maybe this all is the hard season... we were never promised it would be easy.

As I chewed on this through the evening, my temper tantrum ended.  I need to stop trying to cram this twisted world into a shape it will never fit.  I need to accept whatever I have to walk through, and only then, I realize, will I be able to truly say I found joy in the midst of suffering.

Please forgive me if I hurt you this week.

I won't apologize for the things I said, because they were truth... coming from the pits of a dark and very real desperation... but I will apologize for not saying it more gracefully, or being willing to  listen past my own screaming.

At least next time you can point me back to this post and help me remember that I didn't get anywhere stomping the hole deeper.

I am ever grateful for each of you that journeys with me... in my joy and in my sorrow.  Someday I hope you get to see the story He is writing in me.

My Love brought me my favorite flowers in the best color to lift my spirits...

On that note.... a new week is beginning.  I am embracing it; the good, the bad, and the ugly... what about you?

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Half Empty

My "glass half-full" husband has always sighed at my "glass half-empty" attitude, while I try to persuade him I am simply being a realist.  Lately the level in my cup has dropped dangerously low.  I have cried with my kids when I am too weak to get them out of the house and thrown temper tantrums in my mind when I glare at the handful of medications I have become reliant on.

While my loving husband has tried to focus me on the next appointment and the hope of relief ahead, I have buried my head beneath the fear of the future where my wandering thoughts take me. The enemy has been hard at work planting thoughts of despair and defeat.

The past few months have been hard; each day feeling like a mountain I don't have the strength to climb. I have let my anger grow at the thought of the struggle ahead, wishing instead for a break from these refining fires.  I have begged for mercy, screamed to know when enough is enough.

As I battled the weight of discouragement that lays heavy, and pondered the suggestions of misunderstanding friends that assume God is singling us out, I heard the simple and hope-restoring answer to my desperate pleas.

Right now we can not understand the pain that we have walked through, or the fear that we are facing ahead... but there is a platform being built beneath us. A platform that the Mitchell family will stand on and share an incredible story of hope and redemption.  The valleys that we are walking are giving us a story that will be able to reach the hearts of many.  We will be able to offer hope to those in despair, not with empty words, but because we have walked through the fire.  What  an incredible promise.

This doesn't erase my fears for the future, the questions about what will be left of me and how it will affect my husband and my children, but it gives me a thread to cling to; a promise that our scars are not for nothing.

I had to share that, because I want you to watch it happen. Doesn't mean it will be pretty... there is going to be a lot of yuck in the process, but stay tuned for the beautiful ending, and please pray us through the here and now.

Pray for Mark that he would have people in his life that can encourage and fill him, especially on the days when he feels helpless with a wife who has nothing left to give.  Pray for our children that peace would be spoken to their fear.  That they would grow with the changes instead of becoming bitter at the new "normal."  Pray for me that I would not allow my discouragement to make me hard.  That I would be able to embrace the small triumphs instead of focusing on the big disappointments, and that I would have the strength and determination to fight instead of allowing my joy to be stolen.  Pray for our story... that it would be a beautiful reflection of why we made it through, and Who sustained us in the battle.

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Celebration of Life

 I always find myself up late the night before one of the kids' birthdays, blowing up balloons, curling ribbons, putting finishing touches on whatever cake they have challenged me with, laying out the cutest outfit to showcase their cuteness on a day that is all about them.  A celebration of life to reflect on the milestones of the year passed, the anticipations of the year ahead, and if the cake was a flop, at least there is always next year.

This night two years ago, I was up late preparing for a different celebration of life.  Instead of balloons, we had shopped for flowers, choosing bright hues of purple that would sprawl across a tiny casket.  I had stood in the middle of Babies R Us while people stared, tears pouring down my face when I couldn't find tights little enough to match a dress fit for a little princess.  Instead of finding the right sentiment on a card, we had had searched for the right words that would be etched forever when we visited her headstone.  All of these little details enormously important in the way we wanted our little girl to be remembered; because this day would only happen once.

