A Glimpse Into Our Future

The last several years have been full of adjustments. Certainly, the last couple of months have been plenty full of their share of adjustment periods as well. We are in the midst of one of our newest adjustments now with both girls heading off to school in the mornings and Kelly heading off to work at the preschool. We didn't know what to expect, but it certainly hasn't been easy. For the first time in my working life, I am the last one out of the house. That has been quite a bit different in itself.

Abby came home from her first day of preschool with a scrapbook project that needed to be completed. She had a week to get it done and it certainly was nothing unreasonable. It was something that should be fun for her and fun for us. Her job was to select some photos of herself, her friends, her family, etc. to put onto the page to show some of her interests and hobbies. She could also use stickers, draw pictures, or whatever she wanted to communicate who she is. Unfortunately for her, her parents are sort of a disorganized mess and even getting off the ground was a chore. I thought it made the most logical sense for us to work on this right after dinner. We were all at the table already, we had a nice large clear space to put things out and this should be fun right????? Wrong!

To begin with, we have pictures everywhere! Now that we are part of the smart phone and tablet generation, we have things in multiple places and often times have no idea how to find any of it! I had some pictures on my phone and many pictures on Facebook that were not saved to my phone. Kelly had many pictures on her phone, some on Facebook, and even more on the iPad. Of course, we had to run all picture options past Abby. By the time she decided what photo she wanted, we had to go back and find it and usually couldn't remember where we had seen the picture in the first place. Once we found the picture then we had to decide whether to put them all together and have them printed somewhere (there weren't that many pictures) or try to print them on our new printer that only prints when it feels like it.

In the meantime Abby is talking a mile a minute, she is bored, wants to draw something, has bug bites, needs a kleenex, sure is thirsty, look there's a chicken.......Good grief! All the while, Elise is sitting at the table, having seizures, retching, and trying to get out of her chair to walk around. She is "confined" to her chair because her food pump is going but isn't working right. For some reason the pump has decided it doesn't like the new diet she is on and decides to alarm every 15 seconds. For two hours straight! Now, two days in a row! This is no exaggeration. Her 45ish minute feeding took more than 2 hours! Another good grief!!!! By the time we were done, about 8:30, Abby's project was mostly done (we still have another day to work on it), we were 30 minutes past bedtime, Elise's food was STILL not done. I was looking for a "Calgone take me away" moment. Honestly, I would have settled for anything take me away!

As I was sitting with Elise getting her ready for bed I began to wonder, is this what our future holds? Do we really have years of sitting at the table helping Abby with her homework while we have to stop every 15 seconds to deal with some medical issue for Elise? Like everything, I suppose we will get accustomed to it, but I sure don't like it! I don't like that we can't give Abby our undivided attention, I don't like that we can't give Elise our undivided attention, and I really don't like that we can't even give ourselves our undivided attention! But, this too will become "normal" over time.

As I was looking for a book to read with Elise before bed I came across a book that my parents had given our girls a couple of years ago. It is a recorded book that my mom insisted on them having. Her and my dad were not big readers, and I don't know that I ever recall them reading to our kids. But, they now have a recorded book of both of my parents reading this story to them. They will never grow up to know them, but they will at least get the joy of having them read this story to them. As I listened to the book it certainly helped to calm my nerves and I believe that Elise enjoyed it quite a bit as well. I know that my parents would have liked to know that they could help in some small way, and tonight they did just that for me. I just hope the book lasts. We have a lot of years of homework ahead of us!

In Only Seven Short Years

My first picture with Elise

August 16th marks Elise's 7th birthday. What an amazing, terrifying, and humbling ride it has been! I recently had the thought that I would write this post, but had no idea the true difficulty it would give me. There have been a lot of good and a lot of bad in that seven year journey. There are no guides to help us as parents maneuver these waters, and each day brings new surprises in one way or another. After combing through the photos several things have been pretty evident to me. 1) We sure looked a lot younger only 7 years ago. 2) There was a lot less grey hair then as well. 3) There were no shortage of pictures with people smiling. I believe #3 is the most important in all of this. No matter if the day has given us lemons or lemonade, Elise has always found a way to bring a smile to our face and left us in awe of the things she has been capable of.

