So Much Unknown

I have seen this quote many times over the years. If anyone knew something about perseverance, it was certainly Christopher Reeves, particularly later in his life. Parenting a child with special needs is certainly an exercise in perseverance. Elise was born a "neurotypical child" and became a "special needs child" due to a brain infection during cancer treatment. The last 10+ years have taught me much more, but perseverance is certainly one of the greatest lessons.

One of my greatest challenges on a daily basis is just the unknown. After more than ten years of this journey with her, there is still so much that we don't know! Elise does not talk, so getting answers from her can be a challenge. Don't take this to mean that she doesn't communicate, or that she isn't able to tell us some things because she certainly can. But, it doesn't look like what you get from a typical child. Sadly, the biggest "X Factor" for her is seizure activity. Our greatest source of unknowns for her is related to seizures and her brain.

The Morning After a Bad Day

Over the past couple of weeks, we have been seeing some increased seizure activity from Elise. So many times, over the past couple of years those increases can be traced to some type of infection. We are not able to always figure that out quickly and it is challenging to get help for her until there are enough symptoms to warrant a doctor visit or diagnosis. This time is no different. There is no easy answer for her. On Tuesday, things kind of came to a head and she had to get "rescue medications" at school to get the seizures to stop. I went to school to pick her up and see if we could get things under control at home. The first two rescue meds didn't really do the job, but the third one did and finally provided much relief for her (and me as well honestly). She was finally able to rest and had a quiet evening and then a much better day on Wednesday. Although, she was a bit sleepy in the morning trying to get those meds out of her system. The picture on the right is her waiting for the bus on Wednesday morning. She is awake, but I wouldn't say too alert.

Sadly, Thursday brought us much the same as Tuesday, although the time of day was different. She had a decent day at school, but had more than her "normal" amount of seizures. Just typing it helps me to understand how absurd that really sounds. There have been very few days in Elise's life in the last 10 years that she has not had a single seizure. She is a seizure cluster kids, which means she generally has shortly duration seizures, but tends to have them in clusters rather than just a single long seizure. We have seen some good improvement since summer and most days we have been able to be under 25 seizures for the day. Yeah, you read that right. That has really been the case these past couple of weeks, and this week in particular.

See the difference?

After a tough late afternoon and evening on Thursday, I finally had to give her a rescue medication late on Thursday night. I skipped steps 1 & 2 knowing full well that if step 3 didn't work, we were going to have to go to the hospital. But, doing steps 1 & 2 would have drug out the process for at least another hour. Fortunately, my plan worked and the "step 3" rescue med worked like a charm.

As you can see by the picture on the left, getting up in the morning after a hard night of seizures is not easy. I felt for her. Honestly, I might have even felt like her this morning. A little more sleep would have done me some good as well!

In talking with her neurologist today, he didn't really have any answers. Nobody really has any answers. She is complicated and there are so many unknowns! It can be extremely disheartening and frustrating at time But, that search for solutions and answers for her is what keeps me going every day.

We will never know all of the answers for her. I do know that. But, if I can figure out one answer, that is one more piece in the puzzle the next time something happens. I still haven't figured out the why for what is happening with her right now. It continues to be a work in progress. But, I will keep searching!

It's All About the Process

Fully smoked ham

Early this winter our family processed our 6th or 7th pig. This is something that I never saw myself doing or getting in to. I am a "city boy" and knew little to nothing about most animals other than the way many of them taste. I have never hunted, but I have always been a bit fascinated by what people do. Pigs, while kind of a disgusting creature, produce some of my favorite foods to eat. But, in order to get the various cuts into something that is enjoyable, a fair amount of work has to take place. I am by no means an expert. But I have enjoyed getting to better understand the process and all that goes in to it. In order to have a beautiful ham like in the picture on the side, it takes a few weeks to get there.

First, let me better explain what processing means in my terms. There is no butcher shop involved. One of my good friends decided a few years ago that he wanted to start raising a couple of pigs per year so that he could add the meat to his freezer. After talking BBQ several times he asked me if I would like for him to raise a pig for me as well. Having no idea what that really meant, I agreed! Honestly, he does about 95% of the hard work and our family reaps the benefits. I am well aware of this fact. After the pig is sufficient in size, usually 250-300 pounds, I make the trek out to his house where the process begins. Over the years we have improved the process and have turned it in to one short evening followed by a short morning the next day.

As long as the weather is going to be cold enough, we dispatch of the pig in the evening and come back for processing the following morning. Much like processing a deer, after the animal has been shot we haul it out into a clearing, lift it off the ground via a hoist, wash it off, gut it, and leave it to hang upside down for the night. The next day the butchering really begins.

