My Best Keep Secret

Weston's story has been told many times. Around the world, many people have heard of the long, heart breaking, and powerful story, that is his life's story. Knowing the number of lives, he touched will probably never be known, but I would say generations have been changed due to him.

Knowing that, it is still a wonderful thing to hear about someone doing something nice, just to pay it forward. "Feed the Fire" was such a shot of joy to my heart. March is always the hardest part of the year for us. Hearing how Weston's story is still making an impact helps ease the hurt. The best is when someone does not know who I am, and they tell a story about how they heard, or did something because of Weston.

As time goes on, the pain of his passing still haunts me. The anger, frustration, and sadness try to take hold of my life. Let me tell you, sorrow is not an easy thing to shake. Have you heard it takes a village to raise a child? Well, it takes the whole world, to recover from the loss of one.

Many people have asked, how do you guys do what you do? Or something very similar. Well, I will tell you, lean in close and raise your right hand. Now, do you promise to keep this a secret for as long as it takes you to read the rest of this post. Alright, I will tell you....

But, first I must tell you about Julie. If you have not met her she is the best. I could not have gotten any luckier, than to marry someone like her. I could not have made it this far in life without her. She truly is my better half. If I have a weakness, it will be something she is strong in. Julie completes me. On days when I am struggling to adjust to life without Weston, she is there to help pick me up.

Oh what is that? you want the secret. Well now hold on I have just a few more....... Ok Ok I will tell you. The secret to my life, well besides family, my wife, and of course hope in the future, is.........well....YOU. You my extended family, the ones I know and the ones I may never know. You are what help get me through the darkest of days. Without you there would be no paying it forward, Feed the Fire could not go one, and our hope in the future would not be so real. So, my dear reader, supporter, and friend how do I say thank you? The only way I know how. Thank YOU!

You are the reason I can Hang on, Hang in, and Don't quit.


AK

Words Of Wisdom

Have you ever been talking to someone and then BAM! they lay out something big. I am not talking about normal big, I mean life changing big. I can thing of at least two times in my life. It was a paradigm shift for me both times. As a matter of fact it is one of those things that stick with you. Gently nudging you in the back recesses of your mind. Ever so slightly you start to see the whole picture, because at the time you are to wrapped up in life to notice what was just said to you.

Now on to the good stuff, the first time was during one of our trips to Johnson City Medical Center for Weston. Julie and I where taking in what the Doctors had just told us. If I remember correctly the Doctors wanted to do something new to Weston and we where unsure of what to do. The Doctors had left us to make up our minds on what to do. Now my whole life up until this point had been to always trust that the Doctor knew best. This time we where unsure and not wanting to do what the Doctors wanted to do. Then like a wise old monk, our nurse came to us with the best advice ever. (at least for where we where at the time) She said "You know you can say No to the Doctor". I was blown away. I had always done whatever the Doctor wanted to do. This has lead to many a Doctor's discomfort, as Julie and I have advocated for our kids.

The other day wisdom was bestowed upon me again. I was making a comment about how "I hate that I do not like something but I do not like it". Out of the blue, my friend, like the Dahlia Lama, himself, looked over at me and says "You do know, it is OK, not to like something". This may not sound like much but I had never considered that it was Ok not to like something that everyone else liked. I have always tried to "be nice" and apologize for not liking something. The thing is, this has been a life long problem for me. As I thought of this little nugget of wisdom, I keep coming back to "man he is right". How many times have I apologized for having my own opinion or not liking something that others like. You know what, it is OK, not to like something (unless it is Julie's cooking, then thats a whole other can of worms) and have my own opinions.

My challenge for myself and you if you choose, is to take these two pieces of gold and run with them. I am going to continue to tell Doctors no when I believe they are wrong. I am going to stop apologizing for my opinions and know that it is Ok not to like stuff everyone else likes. If you have some pearls of wisdom to pass my way please comment below. Remember Hang on, Hang in, and Don't quit.



AK

Somethings Never Change

The more things change in my life, the more I see them the same. I am often faced with the similar challenges, whether it is having to make hard choices or learning to have more patience. Life always seems to challenge you in ways that make you grow or just makes you mad. 

Most people will never go through having to deal with the death of a child, who was in the hospital as much as or more, than he was at home. This experience has changed me, for the better I would say. I have seen now that, family is what matters. I often have to remind myself that it is OK to just enjoy your family. 

It would have been easy for me to turn to work to deal with my loss. I could just work and spend little time at home. This would have helped my career and been a much easier path, but I would have missed out on a lot of good times. My family is what I want now more than anything. I just want to be with them. It is not always fun times, but everyday I am reminded this is right where I belong.

Today on Facebook I saw a quote that I just loved. "Be decisive. Right or wrong, make a decision. The road of life is paved with flat squirrels who couldn't make a decision" (unknown) Wow, powerful right, one thing we learned early in Weston's life was that making decision, no matter how hard, was an important thing to do. When dealing with a child that is sick you have to choose, no one else can, sure doctor can help but you must choose.

The other day our youngest (18 months) started drawing on the walls. Everyone else had just stopped drawing on the wall. This artwork on the walls used to make me mad, I would have to clean it and if it was bad enough I would have to paint the walls again. This time was different, I just could not seem to get that worked up about it. As a matter of fact I almost thought it was funny. It seems only fitting that our last would follow in the footsteps of the rest of the kids and give us great pieces of art. 

Work was such a focus of mine for years. All I could think of was to work, to make money for me and the family. My first year at one job I worked over 600 hours of overtime. That was from April-December, when did I have time for the family. That is over 25% of an average year, most people work around 2000 hours a year. I missed out on quite a bit that year, in the kids lives. Last year I had less than 150 hour of overtime, and most of that was not by choice. Can you see the change.

My goal now is to be a better person everyday. Everyday I work on it, some days are better than others. I still get angry when I should not, I still have to be careful when overtime is available. It is so easy to fall back into our old ways, but I challenge you to take the road less traveled. Do not go quietly into that night. Make bold choices and be patience with the ones you love. Also Hang on, Hang in, Don't quit.

AK