Compassion only at the holidays?

One thing I love about this time of year are the number of stories I see and read about amazing acts of compassion in our world. Does it truly happen more at this time of year, or do we just more easily find it around the holidays?

In our family, we have been blessed with tremendous acts of kindness from people we have known well and some people that we never knew at all. I cannot recall the number of amazing things that people have done for my family that have been both large and small. When I really think about it, it is pretty mind boggling. What leads a person to be so giving toward others? That is the million dollar question for fundraisers and nonprofits every day. But, the average citizen like myself gives very little thought to the why.

“Who can save a child from a burning house without taking the risk of being hurt by the flames? Who can listen to a story of loneliness and despair without taking the risk of experiencing similar pains in his own heart and even losing his precious peace of mind? In short: “Who can take away suffering without entering it?”- Henri J.M. Nouwen, The Wounded Healer: Ministry in Contemporary Society

For a number of years I have been collecting quotes that I keep in my phone. One quote that I stumbled upon many years ago is from Henri Nouwen above. Honestly, the whole thing is too long for my memory, so I just have "Who can take away suffering without entering it?" For some reason that quote really stuck with me after reading it. I can see in myself the ability to do this, which was not there before. Why was it not there before anyway? Thinking back, I believe it was just a lack of understanding or experience.

I come from a family full of health problems. Fortunately, I had zero experience with cancer in anyone that I knew in my family prior to Elise's diagnosis. It was a world that I could not comprehend. When I would see someone in public with their head bald from chemo and a mask on their face (before it was cool), I would avoid them at all costs. I didn't want this sick person getting ME sick! I had no idea that they wore a mask for their own protection. I also had no idea that people did treatment for cancer other than chemo. There are actually people WITH hair getting other treatments? Who knew? But, entering in to that suffering in my own family better equipped me to sit with someone else as they are suffering in their own way.

Entering in to the suffering of others requires you to be willing to be uncomfortable as well. It is easy to say, "I just can't see them in this condition" or "it makes me too sad to do this", but in the end is it really easier? Those times where I have taken the easy way out I have always come to regret later. Maybe you can't truly sit in the middle of someone's suffering in your mind. But, can you truly hope to help them if you aren't willing to enter their world? 

I recall a time when Elise was tremendously sick in the midst of chemotherapy and she ended up in the ICU on a ventilator. We had been in this room for several days and things weren't looking to improve anytime soon. Several kids we knew from the cancer floor had made their way to the ICU while we were there as well. A couple of them had managed to improve to the point of going back to the regular patient floor. But sadly, a few of them did not make it and passed away while in the ICU. Just as it is now, there aren't a lot of dad's hanging around the hospital rooms and sitting with their kids. But, I had come to know one other father who had lost his job after his daughter's first battle with cancer. Now, about a year later he was still unemployed and they were back in the hospital because her cancer was back. Things for that family were very difficult. While out having dinner with their extended family they got a call to return to the hospital immediately because something was not going well for their daughter. A short time later, surrounded by her family, she passed away. Cancer treatment is NOT easy at any point. It is particularly difficult when families going through the same thing are losing a loved one around you.

Once that family had finished all they had to do, they stopped by our ICU room to tell us goodbye and wish us well. These people were at the cusp of the worst suffering I could ever imagine, and they spent 5 minutes encouraging us. Who does that? I'm pretty sure I would want to get out of there and never speak of the place again. Some people choose that route. But, some people also choose the route of encouraging others. Now, more than 10 years later, I don't remember their names but I remember that act of kindness. Typing it out I can still feel my discomfort with the whole situation. More than anything I wanted to show them empathy and dear God not to say anything stupid! Fortunately, Kelly had misunderstood something that the mother said and let out a REALLY loud laugh. Nothing cuts the tension like inappropriate laughter in the ICU!