She enjoys it!

When Abby was 6 or 7 I asked her if she would be interested in learning about this whole process. She was interested and I lugged her out with me a few days later to get her first experience. We were doing things differently then and we did everything in one morning. She fed the pig a little something shortly after we arrived, my friend dispatched of the pig and the processing began immediately. Abby's first time we even went home and had ribs from our fresh pig that night! To my surprise, she loved it! She didn't necessarily enjoy being a part of the killing process, but I believe it gave her a much better understanding of the circle of life. Shortly after the pig was shot she said, "Poor piggy.........I sure do like bacon though." And, like that, her love of pig processing was born!

Also to my surprise, her favorite part is really skinning the pig. She is pretty good with the knife and is meticulous about getting the skin off with just the right amount of fat still attached. Once the skin is off and we are ready to start making the primal cuts, she doesn't really care to be a part of all of that. She is fine running off to feed the chickens, play with the cats, or even tend to the garden if the time of year is appropriate.

Ham in the brine

Once we make all of the primal cuts, then we bag things up and take them home to be prepared, packaged and frozen. One of the more time consuming cuts is the ham. The ham that so many of us love, actually comes from the rear end of the pig. The term "pork butt" has many people confused. The "butt" of the pig actually produces the ham. The picture on the left is a raw ham that is curing in a food grade bucket. If you have ever wanted to do something like this, you can find out how to do it here. For the most part, the ham sits in that curing brine for about 2 weeks and then it is ready to be smoked or frozen. The end result of smoking this same ham is in the first picture on this post. It turned out awesome and VERY tasty.

35 pounds of raw bacon

One of the other time consuming processes is curing and making bacon. Bacon, as we all know it, doesn't come off the pig in its ready to eat form like so many assume. In order to get the more red meat coloring it is imperative to cure the bacon as well. These are smaller cuts of meat and don't require quite as long of a curing time. Generally these sit in the cure for 3-5 days and are ready to be smoked. Interested in trying this yourself? You can see the recipes I used this time here.We make a combination of "regular" bacon and maple bacon. With a smaller piece of pork belly that I had, I also made some Asian bacon.

Smoked with Apple Wood

 This is all a bit different than store bought bacon. Because of the lack of sodium nitrate, the bacon is never quite as crispy as you get it from a store. I prefer a chewier bacon, so this is just fine with me!

Honing her skills

I am fortunate to have a smoker with a large enough chamber to easily handle 30+ pounds of bacon. The finished product is usually quite beautiful and tasty straight off the smoker.

We slice it all up and vacuum seal it into roughly 1 pound packages. The boss is usually the master slicer and does a better job of getting our slices pretty even. It takes practice. Over time we have found that an electric knife with a slicing guide doesn't pretty well for us. We should maybe upgrade to a better slicer, but this works sufficiently for our needs.

Grinding it up

The other real time consuming process is grinding pork and making various sausages. We have experimented with several different things over the years and think we have this process down decently as well. Just this year I bought my own meat grinder. It makes pretty quick work of large volumes of leftover meat. Once I have cut up the large primal cuts into roasts, bacon, chops, ribs, etc. there is always a bit of leftover meat that doesn't form anything great on its own. Rather than waste any of it, this can all be ground up and turned in to something. It can be just ground pork, or turned into various sausages.

It's cold!

Some of our favorites are breakfast sausage, Italian sausage, and summer sausage. All of this gets vacuum sealed and frozen for future use as well. The last two years we have made 30 pounds of summer sausage each year. That will generally get us through lots of pool gatherings during those warmer months. We even enlisted the help of one of Abby's friends in our sausage making day this year. It was a LONG day, but we accomplished a lot.

We have learned a lot over the past several years. Processing the pig has become a family affair. Finding room for 175ish pounds of meat once things are finished is always a bit of a game of Tetris as well, but we make it work. For now we enjoy the fruits of our labor and look forward to the next processing in the early winter of next year. My shirt below was perfect (but unplanned) for this day. "When in doubt add bacon." Fitting for my family and I both.

Beautiful isn't it?

 

A Five Star Dinner

Valentine's Day has never really been much of a thing in my house. Our wedding anniversary is right after the first of the year. Between the holidays and our anniversary, it just always feels like too much to "celebrate" something else. As I have mentioned before, Kelly is a pretty simple girl and I have always appreciated that. Besides, I try to buy flowers more than once per year!

But, I have always loved a "fancy" dinner. With kids at home we don't dress up and get out very often. But, I have been known to make an occasional candlelight dinner at home for all three of my girls. Like me, Abby loves a "fancy" dinner. 

