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!