Things To Do In The Hospital

Have you ever sat in a hospital room for a day? How about a week? A month? At some point, we all reach that point of utter boredom.  We have watched all the TV we can stand, we have eaten all the cafeteria food we care to ever eat. So the question is, what do you do then?

Well, for me I had to constantly come up with new stuff to do. One thing I did was create a routine. I know it does not make sense but for me it worked. First I should say Julie and I typically swapped nights at the hospital. If it was the morning after my night, I would shower first thing. This always helped me feel more human again. I would then wait on Julie and then go grab breakfast. After rounds it was lunch time and we always tried to mix that up. On some days, I would walk 20 minutes away to grab lunch. Supper was usually take out from something different. That was a typical day.

I would play games with Weston, which never got old. We would ask the doctors if we could take him outside or at least for a walk. One of my fondest memories is of Weston going outside and smuggling in a worm. I never laughed so hard. Weston was in the CICU at the time.

Some days, it would not be nice enough to get outside. Days when I felt a little down, I would go to the "bridge", which was an area with lots of light between CICU and the step down unit. I was a place for me to go and be almost outside. People would be near but give me space and I could work out my feelings.

Updating everyone would take up some part of the day. Some days, I would post a lot,  some days, I would post nothing. I learned that I needed my space just like everyone else and did not have to post everyday or everything. I also learned I did not have to take every call and everyone understood. This was a great help, it allowed me to talk about Weston when I was ready and had news to share.

Some days, I could read a book, some days I could not. Some days we would just lay around and watch a movie. Going to the playroom was always good times. Weston would find something crazy to get into and it was good to see other kids making the best of their stay.

It was important for me to find variety, find time for myself, post when I wanted to, and enjoy Weston. Everyday was not perfect. Some days I was more snappy than I should have been. Others I was pretty good. The important thing was I was trying to do the best I could. So if you find yourself in the hospital for an extended stay, take it a day at a time and remember it is OK to feel how ever you feel. As always Hang on, Hang In, and Don't Quit.


AK

Finding Purpose.

Have you ever felt like you were lost? Everything seemed to be just be passing you by. Life has a strange way of moving on even when we do not want it to. Life can really suck some days.

When Weston was first diagnosed, it was all a blur. Things moved fast, I was just along for the ride. Then, we get the news that we need to go to Philadelphia. O.K. I said to myself. Weston beat the odds time and time again. He was a rock star. Although we spent the next three years in Philadelphia. Even on the hard days I always thought we got this. But, life goes on.

Weston was not to come home from Philadelphia. He lost his battle and I lost my way. The family all moved back to Tennessee and proceeded to learn to live together again. It was hard. I was broken. I felt as though I was in the middle of an ocean on a small raft. Everywhere I looked was water. Which way should I go? I had no idea, and really I did not care at the time.

This was a hard time for Julie and I. A man without purpose is not very fun to be around. I was grumpy and lost. I did not realize it at the time but I was. I needed a direction, but I could not bring myself to move. I just wanted to sit in my sorrow. Life marched forward whether I moved with it or not. Julie and the kids were the only reason I done anything back then.

The thing about life is you can only sit for so long. One day Julie said "hey why not finish your degree". I said "sure" with about that much gusto. I did not know it but Julie had just planted a seed. The more I thought about it the more it ate at me. I should finish my degree, why not I was so close. So, off I went in a direction and what do you I started to move. My little boat was finial moving. I was no longer stuck.

Finishing my degree will not happen until this August but, boy I can see the end of the tunnel. Our life has always had ups and downs, but for once I can see land. I can see one of the many destinations I want to visit. I am starting to learn to live again. Life is starting to take shape again. I have made many changes in our course as I sail toward graduation, but with Julie and the kids helping me I will make it. I now have a goal. Hope is there again.

The loss of Weston will leave a mark on my life forever. I think I am starting to turn a corner. The pain is starting to become more manageable. I will never forget him or stop hurting, but I must captain my ship. If I do not, then life will still march on. So, if you find yourself drifting one day, remember it is O.K. for a little while but life goes on. Grab the rudder and pick a direction and see what life has in store for you just over the horizon. As always Hang on, Hang In, and Don't Quit.


