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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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The Glitch


This may prompt more questions than answers, but just as we have a close circle of friends and family walking us through this, we also covet the prayers and support of so many of you that have joined our lives from millions of miles away these past few years.

For some time we have known something isn’t right.  I have not been well.  One doctor appointment has led to one after another, testings, admissions, treatments, questions.  The ever-frustrating battle of insurance and availability of doctors, and whether or not I am considered worthy of their time.
The months have dragged with a great deal of fear.  I have been tormented with a myriad of symptoms, leaving me unsure of my abilities to continue as a wife, a mother, a paramedic.  
My ever-faithful husband has remained my steadfast rock, even as he has been recovering from his own injury and surgery.  He has continued to press forward for me, to search for answers, to do more so I can do less, and to assure me of hope on the days I can’t see through my tears.
We are coming to the end of the questions and the beginning of the answers.  It has taken a long time to confirm.  It has left me weak, with a stutter, in a great deal of pain, dependent on braces, therapy, and medications.  It has brought me to my knees with an unwilling spirit, a failing hope, and yet surrounded by such an amazing group of family and friends that have continued to hold me up when I haven’t had the strength or the will.
 We are hoping and praying for the least-invasive treatments, and for not just management, but for healing.  For days when I can tickle and run and snuggle again without having to think about pain or weakness.  I struggle to believe in healing and in miracles anymore, but I have a steadfast army who believes FOR me.
Please join us in our prayers.  I haven’t handled it with much grace, but I am overwhelmed at the people who have fought for me when I have been too discouraged.
My sweet Baylie said the other day, “it’s ok Mommy, you just have a glitch.”  (if you’ve seen Wreck It Ralph you will understand, if not, you need to rent it now).  It was just a reminder of how my family has never left my side, has accepted me no matter the prognosis, and will stir in me the strength to push on.

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A Strong Word


Some of you understand and some of you do not, the ongoing torrents of pain after losing a child.  So walk with me, and understand my strong word.
As children we are taught about the words we shouldn’t say.  Hatebeing a big one.  We are told, “ that’s a strong word, don’t you think you should use ‘dislike’ instead? I think you ‘dislike’ the way your friend treats you, you do not hate them.”   So we grow up learning to use the socially appropriate versions of the words we want to say.
The thing about adulthood is you learn there are just some times when no other word will give justice to what you need to express.  Such as when my shin has just met head on with the edge of the coffee table, or what I really think of our dog when he makes a mess, or most poignantly the hot boil I feel when so many things remind me of the heartbroken despair that is never far from my mind.  So I think I have earned the right to use the only word that truly captures what I sometimes feel.
Here is what I hate:

I hate that I have questions.  Questions about if we did the right things.  Questions about what could have changed.

I hate that I stood in a parking lot holding my 5 year old this week because one of Ellie’s songs had just played on the radio and we were both bawling too hard to walk inside.  

I hate that it is normal that our family errands sometimes include stopping by to clean a tiny headstone, to change flowers with the changing seasons.
I hate that when I have a call for an infant at work my stomach is in knots the whole way there; that I have to completely detach so that I can focus on what needs to be done without being overwhelmed with the memory of watching my own daughter being worked on.
I hate that every day I work I have to walk through those hospital doors and remember the sights, the smells, that hallway, that room.
I hate that with every joy, there is a pang of sadness because something is missing; that on Mother’s Day I feel such joy and pride coupled with such deep, wrenching emptiness.

I hate that when my kids see me sick, the first thing their panicked minds take them to is, “Mommy, I’m afraid you will die.”
I hate the visions that haunt my mind, the freeze frames of terror that are so easily remembered when the right trigger is there.
I hate seeing Fourth of July decorations appear in the stores, because it reminds me that horrible anniversary is right around the corner.
I hate that I don’t have a better grip on myself, that I haven’t gotten to a place where it doesn’t make me cry anymore, that I am not just living every moment in hopeful expectation until I see her again.
I hate that it hurts.

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Mother’s Day

This Mother’s Day I have no words… there is joy and there is pain and there is thankfulness and fear, and I can’t quite sort them all out right now.  So on this Mother’s Day, simply some beautiful faces… some that are here and some that I miss, but all that have called me “Mommy.”

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The Dance

Friday, April 26th.  An ordinary day that should not have stood out in my mind.  But somehow it did.  As much as I pushed the thought to the back of my mind , I subconsciously still counted the days.

On a morning that thrilled with the hum of routine, my heart knew it was different. Day 135. One hundred thirty five days of waking up feeling like Christmas as I float in to scoop up the warm snuggly smile that awaits me beneath rosy cheeks and sparkling eyes.  Handfuls of days to smell his sweet skin and feel tiny fingers wrap around mine.  Four and a half months that feel like a lifetime that I cannot imagine any different, but four and a half months to remember what a painfully short amount of time that is.

