My Hospice Experience

As I have been looking back over this past year, I realize how much of November and December of 2021 was a blur to me. Life crawled by, yet went so fast. On December 21st of 2021, we signed Elise into the care of hospice. It was a truly numbing experience. I "knew" it was most likely that Elise would pass away before I would. But, to sit with that realization as it happens was pretty surreal. We were as "prepared" as could be I believe, but that did not make it any easier. 

First, it is probably important to note that I didn't want her to die at home. The idea of it all was terrifying to me. My biggest fear was that I didn't want her to "haunt" me in some way for years to come. I didn't want to see her image as I rounded every corner and walked into every room. I did not like any of it! As with all good marriages, we felt differently about this issue. I was honest from the beginning that my biggest issue was fear. During Elise's life, I sat with her through so many experiences that terrified me that I cannot even begin to count them. This would be no different. Home was where she, and we, belonged. 

We are fortunate to have Good Shephard Homecare and Hospice here in Manhattan. They are a great organization that provides palliative and hospice care both in homes and in their own facility. With Christmas coming 4 days later, there was a push to get everything lined up for her to ensure that we would be set over the holidays. In the end, almost none of the services were needed. She passed away peacefully, at home, in the early morning hours of Christmas Day.

My initial experience with hospice was frustration. At the time, I wrote it off as we were going through a stressful time, which was true. After thinking about it for a couple of months, I began to realize that hospice wasn't really all that different from our daily life. The one exception is that they handled everything related to the pharmacy. We had more than 10 years experience dealing with pharmacies in Elise's care. In our house, we navigated the system far better than most people. Working with the pharmacy was something that we did many times per month over those 10 years. So, their being "helpful" was really more of a hinderance to getting things done quickly. I don't believe that most people would have this same sentiment. But, I have come to realize that most people didn't lead the type of life we were leading. 

When I look back at Elise's life after cancer, it could probably be viewed as a 10+ year hospice experience. Kelly and I, and several helpers over the years, provided around the clock care for her 365 days per year. If she needed moved - we moved her. If she needed fed - we fed her. If she needed cleaned - we cleaned her. If she needed medicine - we medicated her. It was a full time job for multiple people for several years. Hospice care was no different. Deciding to keep her at home, as it turned out, really was no burden at all. It was no different than it had been all that time. We were used to tracking everything that was happening with her, giving medicine at specific times and overall managing her care. 

As I think back about the decision to put her into hospice care, I think it really was the mental shift that is most challenging for me. Like many, I viewed it as "throwing in the towel". We spent 10+ years pushing hard to help her make improvements, increase her quality of life, and searching for the next thing to help "cure" whatever was ailing her at the moment. But, signing the hospice paperwork was an admission that she would not get better. Outside of a miracle, we were out of options. 

When we left Children's Mercy, during one of her stays the last two months of her life, we had a legal document that allowed us refuse further treatment for her in the instance that she would experience something major (like heart failure for example) while she was at home before we put her in to hospice care. This was a document that we could use at our discretion. Nobody had to know that we had the document. And, to this day, I'm not positive we mentioned it to anyone. In the State of Kansas, even the parents cannot refuse life saving measures for their child without a doctor signing off on it. With this paper, we could stop the EMT's from treating her at our home and stop a local medical team from going any further. Think of it like a do not resuscitate order, but for overall medical care. That piece of paper, and hospice care, are the two heaviest pieces of paper I have ever signed in my life. No parent should experience that. 

Abby painted the image in this blog as Elise's last Christmas gift. Thanks to Elise's last helper Emma, this had become kind of a mantra for Elise the last couple of years. Honestly, she probably didn't need the reminder. She did big and scary things every day. However, I have continued to appreciate it and use that mantra still today. 

Would I recommend hospice care for others? Absolutely! While I cannot say that it made everything "easier" for us, it was still worth it. The night Elise died, there were no lights and sirens. No gawking neighbors. No emergency situation. Instead, it was a call to the nurse line, a home visit from the nurse, and ultimately a visit from the funeral home to pick her up. No bright flashing lights and loud radio chatter. Instead, it was an unmarked minivan and two well dressed gentlemen as professional as can be. Quiet. Peaceful. Respectful. Not scary at all. 

In one of our last hospital stays, the palliative care team told us we may eventually view the hospice opportunity as a gift. Most people don't get to plan how they leave this earth. I believe that Elise did everything she could to guide us through the process and I believe that we honored all that she wanted and needed until the very end. It truly was a gift, not just from hospice, but I believe from Elise and God as well. Not scary at all. And I am thankful for that.

