36,792,000 Heart Beats

August 18th, 2017

11:22am

How does ones heart keep pumping when part of it has died? It shouldn't. I mean, honestly infacted myocardium doesn't transmit electrical impulses, doesn't contract, is useless really...

An ICU nurse for the past 11 years, I have seen so many heart attacks I have lost count. Sudden death, slow death, regardless of how it happens when enough of it does...people do.  

1 Year

12 Months

48 Weeks

8,760 Hours

525,600 Minutes

31,536,000 Seconds

36,792,000 Heart Beats

have passed since yours last beat my girl. A patched work quilt of memories fill those moments. Yesterday and an eternity ago. I long to smell your hair, have my ears tickled by your laughter, feel your arms around my neck, see your blue eyes sparkle. 

Sometimes it feels like if I close my eyes and open them again u will be here, others like I can't find the softness of your cheek and the sound of your whisper.

Time is a strange master. Your face fades from the reality of so many...

Please dont forget her. 
Please dont stop talking about her. 
Please keep her here in your minds. 

The little girl with fierce determination. That held onto the fin of a swift dolphin while weakness and steroids ravaged her body she held onto that dolphin with all her might. The water rushed over her face, filling her eyes and mouth, but she held on. Her determination to be beside that dolphin when the moving stopped was palpable. 

And she was. May we all hold that same determination to hold onto our Jesus thru the waves and water of these remaining days and moments. That we may hold onto Jesus and be found by His side when the waters of this life still...

Incredibly, our hearts have continued to beat thru this year. Thankful for those of u who have proven to be our family and weathered these dark storms with us. Jesus holds our heart beats and we continue to live in HOPE.

No Sis could miss a little girl more. I ache for u baby girl. Days of smiling and words of cheer float on a heart of constant supposition to Jesus for the strength for the next one. 

Living in hope of the day when we will fall to our knees and hold u again. When I will hear your voice scream " Daddy, Mommy!!!" and see u in their arms again. When your brother and sister and cousin won't walk thru this world as half a person anymore. When your Nana can tuck your blonde head under her chin and snuggle u again.

When I will hear "I love u soooooo much Sissy!" again

Without Jesus, without the hope of heaven, there is no morning.

 1 Year

12 Months

48 Weeks

8,760 Hours

525,600 Minutes

31,536,000 Seconds

36,792,000 Heart Beats

Closer to those moments.

Closer to holding u again.

Closer to heaven.

How many more stand between us and reunion? I dont' know. But I pray for the Jesus who has held us for this past year to continue into tomorrow. Hold your little ones. 

Don't get stressed out about the daily things. We would give anything to have those back. As we watch our small ones grow we ask what she would be doing in those moments. Looking forward to heaven...sometimes the breathes seem impossible to take. The sadness leaks down our cheeks unbidden.

"If u were a bird then I'd be a tree

and u would come home my darlin to me.

Oh, did u know we belong together,

did u know my heart is yours"

I woke up that Way Again....

I woke up that way again...the same way I have woke up so many days before. The sharp punch in my stomach almost visceral in its reality. The gasp of air sharply inhaled. Eyes searching, wildly looking. Fingers tearing, throwing, clawing the covers off. Need to get up. Need to go. Need to....Find her...


Reality hits you in the face like a wall not seen. It's icy fingers slide around your heart and you rememeber. Short gasps, trying to catch your breathe, recalibrate, reorient....

Dress, smile, breathe, drive. Grey clouds taste of sorrow. Miserable rain beats on the windshield. Remind myself to turn on the windshield wipers. Can't tell if its the rain or my tears fogging my view.

Where is her voice? I need to see her face...Find a parking place out in the back of the lot. Watching Marco Polo video chats as warm drops hit the screen. Her giggle fills the car, my heart warms. She and I, laughing, funny faces, changing colors. Golden dog kisses on her round cheeks. Her giggle, throws her head back and the sounds of it fills my silent heart.

Listening to her sweet voice say "I love you Sissy" over and over and over....and over. Pausing it on her blue eyes and her little hand waving saying "See you soon Sissy, I love you."

Warm tears mingle with cold rain on pale cheeks. Staring at her face....My heart misses you baby girl. The beat is not the same. The rythm has changed. Close my eyes and long for home. Talk to my Jesus. "Jesus has me," she says. Hold her Lord, until her Sis can hold her, and lift her, and swing her around until she squeels "Oh stop Sis!!!"


