Does God Really Answer Prayers?

This is a topic I have wrestled with for YEARS! If you are only here for the synopsis of my thoughts on this topic, the answer is yes. But, the answer may not come in your time frame and/or you may not like the answer when it comes.

I generally contemplate this thought when going through some difficult health situation or when seeing friends and acquaintances going through something difficult. We (collective we as a society) grasp on to the "I'm praying hard for you", "Praise God for answering our prayers", "I know that God will make everything alright for you". If we get the outcome that we want, then life is full of, "Prayer works!", "Thank God for answering our prayers", "Your faith brought you through", etc. But, how true is all of this? Let me walk you through a multiple year example of this in my life.

Back in 2009, my daughter Elise was diagnosed with cancer. Obviously, there were a ton of prayers for complete healing for her by our friends, family, acquaintances and people we didn't even know. After many months of treatment, she was cancer free. Our prayers were answered! Right? During cancer treatment, Elise contracted a virus on her brain and lost all of her skills up to that point in her life. In case you wondered, I don't think anyone prayed for that to happen to her. She was cancer free, but now she was saddled with a lifetime of issues that remained from that brain infection. Was this God's answer to anyone's prayers? She was cancer free, but now had an entirely different issue.

During the last 12 years of her life, Elise suffered from a severe form of seizures that impacted her life in many ways. Many times per year she would have a day where the seizures were out of control and we would have to do some kind of medical intervention. Before it came to that, more times than I can count, I found myself on my knees next to her praying for the seizures to stop. RARELY did this ever happen. I have a vivid memory of one of my most challenging nights grasping that "God Answers Prayers" when I was holding her hand and praying out loud for God to make the seizures stop. It didn't happen and in a matter of time I was sitting next to her at the hospital instead. Where was "God Answers Prayers" in this instance?

I can recall a time when Elise was probably 5 or so and we were all REALLY struggling with everything that seizures bring into your lives. There was so little working and so much frustration. In one of those really tough nights I remember going outside and having an out loud conversation with God. She did not deserve this. Was she, and ultimately we, being punished for something with this awful experience? I remember at that time challenging God to make them stop or take her off this earth and stop her struggle. Honestly, I know I said out loud, "Stop fucking around with this and DO something!" Probably not the way to talk with God huh? But, I also know that he knew full well I was thinking it, might as well get it out there. Little did I know there would be years more of struggle with her seizure disorder and unanswered prayers.

I had a conversation like that with God many times over the years. While I still don't have a clear understanding of the "why" life was like this for her, I did gain a much clearer perspective over time. What was I praying for? Complete healing? Relief from all struggles? All of the above?

I can say with certainty that she was happy all the way to the end of her life. As we were really struggling with how best to help her in the last couple months of her life, I sat next to her and asked her lots of questions. If you knew Elise, you know that she was non-verbal. Conversations were pretty unconventional. But, we had learned over the years that she would answer yes and no questions by pointing to one of those options on a "Yes/No" card that we had. As we struggled with how aggressive to be in helping her, I really wanted her to have some kind of say if possible. We talked with her about all that was being said to us by the various doctors. Near the end of that conversation, where we had been talking about quality of her life, I asked her "Are you happy?" She answered yes pretty quickly. And, I absolutely believe that.

This picture was taken on the day of that conversation. Twenty two days later, she was gone from this earth. So, can I say that my prayers were answered? Maybe I guess. But, which prayer was it?

Toxic Positivity?

I believe I first encountered this term a couple of years ago through the social media post of a friend. The article, at the time, put into perspective what I was often thinking and wondering to myself. So many people, myself included, have gone (or are going) through some heavy stuff. Rather than embracing the difficulty, the American way is to diminish the difficulty in any way possible. We say things like, "at least it isn't (insert term here)" or, "everything happens for a reason." Are those things helpful?

We are a make it go away society. We want to be able to put our heads in the sand and believe that everything above ground is sunshine and roses. Unfortunately, that just isn't the case. In my experience, those places with the most toxic positivity are truly just the most toxic in general.

Sadly, social media hasn't been too helpful with this cultural problem. Posts are full of the most positive parts of our days, putting a positive spin on a terrible situation, or just flat out lying about current conditions to make it seem that all is right in our lives or the world. Why do we do this? Why do we feel it is important that everyone believe that we have it all together and that everything is sunshine and roses?