AK

Basketball Is Fun!

Julie and I have been letting the kids play basketball over the last few months. We just played our last games Saturday and what a blessing it was to be involved in this league. It is amazing to see what kids can learn in just a few short months. It was such a great thing for our family as Julie and I laughed, cheered, yelled, smiled, worried, and watched the kids grow in there basketball skills.

Ellie played and was one of the taller kids so she liked to run around with the ball and play keep away. I found this to be the funniest thing, some of the other parents may not have enjoyed it as much. Avery was able to score a point and was learning how to dribble. Emery and Abby played on the same team and where a fierce defensive combo. They both played with true determination and even won the championship for their age. Sutton from the start was just a ball of energy and you never truly knew what he was going to do. In his last game, Sutton was also playing good defense and making an impact on the court.

The coaches each took our kids and found what they could do and expanded on it. Every coach was a true blessing and taught each kid. Charlie the guy that ran the league was great at helping the kids learn what they did wrong and help them to do better. I only heard one word spoken out of place and Charlie was quick to call the person out and remind everyone why we where there. This was one of the best things we have every done as a family.

One of the things that I could not help but think was that Weston would have loved it. The way the crowed cheered for both team, especially for the kids that do not always get the ball. In some games a player would be "helped" a little so they could shine, Weston would have eaten this up. He may not have been able to play for very long, but he would have loved every minute of it. This is what tells me we made the right choice. I know if Weston would have loved it, then we made the right choice.

This experience has help me heal a little. I feel that our family is finally starting to do normal things. I  felt like we belong. We still stick out a little with our big group, but everyone was very nice and understanding that this was our kids first year. Although most will probably never know it they have helped this dad heal a little from a broken heart. Thank you to all that have put in the time to make my kids feel welcome. As always Hang on, Hang In, and Don't Quit.


AK

Being Thankful Is Hard!

Today is Thanksgiving, my favorite holiday. I love that we get together with family, eat food, and just enjoy each other. Today is a day for looking back at the year and seeing all the good things. And, you know what, this is hard.

It is not always easy to be thankful. Looking back at this year, I have many things to be thankful for, but my heart is not in it this year. Sure, every holiday has been hard since Weston died. I do not believe is what is going on this time. I can see something new this year in myself.

You see to be thankful, truly thankful, a person needs to look at their whole life. You must look back and see all of the good and the bad. Looking back at the bad makes me sad. I try to keep myself seeing the best in everything, being positive is very important. 

So, today as I look back and become a little sad, I will refocus myself on what I am thankful for. I will look toward the good. I will remember the hard times, but only dwell in the good. Thanksgiving will always be a time for remembrance.

Now, I am going to change how I see Thanksgiving. I will always see it as a day to be thankful, but starting this year I am going to see it as a day of hope. Thanksgiving is a day of hope, after looking back, and seeing the good of another year. I challenge you to find new hope this Thanksgiving. Always give thanks and remember the past but move forward toward the hope of tomorrow. Happy Thanksgiving to all!!



AK

It Will Be Here Soon, Feed the Fire 2017

This year has flown by, 2016 seems like a distant memory. It is funny how your memories change with time. I can remember somethings from my youth as clear as can be, but things yesterday are not always so clear. As I sit and reflect on my year, I am surprised at all that has happened. All of the kids seem to have had an explosion of growth this year. We are almost out of diapers, this is a great thing but a little sad. Time marches on ready or not.

November and December always seem to fly by, January and February are a little better for resting. March will mark the third year since Weston passed. March is hard. It is a time to remember him. It is a time to reflect. With March also comes the start of something good, Feed the Fire. Feed the Fire is my favorite thing we do all year. It provide me with a way to channel my grief into something good. It is a way for me to give back, in a small way, to the ones who give so much. 

When Weston was in the hospital, some of my favorite memories involve the firemen. They came and saw him in the hospital, invited us to visit with them, they adopted our family for Christmas, and sent packages from around the world, to help Weston feel the love. On one visit the firemen even set up the ladder truck and visited Weston in his 6th floor room. Talk about seeing a boy light up. When the hospital security guards told them they could not park there, you know what they said, we are here to see Weston. Still brings tears to my eyes.