Abby asked me if I was planning anything special for mom for Valentine's Day. Before you get too impressed, I believe it was the morning of when she asked me if I had a plan. I told her that I was planning on making Pasta Diablo, one of Kelly's favorite dishes from an area restaurant. 

After a little bit of pondering Abby said, "You guys should do a date night without us. Well......you can't really go anywhere, but maybe I could set up a table for you in the basement and you could eat down there." I thought that was a great idea! She asked for some creative license to do as she wished and I gave her the go ahead. Once she was all set up she asked me to come and check it out and I was impressed!

She decided to repurpose her desk she uses for school as our table. She found a red table cloth somewhere, place mats, wine glasses (for the people that don't drink wine) and even some battery operated candles that we had sitting around. It was really a very nice job.

In true Ballard fashion, it was a hodge podge of things that we made work and it actually turned out pretty nice. In the picture on the right, you might notice that 2 of the 3 candles aren't "lit". They had dead batteries. Kelly is in her workout clothes that she wore all day and I was in my same pajamas that I wore to church on the couch in the morning. We were surrounded by some of the clutter that is our basement. Our wine glasses were filled with water from a pitcher that wasn't quite put together correctly.

But, more than all of that, we were able to devote 30+ minutes of time with each other just enjoying a meal. Nothing else mattered and the company was great. No 5 star restaurant, but it was enjoyable just the same.

We don't really need a holiday to celebrate each other. We try to do that many times throughout the year. If it wasn't so cold, I might even try to go buy some clearance flowers now. Maybe in a couple of days instead.

Interested in the recipe that I made? Check it out here.

Still In a Holding Pattern?

In 2003 Kelly and I purchased our first house. It was an exciting time! We purposely bought a fixer upper so that we could learn how to do some cosmetic work to the house. We were just handy enough to be dangerous, but certainly up for the adventure. That fixer upper happened to have a leaky basement. Everything we tried over the 5 years we owned that house created another location for a basement leak and we could never get it stopped. 

 We found another house to buy less than a 1/4 mile away and were looking forward to moving up in size of our house to accommodate our growing family. This "new" house had a roofing issue. Our insurance company wouldn't cover it, and the seller refused to fix it. So, we walked away from the house less than 2 weeks before closing. Like most good sellers we had set up the timing to sell our current house to line up with buying another house. But, with the house we were buying falling through, we were now going to be homeless in 2 weeks. We decided that the past year plus had been too taxing with the birth of our second child, looking for a house, selling our own house, etc. So, we quickly found a place to live in a neighboring town and decided to rent for a year. Fortunately we sold our house for a nice profit and were able to pocket a chunk of change to put down on another house soon, or so we thought. 

Instead, Elise was diagnosed with cancer just a few months later and our lives went in a totally different direction. As Elise finished up cancer treatment and began rehab in a Kansas City facility, I lost my job. Elise needed this therapy if we had any hope of getting our daughter back to where she was pre-cancer. With Kelly staying home with our kids, and myself without a job, we no longer had anything keeping us in the area where we lived. So, we decided it would be best if we relocated to the KC area. The grass will surely be greener there!Yeah.......not so much. 

 After moving to KC, finding a job was harder than I thought it would be. I was completely unemployed for 8 months until I eventally found a part time job. I applied for a job with K-State at their new Olathe (Kansas City area for those not local) campus and was never even contacted. Several months later my sister encouraged me to apply for a job that she saw in a similar unit that she with in Manhattan. I figured they didn't contact me for a KC area job, so they certainly wouldn't contact me for a job in Manhattan. But, as luck would have it, I landed that job in Manhattan. This was about 15 months after becoming unemployed. At the time I thought this might be a short term solution and that I could transfer this job up to the new Olathe campus. With that, I didn't want to move my family just to move them back nine months or a year later. That job never materialized, so we eventually all moved to be back together in Manhattan. 

I never realized it at the time, but when the purchase of our new home fell through back in 2009, we embarked on a series of events that always felt like one giant holding pattern to me. We moved in to a rental so that we could regroup and think about looking for a new place. Cancer happened and our world got flipped upside down. We moved to KC as an instant fix to get our family back together after a really difficult previous eight months. We had no idea what the future held, so we decided to rent again to try to figure out our lives. The house we were in suddenly sold while we were living in it and we got short notice that we had to be out. So, back into the rental market we went. We were able to quickly find another place that worked for us and did not require a ton of effort. A couple "short" years later, as we planned to move to Manhattan, we decided that continuing to rent would be in our best interest. 

