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.

Patience

Outside of our mother, I can't recall anyone in my family having patience. It is safe to say that the Ballard clan is not well known for their patience in many circumstances. As I sit here in Elise's hospital room watching her, I find myself asking God, as I have done hundreds of times before, "Isn't there a different way I could learn this lesson?" I know this isn't all about me, but I can almost guarantee that I am learning a lot more than Elise is during all of this.

Life with a cancer kid, followed by all of the complications that she has experienced in life, has been one HUGE exercise in patience. When we started on this journey 11 years ago I used to think about how we were not a very patient society. That has only become more definitive over the past 11 years. For crying out loud, we have mobile ordering for fast food because we don't want to wait in line 3 minutes to pick up our meal! We want everything now! But, what happens when all you have to do is be patient?

Yesterday we learned that Elise is dealing with something called an Ileus. You can click the link if you want to know more about it. The most challenging aspect of this diagnosis is that treatment is.........time. There is no medication to be given. No therapy to speed things along. No awesome Google search to discover a random method being used in Italy that will provide a quick cure. Nothing. Nada. All it takes is time. And ultimately.........patience. Like anyone, I didn't do so well with the whole patience thing in the beginning. Honestly, there are still days where that is the case. But, over time, I have made slow progress.

I recall in the first few days of Elise's cancer diagnosis she was getting ready to take a bath. In order to do that we had to remove one bandage and replace it with something water proof. It was painful to remove it, so they recommended that a parent work on it slowly with some adhesive remover and a bit of patience. When the nurse came back several minutes into me working on this she said, "Wow Elise. Your dad is really patient!" I figured she was just trying to bribe me because that obviously was not true. But, it was important to me to set her up for the least amount of pain. Doing it right the first time would ensure that we didn't have to stop and do this over again, which would likely cause even more pain. So, patience won out.

As I mentioned in my last blog post about perception, patience is also a matter of control. We all want to feel in control of our lives, of what is happening with us/to us, etc. When things begin to get out of our control then our perception changes, we lose control of our emotions and suddenly we are all out of patience. We learned quickly when dealing with cancer exactly how much was under our control. Just a hint, in many things in life there is VERY LITTLE under your control. As soon as I was able to come to terms with what I could control and then learn to be patient with the things that I could not control, I found it became much easier for me. Don’t get me wrong, this wasn’t a conscious decision that suddenly changed my life overnight. This has taken YEARS to hone and get better at.

Just a couple of months before Elise's cancer diagnosis, Kelly had worked on a craft project with the girls. She traced their feet, cut them out, and then glued their footprints onto a piece of paper with the poem below written by an unknown author.

Walk a little slower Daddy

"Walk a little slower, Daddy!" said a little child so small.

"I'm following in your footsteps and I don't want to fall.

Sometimes your steps are very fast, sometimes they're hard to see;
So walk a little slower Daddy, for you are leading me.

Someday when I'm all grown up, you're what I want to be.
Then I will have a little child who'll want to follow me.

And I would want to lead just right, and know that I was true;
So, walk a little slower, Daddy, for I must follow you!!"

I keep this project by my desk all these years later. It is obviously much more significant to me today than it was when it was given to me. It was a cute reminder to slow down and enjoy those times when the girls were little. Today it is a constant reminder that I don’t need to rush through everything in life. Just as I am experiencing with Elise in the hospital now, she cannot be rushed. There is no need to hurry because we are seldom happy with the results when we are finished. With a bit of patience, we can endure everything. Some days we enjoy everything and some days we endure everything. We will get through to the end no matter what, but I will always look for the path that requires a bit of patience and the least resistance.

 

Perspective

The word perspective comes up frequently with the people that I talk with most and interact with most on social media. Many people have told me that they appreciate my perspective on life or many situations I encounter in my daily journey. Frankly, it hasn't always been this way. There have been lots of times in life where my perspective stunk. But, it is a skill that I have worked on immensely over the years. Some days my perspective still is not the best. But, most days, I can more clearly see when my perspective is not where it should be.

Like so much in my life, my perspective on so many things has changed in learning to live as Elise's father. Early in Elise's cancer treatment I can recall there being a family down the hall that was really struggling with the behavior of their child who was also undergoing cancer treatment. I never met that family and I have always regretted not going to talk with the dad. But, at the time, I can admit that I was not in a place to comfort anyone or provide any kind of assistance. One afternoon the dad was fed up and started spanking his child. I was mortified! Now don't get me wrong, spanking was a part of my childhood and had been a part of Elise's childhood before cancer as well. But, the thought of putting my hands on my child, who was fighting something far greater than anything we could understand, just didn't compute for me. Now, 11 years later, that day is still etched into my brain. I made a conscious decision at that time that I was not going to ever spank Elise again. There simply had to be another way to get through to her, and ultimately her to get through to me. My perspective changed.

After treatment and Elise's diagnosis of a seizure disorder, we were faced with trying to find a bed for her that would keep her safe at night and also make life easier for us. In our quest to learn more about beds, our social worker made contact with several families that might be able to provide some insight to us. As I was talking with one of the mom's on the phone, we each shared a bit about our child. She told me about her daughter with a regressive seizure disorder that would eventually lead to her losing her life. They were three years in to the five years of life time span she was given. She was telling me about how things had been getting much worse over the past several months and they were really starting to see some signs that the end was getting closer than they would have liked. It was truly a heartbreaking story for me. When I was done telling her a bit of Elise's story she said, "I just don't know how you guys do it. It sounds so hard." While yes it was hard, I was dumbfounded by her saying that to me. This mother, whose daughter was fading away in front of her eyes, couldn't comprehend how WE were coping. In my mind, we were no comparison to the struggles that she and her family were facing. Again, it was all about perspective.

