A Day in the Life

Occasionally I get an interested friend, coworker, or even family member that wants to know what it is "really" like on an average day in our house. We have honed the fine skill of making the most out of our life and don't spend much time dwelling on how difficult some things truly are. I decided on Saturday that I would try to truly keep track of how our day went and document that for all of those interested. Here is a day in the life of the Tony Ballard family.

I settled in for a good night of sleep on Friday night at midnight. Elise woke me up at 4:02 a.m. making some loud "grunting" sounds. This is how she wakes up every day. There is a small window of time when a decision needs to be made to just let her make noise a little while, or check up on her, get her changed and hope you can get her back to sleep before anything additional needs to be done. Not getting out of bed is really not an option as it generally leads to her having a seizure, falling and hitting her head, and running the risk of injury. I chose to get out of bed.

To my surprise, she had apparently been up a while and had put herself back to bed. (Note: she doesn't put herself back to bed when we are with her. She "plays" like she can't muster the strength to do it.) Her diaper was laying on the floor, weighing in at about 15 pounds, her sheets and pajamas were thoroughly soaked, and she was freezing cold. I made a quick make shift bed on the floor, stripped her down, cleaned her up, and put on new PJ's, stripped down and remade the bed, put her back in bed and drug myself back to bed to go back to sleep! After about 30 minutes of reading and checking Facebook I shut everything off and closed my eyes. About 30 seconds later Elise was back to grunting and awake. So, at 5:10 I crawled back out of bed and headed to Elise's room. I hopped in bed with her and tried to get her to settle back down to go to sleep. I continued this endeavor with relatively little success until about 6:00 a.m. At that point, I got out of bed to get her morning meds and water that she must have before she is able to eat breakfast. I discovered that she never got her Friday bedtime meds. This doesn't happen very often (like 3-4 times per year), but when it does we sure pay for it! As is usually the case, she fell asleep right after I gave her meds and I was finally able to go back to bed. At 6:30 I went back to sleep (this is Saturday and I can sleep in today right?) and was awoken by Abby at 7:30 a.m. She wanted to know if she could watch a movie and wanted to show me the new hair braiding technique she had just learned. Needless to say, I wasn't too interested and I sent her to wake up Kelly to help her out today. Abby was unsuccessful (and gave relatively little effort) at waking Kelly up. So, I got back out of bed, started a movie, poured Abby some cereal and milk, got Elise's food together and started her feeding pump and headed back to bed. Just as my rear hit the bed, the alarm on Elise's feeding pump went off and needed attention. I got back out of bed, restarted her pump and headed back to bed for some more sleep! Unfortunately, sleep never came back. Maybe it was the roughly 4 hours of getting in and out of bed, maybe it was Kelly asking "did you have to get up with Elise?", or maybe it was just that by body was "rested" after 4 hours of sleep. I guess I'll go with the latter. I certainly have to give a disclaimer that there have been MANY nights where Kelly has been out of bed with Elise and I slept through it all as well. It has certainly gone both ways, and actually on Sunday we did basically reverse roles. I guess that is how we make this work!

I finally gave up on trying to go back to sleep and got out of bed at 9:00 a.m. We were headed to KC for the weekend for a family birthday party and we set a goal on Friday night to get out of the house by 11:00 a.m. on Saturday morning. After getting up at 9:00 a.m. I was ready to make some breakfast and chug about a gallon of coffee! I had started the coffee maker during one of my earlier times out of bed and I went straight for the coffee maker after bed. While talking with Abby about what to make for breakfast Kelly decided we should make smoothies! Theoretically a great idea! Do you have any idea how much time it takes to cut stuff up for that if you are not prepared? I set out to cut up a pineapple, several mango's, and get together some other ingredients. Kelly gave Elise a bath and got her ready for the day. By the time the smoothies were prepared and the kitchen was cleaned back up, it was now 10:20 a.m.! I chugged my partial semi-warm smoothie, threw out my cold coffee (I never did have my coffee!), and hustled to start packing. Kelly got together the girls' clothes, I got the suitcase and all the stuff for the dog, and we packed all of our own clothes and personal items. Kelly ran to get a fast shower while I helped Abby get dressed for the day, comb hair, brush teeth, and find some toys for the car ride. I hopped in the shower for a speed wash at 10:50. So much for getting out of the house at 11:00 I guess. The rest of the preparations where uneventful and we actually got the kids, the car, the dog, and ourselves loaded and out of the house by 11:15! I sat in the car initially impressed at how quickly we had made everything happen in the end. Then I realized I had basically been going at it for 7 hours already and we STILL couldn't get out of the house on time!