Amazing Creatures

 

She always loved a car ride.

Kelly and I were parents to a dog well before we had kids. We raised our first dog, Bela, (named after the composer Bela Bartok - not some princess named Bella) from the time she was 8 weeks old. She was part of our lives for 7 years before Elise came along. She was not happy to be demoted in the family when a baby came along. She really wasn't happy to be demoted once again when Abby came along either.

Bela was frequently agitated by young kids pulling on her, trying to lay on her, and all the things that kids generally liked to do. But, when Elise was diagnosed with cancer, Bela instantly became a different dog. She would lay in Elise's bed the entire time Elise was in the hospital. She was gentler with Elise and it always appeared she just knew. I was always amazed by that. Bela even had seizures. We had no idea what we learned about our dog with seizures would set the foundation for the next 15+ years of our life with both a dog and child with seizures. Bela gave us 14+ great years and was with us during some serious life changing times. She was a great dog.

Life was drastically different between when we got Bela pre-kids and when she passed away more than 14 years later. Kelly and I needed a break. We had way more responsibilities than we wanted and adding a dog to the mix was not something we wanted. We told Abby we were going to take a year off and we could revisit getting another dog in a year. Each year she reminded us of that promise as we just didn't want to make the move to getting our next dog.

Sitting by the fire

But, with time now on our hands, we adopted Opal during the pandemic. She was about three years old (she was a stray so nobody is sure) and was a great fit for us right away. Elise's life consisted of a lot of equipment and our van was a little different than what most people have. All things that can be a bit scary for a dog. But, Opal was oblivious. She did not seem to care at all about any of the unusual aspects of our life. She just came to make herself at home and settled in easily.

Over the next couple of years, I noticed that Opal had many of the same traits of our last dog Bela. She didn't pay Elise a lot of attention. But, she was quick to lay in Elise's chair or her bed whenever Elise would go to the hospital. She didn't do these things when Elise went to school, but she would quickly do them if something was wrong. She could just sense it. That always amazed me.

The night that Elise passed away, we were all in her bedroom. Abby and Kelly were laying on mattresses on the floor and I was sitting in the chair next to Elise's bed. I was petting the dog with one hand and holding Elise's hand with the other. Lots of emotions. Like always, Opal would just sit there. She knew.

I finally decided to lay down with the others and try to get some sleep. After about 30 minutes, Opal got up and was pacing all over the room. I called her to come back to lay next to me and she would not lay down. I couldn't get her to just relax so I got back up and moved back to the chair. In that moment I knew it was all over. Elise was gone.

I have thought about that night many times over the past year. More than anything, I just wish I understood how dogs know things like this? How can they sense it? More than anything, I am just amazed by them. I appreciate their loving nature and the way they connect to us in ways that we cannot understand. They are truly amazing creatures.

Last Day of School

October, November and December are full of some of the most challenging times of my life as a father and as a human being. Cancer diagnosis and SO MANY hospitalizations happened over those months during a 12 year period. And obviously, this past December lead to Elise passing away which presented an entirely different set of challenges. My Facebook memories are full of challenging posts from this time of year.

On November 4, 2021 I picked Elise up from school for the last time. That has been weighing heavily on my mind in the past few weeks. I talked A LOT with Elise's teacher by text message throughout the school year. Dozens of times over the years I dropped everything to pick her up from school and deal with whatever health issue was happening at the time. November 4th was really no different than the many other times. As happened many times in these situations, her health struggles spiraled out of control and she landed herself in the hospital. Sadly, she was not able to bounce back this time.

I don't really know why there is a significance to me in Elise's last day of school. I suppose because it was a day like any other. It was not unusual for me to have to pick her up. It was not unusual to spend the night in the local ER only to drive to Kansas City to the hospital in the early morning hours. This was our "normal". 

As I look back through the chain of text messages between myself and Elise's teacher, I read a lot of challenging times. None of it was easy, but it was the life I led. I suppose, unknowingly, November 4th was the day that Elise's GI system began to fail and some of the hardest decisions I have ever had to make began to move into motion.

I am fortunate to say that Elise had many great teachers, paras and helpers over the years. While November 4th will be a challenging day, I am appreciative of the impact that those people had on her life and mine.

Why Can't We Talk About Death?

It has been nine and a half months since Elise passed away. Leading up to her death, and in the nine months since she passed away, I have really struggled to comprehend why we are so terrible about talking about death in our society. Especially when so many other societies and cultures embrace death so openly.

