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 

Couldn't or wouldn't? There is a difference.

Sticker on Abby's Water Bottle

Over the last several months I have thought many times about the common sentiment that has been shared with me. When it came to Elise, so many people have said, "I couldn't do what you do." That sentiment never sat right with me, and I just never quite knew how to respond to that.

As we talked with palliative care and hospice near the end of her life, I finally got much more clarity after all this time. The social worker for hospice care said something like, "What you have done with her is amazing. The sacrifices were huge. It is a lifestyle. You made a choice to live your life in a way that would help her the best that you could while she was here."

As I pondered what that all meant to me, I landed on a belief that I have held for many years. "I couldn't do what you do" really isn't a true statement. I have always told people that I am just an average Joe in a very not average situation. If you have ever spent any time with me, you know that I do not have any superpowers. God didn't pick me because I could handle so much more than anyone else. That is simply something we have adopted in our society that is grounded in little to no truth what so ever.

So, if anyone could do what we did, then what? It boils down to "would you" rather than "could you". What if the statement was, "I wouldn't do what you do"? I'm sure many people have thought that over the years, but nobody is going to say that. But, at the crux of the statement, that is what it boils down to right? It isn't a matter of "could" but really a matter of "would". You could absolutely do what my family and I did. It would NOT be easy, but you could do it. So, the question really is would you do it? It is a rhetorical question. Until you are faced with that decision, you likely have no idea what you would do. At least that is how it was for me and many others that I have spoken with about this.

Elise has been gone now for over a month. My every day is so much different that it is sometimes unbearably uncomfortable. The quiet and lack of activity is unsettling. For people that spent so much time at home, we have been used to be SO busy that we could not take on more activities outside of the house. I now find myself with so much free time, I don't know what to do with myself.

When talking with palliative care back in November, the doctor said something to me that I have been thinking about ever since. She said, "Medical advancements over the years have been amazing and have allowed children to live longer at home. But, what we have failed to ask ourselves is, just because we CAN make it so that these medical interventions happen at home doesn't mean that we should. We have not thought about the burden that has been put on the family unit when kids are living at home with extreme medical conditions and not a lot of help from the medical community." This is incredibly true. As things got more and more challenging for Elise, we began to ask ourselves some of those very questions. What was "too much" for her, and also too much for us. I can tell you, these are not easy conversations. I'll probably delve into that more on another day.

We have several friends raising complex kids like Elise. We know intimately the struggles that they face. Telling them "I couldn't do what you do" isn't really helpful. Give them a hand up in whatever way you can. Send a card, phone call, text, make/buy a meal, sit with them, whatever that might be. Just be there. That is all that I wanted, and I'm sure that many others have felt the same way.

Searching for My Place

When I first starting blogging several years ago, there were many people that had been encouraging me to write a book. I understood the reality at that time and knew that it wasn't going to happen right then. It is not out of the question for the future. It is just a matter of doing it. 

Do people want to hear what I have to say? Will it be helpful to me and/or others? What would I even talk about? All of that has been a barrier for getting started over the years. And, more than anything, time was the biggest barrier.

Since Elise passed away on Christmas Day, all I have had is time. Elise took around the clock care for almost the entirety of her 15 years of life. There was very little time that wasn't filled with feeding, drinking, toileting, changing, transportation, medication, seizure management, etc. It was A LOT! I know that, but not providing for all of her needs was not an option.

On Christmas Day, all of that changed. Suddenly, the vast majority of the way my time was spent came to an end. There was no longer a need for all of the above items. I know there should be tremendous relief that all of those responsibilities are no longer a part of my life, but it WAS my life. That is how I spent almost all of my time. Now she is gone. What am I supposed to do with my time?

