Why I Believe

This Easter season, for some reason, has made me really think about why I believe in God. Is this whole resurrection thing really possible? Does God really exists? Or, as some think, is the bible the greatest novel ever written? I certainly don't have all the answers, and what works for me may not work for you. But, I have living breathing proof in my house that God does exist.

Elise and Abby in 2009

As a child I rarely recall going to church. There was a time when my mom would take me and I would go on my own during elementary school. That happened off an on for a few years. I really went to church for the first "real time" in high school. I met a girl that told me, "if you want to date me you have to go to church!" Well, I did want to date her, so I went to church!

I was immediately drawn in to the youth group and was amazed at the number of friends that I had that already attended this church. I had no idea! I assumed they slept in late on Sunday and were ready for the noon football game just like I was. My last two years of high school I attended church regularly. I continued my first semester of college, but suddenly fell off the wagon and took a several year hiatus from any regular attendance. I would go to church when I returned home on some weekends and occasionally at other times as well. After college Kelly and I attended church sporadically for a couple of years. There was always a draw to go to church, but a lack of commitment on our part sadly kept us home.

Once we moved to Junction City in the early 2000's we began to go to church more regularly. I found myself growing in faith, but often times struggling to understand some of the big picture issues that come with Christianity. After all, it can be pretty hard for our earthly minds to comprehend such supernatural experiences. We were actively involved in church and I had the strongest faith of my life when Elise was diagnosed with cancer. That faith was certainly put to the test as well.

When Elise was diagnosed with cancer, like any parents, we asked ourselves why. Why is this happening to us? Why is this happening to our 3 year old daughter? What have we done to deserve this? Most of all, what has she done to deserve this? How can a powerful and awesome God allow this to happen?

To quote the great philosopher, George Strait, "I've been to church. I've read the book." But, I sure don't recall reading the book that describes your child getting a life threatening illness and turning your family upside down. People would always say, "God has a plan." What does that mean anyways? If his plan was to give my 3 year old cancer and take her away from me, then his plans sucks! I don't want to be a part of it!

Late at night I would lay in Elise's hospital room and listen to the helicopter flying an emergency patient in or out to another facility. Several times per week the code blue alarm would go off and you knew that some child and their family where in the fight of their lives. During those times I would keep hearing people say, "God has a plan." Really? I'll go find those families and tell them that.

While my faith was really wavering, there was really nothing else to do for Elise other than pray. So, every night I would do that. I would say, "I don't really even know why I am praying. What good is it doing me? But, I am not giving up on her. God, if you really are there I hope you are listening!" Then the code blue alarm would go off again and the lack of understanding only made my head hurt more.

In January of 2010 Elise contracted the HHV6 virus on her brain. It is really ugly. If you want to know more about it you can Google it. It isn't pretty. Doctors don't routinely check kids for this virus unless they have been through bone marrow transplant. Elise had not been through this, but the doctor on call ordered this test anyways. It came back positive with an astronomically high number. They immediately ordered a follow up test the day the initial results came back and in the mean time started her on an anti-viral medicine. The next week the 2nd test results came back and showed a significant decrease in the initial numbers. So much, that the head of the infectious disease department didn't believe that she ever had the infection.

There was heated debate over a couple of months about whether she really had the infection or not. In the long run did it really matter? To them it did, but to us it did not. She had all the signs of the infection, she has the brain damage of the infection, and she has experienced more than 3 years of the effects of the infection now. When you look at an MRI of Elise's brain next to the textbook picture of someone else that had this infection you cannot tell a difference. They are identical. The evidence is there. Science wasn't able to stop the infection instantly. They even told us, there is no way the medicine alone could have made this drastic of a difference so quickly. Well......something did.

All through Elise's treatments we heard, "this is very unusual" ,or "we have never seen this before", or "we can't explain why this has happened." After a while, it doesn't really need an explanation. I know one day I will understand it all and I will be able to ask my questions face to face with God. I'm not of the belief that either science is right or God is right. They can both exist. But, when science has reached the end of what we know, something else has to be there to pick up the slack.