Elise opening a present on her 1st birthday

Elise has always been inquisitive and persistent. We have come to appreciate her persistence in ways we didn't even know were possible. From the beginning she would focus all of her energy on a task and continue with it until she could figure out how to do it. She was rarely frustrated, but always determined!

Finishing off some cake on her 2nd birthday

Fortunately for us, we never really experienced the "terrible 2's" with Elise. She was always up for being a bit ornery, but well short of terrible. As you can see by that smile, she was always planning something to push the boundaries a little bit.

Elise sitting on her Tinkerbell couch for her 3rd birthday

Little did we know, her 3rd birthday was the start of one of her most difficult years. She got to "enjoy" her 3rd birthday in the local hospital. She was experiencing some odd and unexplainable symptoms that would later turn out to be leukemia. As you can tell from the bandage on her arm, she had just been released from the hospital the day this was taken. That didn't keep her from putting on a big smile as she opened her gifts!

Celebrating her 4th birthday

A lot less hair, but a lot more to be thankful for on birthday number 4. There were many times over that year when we weren't sure she was going to make it to this day. But when she did, it was certainly cause to celebrate!

Elise on her 5th birthday

Many more challenges in year #4, but we were impressed by some of the progress that was made in that year as well. This was the year that seizures began to show and we learned that she would need to "medically accessorize" with the cool pink helmet.

Making a mess for birthday # 6

Elise didn't have much interest in eating this year, but she was always up for making a mess! Kelly spent a long time working on some special cupcakes that she could eat being on the Ketogenic diet for seizures. The diet didn't work and unfortunately, the cupcakes weren't much of a hit with Elise either.

Now, as another year has passed, I can look back and see the many changes that have taken place over the year. Some are so subtle that we barely even notice them until looking back at pictures and events, and some are evident to us every time we go out into the world for whatever the day happens to bring us. As you can see from the pictures above, the one constant in each picture was the smile on her face, and the smile on the faces of those around her. With all she has faced, if she can still look life in the eye and smile, there is no reason that we can't do the same. She has taught us that each day can be tough, but we still need to get up, put a smile on our face, and find someone who needs to have a little ray of sunshine in their lives. I look forward to seeing that smiling face in the morning and am glad that I have that little ray of sunshine each day.

Happy 7th birthday Elise! I can only hope that she truly knows how much her parents love her.

 

Charting a New Path

It has been a REALLY long time since my last post! Interestingly, I have actually missed writing a blog. In all honesty, life has been very busy and hectic since my last post more than two months ago! To get you up to speed, here are some of the highlights of the past two months.

• On June 8th, we moved from Shawnee, KS to Manhattan, KS ending our 18+ months of living apart. No more Skype conversations with my family, no more unreasonably early Monday morning drives, not as many fast food meals, and tons more time to laugh with my family and reconnect with them all!
• Elise made numerous trips to the ER (four I think). Our first trip to the Manhattan ER was only on our second full day of living here! She had stitches in her chin three times and a terrible looking bone bruise on her ankle. As always, she is a trooper though. We have begun to familiarize ourselves with the ER staff at our new hospital. They will get to know us well! They took us in stride and treated her very well.
• I worked a conference in Philadelphia for a week right after we moved to Manhattan. It was a difficult time to be gone, but a great conference nonetheless. I left a house full of boxes that needed unpacked to go to a hotel full of boxes that needed unpacked for the conference. By the time I came home, I really didn't want to see any boxes again. Sadly, many of them are still in their original landing spot from the day we moved in! We are working on that (sort of).
• Elise went to Camp Hope for the third straight year. Because of her rough sleeping history, Kelly went along and kept Elise at a hotel for a few nights while she went to camp during the day. I think Kelly enjoyed the alone time during the day. Elise always loves being at camp. Abby enjoyed the time away as well as she was the center of attention with Uncle Don and Aunt Tammy for several days.
• We took about a 10 day vacation to northern Michigan. This was shortly after I returned from Philadelphia. No need to get used to sleeping in my own bed too early! We enjoyed the cool temperatures, time with Kelly's family (they all ended up at the cabin on the 4th of July), and spending time on the boat. It was a great way for our family to begin reconnecting after being apart. I really enjoyed that time and I think it helped us as a family immensely.
• After two full weeks of sleeping at home, I went back out on the road to a conference in Las Vegas. This was one of the best conferences I ever attended. This was the annual conference for Meeting Planners International. Lets just say that a conference for planners, by planners, with nearly unlimited resources, was way over the top! Live performances by Billy Idol and Dierks Bentley, a night of poker with several of the pros from the World Series of Poker, unbelievable sessions by some of the most respected people in the profession, in a city that is known for doing everything over the top. It was exactly that. I had some interesting experiences while I was there. I am hopeful they will be fodder for future blog posts in the near future.