Most people won't have a story about entering the suffering of others this way. For that I am thankful. But, people are suffering in so many ways from so many things. We can all relate if we are just willing to enter into it with them and be uncomfortable ourselves. Maybe it isn't actually talking with someone about their suffering. Maybe it is taking a hold of one small burden and doing it for them. It doesn't have to be a grand gesture. It can be anything! We can all say, "if someone would just do 'this' for me, I would be so relieved." Whatever that is for you, others probably feel the same way. Mow their lawn, buy them coffee, watch their kids, do their grocery shopping, or just sit on their patio and chat with them when it is convenient for both of you. 

It is not rocket science, but it can be uncomfortable. Lean in to that discomfort and the next time it won't be quite so bad. Let's all make it our mission to show more compassion to others. It isn't too late for 2020, and you don't have to wait for the holidays to come around next year to get started either.

Comfort In - Dump Out

I have enjoyed being back home with my family since Elise was discharged from the hospital. While there was very little time in the hospital that felt dire, it was exhausting nonetheless. Nobody likes to move away from their routine, especially if it happens suddenly and unexpectedly.

Many times during her stay, and a few times since being home, I have been reminded of an article that I have shared with many people over the years. Lots of people have reached out to me to ask how I would recommend they talk with someone going through something difficult, what they should do, shouldn't do, etc. While I am far from an expert in this area, I often times share with them an article that my sister shared with me more than seven years ago. You can read it here. I highly encourage everyone to read it, process it, think about various situations in your own life, and then put it in to practice. The article makes it seem easy, but trust me it is not.

It is human nature to want to help. We all want to not be uncomfortable in any situation. It will all be okay if we can just do or say the right thing right? Not usually. Isn't that more about making us more comfortable rather than being helpful to the other person? I have been confronted with this very issue myself in the past week. I have several friends that have kids going through medical procedures, surgeries and therapies. I can identify with all of them in some way, but not totally with any of them. It would be very easy for me to say, "I know what you are going through. This is what I did." But, that would not be helpful. Even if I am close to their inner circle, that is dangerous territory. Instead, find another way to be helpful.

When I first took a job working for K-State, I moved to Manhattan and lived in my sister's basement while my family stayed in KC for more than a year. I was fortunate that my sister and brother in law were willing to take me in. During that time my brother in law was in the middle of his own battle with lung cancer. I was less than two years removed from going through Elise's own cancer battle. For the most part, I knew what they were going through. I do think there was some comfort in it being me in their house because I wasn't too likely to say something stupid even if unintentionally. There didn't have to be pretending for my own protection. Cancer is ugly and you should be able to put your guard down in your own household. I was a caregiver for my daughter just like my sister was the caregiver for her husband. While there are a lot of similarities in our journey's they are certainly not the same. I really tried to be mindful of "Comfort in, dump out" as the article stated. This was a good exercise for me in being able to see past my own struggles.

When it comes to anything medical I can easily slip myself into the "comfort in, dump out" mentally. It comes almost naturally to me now. Sometimes I have to take a step back and ensure that I have truly thought about it, but I generally know my place in the circle. But, outside of medical stuff, that is not always the case for me. The article mentions that you can use this for medical, legal, financial, romantic, etc. I am very comfortable using this when talking about medical issues with friends, family and just people that I come across. But, I don't have as much experience in all the other areas. Therefore, I'm pretty quick to instead say the wrong thing and be judgemental. Most often that is not my intent, but it is most natural. When someone talks with me about their financial struggles or marital struggles, I want to be caring and compassionate. That compassion shouldn't always come out as "well have you tried this?" I know that is not helpful. But, I am human too.

During this holiday season and beyond, I hope that you will consider this "comfort in, dump out" strategy. Lean heavy on the comfort portion and find someone in the outer circle that you can "dump" with. I bet you will find that it makes everyone feel better to use this strategy and you won't feel near as awkward the next time you are put into an uncomfortable position without knowing the right thing to say. Give it a try!

To Celebrate or Not?