Reunion. The light of it breaks thru the grey. Warms the frozen. Dries the tears. Reunion. Until that day we will watch and remember. We will hold onto the precious sound of her voice...Until then...

That Moment...and This One...

That Moment...and This One

   

     The chill in the air brings with it a deeper chill in my bones. The crisp air hitting my face takes me back. The first morning this year we had snow flakes drifting I wanted to be sick. The ice on my windshield left me with the feeling of impending doom. Not a usual reaction I know. It wasn't so much the actual snow flakes, ice or temperature per say, rather it was that all those things take me back to the last time I felt and saw them. Last November. Last December. When our lives ended. The frosty weather reminds my soul of the chill four letters brought to our lives. DIPG. Ice piercing tranquil reality. Innocence buried by frozen fear. 

      I have always enjoyed the changing of the seasons. When the hellish heat of summer gave way to the quickening of Fall and then the moodiness of winter. Never again will Fall give way to Winter without my heart being squeezed. Never again will the sight of rain pounding on a window or snow drifting in a back yard bring anything but a deep terrible deja vu. 

      One year ago tonight we knew a line had been drawn. The moment that video with her terrified eyes trying to turn back and forth came across my phone and we rushed over to see her little face...Life as we knew it was over. The day had been filled with Sabbath and warm, golden puppies. The evening filled with concern and an ER visit. The night filled with hours of dark driving, the 1st IV pokes, scans, and the four letters. 

      One year ago it rained all day. Tears from the clouds formed streams down the windows, our cheeks, and in our hearts. Forming large puddles beneath our tires, and soaking our spirits. Dark clouds had moved into our skies. We have yet to see the sun...

I wrote these words then...the memory of them is thick in my mind today...







November 2016-
"Surely this is a dream right? The rain drops pounding on the windows outside the hallway of the pediatric oncology unit were not real. The little red wagons being pulled around the nurses station, filled with little ones are an illusion right? IV lines disappearing under little shirts, pumps being pulled behind by hollow eyed parents with smiles of desperation. They all look the same. Why is my Julianna in one of them? How can those be her little braids disappearing down the hallway in the wagon pulled by her Daddy? 

We will wake up tomorrow and she will come bouncing in all smiles and curls and sparkle. Petite and agile, a little dynamo. 

But it wasn't a dream. The pain of it would surely have woken us up by now. No one could stay in a dream and still have this much pain.

Well if it wasn't a dream then it is a giant mistake. Yes, that is it. It's an error. They have the wrong child. They haven't done their safety checks (thinking as the ICU nurse I am) and made sure they have the right patient, right chart, etc. Seriously people, you should check your stuff before you scare people to death....

But they did and we are.

I remember vividly the moment we heard the words it seems all DIPG families hear. The oncologist was standing in the room. She had come in all chipper and smiling. I had not seen the MRI scan myself yet and asked her to show it to me. I might be an ICU nurse, but it didn't take one to see the large, glaring glow of foreign tissue in the middle of my Julianna's brainstem.

I found my eyes kept looking down to the lower lefthand corner of the MRI. Where her name was. I kept checking to make sure I had read it right. That it was still there. That I was still there.

As my eyes kept returning to her name. The name we as a family had talked so much about before she was born, the oncologist just sort of droned on and on. I am sure she was saying words that mattered, and they probably even made sense. But, honestly all I could think of was "I wish you would just be quiet. Stop talking. Go away."

I know that it is probably horrible for me to admit it. I am kind of ashamed to but it is the truth. These thoughts I had. I share them only to give insight into the moments that shape us. So that others who have walked through moments such as these don't feel alone if they have thought similar things.

It's uncanny how the words were heard on that diagnosis day have been heard, almost word for word by other families with the same diagnosis. "Go home and make memories." "Well, its inoperable, and we don't have any real treatments so....you should probably just...make the most of the time you have left."

As these words floated from the lips of the oncologist into our ears...I remember strange things. The way her tweed pants were creased down the front. The way her smile stayed intact as those impossible words roll off of her lips. Why is she smiling? Stop smiling, this isn't a time to smile. I wanted to wipe it off her face...literally. The way her hair curled up around her ears. Why did she bother to curl her hair? Who curls your hair when you have to tell a family their little girl is going to die? She should be wearing sackcloth and ashes for crying out loud....The way Julianna looked so ok. On the bed, her mommy arms around her. How can she have a time bomb in her little head? This is ridiculous. I am picking her up and walking out the door. Enough of this dying rubbish.