I can't even begin to recount all the unhelpful things that have been said to me over the years. In an effort not to embarrass my friends and family, I won't attempt to account for all of them either. I started to write this post back in February of this year. It was less than 2 months after Elise passed away and I was pretty tired of the everything has to be positive mentality. But, I never finished or published a post.

Now, several months later, I don't feel any differently about the post, but I might take a slightly different slant to presenting it. Maybe you haven't gone through what I have gone through (and I hope you haven't!), but that doesn't mean there aren't some heavy things going on in your life. It doesn't just have to be when someone significant in your life leaves or passes away. It could be dropping off your baby for the first time at daycare, school or college. Those can all be proud days, but also profoundly difficult. Why do we have to act like they are not?

Over the past several years, I have truly been trying to work on just meeting people where they are. When they are happy, I am happy for them. When they are struggling, I try and listen and not solve it. When they are hurting I hurt for them as well. It really isn't THAT hard, but it has to be intentional. Let's stop with the Toxic Positivity and learn to meet people where they are. That is my hope for all of you and our society as a whole.

Navigating the Road of Grief

Elise's Grave on July 11th

Both of my parents passed away several years ago. They are both buried in the Kansas Veterans Cemetery located between Fort Riley and Manhattan. If you have never dealt with a cemetery before, working with a veterans cemetery is about as easy as it gets. You have very few choices to make. They tell you where your loved one will be located and work with your funeral home on all of the details of the burial. Shortly after the burial, I believe it was within a week for both of my parents, the headstone is placed and the area is sodded. The first time you go to visit the grave, there is very little sign that anything has taken place there except for a new marker with the name of your loved one attached. It was certainly not like that with Elise's grave and I have found myself unprepared for that many times.

The "easiest" sign of all of that is the grave marker or headstone. The funeral home was very up front with us that these have been taking a VERY long time to be placed since the pandemic began. We may be lucky to see it in place before we reach a year of her passing. Other than supply issues, there is no real reason why it should take a year for these to be placed.

So, with that, we did not return to the site of Elise's burial and all was beautiful and serene. Far from it. I have actually found the appearance of her grave to kind of mirror how I have been feeling as I navigate the road of grief. The first time I went to visit Elise's grave, it was a bare mound of dirt that was probably 18 inches high. It remained that way for a while. That mound was bare and heavy helping the ground below it to be settled. Every time I visited it was a harsh reminder of how fresh her death was for me. Like the ground, I was unsettled and the weight was sometimes a lot. Over time, the weight of it all forced me to make space and allow life to settle around me, whatever that looked like.

After a couple of months, the grounds crew scraped the top off of the mound and made it more level to the ground. This created a different look and feel. Not better......just different. As the ground cracked and settled more, the crew continued to add dirt and finally a little grass seed when spring came. Like many places, we had a really dry winter and spring. That lead to not much growth and a lot of ground cracking. Probably the same could be said for me. I never really felt too settled and I was often discovering cracks that I didn't anticipate.

With spring and the planting of grass seed, we started to see a little growth. However, the weeds are more hardy than the grass. There are a lot of bare spots, and A LOT of weeds, but there is growth. As you see in the picture above, it is kind of a sad sight today. I have expressed my frustrations with the guy in charge of the cemetery. It improved for a little bit, but not for long. Elise's grave is the only new grave in her section. Sadly it sticks out like a sore thumb.

Her grave is a direct reflection of how I feel many times nowadays. I know it is more of an inner feeling than a reality (at least I hope so!). As I have navigated the road of grief, I have been surprised by many of the things that stick out. I have been surprised by the weeds that have popped up. And, I have been surprised by the amount of time it takes to see even small progress. But, I know that progress is happening. Progress has not been beautiful or smooth. It has been full of weeds and sometimes ugly.

In the next month or so, summer will subside and fall will begin. At that time I can focus on making her plot look better. That is important to me. In the mean time, I'll continue to work on myself and see where that takes me.

Is that a good thing?

I have been circling back to that statement over the last month. Honestly, I have been wrestling with this very sentiment since Elise passed away 5 months ago.

I  ran into a friend back in May at an event. We know each other but not very well. I can generally talk relatively easily to people about Elise. That is not always the case when I talk with special needs parents as I know that they have an intimate understanding of the pain I faced prior to Elise passing away and can relate far better than most now that she is gone.

