I want to tell you all about my son Jacob. Jacob was born on Jan 10, 1990 to a proud Mom aka Lovely Wife (Cindy) and Dad (me). About a year after his entrance to the world, he invited all his friends and family to the wedding of his Mom and Dad. He wore the tiniest tuxedo you ever saw and looked quite handsome as he welcomed guests and took a ride on his Uncle Mikey's Harley. (Mikey drove) After about a week Jake was already showing the rest of the world that he was going to live his life at warp speed. He packed a few of his personal belongings and moved North. He was off to Alaska. Jake found the largest state in the country very much to his liking. He enjoyed camping, fishing and hiking with his folks in the beautiful wild places of Alaska. He also met some great people there who would become more than friends to Jake, they were his extended family. He went to elementary school and found that learning came easy to him. He knew that words, spoken as well as written were a wonderful tool that he could use to take himself farther. He loved his books and read with his parents daily, and often while he was alone. Some time passed happily by and Jake asked one day if he might learn to play the piano. His folks were at first skeptical but soon they figured why not? It turned out to be another of his gifts that nobody but Jake knew lay hidden inside of him. Much to the irritation of his piano instructors, he never took much of an interest in actually learning to read music. Jake played mostly by ear and the trophies and commendations that he recieved throughout his piano playing days are a testament of his skill. He played beautifully, and in competitive situations would sometimes forget to open his music, or forget to turn a page, raising a few eyebrows at the judges table. He played regularly throughout his childhood and on through high school and beyond. He did eventually learn to read, and write a little music but his choice was always to just play. At the ripe old age of around 6, Jake thought he might like to perform on a somewhat grander stage and discovered community theatre. He could be an actor as well as a musician and all the world would know of his talents...again we were a tad bit skeptical. What use for a 6 yr. old could the Anchorage Community Theatre possibly have? Having earlier decided not to stifle him in his quest for greatness we agreed to let him audition for a part in an upcoming production...Jake got a part, A Lollipop Guild Thug in The Wizard of Oz. (Let me just say, as a parent, there are a lot of hours involved in rehearsing for a major production.) So now we have school, piano lessons, and play rehearsals to attend. Life was grand...and busy. This was how Jake liked things, he lived life at well over 100 mph. I wondered sometimes if he confused the word excel with accelerate. The production opened to wonderful reviews and ran for I believe 3 weeks. Jake's favorite part of his nightly performance was the cast lineup after the show to meet members of the audience. It was one of these chance meetings that led to his next acting gig...a television commercial for a local mortgage company. He was pretty happy and even more so when they sent him a check for his eforts and invited him to a preview party complete with sodas and popcorn. Life was grand. Mom and I were just happy to be along for the ride. (as it was, we were his ride...no limo for him just yet!) The following year Jake auditioned for a community theatre production of To Kill A Mockingbird. He was given the part of young Dill. Mom and I had some reservations about the language and racial slurs in the production but it was directed very well and worked out just fine. His performance earned him a glowing review in the Anchorage Daily News. Having been recognized as probably the greatest performer ever, he retired from acting and went on to persue other interests. When Jake was about 9 yrs old he moved once again to the midwest and the place of his birth. He was well recieved and established himself as more of a leader than a follower. He was a knowledge sponge growing up, reading books and watching news programs. He continued playing his piano and as a 5th grader decided that he could probably also play the saxophone. After one long day at school he announced to Lovely and I that he had indeed joined the band. Nice. He continued to play that sax happily until he began high school, afterward he still played it, only not as happily. (we didn't think he should quit for fear he might want drums or a tuba or a digideroo(sp?) or something weird) I haven't seen that saxaphone for probably 3 years...must be in his car. Jake enjoyed the competitive scholars bowl team he was a part of during high school. Scholars bowl is a kind of after school thing where your school takes on other schools trying to answer a bunch of questions for points...like Jeopardy minus the talented Mr. Alex Trebek. He also became involved with Teen Court. It was run by the county I think, and the best way to describe it was like a tribunal. The teens assumed the roles of prosecutors and defense attorneys and tried real cases involving teens. The defendants were kids in their peer group who had commited non-violent crimes and agreed to be tried in teen court hoping for a little lighter sentence. The program was successful and I think other places have used it as well. Jake went on through high school making friends and being a typical (sort of) teenager. Sometimes doing the stupid things that teenagers do but mostly being a really good kid. He got his drivers license and at 16 Mom and Dad gave him a car. At 15 he had told us that he wanted a really nice car with a big stereo and air conditioning... We were going to give gave