I remember the way the pattern on the floor was symmetrical. How could it be so even when everything just fell apart? The world is off kilter and the floor is still in nice even patterns. I don't blame the oncologist personally and I should feel badly for picking apart her appearance but it was what my mind did. I will never forget those details."

       The days of her ensuing bravery and courage would number two short of nine months but will linger forever in the hearts of many. That fateful day led to more like it. Standing in the hallway right outside the Pediatric Oncology unit. The cold of the window as I pressed my face against the pane. Willing the cold of the torrential rain to wipe this day clean. I feel it now...How the chaplain came and stood a few feet away and asked if she could do anything. "Yes, please. Make this a dream. Wake us up. Pray to God for I have lost my voice and all that is coming out is a guttural cry of pain."

      The rain would later give way to frost, then snow. More snow then we have had in years. Moving the family to a home away from home. The miracle of finding a place that would take puppies. She had to have her puppies. What an angel.

       If I close my eyes I am standing in that living room, looking out the large picture window. The yard is thick with knee high drifts of sparkling snow. Beyond are the soft waves of the snow covered golf course. The tree branches icy and dancing in the snowy breeze. Winter wonderland. 

      The juxtaposition of this beauty against the impending threat of death brought with it a puzzling irony. The purity of white, the dazzle of frost, the innocence of children making snow angels. The early morning tears, the bravery of a Mommy and Daddy doing the only thing they knew to do to try and save their little girl...It pierces me. Haunts me. It will forever be what I see when winter comes. The beauty she saw in the snow, and the terror of what spring might bring.

     She loved it though. Her knee length purple coat, zipped up tight with her purple boats and hood. Soft, brown fur framed her face and her hands held onto Sophie's service dog vest. Yes, she was unsteady but she was a "Going girl, not a sitting girl." Words that she would say many times in the months to come. And she would live them. She would go, from home to Spokane, to Seattle, to London, to Monterrey, Mexico...

     
     As we face the holidays I am filled with many things. I miss her more then I could ever hope to capture in mortal words. Every little tiny nuance of her...I miss. I am filled with a yearning, an ache, a deep twisting, burning, pulling. It fills my stomach and grows up to grip my throat and squeeze my lungs. One more breathe. One more...then another. For her. To live in her honor. To do what she would want to be doing. She loved her family and her Jesus more then anything else. 

     I guess we will always have these triggers. That take us back as quickly and as vividly as if we were there today. Deja vu is not strong enough of a word to capture the transportation through time. Even though the pain is worse there, I ache to go back. Because she is there. Braids, pink and teal fingernails. Unmarred and innocent...I want to sneak one more snuggle. I want to kiss her one more time. I want to...be with her.

     I love you baby girl. Sissy loves you. I know that your strong handsome angel was with you even then. I know that Jesus has you and I know that the SON will shine thru the rain an darkness we are held in and make this all right again. His light will pierce thru the dark clouds and He will bring you to your family. Reunion. Oh how glorious it will be to hear your squeal of joy! To see you hug your Mommy, your Jeje, your Bubba, Nanie, Samo and your sweet Daddy...An enteral hug that can never be broken. We wait for that day baby girl. We take one more breathe. And then another. Reunion. In this moment it is what we live for...

Darkness meets the Chain-Breaker

Caves

Darkness. Thick enough to touch. Smelling of sadness and pain the darkness actually has an aroma of its own. Sometimes we feel it touching our skin like a dampness we can't wipe off. This darkness is palpable. I taste it and feel. The day the four letter word came into our lives was the day the sun turned out. November 20, 2016. DIPG. The sun as we knew it was gone and the darkness began to descend. Almost nine months later the darkness smothered us as she took her last breathe, August 18, 2017. Secure around us like shackles. Chains of death tying us to the darkness.

I have never really liked darkness. In fact I absolutely do not like it. I am the one who takes three flashlights and a head lamp just to take the trash out at night. Who runs back to the house from the not-so-far-away barn because the darkness must be hiding a boogie man ready to devour me.

This is probably why I don't like caves. Although the shelter and protection against an unexpected mountain storm is appealing it comes at the cost of the darkness. When you can't see the back of the cave its even worse. Where does it end? Who is lurking back there ready to pounce when I turn my back? Even if reality only holds spiders and cobwebs my imagination is sure its a grizzly bear.

The space in our lives left by her death is too big to explain. There is no end. Like a cave we will forever be tipping toeing thru eyes searching for the light at the end...Looking for u baby girl...Turning my head when blonde curls run by and then quickly remembering reality. Every morning, those first moments as consciousness peels back the layers of sleep....you are here. Then reality hits again. A knife in the stomach.

