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.

Blessed to be a blessing?

 I think in every lesson there’s a blessing, and there’s so many blessings from all the lessons I’ve had to go through in life. – Alonzo Mourning

I have been giving considerable thought to something that many people have said to me over the years. People frequently say things such as, "Elise is blessed to have you as her parents." or "I/we have learned so much from watching your journey over the years." Honestly, that sentiment sometimes makes me bitter. In those bitter days, my first thoughts are that I didn't sign up to be an example for everyone else. To think that Elise has to go through all that she does in life so that others can have an example is not something I like to consider. I get that this is not the intent, but that doesn't stop my mind from going there.

When I woke up this morning, the first thought on my mind was the old adage "You are blessed to be a blessing". Yeah, I don't feel so blessed today! So, rather than being grouchy about it, I have been trying to dig a little into that sentiment this morning. I have sat in on many Sunday morning sermons about how we are blessed by God to bless others. Some days that resonates well with me and some days it does not. I suppose that is just like any lesson that we have to learn in life.

Over the years I have learned to appreciate those blessings more often. As many might remember, Elise spent several years with relatively little facial expression and was always hard to read. But, a medicine change a while back brought back her million dollar smile that we all cherish every day. I am reminded by the blessing that is her life every time she flashes that smile in my direction. And, unlike most of us, she smiles through almost everything that is going on in life. She is a constant beacon of hope and perseverance.

As I look back at how much my own life has changed over the past 10+ years, I can see what a blessing Elise's journey has been for so many aspects of my life. But, it begs to question, wasn't there a better way to learn this lesson? We'll explore that in a future blog topic I suppose. I never considered that I would one day have a child with cancer or an uncontrollable seizure disorder, but here I am. I don't generally wake up thinking about being a blessing to others. Most days I wake up just hoping to put one foot in front of the other and end the day in a little better place than where I began.

One thing that occurred to me this morning is that we all like to be a blessing to others when we are purposefully providing them something that we believe will be helpful. Maybe this is a meal, babysitting service, taking a friend on an outing, or just sitting with them and listening to what is going on in their life. Doing those things generally make all of us feel pretty good about ourselves. But, are we doing this to think about blessing them or to make ourselves feel better for "doing something"? I can certainly say for myself that it is too often about feeling that I am "doing something" for the other person. It is about me and not them. I certainly don't think that is what those Sunday morning sermons were trying to drive home.

So, as I think about my bitterness mentioned above, I guess it is really about not feeling like I have gotten something out of being a blessing to others. This is obvious area that I need to work on. It is an interesting conundrum that I find myself in. I am quick to point out that someone should re-frame how they are thinking about something and try to see the benefit in the circumstance. But, I am slow to do this personally. I can see the multitudes of people that our family has come in contact with over the years due to Elise's journey. So many of those people have blessed my life (and our lives) in so many ways. As I have processed through this all this morning, I have come to the conclusion that I AM blessed to be a blessing to others. And I am so thankful to be blessed by so many as well.

Creature Comforts

One of the most challenging aspects of not being home is trying to make your surroundings feel more "home like". That is never an easy proposition in a hospital! After the first month of Elise's cancer treatment we were fortunate to have someone give us some tips to make our stay a little bit easier. Now that we are so far removed from treatment, and have been fortunate to not have to spend large amounts of time in the hospital, we have strayed quite a bit from those tips. As I was laying in the really uncomfortable parent bed the other day I found myself wondering what I could be doing better. Then I remembered those great tips!

The first of those tips was to get an "eggshell mattress pad". Back in the old days you could ask a nurse for them and they would bring you one. I'm not sure if it was because we were a cancer family and you were guaranteed of month long stays, or if times have changed due to COVID, but they don't offer these up any more.

But, a quick Google search found that they had them at the local Wal-Mart for $10! What a world of difference it made not laying on the hard old "mattress" that is provided. The mattress also serves as the seat of the couch and has been around since we were first here 11 years ago. They are certainly well loved. Anything to provide some extra padding is great!

The second tip was to bring your own pillow! Especially during COVID times. The hospital used to provide reusable pillows that were encased in some kind of plastic like material that could be wiped off in case of "bodily fluid contact". In a hospital, and our life in general, that is likely to happen.

But, during COVID times the hospital has these new extra flimsy pillows that are worse than anything you can find at the local dollar store. The intent is to throw them away in case of any bodily fluid contact. They are about 2 inches thick and filled (that is a very loose term) with some kind of mystery fiber that really only helps your head go immediately to the mattress below. I have been stacking pillows at least 3 high to feel like there is any kind of support. Finally, three weeks in to our stay, I decided to get my pillow from home. Needless to say, it was a MUCH better night of sleep!

Other helpful tips have been:

•  Bring your own bath towel. I am not a small human being. The loin cloth sided towel doesn't really cut it for daily use.
  
• Unpack your suitcase. Treat it like a hotel and unpack everything that you can. Whatever you can do to make life feel like it is less temporary will help you to feel more settled.
• Bring food and drinks that you like to have from home. The rooms have refrigerator's with ample room for several days. There is not a ton of room for extra supplies like a pantry, but there is space for a few days.
• Bring stuff to do. An idle mind (and hands) will do you little good. A break is nice for everyone, but too much time with nothing to do will only lead to more stress. If you have too much free time on your computer or device you will try to become a Google expert. When faced with medical issues, Google is rarely your friend. Leave it to the professionals to provide you with reliable resources to better understand. Tell your medical team you would like some resources and they will direct you.
• Get outside every day. This one can be hard! Depending on what is happening every day, finding the time to do it can be difficult. As the caregivers, we are always waiting for the next team of doctors to stop by and chat on their daily rounds. Staff is always most likely to stop by in the 15 minutes you are out of the room. You might have to get up extra early (this is REALLY hard for me) or get outside after dark. Whenever possible, try to get out in the sunlight. It will do you the most good.
• A nurse is a wealth of knowledge. Ask them about everything! You know you (or your child in our case) better than anyone, but nurses see hundreds of patients in a year. Their knowledge is immense. They have seen so many things that you have probably never even heard of or considered. Use them as the resource that they are. And, most importantly, let them do their job.
• Understand your importance (see my previous post about perspective). Sometimes you are the most important patient in the building, but most of the time you are not. Is it important for you to be demanding about getting something immediately if it is truly not urgent? I can remember standing in the doorway of Elise's ICU room when she was surrounded by 20 people working on her urgently. That was easily the most terrifying experience as a parent. There was nobody more important in the ICU at that time. That same scene would be replayed many times in the rooms of many other kids when we were there. Truly think about how important it is to push for something at any given time. There is a time for everything. Be aware of when that time might be for you.

Different doesn't have to be terrible. Nobody wants to stay in a hospital for a prolonged period of time, but there are more people out there doing it than you may realize. A few tweaks to your daily routine and the addition of some "creature comforts" will help to make life a little easier. It is the little things that make a difference.