There isn't much comfort in words when you go through these things. I shared this with a friend desperately helping Lexi Crawford survive Rhabdomyosarcoma. Words first off that don't bring any comfort or solace, but do reflect the reality of feeling numb when overwhelmed by the meeting of exhaustion and faith. 

Even when you know that there may be thousands of people praying for you, you can feel isolated and alone in your struggle. You feel abandoned and hopeless.  I have been there so many times. 

What I'll share is just my experience. Hope isn't an outcome. Hope is something that sustains us when all else seems to be lost.  Whatever the outcome, never lose hope. There is joy in hope. There is pain in hope. There is abundance in hope. There is suffering in hope. Just know that your hope not only sustains you but it sustains millions that will follow your legacy to come. 

So hope is never hopeless or worthless. Hope and love are our greatest gifts. Never lose hope. © 

I'll leave you with a quote from one of my favorite authors Yann Martel: 

Even when God seemed to have abandoned me, he was watching. Even when He seemed indifferent to my suffering, He was watching. And when I was beyond all hope of saving, He gave me rest and gave me a sign to continue my journey... - Yann Martel

Please read Lexi's story

I was riding down the road the other day and I saw a homeless person with two overflowing shopping carts. It isn't the first time that I've seen this. Each time that I see this it sends my mind racing. I think about the nature of us all. It seems that very few of us are wired to just have a little and be content. We always strive for a little more in life. Some of us are collectors, some are traders others are somewhere in between. What is it in us that strives for more?

The strange thing about the homeless person was to me it seemed easier to be homeless without so much to carry. When you repeat that in your head it doesn't sound right. So overlooking the fact the person is homeless, I am thinking they have too much useless clutter and should just drop the excess. It was a different kind of clarity moment for me. For I've had the same clarity moment when I see a person of wealth fill their house with clutter until their coffers run dry. But that person has a house. Something that is a basic need for every human. 

When we think of excess, we think of the very wealthy having so much that it waterfalls over sanity. I also think of most that live pay check to pay check continually caught in a vicious cycle of wanting more. In all three extremes, there is no balance. There is no peace of mind, peace within. The homeless woman caught me off guard because you could see that having more could help, but not that kind of more. So I came to ask myself what kind of "more" should we strive for. 

I've been all over the map with this one. I've had wealth and spent it responsibly. I've been in between and spent it stupidly. I've been poor wanting more. I think the real question is what "more" do you want from life and what is that "more" worth to you. Can you trust yourself to live within what you have been given, be a good steward and balance wanting "more". 

More to me is defined in so many ways. It isn't always wanting more material things or wealth. It can be more time, more happiness, better health. The true test of a person's character isn't what they do when they are given more, it is what they do with what they have and do not expect anything more. There is something beautiful about seeing someone content with a simple life. They could have more but they choose things that elude the values of this world. Their riches are steeped with peace within and at peace with the world around. 

If you aren't happy with your world, change your world right?  I've heard that before. What if the part of that world is your health or a condition you can't physically change?  Well, then you redefine what it is that defines you. You redefine what it means to have a good or a bad day. You are diagnosed with something new to fight, you grieve, regroup and redefine your path. Is any of this easy?  Hell no, not even close. I live it intimately. Many more live it every day in silence. But we take what we are given and make the best of it. If I have a house of broken wood, I'll carve my initials in the door and keep it clean for you to visit. A place to call your own is something I once took for granted. If something nicer falls in my lap then great. But I'm content with not having more. I'll see how long the human inside of me allows my humbled spirit to just be in this moment and be content. Live in the moment you are in, be thankful for the ground beneath your feet that meets your step. And if you are falling, be thankful that there is a ground that will eventually meet you. And no matter how bad things get, no matter how many times you have to redefine your life, the one certainty in life is that everything can change. 