I took Elise to the ER in Manhattan on November 4th because she was clustering seizures and we could not get them stopped. She was on a heavy regimen of pain killers, muscle relaxers, etc. due to her hip surgery on October 19th. She has gone to the ER several times for seizures and we have almost always been able to get a "loading dose" of medication and then take her home. Unfortunately, that didn't work this time. I thought I would take her home in a couple of hours. Instead, we were finally discharged from Children's Mercy Hospital in Kansas City 34 days later. It has been a long haul with lots of ups and downs and twists and turns. The rational side of me says it is time to celebrate! The realistic side of me knows that there is a lot of work ahead!

But, does the work ahead outweigh the celebration? Only sometimes for me. This hospital stay was more challenging for me because she had such unusual reactions to some "normal" ailments for her. She is challenging to figure out at all times. But, I believe we have our finger on the pulse of what works for her most times. This hospital stay was met with a lot more doctors standing by her bed asking us how we think they should proceed. There was no right answer, but there were lots of options. As parents, don't we usually just want someone to tell us how to make it better and then just go make it happen? Unfortunately it doesn't always work that way.

When we came to the hospital Elise was only a couple of weeks post hip surgery. She was barely starting to move around again. More than a month of laying in a bed has not helped that process along. However, we were able to have in patient physical therapy for her that took place more often than what we were going to get outpatient. That is certainly a positive. I pushed her out of the hospital in better physical condition for her hip than when I brought her in. I am certainly happy for that and for her.

Now the real work begins. We have to work on her body being able to absorb food at a bit faster rate so that meals don't take so long. We still have lots of work to do in understanding why UTI's are such a significant part of her life. And the seizures. Always.........the seizures. Everything revolves around how her brain works. When things aren't working correctly there are always other challenges that exist. We are closer to her "baseline" (we don't say "normal" around our house), but we aren't quite there yet. Hopefully a few days in our own beds and our own surroundings will do us all some good. I know I am looking forward to it! So, I will celebrate that we are home for sure. We will tackle the things we need to work on head on as we do each time. It will be challenging. But, it will be good to be back in our own surroundings. Thank you all for your continued support.

Seizures - The Great Unknown

 

One of the most helpless feelings in life is being next to someone having a seizure and knowing that you can do little or nothing to help them in this situation. Their brain has just starting "misfiring" and all you can do is watch them and try to provide for their safety. If the seizure doesn't stop on its own then medical intervention is necessary.

In 2015, 1.2% of the total US population had active epilepsy. This is about 3.4 million people with epilepsy nationwide. According to the latest estimates, about 0.6% of children aged 0-17 years have active epilepsy. Think of a school with 1,000 students—this means about 6 of them could have epilepsy. (Source CDC) Elise has a form called Intractable epilepsy. This is when seizures can't be controlled by medicines. About 1 in 3 of people with epilepsy have intractable seizures. In the US that means about 1.15 million people have this form of epilepsy.

For someone like Elise, seizures are a daily part of her existence. On a good day she might have 25 seizures (give or take a few on any given day). On a particularly tough day, she can easily have more than 100 seizures during the day. Her seizures are generally short right now lasting about 3-5 seconds. She has a few unusual seizures that might last 15-30 seconds but that is not the norm. Elise's seizure struggles really come in the form of her "clustering" her seizures together. For example, she had a stretch last night where she had 30 seizures clustered together in a 45 minute period. So, about every minute and a half she was having another seizure. It is pretty hard to function when your brain is constantly resetting itself every minute and a half.

Most of the time we can manage (whatever that means) Elise's seizures at home. We have a set regimen of medicine to give if we feel that the seizures are starting to spiral out of control. The struggle usually comes in figuring out when she is starting to spiral out of control. It is not unusual for her to have a tough 10 minute or 20 minute stretch on any given day. With that, we don't generally give a lot of thought to something being wrong until we are in the 30 minute or more time frame. Or, when she is having a cluster of 20+ minutes for multiple hours in a row. It is a balancing act and not clear cut at all.

