Monday, May 25, 2015

Fun With the Family




Fun With The Family


Today is Memorial Day, a day to remember the ones who gave their all for our country.  It is also a day most people spend with their family, grill out, play games, just spend time with family, etc..... On Saturday, we placed flags on the graves at our local VA hospital, with all the local Boy Scout Troops. How amazing it was to see so many youths doing a good deed and showing respect for our fallen warriors. I was so blessed to be ask to help. 

Today, we are hanging out at the house we built a fire pit. We went to Lowe's and got the parts and worked on it this afternoon. Now, as I write this we are sitting around the fire and waiting to cook hot dogs. This has been a fun weekend filled with lots of family time. In the back of my mind I am reminded that the family is not complete. We are and will always be a family incomplete. 

At the ceremony they played Taps before we placed the American Flags, this always reminds me of Weston's service. It reminds me of all the people who have gone on and all we can do is remember the ones we lost. We were able to place an American flag on my grandfather's grave as well. It was nice to be able to tell the kids stories about him and they could relate to it just a little more.

So, as you go about your Memorial Day and the following days, I hope you remember the ones who gave their all. Also spend a little time with your family, you never know when you will speak your last to the ones you love. Weston will always warm my heart and break it at the same time. If you have kids remember hold them extra tight and don't let go. Above all remember Hang on, Hang in, and Don't quit.


AK

Saturday, May 16, 2015

It's the Small Things




It's the Small Things


Do you want to run a 5k? Of course, I would love to watch you. This is how my wife talked me into a 5k. I would have never guessed how one simple thing could bring so many smiles. First I got to see the lady and one of my great friends who also introduced Julie and me. Then, I completed my first 5k in honor of Leia my great friend. (oh by the way I just walked it but hey that's a start) We finished with a taste of barbecue.

It warms my heart to see friends and my friend Leia is a very special one. She was one of my buddies from High School. I burnt her with a car lighter and she is still my friend (on accident). She introduced Julie and I. To say Leia helped start it all, is not saying to much. She is also one of my heroes as she fights cancer and does it with style. Just being ask to walk this with her was a great honor. (oh she ran it, I know I am a wuss)

5k race? who would have thought it?  not this guy. I learned to drive and have tried to forget how to run. This was the SPF 5k to raise awareness of melanoma. I would have never guess how much fun this would have been. Julie, Kinley, and I ready ourselves not knowing what to expect. (Kinley is our baby) My goal was smile finish and not be last. Mission accomplished and under a hour. Julie and I had time to look at our great city of Kingsport and to talk. It is always a good thing when we can do something together and talk. It was hot as the sun bet down on us, trying to break our spirit, but we pushed on. At the end Julie and I finished together to the cheers of the crowd (OK maybe 10 people).

Afterwards we met up with Leia and the faster ones of our group for some photos and good times. They were having a barbecue tasting, can you say yummy. This is how we roll in my home town you do a 5k and then eat barbecue until you can not eat anymore. We where able to try ribs from lots of different places. My most favorite thing was called "atomic buffalo turd" best thing ever. It was a jalapeno with cream cheese and meat filling, wrapped in bacon and if that's not good enough it was smoked to perfection. The ribs where also mouth watering. I wish you could have been there to smell it.

I know what your thinking what does this have to do with my heart, I will tell ya just hang in there. Weston loved to do things with people to be out having fun doing new things. Weston also had a warm place in his heart for Leia. She was always a fun person to hang with. The 5k gave me some time to miss Weston in a good way and think of some good times. Seeing Leia also brought back such good memories from high school, to meeting Julie, to playing with the kids. It just all warmed my heart. Weston also loved trying new foods. A barbecue tasting would have been right up his alley. With a name like "atomic buffalo turd" I know Weston would have been smiling (I know I was).

So, today, I was reminded to take the time for life as you live it. Do not be afraid to try new things. Old friends are good for the soul. Cancer sucks but we knew that. Time with your wife is never wasted and even better if there is barbecue. I challenge you to do something this month, do something new, do something big or small, just do something and post it below and lets see what we all can do. As always Hang on, Hang in, and Don't quit.


AK

Sunday, May 10, 2015

A Bonus Mother's Day Blog





Mother's Day



This is our second Mother's day since Weston passed away. It was not easy. Easy is not a word we get to use when it comes to holidays anymore. I hope with time we will do holidays better, as for now they suck more than they are good. Please, do not think I am being unfair to the holiday. I know it is not the holidays' fault. 

Mother's day has been one of my hardest holidays. As a husband, I want to do what I can for my wife. When I see her hurting it makes me angry. In this case, my anger is at nothing I can change. I wish I could make it better, but I can see her hurt, and it hurts me. 

Today, we went to see the horses at Grayson Highlands it was fun and a good family trip. It was sad not having Weston along for the fun. I know he was there in spirit but I miss him. Julie misses him too and I could see the hurt a little more this Mother's day.

We will move on. We will not give up hope. We will not forget. These are the words that help me get through days that are a little harder than most. When I feel down I just remember that Weston is not hurting anymore. I know he is at peace. I do not have to like it (I really hate it to be honest) but I do have to live on. To all the moms out there Hang on, Hang in, and Don't quit.




AK

Saturday, May 9, 2015

What Nurse's Taught Me






What Nurse's Taught Me


Nurses are great people. They do things most people would not do. They are there for people in the hardest moment of their lives and the best moments. Doctors would find it hard to operate without nurses, probably impossible. In honor of nurse's week I will give you five things I learned from nurses.