He hit me with most of the usual questions. "How's Kelly doing?" "How has Abby been handling things?" "How are the two of you doing with each other?" Etc. Then I told him that I have just found myself in a very lost place regarding time. EVERY aspect of our lives revolved around the needs of Elise. Then suddenly, that was gone. There were no more feedings to be done, no more briefs to be changed, no more medicines to give, no more seizures to log, no more doctors appointments, no more teacher texts, no more "strangers" going in and out of our house helping to care for Elise, no more hospitals, no more..........anything. For a little while, life just stood still. What do you do when you suddenly have nothing but time on your hands?

So I said to him, "we have so much time on our hands, we don't know what to do with ourselves." Then he asked, "Is that a good thing?" That question stopped me dead in my tracks. I didn't really know how to answer or get away from that one, especially in a way that wouldn't cause some kind of break down in a public setting. Nobody wants that.

The way I suddenly got all of this free time in my life is that my daughter died. A HUGE hunk of my existence is gone. How do I celebrate this new found freedom when it cost me the life of my daughter to get it? Is it a good thing to have free time and be able to make choices to fill it? Absolutely! But, it has been impossible to reconcile being happy for the time when I look at what the cost has been. Not easy.

Back in April I took Abby to buy a new bike. It was something we talked about on our spring break trip in March. We decided that they carried the bike she wanted at home, so there was no need to buy it in another state and have to lug it around with us. I picked her up from school one day to take her to an appointment. When the appointment was over she asked "Can we go buy my bike?" There was nothing for us to hurry home for. Nobody was waiting on us. So, we went and bought the bike. When we were driving home she said, "that was kind of fun! We just decided to go to the store and did it. We didn't have a make a plan for another time. I really enjoyed that."

When I truly think about it, I realize that what she was saying is just completely foreign to most people. EVERY need and want was put behind whatever had to happen for Elise. So often Abby would request something like going to the store and it might be a week before we could make that happen. Spur of the moment just did not happen. She also understands that enjoying spur of the moment has come at a high cost. She also mentions to me how it feels weird to be happy about such "normal" tasks.

As a family, we are learning to enjoy this new found freedom little by little. "Is that a good thing?" I'm not so sure about that yet. I am learning to find that joy. But, the cost of that new found freedom is higher than I was prepared to pay.

"I Really Don't Know What to Say"

That single sentence is the one thing that has been said to me most since Elise passed away. Most folks choose one of two paths. 1) They are searching for something profound to say that will be just "right" and they spend a lot of time stammering around and often times say things they wish they hadn't. 2) They say nothing at all. If you think it is uncomfortable, try to put yourself in my shoes. It isn't just this one interaction. It is MOST interactions I have with people right now. 

Yesterday, I had the most out of left field experience that completely caught me off guard. And for once, it was not in a bad way! I have been sitting on the planning committee for the first KyMel FORE Kids charity golf tournament. As most of my friends know, KyMel is the organization that runs Camp Hope and Camp SIBSational which have greatly impacted both Elise and Abby's life. One of the presenting sponsors for the tournament was the RisnerUp foundation, which is the foundation of former K-State football player, and current Denver Bronco, Dalton Risner.

I have met Dalton 2-3 times before and those interactions have always been great. It only takes a moment of talking with him to realize that he is an amazing human being. I only wish I was as articulate and well thought out as he is when I was his age (and probably now too).

I was able to shake hands with Dalton and say hello shortly after I got there. I thanked him for his consistent support of KyMel and we both moved along to other things. A while later, my golfing partner showed up. Dalton is good friends with my golf partner for the day, Michael. Michael and his family wanted me to meet Dalton, and before I could tell them I had already talked with him this morning, there we were standing face to face with him again. After again shaking hands and meeting his fiance, he said "Tony can I talk with you over here for a second?" I didn't think much of that request. Honestly, I thought he probably wanted to talk with me about his friend Michael.

Instead, he said, "I heard about what happened with your daughter. I'm sorry for your loss. No parent should have to go through that. I just want you to know that I care about you. Whether I know you a lot, or know you a little, I love you and I care about you. Nobody should go through something like this alone. God loves you and I'll be praying for you." And, that was it. Short and sweet. I was floored. I was touched. And, I was speechless.