In an amber run year of my life, I am reminded that one of my greatest wishes was to run a full marathon one day. I realized today that I have been running for seven years now. Sometimes running with denial, anger, bargaining and depression. In 2014, my marathon touched acceptance with what I thought would be the final stage. The stage of after having a bad day or accepting what you've been dealt, redefining what was a good day. And in 2014, a new and heavier diagnosis made everything else seem so much smaller.

In the stillness of the past year, I have been reflecting on what's next. I am not a fan of physical mirrors. I am a constant internal reflectionist. So with a year of not writing in my blog, I have to come into reality. Back to where acceptance doesn't really co-exist with inner chaos. Always carrying a cheerful disposition regardless of what rumbles within. I don't trust many with the truth of what I am fighting that is new and awful. I feel like shit today. Not crap, shit. There is an exponential difference. There I said it. Where I usually have given seven years of inspiration, I have given the blatant truth. 

In the past year, I have rediscovered my passion of writing and have many projects in the mix. In my spare moments, I write poetry and prose on Instagram. I've written poetry and prose my whole life but have been reluctant to admit it for some reason. I guess I felt that it made me look soft when I tried to portray a warrior spirit. But I have found peace in being both whether or not people connect with it. 

The good to take away from this is as always, I share for understanding not pity. When you say you hate Mondays, I can relate, just in a different way. So I don't scoff or belittle what you go through. Everyone has some level of pain and suffering. If you don't then good for you. Enjoy these days and use the good to help those stuck in the bad. Don't try to "fix them", just listen and be there for them and for God's sake laugh with them. That is what makes us feel alive and normal even in small doses. It is tough adding that into your life I know. Twelve years ago, I was a good listener but terrible at keeping in touch with those in real pain. So I understand that life changes and you adapt as either becoming a person more in tune with the world or someone living an oblivious life. I have lived both. I just have a life now that moves in a way that I have the time to examine the ills of the world without glazing over them and requiring getting back to making a living instead of a life. 

I'll try writing more. It's been busy as a single father living alone in the city. But more friends are near and it has been nice to slowly reconnect with the community that I had to leave when I moved before my life saving spinal surgery in 2011. My life was spared, my marriage was not, a casualty of the vows we make but don't truly understand when things don't fit the fairytale. I have found the joys of being more present as a father and actually taking care of two beautiful young girls instead of them living in constant fear of losing their dad. They don't see my struggle and my relentless fight to just breathe some days. I hide it well and they need stability for as long as I can provide it for them. They are my life and have been my only reason for living and not giving up over the past three years. And for that, I am eternally grateful to them. One day, I'll share my story with them. For now, I just tell them everyday that I love them and let them focus on acting their age and living in the wonder years of life. Wouldn't it be so wonderful to be able to have those years all the days of our lives. 

The ignorance of youth isn't a bad thing. If they knew the horrors and reality of this world, it would give them a hopeless perspective of why bother with striving for more in a broken world. But I do want them to still strive for their dreams with ignorance of my reality. And that makes me smile to hear their pure childhood dreams and laughter. Never forget that. You can find happiness even after the real world sets you into unfiltered reality. If you can't find happiness, then change your world...and help others find that happiness as well.

Sky river reflections - Burlington, Vermont          Photo by Andy Barwick

We all walk across stepping stones crossing the river of life. Sometimes we make perfect leaps to the next stone. Sometimes these stones are too far and lead us into the cold river. Not to wash away, but to find a new stepping stone, pull ourselves up and begin a new path. 

And sometimes, just sometimes, there are people holding out a hand to lift you up from the river and put a warm blanket around you and give you rest. And they say, "continue your journey. Your life has so much more living to do". 

Somewhere, somehow I lost my way, my path, my direction. Looking down only brought me sorrow, sadness and pain. 

One day I stopped to look at a watery reflection of the clouds. And although I did not walk on the clouds, I found for the first time a lighted path to travel. 