Our ride to KC was one of the smoothest rides in a long time. No seizures on the car ride, which is very unusual, meant that we didn't have to stop for a puke bucket, a diaper change, or to clean up the car en route to our destination! We arrived at my in-laws house at just about 1:30 p.m. in time to drop off the dog and even have a little down time before needing to head out to Leavenworth for the birthday party. I managed to sneak in a quick 10 minute nap which was the highlight of my day! We had another uneventful car ride to Leavenworth and actually made it to the party about 10 minutes early. This is a record for us nowadays! We were glad to get there a few minutes early as that gave us all a couple of minutes to "Elise proof" the house a little more. Unless you live with Elise every day, there would be no real reason to have to do this to your house. Imagine what you have to do to "baby proof" your house to make it safe for a toddler. This is the same premise for Elise, but she is 7 years old. She is much taller than a toddler, stronger than a toddler and able to move and break more items, and she is prone to either having a seizure and falling or just stumbling and landing on items that are left out. It is standard practice for us to quickly go through several rooms trying to clear them like we are part of the SWAT team.

Elise and Abby were excited to see their cousin Keegan and went straight to his room to play. While Abby and Keegan began getting out toys and playing, Elise crawled up in his bed and laid down after being in the room about 10 seconds. So much for playing I guess! She was content to sit on the bed and mostly just watch the other kids play. We were just happy that she was able to stay safe and no unsuspecting little kids were cracked on the noggin by Elise's helmet! We all moved outside shortly after 3 p.m. for the party and it was a beautiful fall day here in Kansas.

I find that gatherings with other kids are frequently some of the most difficult things for me. It is a good time, but it is really hard to watch how active the other "neuro-typical" kids are, and see how delayed Elise is in all aspects of life. There is nothing that we can do about it, the other parents don't make me/us feel singled out, it is just difficult. There's really no other way to say it. Elise seemed to enjoy her time at the party and she even managed to stay awake the entire afternoon! The party was full of cookies, cake, balloons, water guns, capes and masks (it was a superhero themed party), and presents. A good time was had by all.

After the party we stayed behind to have dinner with Kelly's sister, the birthday boy, and Kelly's brother. While dinner was cooking Kelly asked a question about one of Elise's meds and we realized that it was the only med that we had left at home! Elise "had" to have that medicine. She only takes it at bedtime, did not get it on Friday due to our error, and needed to take it to be able to get sufficient sleep. A quick call to the pharmacy to solve that problem turned into a multi-hour endeavor that didn't solve anything. I learned from the pharmacy that Elise did not have any more refills left on that script. That meant we would have to call the doctor on call to get them to call in a refill order. I called the hospital and was connected to the "triage nurse" who takes down your information so that someone can call you back. After about 20 minutes, a nurse from the hospital calls to ask the exact same questions that I had already answered for the triage nurse. She told me that she would contact the doctor on call and have them call me. She ended the call by reminding me that if this is an emergency I should bring Elise into the ER immediately. Really???? Weren't we just talking? Does a prescription for sleep meds really sound like an emergency here? I assured her we would be fine and I would wait to hear from the doctor. Another 20 minutes later and the doctor called to ask the same questions that I had already answered for the previous 2 nurses. She determined that I was apparently not a raging lunatic and that we weren't trying to put 2 mL's of this drug out onto the street and she agreed to call it in to Walgreen's for us. One of the great things about Walgreen's is that you can generally get 24 hour access and can get the script filled anywhere. Well...........that's not always the case.

After dinner we loaded up our family and the birthday boy for an overnighter. We headed to the pharmacy, which was about 30 minutes out of our way. While driving Kelly had the great idea to see if there was a 24 hour place even closer to her parents house and there was another option that would save us about 15 minutes! We chose that option and went to get the script. Once there we learned that they were out. The tech called the other 24 hour store in the metro area to see if they could fill it for us and have it ready. After an extended wait she came back to tell us that they did not have the medicine either. All that maneuvering and in the end we still came up empty handed. We could have called the doc back and likely gotten it filled at Children's Mercy, but that would have been a couple of more hours at least and then we would have been pushing 11 p.m.! And besides that, the K-State football game was on and I was missing most of the first half! As it turned out, I should have gone to Children's anyways. The game was terrible, and a second night of sleeping without the med was not any better!