As I sit in Elise's room during this hospital stay, and lay next to the window at night, not a day has gone by where there are not sirens, helicopters coming in with an emergency case, and code blue alarms in the hospital. There are A LOT of urgent needs out there, and A LOT of people in a similar or worse boat than we are in. In the first several days of Elise's cancer diagnosis, we were sent down to the cardiology clinic for them to do some baseline testing on Elise's heart. That would give them information about where "normal" should be for her as treatment, and later post treatment, progressed. While we were in a room waiting on the tech to get started with us, someone came in the door and said, "We need this room now. Would you all please grab your things and wait in the hallway?" Dumbfounded, we gathered our things and moved outside. Quickly a couple of people came down the hallway carrying this little body with two terrified looking parents in tow. About three minutes later the code blue alarm was sounded and that room was full of a whole team of people. We don't really know what ever came of that family, but that experience will live with me forever. While we were reeling from a new cancer diagnosis, this family was losing their child right in front of their very eyes. I learned in that moment to be thankful for what was in front of me.

 As I have thought about this over the years, I think it boils down to control. If there is one thing I have learned more deeply than anything else, it is how little control we truly have over anything. I am a type A personality which means I want everything to be "just so". In order for things to be "just so", you have to control as much as possible. Otherwise, my "just so" and your "just so" aren't too likely to mesh. So, if I want things to be a certain way, then I need to control as many of the variables as possible. I have learned how to understand which variables are truly important and which ones are not. No matter how hard I have tried, Elise has no interest in my "just so" desires. Even a type A personality can learn to be more laid back. In the end, what really matters? We all have work frustrations, family frustrations, marital frustrations, etc. Each day I try and challenge myself to shift my perspective to what truly matters. I challenge all of you to do the same. You will find it gets easier over time. Someone is always in a place that could benefit from your shifted perspective.

Setting the Stage

As many people know, I used to write a blog for a little over a year. Over time, priorities became a little different and writing a blog just wasn't as important as it used to be. I have thought about starting it up again many times over the years, but have finally decided to pull the trigger. In the end, you might just be experiencing a bit of a therapy session for me. Thank you for coming along this journey with me.

I have several friends that I have known from childhood, and many new friends I have picked up along the way over the past 10+ years. I thought I would use this first post to give everyone a bit of an overview of our family story. That might give everyone a bit of insight into what goes on in my life most days and who all the players are.

My wife Kelly and I met in college in 1994 and eventually married in 2001. We have two daughters that are a highlight of my existence. Elise is 14 and Abby is 12. In November of 2009, our healthy, happy, talkative and sassy daughter Elise was diagnosed with Acute Myeloid Leukemia (AML). Elise was three years old at the time and Abby had just turned one. Elise's AML diagnosis was just the beginning of what will be a lifelong journey of health struggles for her. The diagnosis, and all that has come with it over the years, changed the trajectory of my family's life forever. Thankfully, Elise has been in remission for more than 10 years and is no more likely than you or I to ever have cancer in her life again. Unfortunately, cancer treatment left behind a wake of struggles for her.

During cancer treatment, Elise contracted the Human Herpes Virus #6 (HHV6) on her brain. Almost instantly she lost all of her "normal" functions and reverted to an infant. She could no longer eat on her own, go to the bathroom, talk, etc. With many stops and starts over the years, she has never managed to regain many of those skills over time. With the way the MRI of her brain looks, doctors tell us that she actually functions far better than they would suspect. She has extensive damage in her brain from the HHV6 infection. When she was younger, there was always hope that her brain would rewire itself and form new pathways. Each year, more and more of that hope fades and is replaced by a need to learn how to function as she is. 

Post treatment Elise was undergoing extensive outpatient therapy to regain skills lost and was making tremendous progress. Then, out of the blue, she developed a seizure disorder. The types of seizures have changed a bit over the years, but not much else. After diet changes and numerous medicine combinations, we have never been able to get the seizure disorder under control. A couple of years ago, Elise was diagnosed with Lennox Gastaut Syndrome, which is a complex, rare and severe form of epilepsy. Until these past couple of weeks, her seizure disorder has been better under control in the past couple of years than most of the 8 or so years prior. But, with adolescence has come significant struggles to keep her seizures under some semblance of control. On a "good" day Elise will have 1-10 seizures. They are generally short, lasting 3-5 seconds, and are spaced out throughout the day. On a "bad" day, Elise will have upwards of 100 seizures or more. Often times those come in clusters every few minutes or for prolonged periods during an hour. As an example, today she has not had a one hour stretch with less than 5 seizures. So far today, her worst hour has been 10 seizures within that hour. Fortunately, she is already at the hospital and can get some high-powered medication that should make a pretty big impact quickly.

Not only has Elise's life been impacted by all of this, but so has the life of Kelly, Abby and myself. Nobody signed up for this. Over the years we learned to cope with it. So many people tell us, "you make it look so easy." While I am flattered, don't kid yourself. Nothing about this is easy. Under that smile and easy-going demeanor is exhaustion, worry, insecurity, and so much concern for what the future holds. As a family we put all of our efforts into providing Elise with the best life possible. While that can often be exhausting, we have met some of the most amazing people and had some of the most awesome experiences on the way. Sometimes even struggling has benefits.

Kelly recently sent the meme below to me privately. I thought it was too good to keep just between us. We know several families that have similar struggles to ours. While they aren't always glamorous, we'll embrace our unhealthy coping mechanisms.