He isn't someone that I really know. He didn't say anything profound. What he said was simple and straightforward. It isn't really that difficult. When people say, "I really don't know what to say", I try to convey that I don't need profound. Nobody is going to say anything that will make it all better. But, simple and straightforward really isn't that difficult. I encourage you to try that with people in your life that are going through something challenging.

Accessibility: More Than a Sidewalk

Accessible Walkway to Beach

I have received this image, or one like it, many times from friends and family over the years. Sometimes via text, or email, or being tagged in a social media post. In our travels over the years, we have encountered a beach walkway like this several times. They are great! But, don't let that handicapped sign fool you. Many people would rather use a walkway like this than have to walk forever through the sand carrying all of their beach equipment. It is a great way to get access to the water if you have some physical disabilities. And, the best part is that it does not require specialized equipment. So, it can be a win-win. So, that always begs to question, since the beach and water are so accessible, where are all the people to take advantage of this accessibility feature?

What I am about to talk about can be used in a beach setting, a park, stores in any city, airports, etc. Accessible walkways are a valuable tool. Or rather, maybe they are the tool belt and the tools are lacking. I'll let you decide. So again, where are all the people to take advantage of this accessibility feature? For my family, and for many others like we were (that feels so weird to type), they are at home. They are at home surrounded by all of the accommodations that make living life a bit easier on a daily basis. You can work around many of the necessary accommodations needed, but it is impossible to work around the bathroom. You can make a building, a room or a beach accessible, but none of that matters if the person can't maneuver the bathroom.

I recall in college that there was a guy named Randy in a wheelchair that was frequently in the building where the majority of fine arts classes were held. He was paraplegic. He appeared to have full use of his upper body, but his lower body did not function. One time I happened to be in the bathroom when he came in. It was heartbreaking to watch and I had no idea that a person would have to go through this just to do something so routine as to go to the bathroom. His wheelchair would not fit through the door of the bathroom. So, he got himself out of his chair and down onto the floor. He slowly pushed his way through the bathroom door and scooted himself along the floor all the way to the handicapped stall. When he reached the stall, he was not able to reach the latch to the door for the stall, so it had to remain open while he used the bathroom. Once he was in the stall, I left the bathroom. So, I don't really have a play by play of how all of that worked. But, I can imagine. And, none of that is pretty. I'm positive that he drug himself across the floor of the stall, and used the handicapped railing to pull himself up to do his business. Now, as an able bodied person, think about how degrading it would be to have to do this each time you needed to use the bathroom? Would you want to scoot your butt across the floor of a public restroom just to use it?

The Changing Cot

Now, fast forward to my own life some 25 years after this college experience. Elise was not able to help in any way with her bathroom needs. From moving, to wiping, to changing, everything had to be done by us or a caregiver. Elise rarely used a toilet, especially the last few years of her life, so finding a place to change her brief (and often her clothes) was a common occurrence for us. So, when it was time to hit the road somewhere, how we are going to handle the bathroom was always our biggest concern. This past summer, we embarked on a long road trip to California. Kelly had the idea of getting a cot to use for her on our trip. So, that is the method we used. Unlike when she was littler, laying her down on the seat in the van was not as easy as one would think. And, it didn't provide a lot of room for either of us to work either. So, a cot was the next best thing we could think of. 

While resourceful, and pretty easy to use, the main problem we encountered was where to do this at. Stalls in public restrooms are not big enough for a cot and someone to help with changing. "Family" restrooms are rarely large enough to accommodate something like this and they are available in very few places. For a number of years, we used a large custom made (by Kelly) fabric sheet that stuck to the back of our vehicle via some high powered magnets. It was really pretty slick. When not on a road trip, we would just lay Elise down in the back of the van, set up the sheet for "privacy" and get to work on whatever needed to be done. Don't worry, it never attracted weird looks from those passing by.

Set Up in Action

In this image from our vacation, we are actually in a parking lot at the Royal Gorge in Colorado. There was no place out of the way to do this, so right in the middle of the parking lot it was. Abby and I got some good laughs while this was going on. It takes a weird sense of humor to do this sort of thing in a public parking lot in various states throughout a road trip. On this trip we used many a back stall in a gas station parking lot, parking lots of popular sight seeing locations, and even a deserted strip mall that got us a friendly visit from security as he thought we were setting up our homeless camp. I can't make these things up.

