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 

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.