Abby and Elise Easter of 2011

I vividly remember Elise telling us "I'll be okay" when she was diagnosed with cancer. I also vividly remember her telling the nurse "thank you" after they had just pumped her full of chemo in hopes of killing cancer. I was still angry she had cancer and I knew there was a 50/50 shot we were either killing her or killing cancer. She was sick as a dog, but she rolled over and said "thank you."

The picture on the right was taken at Easter two years ago. We were in our first six months of learning about seizures and you can tell by the huge shiner on Elise's right eye how those were going. Now, two years later, we haven't made much progress in the seizure control area, but I have come miles in my faith.

I still don't know "why". I have come to terms that I may never know why in this lifetime. I also do not believe that God had a plan to give my daughter cancer, or for any of the other kids in that hospital to be in the predicament they were in. But, I do believe God was there all the time even when I was questioning his very presence. I also don't believe this happened so that I (or anyone that has come to know me) may come to have a better relationship with God. That has certainly been a byproduct of this experience, but my mind cannot reconcile that my child had to suffer so that you could have a better relationship with God.

But in the end, isn't that what Jesus did? Didn't he suffer in the worst possible way so that you and I could have a better relationship with God? Many "odd" experiences happened to me when Elise was going through treatment. As I was commuting back and forth that 2 hours each way I frequently heard George Strait's "I Saw God Today" on the radio. The chorus says, in part, "I've been to church. I've read the book. I know he's here, but I don't look..." That song always made me think about the people that I encountered that day. Whether it was another child in the playroom, another parent on the cancer floor, or some random stranger I saw in passing I could always see some correlation to how that person provided something that I really needed in that very moment. To listen to the official version of that song, click here.

I am not someone that is comfortable going out and "recruiting" people for the church. Even this, has been difficult for me. My bible knowledge is sometimes lacking and I certainly don't have many answers. But, I do know how God has impacted the life of my family and hundreds of families that we have come into contact with through this journey. The bible certainly gives you leeway to make your own choices as evidences below.

"But if serving the Lord seems undesirable to you, then choose for yourselves this day whom you will serve, whether the gods your ancestors served beyond the Euphrates, or the gods of the Amorites, in whose land you are living. But as for me and my household, we will serve the Lord.” - Joshua 24:15

Honoring the First Woman I Ever Loved

One of my favorite pics of my mom.

Today would have marked my mom's 75th birthday. Sadly she lost a decades long battle with Diabetes and Heart disease a couple of years ago. I still think about her every day and the impact she had on my life is evident in many areas.

Last night I said to Kelly, most of the characteristics you love about me came from my mom. And, how true that is. I only wish I could have gotten around to some of those characteristics sooner. My mom was a caring soul. She devoted her career with the State of Kansas to helping others in whatever way she could. She worked with clients that were struggling financially, physically, and emotionally and was always an advocate for taking care of those less fortunate in our society.

Even if she only met you once in passing, she cared about you. She could get away with it because she was an "old lady". But today, many would even say she would stalk you! She was likely to call someone up out of the blue, someone that she barely even knew, and would talk with them about how they were doing. She would just say, "you have been on my mind lately and I wondered how you were doing." That was just who she was.

She sat through countless baseball tournaments, softball tournaments, bowling tournaments, music concerts, and various school programs. When I was growing up she didn't miss a thing. Even when I went to college she would make the trek to come and watch me perform at whatever event was taking place.

Fishing was my dad's thing, but mom had the skills! She didn't always go out fishing with us, but when she did, she always caught the most fish. And, she was old school too. She didn't need anybody to bait her hook or take the fish off the line either. If she was going to catch the most fish, the least she could do was take care of herself right? And, she always did that with a smile on her face and razzing my dad about fishing the whole time. Then when we got home, she would spend hours at the kitchen sink cleaning the fish. Yeah, you read that right, she would clean the fish right there in the kitchen sink. It would stink up the whole house and there would be fish scales all over the floor, but that's where she did it. She was going to clean it up anyways, so what did it matter?