Feed the Fire is on March 23rd and is our way of saying thank you. Thank you to all the first responders, all the heroes who make a difference everyday, even when they do not know it. Feed the Fire is about doing something nice for someone else. The first year we feed over 100 different places, last year it was over 200 and we went world wide. This year I am going to challenge you, I want to see this grow, 500 is my goal. I know we can do it. We received pictures both years and it is great to see the happiness in everyones eyes on that day.

How can you help?  It is easy on March 23rd, go feed a hero. Feed the Fire is a great chance to visit with your local first responders, tell them thank you. You can bring a hot meal for the day, or supplies to be used as needed. The important thing is that you spread the love that was shown to a little boy in the hospital. Contact your local departments and see what they need. Remember Feed the Fire is coming start planning today!

For more information go to  Feed the Fire on westonswarriors.com or check it out on Facebook look for more to come out between now and 2017! 

It Has Been A While.

The thing with life is that it keeps on going. Everyday we move further along in life. It is crazy. I have been thinking lately (scary thought right). Lots of things have been pulling at my heart lately. Why do people do the things they do? Why must me throw stones? Why do we forget, we are all just people? Why? Why? Why?

My heart was broken, when the heart community was rocked by a tragic event. Why people do the things they do, we may never know?  It is always a shame when the blood of the innocent is spilled. If you are having bad thoughts or you know someone who is, you must seek help. Life is short enough as it is. Violence is never the answer. People love you, get the help you need.

As always, Weston is heavy on my heart, as I struggle to make sense of his life. I miss him everyday. I stop in my tracks, when I think of how old and what he would be doing now. In many ways, he has taught me how to live life, in the now. As I learn to live my new life, I find some days are just hard.  I find I am more alone now, than every in my life. It is not that I want to be alone, it is more of I want to be with my family more. I love my family and will live my life to make things better for them.

We spent three years torn apart, and now, we find that living together is hard. We are all trying to find the new normal. What is normal? Who is normal? Do I even want to be normal? When life smacks you in the face, it is hard not to shift your priorities. I find many things less important as I focus my attention more on family than on the outside world. The greatest gift I have received is my wife and kids. Never take them for granted.

Keeton family 2015

I am not trying to complain, it is my hope that by sharing others will see that they are  not alone. Life is hard, life is tough, life is a challenge. I find that when I step back and slow down I see how lucky we are. Life stops being so hard. The struggle for me is to slow down and enjoy the moment I am in.

The whole country seems to be on edge. I think we all need to slow down and enjoy our families. The  amount of hate in this country right now is a shame. How did our country turn to so much hate. Why is it one way or the other. Last time I looked there are many different ways to do something. I believe we all need to fix our lives, before we look at others.

We all go through changes in life. Follow your heart.

Change is going to happen even if you do not like it. I deal with change best when I stop trying to fight it and embrace it. I do not have to like it, but I do have to change. If you find yourself struggling it is OK to find help. We all need help sometimes. Please remember Hang on, Hang in, and Don't Quit!!!


AK

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

Had A Good Day

I feel some days that I have been kick, spit on, knocked down, and sat upon, but not today. Why heck I do not know. I guess some days are just easier than others. I find myself often wondering will this get any better. Well, today it is. I would say this is a very big step. I have always tried to be up bet and see the bright side of things, but some days are just not that easy.

What are your keys to staying calm? I like to eat. (If you have seen me lately you can see I have done this a lot) I also like to watch some TV. (I also have done to much of this) When I really need to charge up I find it best to just be alone and think. Sometimes this mean taking a drive, other times maybe a hike. One time I woke very early and watched the sunrise on a local mountain. That was wonderful for my soul.

This will be the last post I put on Facebook or Twitter. From now on I will be just posting on here, I will not push this blog. If you would like to share it feel free. Also if you would like me to put you on an email list to get notices in your email, I will figure out how to do that. Please comment below and let me know what you want to hear about. As always Hang on, Hang in, Don't quit.

AK

Thank You!!!!!