Back to that first image of the beach. My primary reason for wanting us to go to San Diego was due to the accessible beaches. They are well known for being the most accessible beaches in the U.S. From our experience, that is true from the perspective of being able to get a beach accessible wheelchair. But, once at the beach, there were no handicapped accessible bathrooms. Our hotel was less than .2 miles from the Pacific Ocean. An able bodied person could be in the water in a matter of minutes from our hotel. But, in order to get to the handicapped accessible entrance, we had to walk a mile down the beach to get into an entrance through the beach wall. We had a beach accessible wheelchair and could take Elise directly into the water. As our luck would have it, as soon as we got to the beach, Elise pooped. After just a couple of moments at the beach, Kelly took Elise off to the bathroom and the life guard station to find out what was available. They only had regular bathrooms, not even handicapped accessible, and the bathroom was disgusting. Kelly considered laying Elise on the floor in the bathroom to get her changed, but changed her mind when actually seeing the bathroom. So, after making the trek over to the beach and hauling all of our stuff to spend the afternoon at the beach, we instead packed everything up and headed back to the hotel after about 15 minutes. Once we got Elise back to the hotel and changed, it was not worth doing it all over again. So, we stayed at the hotel instead.

I guarantee you that there are way more people in your community that have physically disabilities than you realize. You don't see them very often. The lack of bathroom facilities is one of many reasons you do not see them. We got accustomed to going out, doing what we needed to quickly, and getting back home. The idea of leisurely window shopping in some random city, a nice leisurely lunch, some family activities afterword, were all a pipe dream in our world. The reality was that Elise would need to use the bathroom and there would be no place for us to do it. So, it became easier to just stay home. We were not alone in this line of thinking. This is an area of our society that we need to address. Accessibility is much more than a sidewalk or an entrance. How many times have you used a public restroom when you go out someplace? Look around and think about this the next time you are out.

There's No Place Like Home

Sign we bought for Elise on Summer Vacation

As a Kansas boy, there is no phrase more familiar than the old line from the Wizard of Oz, "There's No Place Like Home". This was all that Dorothy had to say, along with clicking the heals of her red shoes together, to bring her back to her life in Kansas. It is a sentiment that many of us feel in our everyday lives.

Elise loved being home. Even if she was happy with wherever we were and what we were doing, she wanted to go home. It was one of the few words she was able to say with relative clarity.

We found this sign in the picture at Dorothy's House and the Land of Oz on a stop in Liberal, KS this summer. Elise used to love her red shoes when she was young, and she loved home. The sign was perfect for her. We found a home for it on the bookcase in her room until the night she died. That night we moved it to the mantle in the living room where it still sits today.

I have spent a lot of time thinking about "home" in the two months since Elise passed away. The sense of home and the comforts that it brings is much different right now. It is not a place full of bad memories by any stretch. But, it is a place full of emptiness right now. There is a hole in our home that didn't exist before. 

I set out to find some uplifting quotes about what home means to some. Obviously, I found some pretty good quotes. But, it was apparent to me that all of them had to do with comfort, light, a place of warmth, etc.

"There is nothing like staying at home for real comfort." - Jane Austen

"Home isn’t where you’re from, it’s where you find light when all grows dark."- Pierce Brown

"Home interprets heaven. Home is heaven for beginners." - Charles Henry Parkhurst

As I am learning to navigate life without Elise in it, that sense of comfort, peace, light, warmth is a bit harder to find right now. Elise's backpack is still hanging on the wall like she is headed to school on Monday morning. Her device is still plugged in on the shelf where it goes every day before and after use. Her empty wheel chair sits in her room. The lift to move her from one location to the next is charging in the corner. All the signs of her presence are here, but she is not. At times it is unsettling.

Kelly is gone to a conference out of town. Abby is in the basement working on her room. The house is completely quiet and nothing "has to" be done. Prior to this past two months, this was not a life that we lived. There was ALWAYS things to be done to care for Elise. I don't miss the amount of work at all, but I miss Elise terribly. I found this quote below while looking for quotes about what home means. I know that Elise is "here" in so many ways. I don't have to look far to find evidence of that. But, it is hard nonetheless.

"Home is wherever you leave everything you love and never question that it will be there when you return." - Leo Christopher