For the most part, I think that brings us up to today. I'm sure I missed some important things, but above were some of the highlights off the top of my head. One of our biggest summer highlights might well happen on Monday. For the first time in 5 years, Kelly is going back to work outside of the home! She was very fortunate to land a job as a new preschool teacher at the Junction City Church of the Nazarene Preschool. She appears to be excited about the opportunity and I am sure is looking forward to some more mentally challenging activities. She won't be able to stay in her pajamas as long everyday, but she doesn't have to dress up much either. I think that is a win/win on both sides! I am ecstatic that she feels comfortable enough to take this leap and I am hopeful that it is all that she dreams it will be. Abby will also begin attending the same preschool when it starts in a couple of weeks. She is looking forward to "going to school" and I am sure will enjoy learning from someone new and making new friends as well. Elise will be in first grade in the Manhattan schools when they start in a couple of weeks. It is unbelievable how quickly time is flying by some times!

As you can see, there has been a lot of activity and a lot of change in our lives since I last posted. We are hopeful that it is all for the good. We look forward to the new routines ahead. Even a year ago we began wondering out loud if Kelly would ever really be able to go back to work again with the many issues that Elise was having. Each year has shown us slow and steady progress with Elise and the time has come to shift some of our attention back to ourselves and each other. We are fortunate to not be faced with continuous doctor appointments, hospital stays, and ER visits. Who would have thought 4 ER visits in 2+ months was progress!?!?! We are thankful to the many people that helped us move (both in KC and in Manhattan), the many people that have watched our girls and helped us along the way during this several month transition, and for the many people that have and continue to pray for our family. It is all appreciated!

The Blessing of Cancer?

I was recently introduced to a video that captivated my attention. It had some pretty profound statements that I have only heard come from other people that have been personally affected by having cancer in their life. Whether you are an adult with cancer, a child with cancer, or a caregiver of someone with cancer, your life has been so drastically and eternally altered that most people just can't comprehend.

Zach Sobiech, an 18 year old young man from Minnesota passed away this week after battling cancer for several years. After being given only another year to live, Zach did several things that are going to leave a lifetime of memories for his family and friends. One of the "legacies" he left behind, was a song that he wrote and recorded called "Clouds". Click the link to watch a video of the song. In addition, a great video was put together as a tribute to his family and those that have most closely affected his life. It's a pretty lengthy video, but certainly worth the time. Grab a few tissues and check it out here. It is particularly powerful near the end of the video when he tells his family members, one at a time, what they have meant to him. Amazing stuff! We should all learn that you don't have to be dieing to do something like this.

In the video, incidentally titled "My Last Days", there were several profound statements. Several amazing things had previously taken place in the video. Many of those things sparked the first statement when someone told him, "This stuffs not happening because you are dying. It is really because of the way you're living." I can't think of one cancer family, that I have come in contact with, that hasn't heard a similar statement said to them as well. As often happens in cancer families, very generous people come out of the woodwork to provide meals, money, special memories, and much needed emotional relief. The reason, I think, is mostly due to the second profound statement in the video. "That's one of the blessings of cancer. You kind of come out of denial. In doing that, things are better. Life is richer, everything means more, and beauty is more beautiful." We spend so much time being devoted to our day to day life that we become too accustomed to our surroundings. If you are like me, you probably take almost everything for granted. Until, one day, something happens to change your perspective.

As I think of the struggles so many families are facing with the terrible tornadoes that hit Oklahoma yesterday, I am acutely aware that it isn't just cancer that can deeply impact a persons life. Tragic circumstances often bring out the best and worst in people. Fortunately, there are so many great things that come out of tragic circumstances that we are able to more easily see past those that have brought forward the worst aspect of humankind.