Two years ago I sat surrounded by my most precious friends and family and soaked in every carefully chosen song and word as those closest to us helped us honor and remember every priceless day we shared with Ellianna before we had to close the chapter of her life here.

With aching hearts we closed the lid together and escorted her to the beautiful grounds where she would forever be remembered while we wait to see her again.

A breathtakingly painful day, but also a day of such tenderness and love, just fitting for how we wanted everyone to remember our little girl.

"He who began a good work in you will carry it on to completion, until the day of Christ Jesus."

Philippians 1:6

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BE, don't GO

As we have been visiting for a church to call home, we have been looking to be challenged, encouraged, pushed to seek, and embraced by those who can walk alongside us.  The frustration with the cliquey-ness and fake conversations filled with spiritual platitude have brought me back to something my older brother told me several years ago when I expressed my dismay with the so-called christian influences in my life... He said "God doesn't call us to GO to church, He calls us to BE the church."

This statement illuminates truth in so many ways around me.  Although we have yet to find a "church home" we feel settled with, I can see how it is already all around me...

It's in the friends who welcome us into their homes with unconditional love and the freedom to share whatever is on our hearts...

It's in the hands of sweet neighbors who bring a meal without even knowing how much we needed it...

It's in the compassion of a woman who allowed herself to be vulnerable when she felt a tug to pray over me...

It's in the faithfulness of a friend who knows we don't always have to see eye to eye to be willing to drive to another state to be there for each other...

It's in the selflessness of a family who have taken our children in the blink of an eye, showed up to help on a moment's notice, and poured into us with mentorship on all things faith and family...

It's in the silence of a friend praying through each hospital stay, knowing no words are necessary...

Church is not in a pew or a gym or a well rehearsed sermon... it is in us.  It is in how we choose to touch the lives of the people around us, and how we will allow ourselves to be used.

Where is your church?

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Two Years

                                                                                                         
My Sweet Ellie Grace,

Today is the day when all of those horrible and frightening memories come to mind the most.  The day I am haunted by the sights, the sounds, the shattering pain of watching you die.

Today though, I want to think about the happy things of you.  I want to spend the day imagining what your smile must look like.  I want to imagine your fluffy hair blowing in a sweet breeze, and your dainty features eclipsed in the glory of the Everlasting Light.  I want to imagine the sound of your voice, and your carefree laughter as you play with the many friends you have made in Heaven.  I want to imagine the overwhelming joy I will feel when I get to hold you in my arms again.

Today we will go to the Butterfly Pavilion, to marvel at the beautiful creatures that always remind us of you.   We will visit your grave and bring you pretty flowers, and help your baby brother release his first balloon for you.  We will cry tears from the deepest gashes of our grief, and then we will hold each other close and we will press on another day, because we know each day brings us closer to kissing your sweet face again.

You are deeply missed my precious and beautiful daughter.  I am longing for Heaven.

Until we meet again,
Mommy

                                               

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The Why of July

When the stars and stripes and fireworks appear, my gut is heavy, my breath sharp, because that day is coming again.

                                                  

The day I chose a soft, neon pink onesie with a frilly little bow... not knowing that would be the last time I would dress you.

The day after I had filled a deep bath and soaked with your warm body against my chest... not  knowing that would be our first and last.

The day I called and your daddy said "What???" and I said, "Just get here."

                                                                         

The day the only thing I ate was a 3 Musketeers Bar, and how I can't eat them anymore because I get that same nervous, gut punched feeling I had that day.

The day I screamed at God to please not take you from me.

The day I watched in disbelief at hands that didn't seem to be mine holding you close as your soul slipped from your body.

The day I kissed each tiny toe and wondered if I had ever taken the time to do that while you were alive.

The day I set you down to be covered by that ugly orange knitted blanket before they rolled you away forever.

The day I walked out into the sun holding your daddy's hand and an empty car seat.
                                
                                                   

The day I watched your siblings dissolve into hysterical tears when I told them you wouldn't be coming home.

 

The day I watched a deep dark hole swallow up every delicate detail of you.


The July my heart broke forever.

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