When a family loses a child the cave is long. The stolen years, the darkness never changes, the path still as rocky and treacherous years later. We are blessed to have friends in our life that have used their own experiences in caves and grief to walk beside us. Entering our Caves of grief while still in their own, taking our hands and reaching out to the cave wall, they show us how to take another step, then another. How to feel along the wall with our fingers and how to strain our eyes for the longed for light. The darkness still presses in, it will never change. But the blessing of a friend who has walked longer in her cave is life saving.

I miss the light. I miss the feel of the fresh breeze against our skin. I miss being able to look over the horizon. I miss you baby girl. The world is moving on. Some look with pity as they pass, some stop and ask how we are, some say nothing, enter the cave and walk beside us. We are thankful for all who in their own capacity are trying to be here.

I will be honest, there are days I forget the promise. The darkness is thick and I get caught up in the what if's and should have been's. It is in those moments I am thankful for friends and family who remind me of the promise. That the cave has an end. That the years of walking thru the darkness, feeling along the rugged walls, and tripping and falling onto our knees, will end. That One has walked thru this cave before and blasted out an end. An opening into the light. Where the light chases all the dampness away and the sweet smell of hope and reunion will surround us.

So we take another step, we fall, we crawl, tears at times blinding us, we try to raise our chins and keep our eyes straining for a glimpse of the light at the end. There are rare moments when our nostrils catch the barest whiff of the sweet smell of hope. It draws us onward...

One of the misconceptions is that our eyes will grow accustomed to the darkness. One would think that when darkness descends the eyes would adjust. Pupils dilate to admit as much light as possible and the mind would grow used to the dimness. This is not the case with this darkness. Losing a child is a darkness you will never grow accustomed to. Mommy's and Daddy's will forever feel the hole as acutely as the day it happened. Families will always notice the empty chair.

Our eyes strain to see the first glimpse of light. Our fingers searching for a change in the terrain to indicate the cave is ending. The light is real. It is there. Soon and very soon we will make a turn and the light will be there. Fingers of brilliance and warmth reaching thru the heavy darkness and illuminating our souls. An end to this path. Fresh air and warmth will touch our souls and our family will once again be whole. Reunion. Her strong and handsome angel will hand her to her mommy and daddy again. Blonde curls will be hers. Giggles and hugs and fluttering feet dancing like our butterfly used to.

So in those moments that we have forgotten what the lights look like, we take another step. Knowing that there will be light. No more boogie men waiting ahead of us. No more night. We hold onto this hope. He has broken the chains of death. He has conquered the grave and it holds no power over Him or anyone who believes in Him. She did. Jesus has her. She sleeps in Him without fear or pain.

Another day of the darkness breaks but we crawl forward, holding the promise of the soon coming light close to our hearts. Come soon Jesus. Stand with us in this darkness and help our eyes to always look for You, our Chain-breaker...

https://www.facebook.com/Gaithermusic/videos/10155420356401187/

Shave FOR the Brave- My Promise

Shave FOR the Brave

It was November 21st, 2016. I was kneeling on the tile floor of a hospital bathroom. Jeans damp with the spray floating out of the open walk-in shower before me. It was the day after. The day after we heard the four letters that switched the direction of our lives. DIPG.

It didn't seem real. She looked healthy and really no different then she had two days before. She had been confined to the bed up until now and had chosen her Sis to help her into the newly approved shower. Even the shower door was too much separation so we left it open and I knelt, half into the spray. We talked about a lot of things in that shower. Moments I will always hold close to my heart.

We had no idea. How could we? Even now we don't know what the future holds. We had been told that she had a tumor inside her perfect head. It didn't seem possible. Perfect blonde curls were a halo around her shoulders. It would be months before we really got a full glimpse of the monster inside her head.

In those moments, in the shower, we talked about a lot of things. Her voice wavered as she asked me, "Sissy, will I loose all my hair...?" The look in her innocent eyes tore me down to my soul. Even in those early hours of this journey I wanted to jump in front of this train. I wanted to stop it. Protect her. Stop it from touching her. The bruises on her little hands from IV starts were so far the only physical marks to be seen. Not too bad. Lets go ahead and go home now. Little did we know that almost every inch of her little body would be touched by this disease.

"Sissy, will I loose my hair?" At that moment I didn't know. We had been told to go home and make memories. Would there be treatment opportunities that would take away her golden curls? No one knew. Those curls her Mommy so lovingly braids and twists and ponytails. Her creativity amazes me.