I don't know that someone can be truly prepared for the worst possible circumstances in life. Looking back at my life, I know that I have made some pretty drastic changes to the way I handle myself and interact with others since experiencing cancer with Elise. It's not a matter of judgement of my "old" self, or how I think I am expected to present myself. Rather, it is a choice to see that life truly is richer, means more, and everything is more beautiful. We all slip from that view sometimes, but I try not to make that slip a habit.

"Life is really beautiful moments. One right after the other. It's really simple actually. Just try and make people happy!" - Zach Sobiech - 2013

Returning to a Magical Place

A couple of weeks ago I took a whirlwind tour of the southeastern U.S. After finishing my work on Friday afternoon, I turned my rental car south and headed to serve as a volunteer at Give Kids the World (GKTW) Village just outside of Orlando, FL. In case you missed this update in our life back in 2011, this is the place our family stayed when we went on Elise's "Wish Trip" with the Make a Wish Foundation.

Give Kids the World Village is a 70-acre, nonprofit "storybook" resort, located near Central Florida's most beloved attractions, where children with life-threatening illnesses and their families are treated to week long, cost free fantasy vacations. Next to Disney World, this is one of the most magical places that a child could ever experience. The village is laid out to be like a life size version of the popular board game "Candyland". There are many unique aspects of life that you get to experience when you have a child that has experienced a life threatening illness. Most of those aspects are not near as amazing and enjoyable as Give Kids the World Village.

I was not prepared for the flood of emotions that I felt when arriving at the village. I was excited to return and "pay it forward" to an organization that had provided some great joy to our family. My first stop once arriving was to stop outside the chapel and get a quick picture of "Tyler's Mailbox". You will see it pictured to the right. I don't remember the exact story behind the naming of the mailbox, but I'm sure you can imagine the impact it has on the families that experience GKTW. Many families that get to experience this magical place, are on their last getaway with their sick child. For many there is no cure, no time, and no hope. The mailbox serves as a reminder that there is always hope. For all the things you cannot say to other people, you simply put it in a letter to God and drop it in the mailbox. Nobody ever reads it, but the power of turning over all of your fears, worries, and cares is an empowering thing. I wish I had thought of something like this a lot earlier in our journey with Elise.

Abby riding the carousel at GKTW in 2011

My time as a volunteer was spent running the carousel. I have some kind of strange love for the magic of the carousel, so this was as close to my dream job as I am ever going to get. While I can be a fairly outgoing guy, that doesn't come real easy to me when dealing with little kids. I was fortunate to be paired with a lady that worked as an entertainment director for Disney World. She was in her element to be out drumming up kids to ride the carousel and really got them excited. It wasn't hard to find riders as the carousel is located right across from the dining hall.

As I sat outside the carousel waiting for my trainer to come and teach me how to run it I got to observe many families that were walking around the village. As I watched them I imagined that we must have looked much the same way 18 months ago. All of them looked tired. After months or years of struggle, life had caught up to them all. The hectic schedule of an amazing free vacation added to their weariness, but this is a whole different kind of tired. Life had dealt them a pretty difficult hand and the opportunity to escape the struggles, even for a few days, brings a kind of relief that I cannot even begin to explain. While there were some kids full of energy and running all over, there were others that were thoroughly exhausted from their busy vacation schedule and others that were simply too sick to have much energy. But, they were all there enjoying their vacation for all it was worth. All families are in a very similar boat. It is one of the few places I can recall being totally comfortable that everyone you encountered had a deep understanding of the struggles you face.

I served my four hour shift as a volunteer. I helped dozens of kids get buckled in and waved and smiled with them as they went round and round. There was no limit to the number of times that a child could ride the carousel and some could have ridden for hours if there wasn't so much other fun stuff to do. When my shift was over, I went to the building next door known as "The Castle of Miracles". Inside that castle is a star placed by every wish kid that has ever come to the village. I wanted a picture of Elise's star from our trip in 2011. They had given us a picture of it before we left the village at the end of our trip and had shown us where it was placed. But, it was important for me to see it again and get that picture. You can see her name on the star in the middle of the picture.