As I have reflected on this, I think we as a society focus too much on the how and why somebody has died, rather than the life they lived. As a society, we want the "gossip" and "juicy details", but we are so quick to run away from things that make us uncomfortable. I have friends that have lost loved ones in some truly heinous crimes, terrible accidents, suicide and through debilitating illness. For all of them (and myself) the result is the same. Their loved one is gone! There is deep sadness that comes with the death of a loved one no matter the circumstances. 

The circumstances surrounding the death of Elise are a part of the grief process for me, but that doesn't mean I can't or don't want to talk about it. She is gone and no amount of avoidance is going to bring her back or bring about great healing for me. It doesn't work that way! Rather than some vague blog post, I'll go through some of how this happened in our house.

Over numerous years, Elise experienced several episodes of her gastrointestinal (GI) system failing on her. Various medical interventions over the years worked to get her back on track. Sometimes this was a slow process and sometimes it happened pretty quickly. During one of these times of failure, in November of 2021, the medical team was not able to find any real cause. The struggle for a cause had gone on for more than a week and the doctor on service that week mentioned casually, "this is common in kids with brain dysfunction". It was such a passing comment that I was caught off guard. As we began to discuss this, the doctor was shocked that this was never something discussed with us previously.

We were fortunate to have started a relationship with the palliative care team the year before during another time of tremendous struggle for Elise. The doctor offered to have that team come by and discuss this more in depth which I certainly welcomed. When the palliative care team showed up later that day, they had this book to share with me. Those that know me well know that I am not a huge reader. Seeing that book just reminded me of homework and I had very little interest! However, I skimmed it and told Kelly it looked like it had great information. She is the reader in our relationship. She read portions, made lots of notes and felt it was full of some potentially helpful information. Sometime that following week, I felt that I needed to take a more serious look at the book and see what it said. As it turned out, I read the whole thing in about three days. Trust me, that is a record for me! So much of that book could have been a blueprint for our life with Elise. We wished we would have had it years earlier. It may not have changed the outcome, but we would have felt more informed as we struggled along with so many of the "common" aspects of our child with "severe neurological impairment".

Elise went into the hospital because she could not keep anything down and was vomiting constantly. As often happened, the vomiting lead to higher seizure activity and the hunt was on for a cause. She went through periods of complete "gut rest", which is taking in no food or fluids. In the last couple months of her life, she would go in to the hospital with her GI system not working and things would immediately improve. After a couple of days in the hospital, we would be sent home only for failure to start within hours of being home. It was a challenging time for sure. In one of those short stints at home, in the midst of GI failure, it occurred to us that maybe this was her way of communicating with us. She could not say "I don't want to do this any more." But, she could show vast improvement in the hospital only to be sent home to go right back to square one. We changed everything we could in how and what she was being fed and nothing was working.

The last time she was released from the hospital, we knew that it was completely up to her what would happen. She would either thrive on this new plan, or we were out of options and had to call in hospice. Nobody wants that to be their two options. In the end, her GI system failed and her body began to shut down. Her time on hospice was pretty short and the end came very peacefully. For that I am thankful.

Losing a child is "out of order" in the circle of life. It is hard to comprehend. There is an odd peace and also so much internal struggle. It is hard to explain. When talking with someone that has recently lost a love one, don't be afraid to ask them about it. You should be able to tell in the first few seconds if they want to talk about it or not. Sit in your own discomfort and deal with it. You will get to leave that conversation and your discomfort will be over soon. The person who lost the love one will be sitting with that loss of a loved one for the rest of their lives.

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 

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.

Our Journey with CBD

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. As I always say, "it is what it is."

Five or six years ago Elise was having a really rough spell with seizures. Honestly, there have been so many rough spells I couldn't really tell you how long ago it was. But I do know that I called my brother one afternoon and said, "What are you doing this weekend? You want to go with me to Colorado?" Prior to the CBD craze, there was a company in Colorado that was one of the first to make CBD oil started by the Stanley brothers. They were approached by a desperate mom who thought that marijuana could have a positive impact on her daughter's quality of life. The little girl's name was Charlotte Figi and she and her family are thought to be the catalyst that started the movement for CBD treatment of seizures. Their family experienced good success with the CBD oil made by the Stanley brothers which they eventually named "Charlotte's Web". You can still buy this today. Sadly, Charlotte died in April of 2020 from what was suspected to be COVID-19.

