Rest In Peace sweet boy. RIP- Devan Barlow- November 16, 2014.
A Tribute to my Super Hero:
When super hero’s come to life, when they speak to you, when they show you a way of being that you never knew possible, when they open your eyes to childlike kindness, joy and love. Super heroes: At the end of the day isn’t that what our children are? They show us the path, they bring us back to what’s important, they play, they love, and they exist without judgment, forever present in each and every moment.
Devan Barlow, super hero, turned angel taught me about the will to live, the heart to fight, the heart to love and be loved. Most of all he will be my forever reminder that today truly is all we have. A reminder that feelings are better shared, experiences are sweeter when you’re present, sunsets will always mesmerize and your mother loves you more fiercely than any other being on this earth, his certainly does.
I don’t believe or in any way buy into the ideology that ‘everything happens for a reason’, I think some things ‘just happen’. So, instead of spending my time trying to make sense of 'why', I’d rather turn my thoughts to mindfulness, to being present with those that I love, to joy, to love, to light. To live, like Devan lived, to fight like he fought, to be brave and to giggle, that boy loved to giggle. There is no doubt in my mind that Devan is running amongst the angels this morning and among some pretty amazing company, who undoubtedly welcomed him with open arms.
My darling Amber- you are the best mother, watching you love him taught me so much. Your strength is unparalleled and you’re the definition of beauty and grace. You were designed to be his mother, his warrior, his person. When things became unbearable you fought to show him one more sunset, you found that little smile, I cherish having watched the way you two love each other. Love like that is forever, no amount of time and space can break the love you two shared, magical indeed, my dear.
As the days go by and the seasons change, I hope that Devan’s life will serve to remind us all just how blessed we are to be here, to have this day, to love, because at the end of the day, it seems to me, that it always comes back to love. Fly high super hero, you’ll be missed and celebrated every day.
Please help me get the word out for Devan and his fight. Devan faces brain surgery this month, as you can imagine that's a pretty huge deal for both him and his family.
Our goal is to raise as much awareness as possible for Devan and Amber as they enter into an uncertain time. Please keep an eye out for upcoming fundraiser events that will be announced via Devan's facebook page as well as my own and others. You can follow Devan's story here: https://www.facebook.com/DevanBarlowFight
I want Amber and Antonio to be able to rest in the certainty that they WILL be taken care of. The stress of missing work shifts and paying simple bills shouldn't even be a concern during this time. I know they are so thankful and humbled by the outpouring of support they have received over the past 8 months but the fight is truly just beginning. Please help me in being a warrior for Devan and his fight. No child and no parent should suffer alone. Feel free to reach out to me directly with any questions & thank you for all that you have done and are doing to love on this sweet family.
"Antonio and I want to thank each and every one of you for your love and support. It is our mission to find a promising treatment plan to give Devan a fighting chance of recovery. Antonio and I are indebted to you for your generosity and kindness during this dark time for our family. Many of you I have grown up with, cross-fitted with, and served with, and many I haven't had the pleasure of meeting yet. We want to express our extreme gratitude and hope to one day repay the love and support you have given us.
My heart sank when the doctors informed us of Devan's condition. This is a pain I never expected to endure. It is a battle I will not back down from as his Mother it is my duty to protect him and fight for the life that he deserves.
He has always been an amazingly vibrant boy with such joy and animation. His giggles and smiles just light up any room. He has already touched so many with his beautiful heart and character. Your love is a gift. From the bottom of my heart, thank you."
I continue to be overwhelmed by the generosity of so many. Last week was life changing for this family. I believe in their fight and I believe in your prayers and your words of hope. Let us be a community who fights along side this family. xoxo
I get more emotional every time I check this page. The outpouring of love and support from people Amber and Dev know and some they have never and will never meet, is such a beautiful thing. This family is truly loved. Many thanks again for your generosity, almost $10k in 2 days- blowing my mind!!!
God Bless this family- lets all do our part to make sure that Devan gets world class care and has the best possible chance at making a full recovery through this battle he is fighting. The tumor is called a diffuse intrinsic pontine glioma commonly referred DIPG. DIPG affects the pons portion of the brainstem, rendering nervous system function impossible. Symptoms include double vision, inability to close the eyelids completely, dropping one side of the face, and difficulty chewing and swallowing. Unfortunately these symptoms usually worsen rapidly because the tumor is rapidly growing.
DIPG, for all its difficulties, presents an opportunity for all forms of cancer. It is one of the most resistant of all cancers to chemotherapy treatments; it affects primarily children (whose treatment has historically led to innovations in many other forms of cancer), and with a "dismal" prognosis, alternatives are few. Put together, these obstacles offer researchers a chance to revolutionize cancer research and prevention. It is even suggested that a cure to DIPG might result in a cure for almost every other type of cancer. For this reason, the cure starts now.
Childhood cancer is a battle that should never be faught alone. They say it takes a village to raise a child- can I call you to be that village for Devan, Amber and Antonio?
A recent and inspirational post from Amber just a few days ago, reminding us all of how sweet and fragile life is: "As I got ready for work this morning I watched Devan clumsily slide out of bed and crawl to the bathroom. He was hardly awake at this point and not yet ready to walk. Once there, he stood up for all of a split second and fell to the floor. I reached down to help him up again and support his little body as he used the bathroom. He then asked that I carry him over to the bed and before I could sit him down on the mattress he expressed to me in a frustrated tone that "no, I do it myself." So I helped him stand and as he regained his balance he attempted just that banging his legs up over and over again as he tried multiple times until he was finally able to muster up the strength to pull himself onto the bed. He then sat on the bed beside "Cheerios" to play on his iPad and as I continued to put on my flight suit he turned his gaze at me to give me that cute lil' crooked smile. Our lives have been changed so much and in moments like these I find inspiration. And he is just that. My inspiration. He's walking now, although wobbly and much off balance, but he's determined and will have it no other way. Sometimes the smallest of people show you what true strength and courage is all about. So when you feel like you keep running into walls, think of Devan and just keep moving."
Amber, unimaginable, the hurt, pain and extreme loss you must feel...... I have cried and prayed and cried and prayed. Even though we have not been in touch for many years I think it is important for you to know that you have support here. If there is anything you need please feel free to get in touch with me. All my love! Lorie (Jones) Krauss