The one that has been with me from almost the beginning of our journey with Weston is it is OK to say no to the doctor. I know this sounds simple but before a nurse told us this we never thought to question the doctors. We used this a lot if you do not believe me just ask the crushed residents and fellows Julie and I left in our wake when they wanted to change something we did not approve of (we still became great friends with most of them). Thank you nurse's for helping us find our voices.

It is hard to bend the rules but when you can it is so worth it. Weston's nurses help us push to make Weston's life in the hospital the best it can be. I know of one nurse who had never given a child a bath, granted this was in the CICU so probably not an everyday thing, but this nurse pushed forward and made it happen. Weston was always happy to take a bath. Thank you for looking after Weston's needs.

I learned that even when things do not work out like you hoped it is better to have loved and lost than to never have loved before. I know may nurses where hurt when Weston passed away. I could see it in their eyes. I could see they where hurting just like me. This love for Weston is also present now as we have stayed in touch with some of them and I can still feel the love they have for Weston and our family. How they do this and make it though each day is a testimony to a nurse's loving spirit. Thank you for loving my family.

Nurse's taught me because something looks hard does not mean you can not learn it. When we started the journey with Weston almost nine years ago I did not know much about sick children. I have learned so much since then and most of it thanks to nurses. We would go to rounds and all the doctors would talk and most of the time for me would use words I did not understand. Thanks to some wonderful nurses I learned what these words meant and why they where important to Weston. When Weston received his trach, it was nurses who help me learn what I need to do. Nurses where in the room while we grieved over the loss of Weston, just to get us what we needed or grieve with us. Thank you for all you taught us even when you did not know you where doing it.

The last example is nurses helped save my marriage. How they did this is a wonderful example of nurses going above and beyond. On the days of major surgery it is hard to remember to eat and take the time to take care of yourself. Who is there telling you "you need to go eat" your nurse. Who is there to tell you "it is OK go and try and sleep we will call you if anything changes" your nurse. The nurses would tell us we need to go and be with each other. One nurse told us "we are the most expense childcare you can have" boy was she right. They where also the best. The nurse would always encourage us to use the hospital services so we could talk to someone. Thank you for taking care of my wife.

Nurses are wonderful people they do a job most people could not do. They are your child's best friend and will even help answer some of life's hard questions. They get yelled at by doctors, other nurses, hospital staff, and even parents, do they complain, no they do their job. They are there to help pick you up when you are having a bad day. They can help find new places to eat, lets face it the hospital cafeteria can only be eaten so many times. Nurses to me are the unsung heroes of the medical field they are often forgotten, not by me. Thank you to every nurse who has ever been there for my family and me. Thank you, your support was and is greatly appreciated. So as always Hang on, Hang in, and Don't quit.


AK

Sunday, May 3, 2015

Marriage




Marriage


How do you guys stay married after all you have gone though? Tough question, right?  This is a question that I have received. How do you answer such a question? This is not an easy question. One of my favorite answers is, I don't know. I will give you a glimpse into my marriage and maybe this can help answer the question.

The early years wh\ere crazy we lived with both of my Julie's sisters (bad move for a good marriage or maybe not). We had guardianship of her youngest sister. Two twenty-two year olds trying to raise a teenager-talk about hard on a marriage.  We had two kids, one was Weston who we found out had a heart problem at nine days old. It was stressful but always entertaining. We survived and moved out on our own after her sister turned eighteen. It was not easy but we made the best of it.

Our next big challenge was the illness that was a severe congenital heart defect and pulmonary Hypertension. Wow, talk about getting kick where it hurts. 50% of marriage end right there with the diagnosis. Each surgery would also take 50% of those left, but we hung in there. We fought and yelled. We laughed and we cried. We talked about divorce a lot but never did we go through with it. What would I do if I lost my best friend, how would I make it though life without her? We made it during our stays at Duke and our eventually move to CHOP.

Children's Hospital of Philadelphia-talk about an impressive place. Three years, Julie called CHOP and the surrounding area home. I stayed as long as I could, but like most couple had to go back home and work to keep our insurance and pay bills. Separation kills a lot of marriages with each month killing more couples. We would talk each night on the phone, but this was not the same as sleeping next to each other. This was some of our darkest times for our marriage. I was lonely and sad. We would talk about divorce, divorce was on my mind. How much easier it would have been for me just to walk away. I would have thoughts of moving far away and forgetting my family to start over in a new place. In my heart, I knew these thoughts would not give me what I wanted. It was just fantasy.

Now, we face our toughest challenge yet, the death of our child and moving back together. Losing Weston was almost too much, it nearly ended it all. Then, on top of this you add moving a stranger back into your daily life. It was hard three years mostly apart is not great for a marriage. When Julie moved back, I would think to myself, this is my stuff stop touching it. We have moved on from this, but sometimes in the back of my mind I can still feel those thoughts, who are you and what are you doing in my house? 

One thing that I think helps us is we are not afraid to fight, we get our feelings out there. We also talk to each other, this is very important for us. Our dreams and hopes are shared. My love for my wife is always growing. She does something everyday that makes me fall in love with her more each day. We truly are best friends. 

Why has my marriage survived this long? How do we do it?  I still don't know, maybe we are just to lazy to getting divorced that seems like a lot of work. I think marriage takes time and work. There is not one path to staying married you must fine your own path. It will not be easy, but it will be worth it. So remember Hang on, Hang in, and Don't quit.



AK