One of my best Christmas memories has to do with something she "made me" do when I was a high school kid. The nursing home was an important place to her and it was important that the people there be treated with dignity and know that they are not forgotten. One year she thought it would be great if we (turned out to be her and I, my dad couldn't be bothered with the idea) went to the nursing home with gifts for those that either did not have family or wouldn't be visited by family that year. She contacted the nursing home, learned the names of the people that fit this description, and got a list of things that they needed. We went shopping, wrapped those gifts, and took them to the nursing home the next day. I thought we were just going to drop the gifts off at the front desk. I was cool with that. It turns out, she wanted to meet with each of them face to face. Several of them were in extremely bad health or had lost their mental capacities all together. She didn't care about that, they still deserved to be talked to like anyone else. So we sat with them while they opened their gifts, or we opened the gifts for them. While this was very awkward for me as a high school kid it certainly helped me to see the importance of treating these people with respect. Integrity was everything. They didn't know we were coming, they were not expecting anything, and we weren't obligated to do anything specific. But, she taught me to do it anyways. That is a lesson that is most vivid in my mind when I think of my mom.

Up until Elise was diagnosed with cancer my mom and I spoke every day on the phone. It slowed down a little bit while we were immersed in treatment and traveling back and forth. But, I don't think it ever went past three days. Usually the conversations weren't long, and she wished there was more she could do, but it was important to check in. She was always good for a long conversation about nothing to keep me awake during my frequent drives between Kansas City and Junction City. As I commute to work between KC and Manhattan now I still think about calling her every time I get in the car. Turning the radio up really loud and putting the windows down on the highway just isn't the same, although she was known to do that as well.

I was very fortunate to spend some quality time with her the week before she passed away. She was experiencing some strange issues with her heart and her overall health had her extremely concerned. She ended up in KU Medical Center which was only about 10 minutes from my house. For several days I sat with her all day and most of the evening and talked about all sorts of things. It was more than we were able to talk face to face for the two years prior to that. After much prayer and conversation she decided to do "nothing" about her heart issues. She didn't want to do surgery that may end up with her losing her life in the operating room, she just wanted to go home. Once she had spoken with everyone and felt she had their "blessing" she was at peace. As I helped load her in the van to leave KC when she was discharged she had a smile on her face and plenty of funny things to say. It was a good day. When I went home to Kelly I told her, "I don't think I will see her alive again." Four days later she was gone. I was blessed to have the time with her that I did.

The memories she left behind are ones that I will always cherish. She loved well, was caring about everyone, and wanted with all of her being to see the best in people. I can only hope to carry on her legacy in the same manner. I miss her every day, but I know that she is present in every part of who I am today. I hope that everyone has such a positive role model in their life as my mom was in mine.

Do You Ever Really Know People?

As I have read through the past couple days of Facebook posts a couple of things have become extremely alarming to me. First, I found myself asking several times, "Is the person posting this really the person I thought they were?" Second, it has become very apparent to me that my present self has become quite distant from my past self.

As I look through the interactions I have with people I can easily see the difference between the people I call my friends and some of the "friends" I have on Facebook. It appears there are some people I agree with very little. That is kind of concerning! When I reflect on how I came to know that person, or in what capacity I truly "know" them, it becomes a lot more clear. There are several people I know through various past employments, former students, people I met in college, family, and some I have known since I first stepped into Eisenhower Elementary school for my first day of kindergarten. Just as I know that I have changed over the years, it is sometimes shocking how much others have changed as well. Sometimes even my own extended family I have a hard time relating to. I don't know that this is a bad thing, but just something I have become hyper aware of recently.

Even just a few short years ago, I would have been quick to give you my opinion whether you wanted it or not. For that matter, I probably wouldn't have cared if you liked it or not either. Nowadays, not so much. I still fight the urge and sometimes the urge still wins out, but generally I put a lot more thought into what I say before it actually comes out. That has served me pretty well in the past few years. As I was reading through a thread that one of my friends posted on, I was truly amazed by the things that people say to each other. I guess there is "safety" in the computer and a person can say what they want and never have to face the person they disagree with. One could always say that people are entitled to their "wrong opinion", but does that have to be so hate filled?