April 26th, my beautiful Colby Grayson was the same age Ellianna was when we held her as she drew her last breath.  Another morning we had awoken, expecting ordinary.

 Earlier in the week I tried to imagine… two days left… what if I had known?  What would I have done?

While I may have paused to let my lips memorize the feel of her skin, or rocked her through the night instead of putting her in her own bed because I was exhausted, deep down I’m glad I didn’t know.  I was present in those days before we lost her, instead of worrying what it would be like without her.  I let myself imagine who she would be, instead of wondering what would be her very last outfit.

 No matter how long the time… days, months, hours, it would have always been too short.  It reminds me of the song “The Dance” by Garth Brooks… “I could have missed the pain, but I’d have had to miss the dance.”  I’m glad I spent those four and a half months imagining my lifetime with her, instead of bracing for the reality ahead.

Day 136 I lifted Colby out of his bed and breathed in every memory I could.  I smiled, I cried, and I whispered a prayer of thanks that I got to  hold him in my arms this day…and the next, and the next, and the next.

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Fear, and Busting Through It

FEAR.  That’s the big scar for me that I have done battle with for months.  This season in my life has too acutely shown me how little control I have.  Not so good for a perfectionistic control freak like me, oh my!  It is a journey… to learn how to trust with unwavering faith.  I have a long way to go.

I feared when we brought Colby home from the hospital at one week old.  He seemed so healthy, but I worried anyway.

 It took me several days to realize why my stomach hurt every time I combed his hair– it was my body remembering softly brushing over the scars on Ellianna’s head–always scared that I might hurt her. 

Colby’s soft, milky baby smell made my chest hurt.  It reminded me of the day that scent disappeared too soon.  I breathed deep of it, to ingrain it into my memory; afraid that day would come again.

My sweet baby boy started sleeping through the night at two weeks old.  Dreamy, sighing, refreshing sleep, and yet I was exhausted; awake every 15 minutes to check if he was still breathing. 

I have feared I won’t have the chance for one more photo, or that I won’t have any video of him.  You can imagine what THAT fear has led to 🙂

After several weeks of the sun rising with my sweet little boy still safe in my arms, I began to let my guard down.  That was when my faith was tested again.

He was blue, gasping, but no rise of his tiny chest.  My mind shut down, my hands did what I have been trained to do… but I couldn’t revive him on my own.  I called for help, and it wasn’t until he was on the way to the hospital ahead of me, that it all came crashing down.  The roots of hope I have been nurturing were pulled by doubt.  I was blind with terror, incredulous that I was about to live this nightmare again.

Colby stabilized, he was breathing on his own, weak and pale, but breathing.  He was admitted with aspiration pneumonia after spitting up and then inhaling the fluid.  It seemed so stable, but my heart was not.

This will sound ridiculous, but I started taking pictures.  Every few minutes taking another, because “what if this is my last chance?”
                             

It wasn’t just me… shortly after my husband left the hospital to go home to the other kids for the night, he texted me.  He was sick because it was all too familiar…. the last time he left, leaving me at the hospital with our little girl, and me calling him to come back because she was going to die.

I was standing over Colby’s bed.  He was pale, temperature rising, and everything in me was bracing for impact.  I bowed my head and I screamed at the God I was trying to trust. 

“Don’t you dare take my son from me.  I am not Job.  I will not continue to praise You.  I will not survive this time.” 

All this fear stemming from such a shallow belief that the God I claim to believe, really does have my best interests at heart.

They say He doesn’t give us more than we can handle… So I’m trying to believe that He must really think I’m strong to give me what He has.  Doesn’t make it easier really.

 As I’m entering another season that at times seems too much, I have the advantage of being able to look back at all He has brought me through.  Wasn’t ever pretty at the time, but here I am… after days I thought I would never make it through, here I am.  And there He is, just trying to make a Job out of me 🙂

Colby has since recovered completely, and is thriving.  His smell is sweet, his smiles are cherished, and we have enough photos to embarrass him for years to come.  I am sleeping almost the whole 8 hours that he is, and I am continually, purposefully giving my fears to God.

Two of my sweet little ones have surgeries coming up.  Although nothing like the brain surgeries that changed our lives, I can’t help but feel anxious.  Enough so that we are opting to drive to a hospital out of town instead of sitting in that familiar waiting room close to home.  I know that I will be an emotional wreck; that’s just the result of the hard that I’ve been through. But I’m being intentional about sharing my fears, leaning in, and choosing to hope that good things and happy endings do exist.