Wow! Again you guys have blown me away. Feed The Fire was a huge success! I am blown away at how everyone seems to go above and beyond. All day I kept hearing how much fun everyone was having, and to be honest that is what Weston was all about. 

I saw an elf on the self, oh how Weston would have loved that. I saw lots of kiddos playing on fire trucks, Weston was always a big fan of that. The best thing I saw was people with smiles on their faces. Everyone I saw had a smile not one person looked sad, it was great.

We are still getting a finial count, but looks like we will be over 200 places feed. That is close to double last year. Feed The Fire could not be this great without the help of you guys. Several restaurants also got involved, again blown away. We are going to try and do something to thank the places that gave. If you go to one of these places, please tell them thank you for Feeding the Fire.

Looking to next year, what would you like to see different? How can we make it better? How can we get more people involved? Please comment below and let me know what you think.

From the Keeton family, THANK YOU!! You guys are amazing! You guys have always been there. So one more time from the bottom of my humbled heart, Thank You!!! You have really made Feed The Fire something special and we could not do it without you.

AK

Feed The Fire, A Little Thank You

Two years ago today was the hardest day of my life. My heart was broken that day. Weston died on that day. Every since I have had many mixed emotions. Anger has been one feeling. I am not angry at anyone just angry that such a young life was cut short. I also feel sad and morn the loss of a son who will never grow up. I also have feelings of acceptance. I accept that he is healed now and no longer suffering. It is never going to be easy, but......

Now two years later I have some hope. Hope that we have turned something so sad into a way to give back. I am always amazed at the heart of people. I read in the paper and see on the news how the world is just a wreck. People asking "Where are all the good people?" To me on days like today you get to find some of them, they will be the ones giving back to their heroes. They will also be the ones getting feed today. The Firemen, EMS, and Police all put their lives on the line to help others everyday. Today is just one day to say thank you.

So from the bottom of my broken heart THANK YOU. Thank you to all the ones doing the feeding and to all the ones being feed. Thank you for your time and effort. Thank you for making today a little easier. Thank you for help me honor Weston. 

As always Hang on, Hang in, and Don't quit.

AK

March Is Hard

Facebook has this cool thing where it will pull up old posts or pictures. It is called Time hop I do not have it but Julie does. Most of the time it is great to see old things she has posted, pictures from the past. In eleven of the twelve months it is great. March on the other hand is a hard month. You see Weston died on the 23rd of March 2014. It is a bitter sweet month so many memories are good but it is the month we lost our son.

Time hop has brought up many thing most Julie keeps to herself, but the ones she shares take my breath away. I love seeing pictures of Weston, but many pictures bring me back to the days in the hospital. After transplant we had such high hopes, by March things where not looking so good. The doctors had prepared us for this but if was not easy.

Weston's death is still hard to think about. I tear up when I think about losing one of my own. A parent is not meant to out live their kids. I do not know how other people deal with it, but for me I struggle everyday. It is the little things. When I look at Weston's older brother and know his best friend is gone. Look at Weston's little brother is not much easier they look so much alike. The girls miss him too. Our youngest baby never knew Weston here on earth but I can see his personality in her each day.

How does one truly recover from such a loss with all of these reminders. I take it a little at a time. Just make it though the week, day, or on real bad day just though the moment. I would say I am doing the best I can. I get up everyday determined to make it through. The family is getting along. The kids have kept growing, despite Julie strong objections otherwise. 

Julie has been busy with different heart groups. We just attended the CHF Gala in Philadelphia. Julie and I had a great time, we even snuck in a night alone (not an easy thing to do with seven curtain climber running around). I have been busy going back to school and with work. We both are member of the Philly heart moms (Julie) or Philly heart dads (Me) Facebook groups. The second annual Feed The Fire is about to kick off on March 23rd. If you would like to help out visit the Facebook page and sign up. 