We finally got back to the in-laws house, got the kids dressed and ready for bed, and Elise's medicine given at 9:00 p.m. After a long day I fell into a chair and stared blankly at the game for the next hour and a half. I asked myself many times throughout the day, "is this day better or worse than usual?" In the end, I believe neither. It was a "normal" day for us. Somethings were a little better. Elise didn't have as many seizures, wasn't as sleepy, and the car rides were uneventful. Some things were a little worse. Elise hasn't been getting up, to stay, so early in the past several months. We have enjoyed getting to sleep more often until 5:30-6:00 each day.

So the next time we have that frazzled look when you see us at a function, party, meal, etc. just remember, I was out of bed for 7 hours and still couldn't get us out the door on time on this day. You never know how much someone has done before the sun even rises some days. I try not to think about it. That only makes me more tired.

Sometimes just looking at this crazy haired kid make me more tired!

Finding Support in Random Places

One of the many challenges of having a child with special needs is finding families like your own. I was struck by the randomness of this the other day when reading the Facebook feed of the Feeding Tube Awareness group. A parent posted something to the effect of: My child is 3yrs old. He recently had a feeding tube put in and is now being sent to get a iv port implanted into his heart for regular blood infusions every three weeks for the next 10yrs of his life. Are there any other parents that have experienced this? If so, any advice on what to expect.

This is just one example of the random requests that come across this page. This parent obviously has her hands full, and if she is anything like me, she is likely terrified! I know nothing about what she was looking for, so I had nothing to add. To my surprise though, 30 people responded! I was shocked! There were no, "I'm sorry you are experiencing this" posts. The responses came from real people experiencing the exact same thing ranging from dealing with it for just a few months to many years! This mom didn't likely learn that her neighbor was an expert in this area, or someone else in her family had gone through the same thing, but that other people around the country have had the same experience. Just knowing that you are not alone can be empowering in itself.

In our house, we are well aware that there are many others with far more difficult lives than we have. We never set out in search of sympathy. We do, however, frequently set out in search of someone that is experiencing some of the same things that we are. Unfortunately, there is no "awareness group" for people that have had leukemia, contracted a brain infection, acquired an uncontrollable form of epilepsy, needs to wear a helmet all waking hours, has all the skills to eat on her own but can't sustain her life by eating enough orally, etc., etc., etc. So, we tackle that elephant one bite at a time in search of whatever information we can find and whatever connection we can make. One group will have a single person or a small number of people with similarities, and another group will have the same. A lot of time that "support" comes in knowing that others are facing the same struggles. Frequently, others have many of the same difficulties and haven't found any solutions either. But, we have learned that others are out there!

With the HIPPA laws, it is next to impossible to connect to others with similar issues via any medical professionals. The very laws that are set up to protect our privacy also prohibit us from making some valuable connections. There are likely several people in every city that have gone through some of the same experiences, but the only way we would learn that is through some type of awareness group or non-profit organization. I was a "late bloomer" to Facebook as I just didn't see the value in it. At this point in our life, I really enjoy seeing what is going on in the lives of some people that I have known many years, but otherwise wouldn't stay in touch with. But, most of all, I really enjoy the connection to people that I have never met that are traveling down the same rocky road that I am on. I have always been told, "Networking is one of the most valuable things for you." Professionally, maybe this is true. Personally, I have found this to be one of the best tools to help me and others find answers. Who knows, maybe another connection will even come out of this post! That would be yet another random occurrence to add to the list.

Making Memories

Sign posted next to the playground by our campsite.

More than a year ago, after reading a book about camping, Abby told me that she wanted to go camping too. At the time I told her, "I'll see what we can do about that." In the back of my mind, I was really thinking, "there is no way I want any part of dragging Elise out to a campground and having to think about everything that would be involved in ensuring that she could safely "enjoy" this experience." What Abby asked for was in the back of my mind, but I really didn't consider it much at the time. Over the next several months I thought about it many times until coming to the realization that camping, for her, didn't have to include Elise as well. There was nothing wrong with her going camping without Elise. So, I made it my goal to take her camping!