There is no doubt that I am a Christian and my beliefs align to what the Bible says. That does not mean that my actions don't stray from my beliefs. Sometimes I say and do things that, when given more thought, don't always align with what I believe. I am human. I was amazed when reading that thread today that frequently there was no difference in the words being used by believers and non-believers. They were so busy hating each other that neither could see they had strayed from the point completely.

Being respectful to other people shouldn't matter if you believe in God or not should it? Often times folks are so concerned about their freedom of speech and religion that they forget that everyone has those same freedoms. With that freedom comes disagreement. That is a "joy" of our society isn't it? Several of my friends posted a quote by Rick Warren that I think sums it up pretty well. It reads, "Our culture has accepted two huge lies. The first is that if you disagree with someones lifestyle, you must fear or hate them. The second is that to love someone means you agree with everything they believe or do. Both are nonsense. You don't have to compromise convictions to be compassionate."

Whether you are are discussing same sex marriage in your home, your work place, or Facebook shouldn't affect your need to be compassionate towards others. I would challenge, while this quote has been used heavily the past couple days in the marriage equality discussion, it pertains to many other areas of life as well. You may not see eye to eye with others politically, professionally, or personally, you may not agree with their lifestyle, the way they raise their kids, or the way they talk to their spouse. In the end, spewing hate toward someone else isn't going to miraculously change their view. It has taken me many years to put thinking before speaking and trying to ensure that what I say is truly what I mean. If most people would even make the effort to do just that, the world would be a much better place.

Change is Good! Right?

Change can sometimes be a very gradual thing. Generally in life, that makes adjusting to change much easier. Over the last couple of weeks, we have come to realize that "normal" or what they call in the medical world "baseline" for Elise has been slowly changing. This kind of change hasn't been for the better.

As I have discussed before, Elise has a pretty severe seizure disorder. She has myoclonic and drop seizures that have been uncontrolled by all medical methods we have tried. She has single drop seizures throughout the day and clusters together many seizures at various times throughout the day. On good days, when things have been under the best control, she will have 100-150 seizures. We haven't seen those good days in a little while. In December Elise came down with the flu. This originally changed her "baseline" for the better. She even had a couple of days where her seizure count was in the single digits for a whole day! In January she came down with a different strain of the flu. After a sickly couple of months it is not unusual for her to take several weeks to establish a new "baseline". We are quite used to watching her, experiencing new things. and being aware she will slowly return to whatever her new normal will be.

We have been watching and eagerly waiting to see how things will be different. Reluctantly we see that things are different, but we don't like it! We try to count her seizures 2 days per week to keep an accurate record of changes over a period of time. It is easy to say, this has been happening forever because it truly feels that way. But, with the doctor, it helps to be able to accurately say that things began to change on this date and I have the evidence to support that. While Elise was sick we stopped counting seizures and have gotten out of practice for several months. Today, we decided to get back on the horse and count. That isn't always easy to do at 3:30 in the morning when you would rather just fall back asleep and your brain doesn't always want to count higher than five.

I would say that today was an average day. After almost 24 hours, Elise had 405 seizures today. Wow! How was she even able to function? The first seizures began at 3am. Most times she is tired after seizures and willingly goes back to sleep quickly. She doesn't always stay asleep, but she will go back to sleep. Today, that didn't happen. She was up from 3:00 - 6:00 a.m. and then finally decided to go back to sleep. Later this morning I decided to take the girls with me to look for some spices from the KC Barbecue Store. As soon as we were about to pull away from the store Elise had a seizure in the car. I put the car in park and went around to the rear passenger door to hang out with her and try to prevent her puking all over the back of the car. Instead, she apparently either bit her lip or her tongue during one of the seizures and was bleeding everywhere. Between the blood, the drool, and the seizures a joyous time was had by all. Once that cluster was over she dozed a bit in the car, but was up and at it when we returned home 20 minutes later. She had another cluster after we left an event at church this afternoon, other cluster an hour later when we tried to take a nap, and her final cluster at bedtime.