The path was all around me. Everywhere the light gave me freedom to choose where I wanted to go. Unbound by expectations, I let the wind carry me forward. And when the wind stopped, I would sit and rest. I would stare into the heavens, day and night. I found solace there and healing. And when the wind came to my back again, I would find the strength to continue my journey. 

I am working to love with all my heart, giving everything without remorse or hesitation. Because I know that a gift is just that.  Giving a gift is something without expectation of return. It is the greatest thing to share with another. The gift of unbound love. And I am learning everyday, the amazing grace, patience and abundance of that path, that love. It is a journey that will never end even when my numbered days are over. 

The gift of loving another is not contained by space and time, by this cage of a body, by this idea that I am as small as my body. My spirit soars. My soul is uncontained. My light will always shine for many generations to come. And in that, I have found rest. I have found peace.

Letter to My Daughters - #42 Andy Barwick

To The Greatest Love of My Life,

Make mistakes, please. Never strive for perfection in any effort but always do your best. I say this not because perfection doesn’t exist, I say this because perfection is constantly redefined in your eyes and the eyes of others. Many times perfection is in the imperfect. It is in what society sees as flawed or not for public consumption. The truth is, we are all imperfect. Embracing the beauty within the “imperfect” is one of the most beautiful things you will find. 

See the world through your own eyes but always be curious as to how everyone else sees the world. This may be through conversation, through art, through reading and even through the suffering of others. You know that your father suffered a great deal in life. You don’t need to be reminded of that. I want you to go forward with your own story of life, not mine. What I do want you to carry forward is this piece of learning. Do not be defined by suffering. In fact, do not be defined by the ordinary, your job, your possessions or anything that isn’t really you. This is a lesson that has to be repeated infinitely in every generation. Define yourself by what gives you life, what makes you feel alive, how you truly live and not only by what you do for a living. Constantly challenge what defines you to be the best person you can be in making this world a better place. 

Always give first what you could buy. This doesn’t mean buy someone a house instead of buying a house for yourself. This means that always give to this world more than you take from it. Be a good steward of what you are given. This means giving to those less fortunate, to those in need and to those that are suffering. If you do not have financial means to give, always remember that the greatest gift you can give to mankind is the gift of service. Always be of service to others. Giving money is easy. We can forget what goes behind it passing over the true need. Being of service to someone takes an act of humility,grace and mercy. It is truly the greatest gift you can ever bestow upon another human being. 

Never say that you are blessed when have material possessions or have a financial windfall. Because if you say that you are blessed, this means that you are chosen by the universe to receive more than someone else, that you are better than someone else that you are more deserving than someone else. If you do use the term blessed, you must also use the word cursed if things don’t go right in your life. So I say this not to shun or judge those that say the word blessed but to keep in mind that people are chosen for certain things in life. Some are chosen to go through suffering and to go through great sadness. With great suffering, we are given the gift to pause life, examine it and teach others what we have learned so they do not have to suffer to learn this gift we have been given. That is not a curse. Some people are given great wealth and are given an easy life. But with great wealth and with great fortune comes great responsibility to help others. What I am saying in the end, is to always be thankful for what you have whether it be plentiful or very little. Always have gratitude for anything that is given to you whether great or small. Find the good in everything. Above all, always be thankful.

Always read. Throughout your life be hungry for knowledge, be hungry to learn from others. Our greatest lessons are from those that have experienced before us. I always say, “the hardest lesson I have learned in life is that you don’t have to learn things the hard way”. As my good friend Jen Pastiloff says, “be a tireless listener”. Always listen before speaking and wait your turn. Listening to someone is an act of putting them before you. Listening is an act of respecting what another has to say. With that being said, you should not be afraid of expressing your opinion or your thoughts on the matter. Because your thoughts and your reactions are just as important. Learning this lesson is something wonderful to have early on. Reading and listening to others is something that has to be repeated every generation because the knowledge isn’t passed down. Strive for a world to where everyone possesses knowledge and ignorance cannot be used as an excuse. 

These are my thoughts for today, October 1, 2014

With all my love, 

Dad