I am so far removed from the profession that I trained for, the hobbies that I used to do and the things that used to occupy my time before kids that I am completely lost. I am struggling most days just to figure out what to do with myself. Over the last couple of years, many of my days were spent texting back and forth with Elise's teacher during the school day, communicating with doctors and nurses, communicating with caregivers that worked for us and communicating with Kelly about whatever was going on. Many of the constraints put on my time had become so overwhelming that I was barely able to keep myself afloat. Yet, somehow I managed.

I know I will figure it out. I know it has been less than a month since Elise passed away. But, neither of those sentiments make the lost feeling any easier. I'm not going to start writing that book yet. But, I am going to go back to blogging as I work to figure myself out.

It Shouldn't Have to End Like This........for Anyone

In April of 2021 Elise almost died. There, I said it. It is not something I have really spoken about with anyone outside of a very small circle of people. This was not a first, and not likely to be a last close call occurrence, but it was different for sure. It has been a number of years since I stood on the outside wondering if this was the end of the line. Just like the other times, it was kind of a surreal experience. 

Elise was admitted to the hospital the day before. As she has experienced many times, we were not able to get a handle on her seizures and we could not get them to stop. 36 hours of trying various things ultimately resulted in her stopping breathing. At about 2:30 a.m. I was standing beside her bed and she was getting sick and having strange seizure like activity. She settled, closed her eyes and I tried for the 10th time to go back to bed. A couple minutes later some of her monitors started alarming. This also is not uncommon. There is a lot of false "alarming" when you are staying in a hospital. A couple of nurses came in, did a few things with her to try and change some positioning, but that didn't work. They called for respiratory who was in the room in about 30 seconds. She also tried a few things but that wasn't appearing to improve the situation either. 

At this point I don't think I was grasping how dire the situation was becoming. Not five minutes before I was standing next to her bed and talking with her. A moment later the decision was made that intervention was going to be necessary. They called a "Code Blue" and the room and hallway were filled with people almost immediately. A team of people arrived and immediately jumped into action trying to save her life. The hallway is filled with backup and people that are around to run for supplies when needed at a moments notice. They also send social work, a chaplain and security. The social worker and chaplain were my new babysitters and there to tend to whatever I needed. This was not the first time that I (or we) have been chatting with social work and a chaplain in the middle of the night. It does not get easier, but it is not as scary when you know what to expect. Several times they said something to me like, "You seem awful calm. Do you understand what is going on? Is there anything we can get you?" After talking with me a bit, it seemed they were able to figure out that this just wasn't my first rodeo. I understood full well what was going on and what most of the likely scenarios were that were playing out in front of me.

After they were able to determine that she was stable enough to be moved, they transferred her downstairs to the Pediatric ICU (PICU). Something occurred there that I was not prepared for. During these times of the COVID pandemic, they had established a new protocol that ALL new patients coming in to the PICU needed to be tested for COVID. While they were awaiting those results, only a small number of people were allowed in the room and no parents. All hospital staff was dressed like those that you see in the picture. This is a stock image that I pulled off the internet. But, it is indicative of what I could see in Elise's room.I wasn't really caught off guard that they would be testing for COVID, but I was more caught off guard by the fact that we had been in the hospital more than 24 hours already. No testing was needed before and nobody was wearing the "space suit" as I liked to call it. But, they were all wearing them in her room. Those were complete with their own respiratory units that ensured they were only breathing in filtered air of their own and nothing from the room they were standing in. I'll skip the rest of the hospital stay as it is less important to the overall story. Obviously, Elise was eventually discharged from the hospital and has been doing pretty well since then (knock on wood!). 

I have thought a lot about why that hospital stay was "different" in my mind. What about it has been eating at me? In the end I think that it comes down to the COVID protocol. I get why they do it and have no issue with how things were handled, don't misinterpret what I am saying. What hit me as I was sitting outside her room watching all of this transpire was how lonely this entire experience was for her. Was she awake and aware enough to know what was going on? If so, was the only thing she could see is a bunch of people in space suits zooming around the room? Was she going to die on that table without anyone from her family by her side? I was 10 feet away!