As we discussed it tonight we are always amazed at what you get used to. It felt like she "might" be having more seizures, but double her previous baseline is quite a change. Quite a drastic change really. On top of that, she has been having drop seizures and falling more as of late. Right now, she kind of looks like a prize fighter again. She has a really ugly multi-colored mouse under her left eye, several scratches on her nose, and a very ugly scrape and multi-colored bruise under her chin. It's a good thing she wears a helmet with a face guard isn't it?

One of the biggest challenges we face is in making medicine adjustments for her. For one thing, they rarely ever (could be read never) work and it takes forever to get her back off of a failed experiment or make further adjustments. She has taken dozens of medicines for her seizures, been on a seizure control diet, and attempted chiropractic treatments for seizure control. Usually something new works well for a couple of weeks, but we are back to the drawing board within a month or two at the most. Changes to medicines or routines means more tracking, more record keeping, and more communicating with the doctors office. Having a child with special needs, the last thing you need is to have to keep track of something else or to be given more to do. With the laundry list of specialists that are seen as well, more doctors appointments or phone calls aren't high on our list of desirable activities either.

But, unfortunately, those things are necessary evils. While we don't like it, and are too busy to do it, most of Monday will be spent on the phone with various offices in the midst of all regularly planned activities. Until changes can be made, we will continue to count, wash the blood and puke soaked coat, and take advantage of the "good" times when they are available. Even after a day like today, Elise can laugh and be happy. There is no reason that we cannot do that as well!

Come Join Our Team!

Sitting in the Dumbo seat at Disney's Magic Kingdom!

In October of 2011, we had the pleasure of participating as a family in Elise's "Make a Wish" trip. It was truly an amazing experience! Elise has always been enamored with princesses. Before she lost the ability to verbally communicate, Kelly had talked with her a bit about what she might like to do when treatment was all over. Overwhelmingly, she wanted to go see the Disney princesses. When the opportunity came calling, we were honored to be a part of such a great organization.

Like I have posted before, it is our desire to give back in every way possible. With that, I am hopeful that others will join us. The next way we are giving back is by creating a team for the "Walk for Wishes" event that will take place in Kansas City on the morning of April 6th.

I have created a team web page that you can visit to learn more about this event. Click the link to learn more about this great event: http://kcwalkforwishes.kintera.org/teamhelmetcam. If you are interested, we would love to have you walk with us. There is no financial obligation. If you want to donate to our team and to the Make a Wish cause, you can do that as well on the website.

The Make A Wish Foundation has provided more than 230,000 wishes since they began 30 years ago! Families that go on "wish trips" do not pay anything out of pocket and get to experience the magic of whatever their child can dream of. If this is of interest to you, please join us! We would love to have you!

Good Time and Relaxing Time Don't Go Hand in Hand

Like many people with school age kids, we are in the middle of spring break! Boy do I miss getting a spring break from my teaching days. Elise finished up with school last week on Thursday and we took off early on Friday morning to spend the weekend in Omaha, Nebraska. As with most times we venture out we always have mixed feelings that settle somewhere between, "Why do we do this to ourselves" and "this is a good time." This weekend was no exception.

After we made it a whole 60 miles from our house we had to stop for the first bathroom break. While Kelly and Abby were inside, I decided it would be good if Elise and I stretched our legs. She took off walking down the sidewalk with me, got the end of the path and missed the slight step down sending her face first onto the concrete pavement. We aren't even an hour away from the house and haven't been out of the car 30 seconds! Already Elise is bleeding. This was the first time on the trip I asked myself, "Why do we do this to ourselves?"

The girls at the Omaha Zoo.

When we eventually arrived in Omaha we headed straight to the zoo. This was my first trip there and the first time there for our kids as well. It was a great weather day, sandwiched between some pretty chilly days, and made for a pretty enjoyable day to be outside. This was the first time I thought, "This is a good time." After walking all around the zoo, we finally made it back to the front gate to get a snack and something to drink. I'm not sure why they thought it was a good idea to only have one concessions area open on a day when thousands of people were enjoying the zoo as part of their spring break! We settled in to a nice quiet area inside to rest our feet and enjoy a little refreshment. Two minutes into our break, Elise had her first seizure. That one was followed by a couple of it's closest seizure friends and the ever present retching that comes with it. As always, "Why do we do this to ourselves." But, this too shall pass. As it did, we moved on to the final areas we wanted to see before calling it a day and heading to the hotel. When we got in the car, we were a little disappointed in the number of animals that were not out at this time of year, but managed to all say, "This was a pretty good time." Near the hotel we found a burger joint to enjoy a quick dinner before checking in to the hotel and experiencing the water park/pool. After a couple minutes of being seated at the restaurant, Elise has her first seizure, repeat everything I said above, and "Why do we do this to ourselves?" Once again, this passed as usual, we finished dinner in peace and we managed to escape the restaurant without needing a clean up on aisle seven.