March will always be a month full of memories. Some will be joyful, some will be sad. I know for myself I will look in the mirror in the morning and say "You got this". Life for me has not gone the way I thought it would, but I will just keep moving on. I would like to extend a special thank you to all who read and comment on this, it helps me knowing that people care. In case you have forgotten Hang on, Hang in, Don't quit

SECOND ANNUAL FEED THE FIRE

What Is Feed The Fire

Weston’s helmet at funeral service. March 2014

Feed the Fire was started in 2014 in the memory of Weston Keeton. 2014

Weston was a 7 year old boy, from TN, who was diagnosed with  congenital heart defect at 9 days old. Later he also suffered Pulmonary Hypertension. The last three years of his life was mostly spent in Children's Hospital of Philadelphia. Weston was full of life and loved firemen, police, and service members. The local 22 firemen association adopted Weston and his family. Upon his death Weston was honored with a fireman’s funeral. It is our hope that you will help “Feed the Fire” by giving back to your local hero, whether they are firemen, police, EMS, service members, anyone who is your hero. We will be doing this on March 23 2015. Hope to see you there.

“Do your little bit of good where you are; it's those little bits of good put together that overwhelm the world.”

― Desmond Tutu 

How We Did Last Year.

The first annual “Feed the Fire” was a fantastic success. I was blown away by the out pouring of support. People from around the world got together to show their support of their local fire departments. Over 100 fire stations were fed. Lots of smiles and the story of one little boy and his love of helping people was told.

The Keeton family taking breakfast to Kingsport Fire Department. March 23 2015

“How far that little candle throws his beams! So shines a good deed in a weary world.”

― William Shakespeare, The Merchant of Venice

Hopes For This Year!!

This Year I would love to feed twice the number we had last year. I know we can do it. I would love to see more pictures. I would love to see people take this on as project, form teams. We are so grateful for anything you can do to help. Stay tuned for more info at our Facebook page. . Losing Weston is hard but by helping to give back to the people who reached out makes it a little easier. I am, as always in awe of the support we received and thankful for what you do.



AK 

Time With The Kids

This weekend I am getting a chance to play "stay at home dad".  This could be one of the hardest things that I have ever done. In our marriage, I have always been the one who went to work and left Julie, at home, to take care of the kids. Well, this weekend she has "R-U-N-D-O-F-T" to a well deserved mother's retreat. I am so happy that she is getting a chance to get some time off. Julie will come back recharged and reinvigorated ready to take life by the horns. Me, on the other hand, I am way beyond my depth. Sure, I have watched the kids before, I have even taken them places all on my own.  Heck, I even bring them all back (really a small miracle). On the other hand, I have never been left alone with them for this long (and boy is it getting long LOL).

Let me just tell you how things are going. It has constantly rained the whole weekend. I mean, come on, I know there is a hurricane and all but, gee, could you give a brother a break. The kids need to get out and exercise and I need some quiet.  They can only speak on two levels-so quiet that you can not hear them or at a ear piercing level that you can't ignore. Where are my ear plugs again? For those of you who may not know, we have 7 children.  That's right-seven, I am greatly out numbered (send help!!!!!). Thank you Netflix for your vast selection of movies.  Unfortunately, the kids only want to watch five different movies and you only play two of them at once on separate tv’s. The Pirate Fairy is good and all but, after twenty times, it gets a little old. 

What is that you say, surely I can wrangle this crowd of wild beasts at feeding time. Well, let me just tell you how feeding time goes.  I prepare a loving meal. Of course half of the kids will not touch it, which is good, because the other half act as though they have never eaten (watch your fingers). It is madness.  I have seen wild animals act better than this. One of the benefits of having so many kids is they can clear the table like nothing I have ever seen. They can be civil right before we eat ,you know while we are waiting for Grace to be said, but once we say Amen, it is a free for all. It is nice to see the food that you have cooked being swallowed whole, really makes the effort seem worth it.

The cherry on top of this wonderful Dad time is Sutton, my youngest son, has decided that it would be a great time to get the stomach bug. Oh My Word!!!!!! The bathroom is a war zone.  It is not safe to go in there unless you have someone posted at the door. He has been quite the little trooper about it though-not complaining more than once ever minute. I mean come on the four hotdogs you had for lunch and the six pieces of pizza you had for supper could not possibly have anything to do with your current stomach problems. Send in the Green Berets, this Dad is getting overwhelmed.