him our old 95 Tercel with no air cond. and an a.m. radio. When he got it, he was pleased as punch! He was told he could have the car but he had to pay for gas and insurance for it. So he needed a job. He found one at the Mall Deli. Now if you have ever been to Pittsburg Ks. you know about the Mall Deli. Best sammiches and bagels in all the world. He worked there from when he was about 15 until he got sick last May. He started s a busboy, and moved to the back line to cook and make sammiches. He truly loved his work and his co-workers, and his boss. When Jake was a junior in high school he was invited to go to Boys State of Kansas. Boys State is run by the American Legion and selected junior boys in high schools from all over the state go there to create and run a mock government. He so enjoyed his time there that he volunteered and was accepted to be a counselor for the next year, and following years. From this mock political experience Jake became even more involved in political causes. He began college at Pittsburg State University majoring in political science. Although he excelled in his studies carrying a 3.9 gpa, he decided that he wanted to change majors as a sophmore and study psychology. He never lost his political interests though. He felt that young people needed to voice their opinions, get educated about the issues, and vote. He wanted to spread the word and with the help of some like-minded college friends he launched a campaign to run for Governor of Kansas for 2010. Campaign headquarters was my house and those kids always showed up for meetings on Monday evenings ready to work...or eat. I was so proud of those kids. They did manage to spread their word and register many new voters but mostly now it seems like they all were learning about our government and the prcesses. Jake withdrew from the gubernatorial race to serve his country in another capacity...he joined the Army. He was scheduled to ship out to boot camp in October. On his weekend trip up to Kansas City to the M.E.P.S. (Army medical stuff) he became ill, but stuck it out and finished his weekend. At home he was planning to go to Manhattan Ks. to be a counselor for Boys State. Mom and Dad demanded that he see a doctor before blasting off for 12 days. The doctor told him in no uncertain terms he was not going anywhere but the hospital. This was around the 21st of May I think. 4 days later, worsening, he was transferred to KU Med in Kansas City. It would be another 3 weeks before he was finally diagnosed with H.L.H. He has been hospitalized pretty much the whole time since. He was home a couple of times for very few days before becoming to ill to remain out of the hospital. He underwent chemotherapy to fight his illness and prepare him for a transplant. He recieved a bone marrow transplant on 09/09/09 at approx 9:00 in the evening. He achieved 100% engraftment and things were looking more positive for awhile. Jake has since picked up several new illnesses including meningitis, and a fungus called aspergillus. Jan. 1 the doctors believe Jake had a mild stroke. An MRI was done and confirmed that he had developed more lesions on his brain. His sickness was progressing despite the drugs they were giving him. At this point My wife and I were given the news that no parent ever should have to hear. Our son is going to die. We knew at the beginning of this process that there was a chance we could lose Jake and thus made sure to talk to him at length about his wishes should things go horribly wrong. An advance directive was drawn up and signed and notarized. It is Jakes wish that he not be placed on any life sustaining machines if he won't probably be able to have a decent life. He has made it very clear to us that there is a difference between being alive and having a LIFE! Barring some miracle of biblical proportions my son Jake will leave this place and go to God in the very near future. His life has brought his family and friends so much joy over the last 20 years. Some people live 100 years and never do anything, not my son. Jake packed a whole life into 20 short years and did it wearing a smile. He is not afraid and although unable to speak was holding his Moms hand and trying his best to comfort her throughout the night. Strength and Faith will carry him home. We give thanks to God for sharing one of his children with us if only for a little while.
January 1, 2010. Happy new year indeed. I have been at the hospital for a few days now and I find myself looking inward more and more. I struggle to express myself outwardly and I am not sure why. My world has pretty much gone gray... not in a particularly bad way but certainly not good either. I am numb to feeling anything at times and I expect it is a survival mechanism passed down through evolution. I am at times overwhelmed with sadness or fear, and other times I feel like I am close to the edge of happiness or relief but will not let myself go to that place for fear of the return to my dark place. The road to this level of despair is a rocky one to be sure and is not well tolerated. I started down this road some long months ago and I dont want to risk making the journey again so I remain where I am. To feel truly happy and relieved might only prove to be a letdown. The trip was too hard, I can't risk trying to start again. So for now I stand in between, waiting. I hope the wait isn't too long but I know that I will wait as long as it takes. I believe that a person needs to be very wary of accidentally losing onesself in a world devoid of colors and sounds. I feel empty at times and looking now at the bare trees and the cold ground I wonder if spring will come for me. Don't take too long. The prayers sometimes feel inadequate. What am I to do?