Once we got checked in to the hotel we dressed for the pool and made our way down to the water park. This was certainly a "water park" in the loosest sense of the word, but it was just fine for our little people. They really enjoyed the slides and being able to touch the bottom at almost every area of the pool. "This was a pretty good time." That sentiment was followed pretty closely with, "Why do we do this to ourselves?" as we got the girls ready for bed, medicine for Elise, listened to Abby cry because she was exhausted from the day, and we settled in and turned all lights off before 9pm. Our room was pretty small and didn't allow any of us to take much of a break from each other. Fortunately, we were all exhausted and it served it's purpose without any problems. As Elise woke us up in the night and we struggled to get her back to sleep without waking Abby, we again asked, "Why do we do this to ourselves?"

Saturday came with similar ups and downs. We enjoyed a visit to the Omaha Children's Museum. If you have young kids, this is a must see in the Midwest. The museum could put even the most mild mannered of adult into sensory overload! There was a lot to take in. Sometimes "This is a good time" and "Why do we do this to ourselves" was used in back to back sentences! It was a very neat place, but also quite overwhelming and VERY busy. We finished the day with another trip to the burger joint with some friends we had not seen in quite a while. During dinner we watched the K-State vs. KU Big 12 Championship game. Needless to say, this was full of "why do we do this to ourselves" moments, but for a whole different reason. We finished our night with another trip to the water park and were again in bed about 9pm.

As we were driving back on Sunday, I was trying to decide what was so "fun" about all of this and exactly "why do we do this to ourselves". Sometimes the answers aren't all that clear, but we do it anyways. It is really important to us to lead as "normal" a life as possible given all of the challenges that Elise has. That usually means a few more stops along the way to wait out seizures, vomiting, or to clean up the various messes that have come from us pushing the limits. Sometimes we aren't able to stay somewhere near as long as we would have liked, or we don't get to see everything that we had hoped for, but we do what we can. Traveling with kids without extra health issues can be exhausting. Just loading the car to travel with a child with special needs is often more exhausting that I could even explain. But, we do it anyways. As they experience new things the smiles on their faces make it worth while. The laughter that comes from sliding into the water at the water park over and over again, not only makes it easier to go to sleep, but gives me something to smile about before closing my eyes as well.

As I looked in the mirror on Monday morning I could see big bags under my eyes. When I was sitting in the car with Kelly this afternoon I saw the exact same thing under her own eyes. Admittedly, we are/were both tired. Someday there will be plenty of rest for the weary, but for now there are great times to be had. This weekend was fun, and while we will continue to ask it, I'm pretty sure we know why we do this to ourselves. We'll never get another chance to make the same memories with our kids, so we take advantage of the opportunities while they exist. Maybe tomorrow will be a more restful day!

Be Careful What You Wish For.....

We spent Saturday morning going on a nice walk at the dog park before the weather turned cold and rainy. After a nice afternoon nap we decided to have dinner in the living room and have movie time together before going to bed for the night. Abby chose for us to watch "Annie". Like many things in our life, even that movie has a story behind it.

After Elise contracted a brain infection during cancer treatment, she stopped sleeping. I don't mean the lousy broken nights of sleep she does now. I mean completely stopped sleeping. One of the things we would do to "entertain her" is have her watch movies all night. She really was unable to move around on her own, and she would just lay there for hours watching movies. Among the many movies we played for her was "Annie".