Now, there has been some good old fashioned family bonding going down as well. Oh, you two want to fight constantly, fine, go hug each other for the next hour. See how much you love each other now. I have seen two working in perfect unity, only to find out they where working together only to take out another one. I have seen a new side of my kids. They can be well organized when they want, and what they can do together is scary. It is only day two of my four day sentence but I am not sure I am going to make it. I think they smell the fear.

Ok all joking aside this is quite an adventure I have found myself in. I had thought we would go fishing, go on some walks, maybe go to the mall, and if they were extra good go to the movies-you know what they say about the plans of men.  It is amazing how different they act on the second day Mom has been gone. I can not help but love my little band of heathens.  They are sweet and loving bunch (when they want something). 

I hope you have enjoyed the pains of learning to be a "stay at home dad" the learning curve is steep. Remember as always Hang on, Hang in, and Don't quit.

AK

This is mostly written for humorous purpose but if you don't hear from me by Tuesday send in help!!!!!!!!!!!

A Case of the I Don't Cares.

Have you ever had a bad day? How about a day where you just felt down? I have, and continue to have them lately. These days are always hard, seems as though the day will never end. I have a hard time finding my motivation. It is never easy to get rolling when you just don't seem to care what happens.

Most of the time it is the rainy days, or the winter days where I can not get outside. Lately, it has been most any day. I have been struggling to shake them. It is like being in a fog and just not caring. Do not misunderstand, I seem just fine on the outside, most people would never notice. It is almost like I can not get enough sleep. I am physically tired, my body will hurt where it normally does not. It is funny how easy it is to come up with excuses of why I do not want to do something. I am to tired, I need to do something on the Internet, or many other of the easy excuses we all use. 

So, what do you do to kick the I Don't Cares out of your life? Well, for me going for a walk outside always has been a way for me to clear my head. It is good for my soul to be outside, I do not think humans are meant to be trapped inside all the time. Another thing for me is to start and finish a project. It is always good to finish a project, it gives me a sense of accomplishment. I try to find a little project one I think I can get a quick victory and remind myself things are going to be OK. If I just can't seem to shake the I Don't Cares, then I can always spend time playing with the kids. No matter how bad I have the I Don't Cares the kids are always an instant cure. 

So what do you do when you have the I Don't Cares? Do you go for a walk? Do you call a friend? Let me know in the comments below. I find as we move into the fall to be followed by winter, it is best to remember we all get the I Don't Cares and you are not alone. If nothing else seems to work just make it to the next day with the hope of a new day and new feelings. To me the most important thing is to Hang on, Hang in, and Don't quit.

AK

My Son Is Dying And I Have To Go Back To Work.

Now What?

Having a child in the hospital sucks. That is the best word for it. It does not matter if it is for something not life threatening or if they are critically ill.  It just sucks. 

It is an emotional roller coaster that can take you from feeling great to the worst day of your life. It is loud, there are bright lights everywhere, and a cold and unwelcoming environment. The hospital is not meant to be a place to live. People go there to get help and that is what hospital's do very well. They help the ones they can.

Julie and I had no idea that when we left home that we would not return for three years and would not be bringing our son back. We first made the trip because Weston was having episodes, and no one in the country could tell us what they where. So, we left our home in Tennessee to search out answers at Children's Hospital of Philadelphia.

Weston was in the hospital about 8 months when the company I worked for said I needed to come back to work. This was not all bad. I was getting restless, feeling useless waiting for something to work so we could take Weston home and be a family again. Also, like most families we needed the money. It is hard to live away from home with no income and pay the bills, our savings where dangerously low.

With great sorrow and the knowledge this is what needs to be done, I leave my family, including newborn daughter, behind and start back to Tennessee to work. I imagine this must have been what it was like for the men in during the great depression that had to leave their families to go find work. It is a lonely thing to be at home and your heart is 500 miles away.

One of the things Julie and I did ,that helped ease the distance between us, was we would communicate (usually texting) at least once a day.  She would give me updates and I would tell her how much I missed her. (She is my best friend after all) I would work as much as a I could to help keep my mind off of the separation. It was easier to work than to sit in an empty house, while my mind wondered if I was doing the right thing.