I reached out and ran my fingers through her dripping curls. Without a moments hesitation I whispered, "Baby girl, I don't know exactly what is going to happen but I can promise you this. If you loose your hair I will loose mine too. If you loose your hair I will shave mine too. All gone. You won't be alone. You won't feel different cause no one else in the family has no hair. I promise baby girl. I promise." "Oh Sissy!" Wet little arms around my neck. Wet little person in my lap. Holding her close and praying that life wouldn't hurt her.

As the journey took another day and then another and another radiation took some of her hair but she was able to rearrange and didn't feel the difference too much. A few weeks ago, this bump resulted in the need for brain surgery to relive the pressure inside her perfect head. As she wheeled back into the room we could see that this monster had yet again claimed part of her. Her little head was missing almost all of her golden hair.

It was never a question if I would follow suit. Of course I would. I promised her. Today I made good on that promise. Without any reservations. It's just hair. I have a choice in this loss. She didn't. The other little warriors fighting for their lives don't have a choice. My hair will grow back. Some of the little ones won't have that chance...

I have been asked by some who knew I was going to do it, "Why Brave the Shave? What difference will that make?" Well, besides my shower-side promise, Braving the Shave is an amazing way to raise awareness for these little warriors. When someone asks what happened to your hair, you have the opportunity to share your heroes story.

For me it is not so much Brave the Shave as Shave FOR the BRAVE. She is the bravest, kindness, most courageous human I have ever known. Though she didn't choose any of this, she walks with her Big handsome angel and her Kind Jesus every step of the way. Though every inch of her little body is touched by this bump, her innocent heart is true and precious.

I will walk with my head held high. Proud of my baldness. Proud of be like my hero. She will not be alone in this fight. Its not about the hair at all. Its about Julianna. Its about the journey. There is a strange clarity to be without hair. To look at your face in the mirror and know that these little heroes see their own faces in the mirror and wonder what they think. Will it grow back? Will I get to grow up?

I was blessed today to have my amazing Mom, son, and Jillian there to support me as I made good on my promise. I wished I could have been with Julianna today. To see her little face as we looked at our bald heads side by side. But it wasn't to be. Together in spirit. Together in our hearts. She is my person. She is my heart. The little girl I never had and always wanted.


My dearest friend Jenee agreed to do the deed. How cool is that? She was AMAZING! I was able to donate my hair to make wigs for kids with cancer which made it even cooler! Thankful to LeFore's Spa and Salon for hosting an amazing fundraiser today and for helping me Shave for Our Brave girl! Jenee did the most amazing job. It was special to share that moment with her. She has been such a rock in our daily journey.

The kids got in on it and my dear dear sweet friend the most talented Melissa McFadden came to capture the moment so we could share it with Julianna. She has been such an important person in my families life. She has been here to capture so many of the moments, the ones that matter. I cannot thank her enough for her wiliness to step in and make those memories last forever. She gives of her time and talent and I can't ever say thank you enough.

I will stand and walk with my girl every moment of every day. You don't need to be physically with someone to be with them. Our hearts are together. I am proud to be her Sis. I have never ever been more proud. More humbled. More honored to stand with her...That moment in the shower was a long time ago. Another lifetime really. The Before. Yet it was just a moment ago. I can still see her little eyes asking me that question. Baby girl, no you will never be alone. We stand with you. We fight with you. I wish it were me. I wish I was the one with DIPG. That she was still untouched. I would do it without hesitation. However, since that can't be done, I will stay as close as I can so she won't feel alone. Its not about me. I stand as a reflection of my love and pride in her spirit and faith. I love you baby girl. Sis is here....

If anyone else wants to Shave for the Brave we are going to try to raise funds to continue Julianna's treatments. She is making such progress and we are so thankful for all the love and support.

You can set a goal and get sponsors or donations to make that goal then you can Brave the Shave yourself! Or you can challenge someone else to Brave the Shave and be part of their team! No matter what Julianna would love to see pics and videos of you Braving the Shave!

Some people are going to do an Undercut and just cut off a little on the back of their hair like kids who have hair loss from radiation. Others are going for the whole thing like kids who lose their hair to chemo or surgery like Julianna.

No matter what we are showing our support for our girl and helping raise awareness of these little warriors. Thank you all for being part of Team Julianna. We Love You!

The Waiting Room

The Waiting Room

7-18-17

Waiting rooms. They look the same in every country. Regardless of the language drifting around you the room is the same. 

