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!