About a year and a half ago we began to venture into uncharted territory........puberty. Puberty and hormones are challenging enough in a neurotypical child. The challenge is off the charts for someone with brain issues. The constant disruption of signals from the brain to the varying vital organs is fascinating if you are in to the type of thing. As the parent however, I tend to find it more disheartening than fascinating. Just as we have over the last 11 years of learning to navigate epilepsy, we'll get through it. But, it will not be without a ton of questions, changes and challenges for everyone. Just like cancer, seizures suck! We are fortunate that Elise is really tough and has the sweetest of dispositions. Trying to find her relief and comfort among the challenges is going to be a life long endeavor.

Nailed It!

 

At our house, we are big fans of the Netflix series "Nailed It!". If you haven't seen it, the basic premise is contestants on the show try to bake a seriously complicated product that has been done by a professional. They always have this beautiful, elaborate product as a model of what they are trying to replicate. Needless to say, many of these people have about as much experience as I do and the finished products are at best hilarious and at worst absolutely terrible. I'm not judging. I would do the same!

Right now, that is about how I am feeling with the whole Christmas decorating thing as well. Many of our friends have been posting their elaborate holiday decorations that they started putting up in October to try and will their way to "feel" more festive in 2020. With the way the year has gone, I get it. I really do.

So, to prove to myself that I too could feel festive, I made a trip to the dollar store to try and dress Elise's hospital room up a bit. As I stepped back to look at it, all I could think was "Nailed It!". It is not festive. It is pathetic. Now I understand that I spent only a couple of bucks to try and dress the place up. Nonetheless, I failed miserably. When I was finished I told Kelly that I would go back to the store that night and bring some more the next day and try to improve it. As I was about to go to the store I realized that I really don't care about it! I was trying to do something that made it "feel" better, but it didn't work.

Don't get me wrong, this isn't a sympathy posting. I didn't feel all that festive before we came to the hospital, otherwise I might have put up my own decorations in October! Instead, this was about doing what I thought I "should" do. But, who really tells me that I "should" do this? Isn't it really just my own perception? I also bought this door cover of a snowman and a Christmas tree. It makes me smile when I see it. I suppose that is the purpose. But, the rest of it is really more like Charlie Brown's Christmas tree.

As I have walked around the area close to the hospital the last few nights I have noticed the stark contrast from years past and this year. Crown Center and Union Station are generally hubs of thousands of shoppers, decoration lookers, and families out for family time together. The ice skating terrace is generally packed with people.

As you can see from the photo, that was not the case. Actually, this was the most people I saw in the area in the last two nights. Shops were mostly empty and had tons of signage about shopping online. Restaurants were empty but they had parking slots for delivery drivers that seemed to be hopping with activity. It is different for sure. But, is different bad?

I have always struggled with our society's need to "keep up with the Jones'". Every year needs to be bigger, better, more, etc. But, does it really? Do we really "need" that? If so, then where is everyone if it is a necessity? Haven't we just become content in our society of excess?

Whether you are decorating at 1600 Pennsylvania Ave in Washington, D.C. or Children's Mercy 5th floor, the holidays will still be here. Whether we use a decorator or dollar tree decorations won't really matter will it? For me, the Christmas season has always been a "feeling". That feeling has been much difference since Elise became a cancer kid and we experienced Christmas in the hospital. It has never really felt the same since then. I have never been able to put my finger on exactly what changed. But, when I really think about, I think the answer might be everything. EVERYTHING changed that first year in the hospital. Suddenly, so many things didn't matter any more.

It took me years to put lights back on my house, which I have only managed to accomplish the last couple of years. It looks nice, but I know that I don't "need" them to "feel" like it is the holidays. I have all that I need all around me. It is just a matter of looking at it differently. Some days are easier than others to see that. So, whether you have a magazine spread right there in your living room, or you have "Nailed It" like I have, I see you. Hug your family. Enjoy a smaller gathering this year and focus on what is most important to you.

Enjoy a couple of more festive photos that might help you to feel a little more holiday spirit.