 Most of all, I’m preaching to myself, reviewing the promises, and remembering that even if things get hard, I will be upheld and sustained by a God who has already brought me through so much.

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Be Brave

People don’t like hard.  They don’t want to be involved in messy, and they certainly don’t want to feel uncomfortable.

That has been a difficult reality for me to learn over the past year and a half.  When our lives got hard, we saw too many people walk away.  People we thought would be there day in and day out to pull us through, instead chose to walk to more comfortable ground where there were less tears, less heartache, and certainly no talk about death.

Some of those people have been watching; waiting until it seems like the air has cleared and they wont have to see any pain when they talk to us.  These “waiters in the wings” have assumed that it must have been long enough now.  This precious new baby we have welcomed into our lives has surely healed all our pain and enabled us to move into the future without talking about the past.

Well, oops, sorry to burst that bubble.

Hard is not fun. Hard is not pretty. It’s not something any of us would choose, but it is real and immutable and a big part of what makes us who we become.  The hard things we go through don’t magically fade away after a given amount of time.  The hard things become part of our story, and shape how we respond in the future.

Reluctantly, we have let it in.  We have leaned into it, wrestled with it, and learned how to push on when we don’t know how.

The people who don’t want to know hard exists, won’t want to commune with us, but the ones who are brave enough to embrace it, might just be blessed by some of the things it has changed in us.

Are you brave enough to let us in?

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84 Days For a Lifetime of Smiles

During the first few weeks of Colby’s life, I was aware numerous times of the differences between him and Ellianna.

He is alert… he shows interest…his body feels so soft and cuddly compared to the stiff muscles Ellie had.  All these things not only made us realize just how sick Ellie had been, but how healthy our new little guy is.  In spite of these obvious differences, my heart was holding out for one thing…

a smile.
For each of the precious 135 days Ellianna was with us, we never saw her smile.  We giggled, we cooed, we made silly faces, and we waited.  Waited for a little smirk, a dimple, a grin… something that would show us she was happy inside and that her tender soul knew we loved her.  We squinted at her, trying to convince ourselves we saw something that we didn’t, pretended that each little twitch surely must have been a smile.  But the truth was, it never came.
When I looked at this sweet baby boy in my arms, I longed to know that he was in there; that buried beneath his shiny eyes and smooth cheeks, there was a spirit that recognized my face, read my joy, and could reflect that overflow of loving giddiness I have when I look at him.  My heart needed to know that he could.
Day 84.  Colby lay on my lap like he did every day, while I sang and cooed and told him how much I loved him.  And there it was.  His eyes crinkled, his forehead wrinkled, and his tiny lips stretched into perhaps the most beautiful smile I have ever seen.
I burst into tears.  I laughed. I squealed.  I fumbled for my phone to capture this moment in time.  I have the proof… it is blurry and shaky and inexact because I was shaking… but I have it… his smile.  

Every day since, he has flashed those gorgeous gums, crinkling into a beam of brilliance at my singing and cooing and silliness.  And every day I drink it up, and look forward to a lifetime of these smiles.

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Things on Sticks

I know there are many anti-Valentine’s Day folks out there… for various reasons.

I like this special day, not so much for all the mushy him and her stuff, but because it gives me an extra special day to celebrate my LITTLE loves.  I enjoy their sleepy smiles when they stumble in to find a little gift wrapped in red tissue paper, topped with a sugary treat.  It is satifying to see the awe on their faces when they see that I can make pancakes turn pink, or create eggs in the shape of a heart.  They are my little Valentines, and I love reminding them just how full my heart is because of them.

There came a day though last week when Valentine’s made me feel sick.  The day I wandered through the store picking that special little treat for each of my sweeties. 

I absently stumbled upon the baby section of the store and stopped right in front of a tiny white dress sprinkled with the brightest pink butterflies.  A year and a half since I have held her, and my first thought was, “Perfect!  That’s what I will get for Ellianna.”  And then it hit me like a belly full of concrete.  She is gone.  I don’t get to pick a special Valentine surprise for her.  The only things I get to buy for this little girl are things on sticks.

A frosted flower, a flapping butterfly, a wooden heart…  things on a stick that can be stuck in the cold metal vase that sits atop her grave.  That’s it, and it makes me so sad.

 
 

 

I miss that I don’t get to remind her I’m thinking of her with a special treat or a new hair bow.  I miss knowing to buy her favorite color, and what size she would need.  I miss getting to tie a red bow in her hair, and staying up late to cut her sandwich in the shape of a heart.

Mostly though, I miss getting to hold her and tell her how much I love her.  So Jesus, hold my heart… until someday again I get to hold… my Chubby Little Pumpkin.

 
 
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