Walls stand as witnesses to the countless hearts pounding. Waiting for news. Waiting to read the faces of the staff as they come out the  doors. Are they smiling? Or they worried? What does it mean? Waiting for the ones who know to come in and give us answers we so desperately seek. Too often they have none....

We don't wait patiently. Sometimes we sit and think " Hurry up! What could be taking so long? Don't you know we are dying with worry out here?" Sometimes my mind even doubts those behind the door. Do they really know what they are doing? What if they never come out?

Chairs hold bodies in expectation. Some hunched over in resignation. Others with tapping feet and drumming fingers. Anxiety leaking out of all extremities. 

Chairs can't hold all. Some pace and stand and shift back and forth. Worry and fear manifested in motion. The carpet shows signs of wear on the preferred pathways of pacing 

The table holds a worn bible and a rosary. How many times have worried hands leafed thru those thin pages seeking hope. Comfort. Guidance? How many times have those smooth beads been pressed between fearful palms?

All waiting rooms are the same really. Expectant faces. Waiting for the words that everything is ok. Better. 

The stories waiting here. Each person holds a person in their heart. A story in their mind. Each one is the only one for each one. So much pain. Walking in their own shoes no one knows the reality of another yet we all share a commonality. Wishing we weren't here. Wishing they weren't here. Wishing for the "before". 

Beside me sits an elderly Hispanic man. Hair seasoned with grey, face lined. He has a distinguished hard working air about him. Clean trimmed fingernails end calloused fingers drumming on the knees of well worn jeans. Head bowed, brown eyes filled with worry. He lifts his eyes expectantly every time the door opens. He is worried. He is.... all of us. Our eyes meet. We do not share the same language yet our hearts connect in understanding. He nods. I smile. We wait. 

I am reminded as I sit here in this room of waiting that our lives are really spent in a similar  " room". This earth is our waiting room. Filled with anxiety, fear, hoping, worrying. Waiting for those doors to open and those who know who can change things to come thru and tell us everything is going to be ok. 

Our lives here on earth are a preamble. An existence without all the information.  The other side holds answers. Plans. Understanding. We wait here in the room or torture and our minds conjure up all kinds of imagery. Ask all kinds of questions. Fear all kinds of monsters. 

It is not until the doors to this earthy waiting room burst open and the King strides threw arms open certainty and hope on his face. We wait to see that face. The ones who brings the answers to our questions. Why? Why her? Why this? Why didn't You? 

His face holds the peace we yearn to see. That everything is going to be ok and we can take that deep breathe and our hearts can beat again. We know that with that entrance we can leave this waiting room and go to the real place. Where we no longer wait for the other shoe to fall. 

And so we wait here. In this earthly room of waiting. Until the doors open and heaven is our reality. Please Come soon Jesus. 

#foreverhersis

She smelled of Doritos and a hint of frankincense. As I held her close and whispered how much I love her... Golden hair in what used to be bouncing ponytail beneath a Team Julianna hat. Pink shirt with Gold sparkling heart we bought her and her fan around her neck.

She shouldn't be driving away. She shouldn't be headed to yet another foreign country to fight for her life. It is dark and cold and early. There is nothing her Mommy and Daddy want to do more then scoop her up and tuck her in bed safe. This world is not safe. Not for her. Not for anyone.

Cancer changes every tiny part of your life.

Her breathe is warm against my cheek. I feel her strong pulse against my chest as I hug her tightly. She is brave when she doesn't feel like it. When she doesn't want to be. I wish I could do this for her....

Her giggle whispers in my ear when I tell her the healthy snacks Nana brought. She is worried about her wheelchair that is being shipped. We joke about how Daddy said it will probably pass them in the air as it is to be shipped here today. I promise that we will do whatever we can to get it to her asap. She says "Really Sissy?" I say "absolutely!" Inside I am thinking "Baby girl I will fly to the moon and back if you need me to."

I love her. She is my special girl. Our hearts seek to care for others even when we are struggling. She is an angel.

More hugs. Hurried. Desperate. Faining assurance I wave and smile! More I love you's. Promises to call and text and and and.... my hand reaches for my fence to keep me upright as I close the van door. The van holding my whole world backs up gravel crunching. Hands waving. Kisses tossed. I love you's ringing. I smile and give a thumbs up. You got this baby girl!

Glad she can't see my tears. Glad she only sees my smile.

Darkness descends quickly as the vans lights bump down the road. "Jesus go with them..."

She smells of Doritos and a hint of frankincense. I will hold that hug in my heart until I can hold her again in my arms.

#foreverhersis