The days would go fast while I was at work, but the time off of work would crawl as I had time to worry. We thought about me trying to transfer to another plant site closer to Philadelphia, but we did not want to leave our home. We always wanted to have a place to come back to. Looking back, I think we made the right choice.

At first we tried to Skype but that proved to be hard for me and the kids. It was amazing though how during some of my darkest days someone, usually someone kinda random, would say something to me to help brighten my day. Those people will probably never know how their kind words helped me through my most troubled days. I would just like to thank any and everyone who ever said or thought nice things to me or my family.

It was a time of content stress, I never knew when Julie would call and say "I need you now Weston is......." I would have to drop whatever I was doing (day or night or even right after just getting home from Philadelphia) and drive to Philadelphia. Weston could go from "we don't think he is going to make it" to sitting up in bed eating flaming hot Cheetos in the time it would take me to drive the 10 hours to Philadelphia. I would get to see my family and recharge my batteries but would always need to "turn and burn" so I could get back to work to provide for the family.

Being the only one bring in money is a huge burden to carry. I did not always carry it well. I would lash out at Julie in my frustrations of trying to balance making money and being there for my family. Some nights, I would cry myself to sleep, no one knew this but me. I was hurting, I needed them they gave me strength and the distance seemed to great. The next day, I would put on my big boy pants and  face the new day. 

Luckily for me I worked around a bunch of people who understood what I was going through. They would ask how I was doing and I would always answer "I am fine" and they understood. (Here is my earlier Blog about how fine I really was.) They would listen on the rare days I would talk about what I was going through and they would pretend not to notice if a tear came down my cheek. They where a great group and helped me as much as I would allow them to. 

If you are making the choice to go back to work or stay at the hospital and risk financial ruin, I understand. This is not a choice to be made lightly. Julie and I struggled with this choice not just the first time but throughout Weston's stay in Philadelphia. We made the right choice for our family at the time. I am comforted in the thought that I did the best I could and Julie and I always tried to support each other as best we could. Being away from your family is hard, but sometime we have to wear our big boy pants and do what is best for the whole family in the long run.

If you are every faced with a decision about your family remember. It is your family. It is your life. Only you can make the right choice for your family. Do the best you can to make your choice and don't be afraid to change it if you have to. As always Hang on, Hang in, and Don't quit.

AK

Bitter Sweet Memories

Do you like to hike? I do and I love to hike with the family. I love the idea of experiencing new exciting outdoor things with the ones that are closest to me. So today we took a hike with the whole family, thats right Julie and I and all 7 children (10 down to 9 months). Crazy right, we made it, we did about a mile and half and all went pretty well. It was fun, exciting, and above all it was a memory maker.

This day makes me remember before Weston was in Philadelphia, back when I would drag him along on my hikes. Weston loved to go with me on hikes, well he loved the idea. I would always end up carrying him and he would revel in being carried. 

Father's Day one year Julie and I thought, "Hey I got a great idea" lets hike around the lake at Bays Mountain. This is about 2.3 miles and a nice scenic walk around Kingsport reservoir on a fairly nice hiking path. Easton our oldest was about 2, Weston was one and half, and Julie was pregnant with Emery. We took a stroller and all was well until we hit the trail. The trail was not, I repeat not, set up for strollers, toddlers, or pregnant angry women. This was a long, hot, and argue filled trip (I think Julie thought maybe she should divorce me just to avoid future trips like this. lol) We where able to survive and stay married so all was well.

A few years later we made a trip to Laurel Falls in Hampton, TN. This time instead of going in blind we researched the hike and learned it was and easy almost level hike except for the last 3 tenths of a mile. Three tenths of a mile how bad can that be. Well let me tell you it was horrible. We walk in and get to the last three tenth and we are looking at a decent down this large stone steps for the next three tenths. The steeps where LARGE, especially for the little kids. We made it and the kids where able to play in the water and had a great time. Then, we looked back up the steps of doom. I carried one on my back and one on my front for most of the trip back up these steps. At the the top was a large rock kinda like a table, where I promptly laid down and tried to die. By the end of this hike, we where both carrying one child or two and a nice lady we meet was carrying another. Again, Julie (my non-outdoorsy wife) had thoughts of leaving me.  I think and after that one I didn't blame her. We made great memories again and survived but just barely. 