 I left the village that night at 10:30 for a three hour drive back to my hotel. It gave me a lot of time to think about what I had experienced and how much my own life has changed even in that 18 months. On our trip, Elise was not strong enough to walk any kind of distance and spent most of her time in a wheelchair or a wagon. She frequently had cold temperatures and was getting sick a lot. She didn't have the strength to sit up on the carousel much and she didn't really want to sit in the wheelchair on the carousel either. When I look back at that experience I can see the progress that has been made. It has been slow in many areas, but it has been progress. I can say, after going on that trip we were motivated to carry on in our battle to improve Elise's quality of life. We will likely never be able to duplicate a trip like this for our family again. In the end, I don't know that we would want to. This was one of the most enjoyable experiences of our life and helped us to create a lifetime full of memories in just a few short days. If you are ever in the Orlando, FL area, you should stop by GKTW Village. They are always looking for more volunteers to fill their roughly 1,200 volunteer shifts per week! Last year they surpassed 2 million volunteer hours that have been served since they opened in 1989. Check out their website some time when you get the chance.

Leaving Their Impact on Their Family

My mom ca. 1985

As we look to celebrate mother's day I have been reflecting on the mothers that have most directly affected my life. Whether I can see them on mother's day or not, they have all made some kind of impact on my life in their own unique way.

Sadly, my mom passed away a little over two years ago. It seems like it was just a few months ago when I was last talking with her. I was very blessed to spend the majority of her last two weeks with her. While she was in KU med center I went to visit her every day and we would talk about anything and everything under the sun. I believed when she left KC that day that I would never see her alive again. She was at peace, and I believe I was too.

During my childhood, Mom didn't miss a game, a concert, a parent teacher conference, or any other event that I was involved in. She cooked almost every meal, did every dish, worked a full time job, and ensured that our house was running smoothly at all times. She was always up early getting everything ready for everyone else first thing in the morning. She was always quick to cry, but even quicker to laugh. She was always concerned with helping everyone else. As I have said before, many of my best qualities I get from my mom. I miss her every day and always wish there was time for one more hug or I love you.

Kelly's mom Sue and dad Dennis ca. 2012

In 1995 I met the people that would become my second set of parents and my other "mom". For some reason, I have never been able to call my in-laws mom and dad. It is certainly not out of a lack of love or respect, but it just isn't something that comes easy to me. So, I don't do it.

Sue was always a tough person for me to read (and I'm sure she probably would say the same thing), but I always enjoyed the challenge. Her love for her family and ornery sense of humor where evident from the beginning though. Over the years I have come to appreciate her insight and support of our family. She isn't as tough to read nowadays though. Once we began bringing those grand babies into the world priorities shifted for everyone. Suddenly challenging me wasn't as important!

Her crafty nature is amazing to me. Her ability to whip up the materials and ideas for a quick project is always impressive. Her creative spirit has certainly influenced my wife and has been influencing my own kids over the past several years as well. With my own mother gone now, I look forward to many more years of having Sue in our family life and in the life of our kids.

Kelly and I in Las Vegas in January 2013

I am blessed to have my wife and mother of my children in my life as well. She is head caretaker, chef, maid, laundry woman, nurse, medical transcriptionist, biblical scholar, counselor, seamstress and many other things. She is truly amazing. She is patient, kind, loving, and a teacher at heart in almost everything she does with our kids. Most motherhood struggles are challenging enough, but navigating the path of a child with special needs take a different kind of person that is willing to sacrifice unconditionally. Kelly has devoted herself to that kind of sacrifice and it has been inspiring to many, including myself.

As I watched her and Abby plant flowers together today I just smiled at how alike the two of them are. Kelly was in her element playing in the dirt. Abby was working along looking just like her mother. Kneeling pad on the ground, little garden gloves on, dirt on her head, and a smile on her face. They were just alike! As I watched Kelly laying in bed with Elise tonight I was in awe of how different it is for fathers and mothers. The connection between mother and child is different, and there isn't anything that I can do as a father to have that same connection. After a day of feeling crummy, Elise snuggled right in to Kelly and was asleep in minutes. I had been trying to do that for hours! There is no substitute for having your mother close to you.