When I made that call to my brother 5-6 years ago he was instantly skeptical. In his line of work there were A LOT of people being arrested in Kansas for bringing marijuana back to Kansas. But I didn't want marijuana, I wanted Charlotte's Web! At that time, and still a great deal today, there is quite a bit of gray area in the law about CBD. At that time, you could be arrested for bringing it across state lines, and CBD was not available in many stores like it is now. In the end we decided it was too risky for our family. I was not willing to risk being arrested and them taking Elise away from our family. You can look it up. There are a lot of instances of that sort of thing in the last 10 years. I am thankful that much of this has changed.

Fast forward to about three years ago and the FDA approved a CBD oil named "Epidiolex". With that FDA approval came regulation of the quality of this product and also insurance assistance! I was on the phone within days of it becoming legal trying to get Elise an appointment. When we met with our neurologist he told us that getting Epidiolex was VERY difficult and getting approved for it was nearly impossible. The only way we were going to get approved was if Elise was deemed to have Lennox-Gastaut syndrome. That was not something we had ever heard of before. "There is no consensus in the medical literature on the exact definition of Lennox-Gastaut syndrome. Generally, three findings are necessary for the diagnosis: multiple generalized seizure types; a slow spike-and-wave pattern (less than 2.5 Hz) on EEG; and cognitive dysfunction." (source raredisease.org)

We knew that Elise had multiple generalized seizure types. She was experiencing those every day. We also knew she had cognitive dysfunction. That was pretty obvious to all that encountered her. A simple EEG scan showed without a doubt that she had a slow spike-and-wave pattern. And like that, we were approved for the FDA approved drug Epidiolex! All of my prayers had been answered and a "cure" was just around the corner. Well, if you have followed our family at all over the last many years you know that was not the case.

Just like with all new anti-epileptic drugs, the CBD was great right away! In only a matter of days we started to see improvement in her seizures. There was some tweaking of the amount we gave her and some adjustments to other medications and she was doing pretty well. The seizures were not gone, but they were far improved. It was more hope than I could recall in the few years prior. Then, everybody's friend puberty came into our lives. Let's just say that puberty and epilepsy don't play nicely with each other. From what I understand of girls, this change in hormones is a doozy for the average female teenager. For someone with epilepsy it is horrible. Maybe I'll write more about that in the future.

I have received more questions in the past month about some of the conversations going on in the state house of Kansas where they have been debating medical marijuana and its approval. Everyone wants to know my opinion. As I have been telling all that have asked me, I really don't know what is going on. Once Elise was able to get on the FDA approved drug, I knew I personally didn't have to fight that fight any longer. However, I do know that it is a fight that deserves to be had. But, I don't have the capacity to do it right now. I'll leave it to those that are most affected. 

Like all anti-epileptic drugs, Epidiolex has been found to be successful at eliminating seizures in about 33% of patients, found to reduce seizures in 33% of patience and have little to no impact on seizures in the remaining 33% of patients. We are in the "found to reduce seizures" group. It has not been a miracle drug, it certainly did not bring a cure with it, but it has brought on some improvement. There are currently more "good" seizure days than there are "bad" seizure days. But, there are rarely ever seizure free days.

In the end, CBD for Elise is one more tool to try and treat a debilitating condition. CBD has little known side effects which makes its use very attractive to many. The one thing I like about this FDA approved version is that it is regulated. All the other CBD products that we can find in the general public are not regulated. It is the wild west in CBD land. Manufactures can claim whatever they would like to claim and do not have to provide evidence. The products that you find could have trace amounts or no true CBD at all. To me that leads to way too much false hope and disappointment. I don't know if CBD is right for everyone, but I do know what it has done for my daughter. I'm always glad to talk about it to anyone that asks.

It's Always the Little Things

 

My mom passed away a little more than 10 years ago. Time flies for sure. I think about her a lot. There aren't many days where something doesn't trigger a memory or a thought about a time from my childhood. I guess that is a blessing of getting older.

During most of my childhood my mom worked for the Kansas Social and Rehabilitation Services (SRS) now known in our state as the Department of Children and Families. She was an 8-5 worker. Often she was leaving the house a little before me in the morning and she got home after I did at the end of the school day. If she had to take me to an afternoon appointment, she might take me back to her office while she worked the final hour or 2 of her day after the appointment. She would generally set me up in an empty cubicle to work on homework, draw/color or keep myself occupied in some way. One of those days she set me up in the break room where I could spend the last hour or so of the day. 

While sitting in that room, the vending machines caught my eye. We had junk food around our house, but neither of my parents were soda/pop drinkers. We just didn't have it around. I had seen the commercials for all of the usual brand names, but there was one drink in there that I was not familiar with. Always curious, I asked if I could try a bottle of Squirt. To my surprise, I loved it! Who knew that a "grapefruit soda" would actually be great!