We have spent the past couple of weeks talking with various doctors about the COVID vaccine and whether it is appropriate for Elise. Like most parents, I worry about the long term effects of my kid getting the vaccine. But, I worry about the long term effects of them not getting it as well. We still have at least one more doctor to talk with, but it appears that the recommendation for her is to get the vaccine. As I wrestle with the consequences of her getting the vaccine or not, my mind instantly goes back to those images of me sitting in the PICU watching them work on her through the window while she was completely alone.

To vaccine or not to vaccine is not a political decision in my house. It is a purely medical decision that needs to be made with considerable thoughtfulness and conversation. The prognosis of medically fragile kids is so unpredictable. One thing I do know is that I do NOT want her to die on a table without her family around her if it can be avoided. Life should not have to end like that for Elise. Really, life shouldn't have to end like that for anyone.

Will She Outgrow These Seizures?

As I mentioned in my last blog post, Elise has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS). This is a severe form of epilepsy that is "refractory", or resistant to anti-epileptic medications. Over her more than 10 years of being epileptic, she has progressed into this rare form that impacts her life on a daily basis. Ultimately this is brought on by an infection she contracted on her brain during treatment for cancer. This will not go away when she gets older. She will not grow out of it. There is no magic bullet. Most importantly, there is no cure.

Seizure disorders can be so varied among people and their treatment can range from simple to extremely complex. Over the years I can't tell you the number of people that have said something like, "my sister had a seizure once when she was 8 years old. It scared my parents to death. But she outgrew them and never had them again." That is a common story and the way many seizure journey's end. But, that is not the case for Elise.

A Typical EEG

The image on the left is what a typical EEG (electroencephalogram) reading looks like for the majority of people in the world. EEG's are done by putting electrodes onto various locations of a person's scalp. I won't get into how to read it too much. But, most importantly, you can see how the brain waves are very similar to each other across each wave pattern. Doctors read EEG's to determine if there is seizure (or abnormal brain) activity, what is occurring before and when something abnormal happens, and where in the brain this abnormal activity is happening. A lot can be determined in a relatively short reading.

A Textbook LGS EEG

During Elise's last hospital stay, the neurologist told us, "Elise's EEG is a textbook example of a Lennox-Gastaut patient." That has never happened to us before. Elise's struggles rarely ever fall within the realm of what doctors see in textbooks. Unfortunately, I don't have a screen shot of Elise's last EEG. But, I did find a "textbook example" on Google. You can see it on the right. Really, need I say more? Isn't it fairly self explanatory?

This image on the right is Elise's brain 24 hours per day 365 days per year. She is in a constant state of over activity in every area of her brain. "Most" seizures are localized to a specific area of a patient's brain. Elise's seizures are in all quadrants of her brain and are crossing over quadrants constantly. In periods of rest her brain activity looks like the EEG directly above this picture.

Seizure activity of an LGS patient

During an actual seizure, which happens several times per day, her EEG reading looks a bit more like the reading on the left. She can go through several minute periods where that increased activity in the middle of the image is most predominant. Then, after a moment of recovery (usually), her brain activity will resume back to the "textbook LGS patient" reading.

When Elise's seizure journey started about 11 years ago, we were told to expose her to as much as possible and treat her as we would any typical child. When a child develops seizures, there is always the possibility that the brain will "re-wire" itself and make new pathways to deal with any injury or insufficient activity. As a child gets older, the likelihood of that rewiring taking place gets less and less. The female brain is believed to not be fully developed until age 21 (it is older for males). However, when there is significant damage done to the brain, cognitive function certainly does not continue to improve to age 21 and beyond.

After so many years of trying SO many things, I am trying to come to terms with what the future holds for her. It has been made very clear in this past year that we will likely see more regression of skills and progression of the seizure disorder. Each hospitalization is a set back and an establishment of a "new normal" in her life and ours. There has always been a cause and effect relationship to her seizure activity. But, this past year has taught us that this will not always be the case in the future. Sometimes she will just struggle because she has LGS and the seizures dictate so much of her life.