As she was learning to regain some of her skills we really missed hearing her talk. Elise was a very talkative child with a huge vocabulary for a 3 year old. In the beginning her vocabulary came back in just single words. No matter what was happening or what she was doing she would say "Tomorrow"! After watching part of "Annie" for the 50th time we put two and two together and realized she was likely saying one of the words from "The Sun Will Come Out Tomorrow" from the movie! After not saying anything at all, this seemed miraculous. But like anything, it quickly became annoying. Hearing "tomorrow" 3,000 times per day isn't much fun either. I even called Kelly at night once and reported, "Elise has said tomorrow 135 times in the past 30 minutes." Counting them was at least a little distraction for me! We just wished she would stop already!

As her language slowly "progressed" she started to say other single words and even a couple of 2-3 word sentences. One of her favorites was "I'm nakie!(or naked)" As we would get her ready for a bath or shower, I would frequently say to her "your naked" or sometimes "your nakie". She repaid that phrase thousands of times over in some of the most enjoyable of all places. Every Sunday morning she would waddle in to church telling everyone "I'm naked!" Whenever they would say, "Good morning Elise. How are you today?" She would faithfully respond, "I'm naked!" The doctors office, the grocery store, and later even at school. No place was immune to Elise proclaiming her nakedness. Secretly, I was kind of proud of that!

In the beginning, we were just happy she was saying anything. Then we began to work on what is appropriate and not appropriate to say and when to say it. Although, if a 4-5 year old can't proclaim they are naked in church, I don't know where else it would be appropriate! Sometimes we just wished she would stop saying this as well. As it turns out, she has stopped saying this, but she has stopped saying almost everything else as well. We have certainly learned to "be careful what you wish for."

In parenting we frequently wish our kids would stop doing things, stop saying things, etc. We never anticipated she would permanently stop so many things. My brother in law has been going through a lengthy battle with cancer over the past 5+ years. Many times my sister and I have talked about the many things we "wish we knew" about what was going on. She has mentioned, "I wish I knew why this is happening", or "I wish I knew what that means." Over the past couple of years, they have also come to learn to be careful what you wish for. Once those answers eventually come to light, something we "wish" we didn't even know the answer.

Lyrics to "The Sun Will Come Out Tomorrow" - from Annie
The sun'll come out
Tomorrow
Bet your bottom dollar
That tomorrow
There'll be sun!
Just thinkin' about
Tomorrow
Clears away the cobwebs,
And the sorrow
'Til there's none!
When I'm stuck a day
That's gray,
And lonely,
I just stick out my chin
And Grin,
And Say,
Oh
The sun'll come out
Tomorrow
So ya gotta hang on
'Til tomorrow
Come what may
Tomorrow!
Tomorrow!
I love ya
Tomorrow!
You're always
A day
A way!

When I listened more carefully to the song this weekend, and read over the lyrics today, I wondered if Elise was even trying to tell us more. Are there brighter days ahead? Is it a matter of finding a way to clear away the cobwebs and the sorrow? Could it really be that simple? I'm just thankful she isn't a Garth Brooks fan and hasn't learned "If Tomorrow Never Comes." In the beginning she told us, "I'll be okay." Like us, I don't know that her day to day life currently is what she envisioned.

As I sit with Elise and try to talk with her, I can still see the wonder in her eyes and the way her mouth is trying to grasp the words. Somewhere between where her brain is firing and her mouth, the ability to spit out the words is just gone. Generally she says nothing. That is not something that we ever wished for. Every parent wants their child to be able to answer their questions, tell them when something is wrong, and say I love you at the end of the night. Often, "I wish" Elise was able to do those things. When it is most difficult I try to remember to "be careful what you wish for." She does say all of the things that I want her to say, it just happens in a different way. Maybe someday she will be able to speak those words again. Until then, we just keep working on those skills, be thankful for what she can do, and "be careful what we wish for."

Trying to Model What is Important

On Saturday Elise, Abby, and I volunteered with a group from our church at one of the Ronald McDonald House's in Kansas City. This is something that I have wanted to do for the past couple of years and I am glad that I finally made the leap to get it done!