When I moved up to junior high school, the school was located only a little over a block away from my mom's office. On days when I didn't have practice (which was rare), I would generally spend the last hour of the day at her office. It was not a daily occurrence, but I got to enjoy Squirt more and more over the years. It has become increasingly hard to find over the years, and I quit drinking soda about seven years ago myself. But, every now and then I have something.

Yesterday I stopped in the convenience store on my way to pick up pizza for dinner. Thinking about my mom throughout the day, I just had a hankering for a Squirt! They only had two left, but I was glad there was one in the cooler. I thought about my mom as I drank it. I thought about her making space for me in the midst of her busy work days. I thought about her parading me around her office each time I came in so she could "introduce" me for the 100th time to her coworkers individually. Each time telling them that I was her "baby". Even as a 20+ year old college kid that was 6+ inches taller than she was. She was always proud.

It is a random childhood memory I know. There is nothing of significance attached to a single event involving Squirt soda. But, each time I see it I think of my mom. Each time I drink it I think of her office and those days of my childhood. Mother's Day is not the same when your mom is no longer with you. There are lots of people that come through to fill in the gaps, but there will always be a space that my momma held. 

Happy Mother's Day to my mom in heaven, and to my many friends that are mothers. Remember it is the little things that your kids will remember 30 years from now.

The Daily Med Routine

The daily med routine.

It takes a ton of medicine to get Elise through her daily life. Sixteen meds per day actually (a couple aren't pictured). And, several of those are twice per day!

I can remember a time that we brought Elise home on one of our breaks during cancer treatment and she was taking 14 meds. Life was completely out of control and we were just trying to keep the wheels from falling off. We were glad to take her home, no matter how many meds we had to give her. That was a crazy time. Fast forward about 10 years and I told one of Elise's helpers, "It's not like it used to be. There was a time she was taking 14 medicines per day!" 

It is amazing how life does something like this to you and you never even realize it. There was a time when she was down to 2-3 medicines per day right after cancer treatment, but that didn't last too long. Gradually we have added more medicine to treat various aspects of her life. Gradually...... until we were back up to 14 (or more). Honestly, we have been in the range of 14 meds for so long I didn't even realize it. As we slowly got acclimated, that out of control feeling went away (or at least diminished) and we began to normalize our life full of so many medications.

It is for this reason that surgical procedures and changes to her daily routine are so difficult for her and scary for us. It takes consistency, a pretty rigid schedule, some luck, and lots of prayers to keep her as healthy as she is. Even a single dose of Tylenol or Ibuprofen messes with that balance. We have to be strategic about how they are used. When Elise recently had hip surgery we ended up with 3 (I think) additional medicines to deal with pain and muscle spasms. The balance was acceptable for a week, but eventually spiraled out of control and landed her in the hospital for more than a month. 

Needless to say, we aren't too eager to jump into conversations about additional surgeries. Several specialists would like to get her on the surgical books to deal with this issue or that issue. But, as we have learned over the years, what the doctors want, and what Elise's system will tolerate, are not often the same thing. She does everything in her own way and in her own time. 

Over the years we've had a love hate relationship with the pharmacy. The Children's Mercy Hospital pharmacy has always been great to us. But, we can't travel 2 hours (one way) to go to the pharmacy. I generally go to the pharmacy 4-6 times per month, as long as everything goes right. When we lived in Kansas City, Kelly developed a great relationship with Jason, our pharmacist at Walgreen's near our house. She talked with him regularly, he always gave sound advice, and he went out of his way to ensure that he could get whatever Elise needed when she needed it. Most people miss friends, family, their old house, etc. whenever they move to a new city. We missed our pharmacy! Don't worry, friends and family were a close second. :-)

It took a number of years for us to finally develop a relationship with the pharmacy here in Manhattan. We have been loyal and have stuck with Walgreen's all these years. Sometimes they make me want to tear my hair out, what little I have left, but overall they have been good to us. Using a national pharmacy has bailed us out more than once over the years when we ran into medicine trouble in another city, and even another state, multiple times. It helps that our trusted pharmacist also lives in our neighborhood too.

Taking this many medications is not a badge of honor. It is certainly not something we enjoy, or that Elise enjoys either I am sure. But, they are a necessity in her life. I could probably go on railing on health insurance, drug costs, over medication, etc., but you can read enough of that elsewhere. The system is confusing, time consuming, exhausting, but necessary in our case. Most days I choose to be thankful for the medications that Elise gets and all that they do to help her be the best version of who she is. Modern medicine is truly amazing.