I finally found a time that would work for us. We loaded our van and invited my brother Don to join us at one of the state parks at Tuttle Creek outside of Manhattan. On Friday night, we set up our tent, roasted hot dogs over an open fire, and hit the lake for some fishing time before calling it a night.

Walking to our first fishing spot

Fishing is a big part of many of my childhood memories and something that I really want to pass on to my kids. Like many parents, I often let life get in the way, and we just don't make the time for it that I would like to. It was one of my many goals to rectify that situation during our camping trip.

 Luckily for me, Abby loves to go fishing! She talks nonstop, doesn't sit still for long, and is always messing with her fishing pole. Generally, I don't mind any of it. I'm just glad to be sharing the time with her. In the week before we went camping, I heard many times on the radio, a song by Trace Adkins called "Just Fishin'". You can hear it here. As the song says many times, "she thinks we're just fishin'". I hope that someday she will have great memories of fishing much like I have with my brother and dad.

A rare picture sitting still

Our fishing spot for the first evening wasn't as productive as I had hoped for, but it seemed to please her just fine. It certainly provided Don and I a few opportunities to snap some photos at least. It wasn't too long after we started fishing and Don got his first bite. He was nice enough to convince Abby that he needed some help and got her to reel in his pole. The fruits of her labor was pulling in her first walleye of her young life. I'm not sure if she was smiling bigger or me, but it was pretty cool.

Her first walleye

Four fish later, we called it a night. Before going fishing, Uncle Don bet Abby that he would catch more fish and the loser had to buy ice cream. Not surprisingly, she won that bet (even if two of those fish were on his pole) and we had to stop for ice cream before returning to the campground. Abby spent a long time laying awake in the tent trying to figure out what each little noise was. She can be easily spooked and I wasn't sure how she would handle camping. But, she eventually settled in and got some good sleep. Much to my dismay though, she was bright eyed at 6 am when she wanted breakfast and to go back to fishing! Those were certainly 2 things high on my list for the day!

Caught all by herself!

I was surprised to learn, when I checked in to the campground, that they had a "free day" at the state park on Saturday and had lots of things planned for kids. I had a few things planned myself, and I really didn't want other events getting in our way. It turned out to be a good thing as we were able to supplement some of my plans by adding in some of their planned events. One Saturday, we enjoyed several hours of fishing in the morning followed by a stop at the shooting and archery range. The line turned out to be a bit too long for archery, but Abby really enjoyed learning to shoot a BB gun. There might be a future birthday idea in there!

She's not a bad shot

We followed up our shooting activity with a little time for her to play in the bounce house and caterpillar tunnel that they set up. She enjoyed the time to run and get out some of that pent up energy. Although, she was quickly becoming one tired little girl.

Ready to go swimming

After a short nap, Kelly and Elise joined Abby, Don, and I for some time on the beach. It has been an unseasonably cool summer around here. On Saturday, there was no sign of that unseasonably cool weather. It was HOT! A couple of hours at the beach was just what the doctor ordered. We enjoyed having Elise and Kelly join us. Don and I REALLY enjoyed the prolonged opportunity to stand in the cool water and feel a bit more refreshed. We finished our night off with some great chicken cooked over an open fire and of course we also had smores!

Worn out

Abby was so worn out she asked to go put on her pajamas by 9pm and she was asleep shortly after that time. It was a warm night, but a great night's sleep for everyone and helped us to go home on Sunday a bit more refreshed.

As I have thought back over the weekend, it was everything that I hoped it would be for her and me both. It was great quality and quantity time for both of us. She had my undivided attention and I had hers as well. She got to have some bonding time with her Uncle Don as well which was certainly an added bonus.

In the first picture above is the Kansas Children's Bill of Rights. I took a picture of a sign that was posted right next to the playground inside the campground. I was intrigued by many of the things that were listed and I was glad to see that we were accomplishing so many things on that list. It was great to disconnect from society even for just a little bit and immerse ourselves in our environment.

My ultimate goal of this trip was to spend some great time with Abby. The side benefits would be getting to take her fishing, sleeping under the stars, enjoying a nice time at the beach, and eating food cooked over an open fire. In the end, I wanted to make memories for both her and I. In the words of Trace Adkins, "I guarantee this memory's a biggin, and she thinks we're just fishin'." I look forward to doing this again someday. Abby is already planning our next trip.

For the record, I caught fish too! Abby enjoyed taking this picture.

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