Now ever time the family goes on a hike I have feeling of bitter sweetness. I am reminded of the times we had Weston along and even though I would have to carry him a lot he always had a great time. Oh, and today I don't think Julie wanted to divorce me, I must be getting better at picking more family friendly hikes. As a family we made many a memory on the trail, not just the hiking trail but also on the trail of life. I encourage you to always take life by the horns and go forth in life and make mistakes, get messy, and above all make memories. Never forget to Hang on, Hang in, and Don't quit.

AK

You Are Not The Wife I Married!

And I Love That.

I have been married almost 11 years. Just to think about that is amazing. How have I been so lucky to marry a woman who would put up with me for nearly 11 years?   Insane right? At first we where just two kids in love, with the world at our finger tips. Then, we grew up when faced with a terminally ill child.  Lately, we have been learning to love again after the death of our son Weston.

Julie and I met on her birthday. I knew from the moment I meet her I wanted to marry her. She was fun, smelled good, and looked great (also she had an it factor). I had to pursue her pretty hard but she was no match for my sweet, shy self. I was able to win her over with my dashing good looks and charm. We were happy and in love with one child and another on the way.

After our second son was born, on his ninth day birthday, we found out he had a heart defect and our lives have never been the same. But, Julie and I where able to stiffen ourselves and move past the diagnosis. We pulled together and bonded over our joint struggle to keep our son alive. It was not an easy thing to do but with her great strength I was able to do what I needed to do and support our family.

Our struggle was lost when Weston died. This was one of the worst days of my life. It sucked. Julie was there with me and I was there for her. Together we have been picking up a new struggle, the struggle to continue on even when life kicks you in the nuts. It has not been easy. We have been on the edge of divorce. We have both had bad days and good days. 

On my wedding day, I married the girl of my dreams. Little did I know, what a journey we would be going though. I am amazed everyday at Julie's strength, resolve, character, and ability to put up with me. I have heard it said many times "that behind every great man is an even greater woman". I would have to say that my take would be "beside of this man stand the greatest woman" because after everything we have been through we both stand next to each other. 

Just because life has not been nice to you does not mean you can just lay around and whine.  The woman I married nearly 11 years ago is not the woman I see everyday, and I love that. Julie has grown into the most wonderful of wife and is truly my best friend. So, if life gets you feeling down remember Hang in, Hang on, and Don't quit.

AK

Four Years Wow!

Do you know what you where doing four years ago today? I do. We were taking Weston to Philadelphia for the start of a long hard road. If I knew then what I know now, would I have started on this path?   I don't know.

Firs,t you need to know that Weston was having these episode that looked kinda like seizure, but where as we later found out Pulmonary Hypertension crises. These things where scary as heck and no one could tell us what they where or what to do about them. Finally, Julie was able to video one and send it to CHOP.  We had no idea this one video would rock our world and almost break our family up. (I guess it did for awhile but not forever)

Almost immediately we received a call saying we had to come to CHOP or they would not see us anymore. I was kinda pissed at hearing this news. I needed to work to support my family and no one else had been concerned about these episodes before so who does this person think they are. We talk to them and explained the we lived over 530 miles away and could not just come right up. (plus we did have other kids that needed to be watched)

So, on that fateful day June 1, 2011, we made the long trip to Philadelphia, where we made lots of friends and spent over 3 years of our lives. Looking back on the past is always hard. The "if only" always get in my head. I always have to tell myself you can only make a decision once then you have to live with it. I am not saying I would have changed a lot of what we did but you can't help but thing how things could have turned out different.

I guess the big thing to remember is love the ones you love today because tomorrow my never come. It sucks losing Weston but know we did the best we could help us with the pain. CHOP will always hold a special place in my heart, along with all our friend and adopted families. As I think about moving on with my life I just want to say I Love You Weston. As always Hang on, Hang in, and Don't quit.

AK