Summer time generally brings a bit of better health for Elise. We are never quite sure what to attribute that to, but we'll take it. Like most of us, she doesn't really enjoy the Kansas heat in the summer. But, she enjoys floating in the pool on hot summer days and long naps when inside. In the grand scheme of things, those are not all bad attributes to have.

A Visit from the Notification Officer?

I grew up in a military town. I like to say I was an Army brat by default. My dad retired less than a year after I was born. My siblings moved all over as part of his Army career, but I did not. I was born on Fort Riley, KS and never left the area until after I was 18. Interestingly, I live less than 15 miles from where I was born again today.

My childhood was filled with many of the normal military things. I had lots of friends over the years that moved in when their parent was stationed at Fort Riley and then moved away within a couple of years to move to their next duty station. While my dad no longer reported to work on post, I understood many of the aspects of military life. I can recall my dad telling me at some point that you never wanted to have someone in a dress uniform show up unannounced when the soldier was deployed. That was never a good thing. That is exactly what happened in my house in 1991, but it was not at all what I thought.

My brother was in the United States Marines and was deployed to Iraq during the beginning stages of the Gulf War. There was 24 hour media coverage of the war, bombing of buildings, and coverage of the killing of many people. He was in the Force Recognizance unit. Generally this meant that we didn't talk much. When he did call home it was usually to talk with one of my parents and it was also relatively short. He was back in the US at his base for a short amount of time and was talking with my mom on the phone. During that call he received some kind of notification that he had to hang up immediately and get moving. Whatever was said didn't set well with my mom. She had sent her own husband off to deployment many times. She was a veteran. But, however this went down just didn't set so well with her. She was uneasy. The non-stop media coverage of the war effort, and my dad's obsession with watching ALL of it, did not help either. It had been several weeks since we had heard from him. Then one day the doorbell rang.

I believe it was a Sunday afternoon. I looked out through the window in the doorway and there were two soldiers in dress uniform and a black car at the end of the driveway. I couldn't even begin to comprehend what was in front of me. All I could think to say was "Dad! There are soldiers in uniform at the door!" He moved quicker than I can recall seeing him move and opened the door himself. I sat down on the couch and began to cry. I heard about this stuff and saw it in movies. But, I never thought it would be something I would have to handle myself. Fortunately, I did not.

Those "soldiers" at the door were actually a couple of kids from the local ROTC program and they were out selling door to door to support their program. I did not know them, but I suspect they were two high school kids and the guy in uniform at the car at the end of the driveway was simply their ride to sell whatever they were selling. My dad didn't really like door to door sales. But I remember him standing there talking with those guys for several minutes. I think he even bought whatever they were selling. But, I do remember him saying when they were finished, "maybe you guys shouldn't wear your dress uniforms when you are going door to door during a time of war." I couldn't agree more! He knew disaster was averted for our family, but there were also no guarantees for the future.

I have thought about that day hundreds of times over the years. As the war has continued on in the middle east, I have thought about the thousands of families that received a visit from the "notification officer". Always while just going on about their lives doing what they can to support their service member from afar. Just like that an entire branch of a family tree has been altered. I have thought many times about those moms and dads and husbands and wives that have received that devastating news. I had one small glimpse at the fear of that visit, but truly cannot comprehend the way my family would have been impacted if we got a visit from someone else.

Fortunately, in my family, we have several veterans that we honor on Veteran's Day. Also, just as fortunately, we do not have anyone in my immediate family that never made it home from a deployment.

"I am an American fighting in the forces which guard my country and our way of life. I am prepared to give my life in their defense." -- Article One of the Code of Conduct for members of the armed forces of the United States.

It is one thing to say the statement above. It is entirely different to have lived it and have paid the ultimate sacrifice. My prayers are with those families, and brothers and sisters in arms, that have been impacted by the the death of a service member. Peace to you all this Memorial Day.