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05/16/2008

 

Everyone knows someone who has died.  If you are reading this you probably knew Daegen or knew of him.  The point is, each and every one of you have lost someone, a husband, wife, mom, dad, grandma, grandpa, brother, sister, son, daughter, niece, nephew, cousin, aunt, uncle or someone else close to you.  The reason I am talking about this is because Janelle and I saw the movie “The Bucket List” with Morgan Freeman and Jack Nicholson.  During the movie I began thinking of my own ‘Bucket List’ and wondered what would be on it.  I began to reflect on Daegen’s ‘Bucket List’ and wondered what it would be today.  Daegen’s list was very short because he was only 4 ˝ when he passed away.  His mind was limited to that of a 4 year old so he could not list things like drive a Shelby Mustang, skydiving, climbing pyramids and so forth.  We were blessed that Daegen was able to do some of the things on his ‘Bucket List’.  Not many of us are given the opportunity to live our life so we can complete our own list.  Tim McGraw’s song “Live Like You Were Dying” points to the importance of doing things as if today were your last day to do them.  I began to think what other people would put on their ‘Bucket List’.  I became intrigued trying to figure out what others would want to do before they died.   

I would like to ask that each of you either respond to my e-mail with at least one item you would put on your own ‘Bucket List’ or sign the guestbook with something you would put on your ‘Bucket List’.  I will forward the information to the webmaster and start creating the worlds largest ‘Bucket List’.  I think things could get interesting to find out what it is that would make each of us happy before we died.  Be creative and enjoy this experiment.  We all might learn something about others or be reminded of a long lost dream we had as kids that we would like to try and fulfill now.   

Another key part of the movie was the two questions that Morgan Freeman said Ancient Egyptians were asked before the passed into Heaven.  1.  Have you experienced Joy in your life?  2.  Has your life brought Joy to others?  I think without a doubt Daegen would answer ‘Yes’ to both questions.  If I try to answer those two questions myself I am not sure if I would be able to answer ‘Yes’.  You see, since Daegen was diagnosed, since he battled his cancer and since he has died my life has really been focused on Daegen, Alexa, Janelle and I and sharing Daegen with everyone that I can.  I am not sure my own life has brought Joy to others.  Maybe I will start focusing on doing that knowing that Daegen was able to accomplish that in 4 ˝ years.  He still continues to bring Joy to others 2 ˝ years after he passed away. 

 Janelle and I were talking all the way home from the movie about several things in Daegen’s life.  Between the tears and extreme pain in my head, I assume from the crying and pressure building up thinking about losing Daegen we began talking about how Daegen touched our lives and others.  We were discussing Daegen’s ‘Bucket List’ about riding in a helicopter, which he was able to do, riding on a golf cart, which he was able to do, riding on Thomas the Train, which he was able to do when I wondered if being involved in our 15th Wedding Anniversary Renewal was something that would have been on his list.  Janelle and I came to the conclusion that yes it was on his list.  Daegen wanted so much to be a part of our renewal, to be the ring bearer.  I have said this before and it is worth repeating, having Daegen and Alexa in our renewal was one of the most amazing things to ever happen to us.  Talking about Daegen being the ring bearer reminded me of a small mistake during the ceremony.  Our regular priest, Father Bill was unable to perform the renewal so Father George, who was the priest at Sacred Heart, where Janelle and I were originally married, where our renewal was held and where Daegen’s funeral was held, was the celebrant.  Well Father George was not our first or second choice but as God would have it, Father George was who we got and it was an amazing day.  Janelle and I realized on that ride home how perfect that was.  Father George forgot to bless the rings during the renewal ceremony.  You see, at the time Janelle and I were upset at this because Daegen was so excited to be the ring bearer and wanted to do his duty as best man/ring bearer but since Father George forgot, Daegen was not able to do his thing.  That is until he looked up at Janelle and me with the most amazing look and calmly asked, “When do I get to do the rings?”  You see, this mistake by Father George, at the time seemed like a big mistake because it took away from Daegen.  As it turned out it was actually an amazing gift to us.  Daegen still got to do his thing and it gave Janelle and I a memory that we never would have had if Father George had not forgot to bless the rings.  We never would have been able to talk about that one exact moment in time if Father George had not forgotten about the rings and Daegen so brilliantly reminded us.  Now Janelle and I can always look back and have one more memory of Daegen.  If Father George had remembered to do the rings then Daegen would have done his thing and we would have never thought anything else about that exact moment in time.  God does truly work his amazing power in some extremely strange ways.  Faith really keeps us going.   

Janelle, Alexa and I along with several family members went to Memphis in April to participate in our 3rd Remembrance Day at St. Jude.  We served on the parent panel this year which allowed us to share out experience about Daegen and help other parents who recently lost their children.  Being in Memphis was again emotional but necessary for us.  We got to see Mr. G, we ate at Hueys and the Spaghetti Warehouse, we went to the pastry shop and Janelle stopped at the Atlanta Bread Company as she did so many times with Daegen.  We saw some familiar faces and met many new ones.  It is a constant reminder that more needs to be done to help find a cure because so many kids continue to pass on after fighting so hard. 

 Alexa and I went on her class tour this year and had a blast.  We went to Woolaroc in Oklahoma and stayed at the Western Hills Guest Ranch, we then went to Fort Smith Arkansas, Pea Ridge and then to Eureka Springs to watch the Passion Play.  On the way home we stopped in Springfield, MO and ate at Lamberts, home of the throwed rolls and then stopped at the George Washington Carver National Monument in Diamond, MO.  Alexa is very blessed to be able to go on class tours like this to learn at the actual places where history was made.   

While Alexa and I were on the tour KU Med held their Remembrance Day.  Janelle participated by reading the poem she wrote that is on Daegen’s website.  Janelle said the event this year was amazing and touching.  I felt really bad by not being able to attend but spending time with Alexa is a priority I have.   

As you can imagine Mothers Day was again difficult for Janelle.  Alexa picked out this really cool card that allows you to record a saying then the card plays a recorded song.  I was able to record Daegen on my cell phone saying, “Hi Mom, I love You” when he was at KU Med.  Alexa and I transferred that to the card with Alexa saying the same thing.  I wish I could describe that one moment in time when Janelle opened the card and heard Daegen’s voice saying hi and that he loved her.

 Alexa will be performing in her 6th grade play on Friday and Saturday night after several weeks of hard work.  Janelle worked very hard being in charge of the costumes.  Alexa gets to play a spirit in the play and has cool makeup.  I will try to get some pictures posted soon so you all can see her.  She is only 12 but looks at least 16.  One other scary thing is I agreed to coach her softball team this summer.  I have always been the dad who helps out but never tried to be the coach.  Well this year I took the plunge with the help of John Chance, the dad of one of Alexa’s friends and classmates.  It should be very interesting.

 June 14th there will be a poker benefit ride for the DMAN Hero Foundation.  I will make sure the flier gets posted on the website if you are interested in participating.  We will also be involved again this year with the Light the Night Walk here in Topeka as well as across the country.  I will try to get more information out on the walks as well.  Thanks for all your hard work and efforts to help us not only raise money but to raise awareness.     

Enough of my rattling on even though it has been 5 m