I am thankful to have experienced the motherly impact of these three great ladies. What a journey it has been from being mothered as a child, to watching my wife guide and form my own kids on a daily basis. It is not an easy path, but definitely one of the most noble and rewarding. Thank you each for the impact you have had on my life.

Changing Our Family Tree

A couple of months ago the stage was set for, what I believe, has been one of our most teachable moments in Abby's young life. One day during nap time, I was doing a little window shopping on Craigslist and I found a loft bed with a slide that I thought Abby might love. Before nap time was over, I had found 4 beds for her to look at.

Abby's Dream Bed!

When she woke up we looked through all of the beds and she found one that she really liked. I called about it immediately, but sadly it had just sold. As I looked the bed up online, I found that they really weren't as expensive as I thought they would be. We decided to take a spur of the moment trip to Nebraska Furniture Mart to look at beds and just get out of the house for a while. It turns out they had the bed in stock that we saw online, but right next too it was a different bed that become the bed of her dreams over the next two months. One big obstacle stood in the way though. It was the most expensive bed we saw in the kids section!






Many years back Kelly and I took a "Financial Peace University" class at our church. If you are not familiar with this class, it is founded on biblical principals of handling money and NOT using debt as a tool to manage your finances. More information can be found about the course and the teachings of its founder, Dave Ramsey here. With this class we gave up credit cards and debt in general. We have not carried a credit card or had a car payment in about 6 years! (We also haven't missed either of them by the way!) So, putting Abby's dream bed on our credit card and taking it home that day wasn't an option. We were also pretty reluctant to pay that kind of money for a kids bed! It truly does hurt more when you are paying cash.

When we got home we told Abby we would be willing to pay for half of the cost of the bed, but we needed to figure out where that other half could come from. Immediately she said, "I'll use the money in my piggy bank!" Wow, what a great idea!!! It turns out that she didn't have enough in her piggy bank, but she did have enough in her savings account. She has been good about saving the money that she gets for Christmas, birthdays, and random gifts. She REALLY wanted this bed and has not stopped talking about it for 2 months. Since we are moving to Manhattan, she will finally be back in her own room and she will have plenty of space for this bed.

Abby Waiting

On Friday, we made a trip to the bank to withdraw the money that was needed to pay for the bed. When we got to Nebraska Furniture Mart, they no longer carry the bed in stock! Luckily, they still have a couple in their inventory and our sales person was even able to find it cheaper somewhere else online! The sales person researching the bed and getting everything in order took quite a while. Abby managed to wait "patiently" on the sales counter while entertaining herself with a game on my phone. After some extensive searching, the salesman finally found a picture of the bed and showed it to Abby. Immediately she said "yep. That's the one I want!" She had no doubt what she was looking for and her memory of the bed was much better than mine.

Abby Counting Her Money

While the salesman was finalizing the order we got out the money to practice. I'm sure the sight of a four year old with a stack of $100 bills was pretty shocking to the people walking by. It was hilarious to us! She was excited to learn that they had the bed even though it was going to take a while to be delivered. We were able to get free delivery because they were matching the price of the bed to another company that included free shipping. We are paying a small fee to have them put it all together at our new house in Manhattan. Our hope is that it will be delivered in time for the first nights sleep in our new house!


When we got downstairs to the cashier I sat Abby up on the counter and gave her the wad of money to count out to the cashier. After ringing her up Abby laid out her $100 bills one at a time for the lady. The smile on the ladies face was priceless as well. I bet she never had a four year old do that before! To see a video of this transaction click here.

In the end, could we have just bought the bed for her and bypassed all the extra stuff? Yes. Would it have meant as much to Abby or us? Not at all! She has learned the value of money. She has learned that she has to have money if she wants to buy something. She has also learned that it "hurts" to drop a large sum of money at once! It is our hope that we can model good financial reasoning to both of our kids. Often times that means that we cannot buy things at the spur of the moment and we very rarely make unplanned purchases. This method is counter to many things in our society and often gets us strange comments and looks from strangers or even family members. In the end, we own everything we have and enjoy the lack of bills that come to the house every month. It is our hope that we are, in the words of Dave Ramsey, "Changing Our Family Tree" in educating our kids this way. I know that the life lesson learned on Friday will likely stick with Abby the rest of her life and it has given us the encouragement to know that we are making a difference in the financial future of our kids as well.