It was kind of a surreal experience being back in the house. When Elise was going through treatment we spent some time living in the Ronald McDonald House, and it was generally during some of our darkest hours. With Kelly's parents living 30 minutes from the hospital, and one of us always sleeping in Elise's hospital room, most of our time was split between staying at the hospital and her parents house. But, there were several times when Elise ended up in the ICU and we had to move out of her regular hospital room. Once that happened we generally got a room at the Ronald McDonald House so that we could be as close as possible to the hospital in case things didn't go well in the night. Fortunately, there were only a couple of times we made the middle of the night trek back to the hospital, and we were always glad to be close. Kansas City is fortunate to have two Ronald McDonald Houses (and they are about to break ground on a 3rd house!). It is sad there is such a need for it, but it is a great place for families with sick kids. We were "fortunate" to live in the Ronald McDonald House in Cleveland, OH for a week when Elise was undergoing some testing at the Cleveland Clinic. It was nice to have a place to call "home" while we were away from our real home.

I was emotionally touched by my experience there some two years ago and I always wanted to go back and try to repay that in some small way. For no good reason, I just haven't been able/willing to make it happen. I realized this past weekend that it was a little emotionally harder that I thought it would be. As I mentioned above, we lived in the house during some of our darkest hours. Like anybody, I think of those times often, but I don't try to linger too long in the places my mind doesn't want to stay. As I talked with several families in the house this weekend, I could see the same stress on their faces that I once felt, and I got to witness the relief of another family as they were finally taking their child home after a very lengthy stay in the hospital and later the house.

A place like the Ronald McDonald House runs almost solely on volunteers. Hundreds of hours per week are given by people to ensure that the needs of families are met. Meals are provided, gift cards for some of life's necessities are provided, free tickets to some attractions and entertainment are available, you name it. There are many great opportunities to try and get away, mentally and physically, from the struggles at hand. Before Elise was sick, I did try and volunteer some, but it certainly was never at the forefront of my mind. I wouldn't say I am a "rock star volunteer" now either, but it is frequently on my mind and I am quick to be willing to give time to help somebody else out. We certainly have been on the other end and needed the help. I am glad now that I can pay it forward like many have done for me.

Abby, Jess, and Riley

In case you are wondering, there isn't really anything easy about taking a six and four year old volunteering! Elise has worse concentration than any case of ADD I have ever seen, and Abby is mostly interested in snacks and playtime! But, it was important for them to go and to learn to give back. While I helped Elise accomplish the tasks that we were assigned to work on, Abby made a new friend in Jess. We had never met her before, even though she goes to our church. Jess offered to take Abby along with her and help her accomplish the tasks they had as well. I was certainly thankful for the help, and I think Abby got even more out of this experience by getting to help someone else. Abby said she didn't really remember coming to the Ronald McDonald House, but she did remember where you had to go to eat!

In our family, our lives have been tremendously impacted by people that have volunteered their time to many organizations and charities. In just a few short years we have come in to contact with the Ronald McDonald House in Kansas City and Cleveland, the Make a Wish Foundation, Major Don's Army, Cancer Action, Give Kids the World Village, Children's Mercy Hospital, Leukemia Lymphoma Society, American Cancer Society, Children's Miracle Network, and Variety the Children's Charity. Our lives have been touched on a weekly basis by the great volunteers at the Junction City Church of the Nazarene when we used to live in Junction City/Geary County and Central Church of the Nazarene in Lenexa now. I'll likely toot the horn of some of these great organizations in another post in the future. If you are interested in learning more about them, click on the link for each one.

Not everyone has the same needs, likes, and interests that we have. There are many other volunteer opportunities out there besides children's, medical, church, and health organizations. I encourage everyone to do like we did. It was about 3 hours of our day. That's not too much in the scheme of things. Find an organization that needs help, that you have a passion for, and that makes you feel like you can make the difference in the life of someone else. All of these organizations need money to run. If you are able, you should find something to support to the best of your abilities. Even if you can't find it in your budget to donate money, you likely can find time to donate. It won't cost you anything! And, you never know, it may impact the lives of a family like ours and lead them to pay it forward as well. You could start something big in your own life and the life of others! Just do it! After a great day of volunteering, they might even have a big rocking chair for you to enjoy too!