We were a one income family, one child in preschool and another in first grade. Elise had lots of challenges that we were just beginning to work through. As she got older, the challenges changed. Getting around the house was always one of those challenges that we never quite knew how to tackle. Renting provided us the easiest way out if the housing situation wasn't working. Fortunately, we managed to handle it just fine for the next 5 years. But, "managing" and thriving were certainly two different things. 

I love to look at houses. I like to go to the house sales sites and browse around. I don't just like to look at the stuff that I can't afford. I also like to look at the stuff that I can afford and dream a little bit. As I sat on the couch one December night, scrolling through Facebook after the kids went to bed, I came across a sponsored ad for a house for sale in Manhattan. I clicked on it and loved the layout of it almost immediately. As I frequently did, I told Kelly that she should check out this house that I found. I handed her the iPad and she scrolled through the pictures and said, "yeah, it looks okay". That was a pretty standard response and I honestly didn't think much about it. The next day she came home and said, "I drove by that house you showed me last night. I think we should go look at it." I was shocked! This was too good of an opportunity to pass up. I contacted the realtor immediately and we were in for a showing pretty quickly. Shortly after that we put in an offer on that house and would be closing on it soon! 

We weren't house shopping. We looked at one place and bought it. We had been passively talking about buying a house. We loved having something of our own with our first house, but things were just "easier" when we rented. Honestly, there were a lot of aspects of renting that were easier and it worked well for us. But, without a place that we owned, we just weren't able to do much work to improve accessibility for Elise and ourselves. The doors of opportunity busted wide open when we committed to buying our own house. We have slowly but surely done some improvements to our home, but 2021 is shaping up to be a big year for us. When we were recently getting our house appraised we were asked to put together a list of improvements that we have made to the house since we moved in 2.5 years ago. What didn't seem like much actually filled up an entire sheet of paper. We have transformed the front of our house. What once was covered up by 8 foot tall bushes, is now wide open and covered in a paver patio along with a ramp to get Elise easily into the house. This was a game changer for us and has made getting in to our home so much easier. When we take her to the houses of our friends and family I am reminded of the challenges that we have with mobility and accessibility in most places. But, when we are home, all of those concerns go away. 

At the same time we added a ramp to the front of our house we also did a bathroom renovation that provide us a roll in shower for Elise along with a new shower chair to move her around in. Gone were the days of lifting 80 pounds of teenager in and out of a bathtub. While the system we have is not perfect, it is far better than the lifting from the tub that we did for several years. 

Sadly, life with Elise is often filled with regression. Over the past couple of years we have watched her physical abilities diminish to the point of her not being able to do much of anything for herself. She is not walking (even with assistance currently), moving herself around in the bed, or sitting up on her own. While we hold out hope that there will be improvements in these areas, we also know the reality that eventually the progress will stop and we will be faced with life as it is. Right now, we are better equipped to face that reality when it gets here and we are closer than we have ever been to being caught up to our needs. 

Fingers crossed, in February of this year we will be getting a ceiling mounted track lift system installed in our house. While it is not sexy, it will make so many things easier. While we aren't THAT old, we sure do feel like it! And, as Elise gets older and heavier, we will be getting older and weaker. We all stand a better chance of being healthier if we can find a way to keep her active while also helping our own bodies. My back has enjoyed the improvements we have made already! In addition to this, we will also be widening a couple of doorways in the house. If I didn't write about it, people probably wouldn't even notice (unless I can't get the colors to match!). But, this will make for easier transitions as we move Elise around the house to various rooms. 

A large majority of the our projects have been focused on making our life "easier" in one way or another. Several projects have been focused on Elise. We have already done an "unsexy" project of replacing our roof in 2021. We are contracted to get a new air conditioner this spring as well. We will repaint the pool, do some new light fixtures in several places and maybe even do some painting. But, most importantly, we are going to renovate our master bathroom. For the first time in almost 15 years, we are going to tackle a fairly major project like this. The last time I renovated a bathroom, Kelly was 8 months pregnant. I told her I could get it done on the weekend and to go visit her parents. I would get it done before she got home. Needless to say, that ambitious plan didn't quite work out that way. I did get it done before the baby came, but it was longer than a week and it took the pregnant lady helping me cut tile. 

This time will be different. Kelly isn't pregnant and I don't think I can get it done in 2 days. But, I look forward to the challenge. More than anything I look forward to demolishing some things and having a nice relaxing place at the end of the day. I'll keep you posted.

Time to Recharge

As I wrote about recently, we celebrated our 20th wedding anniversary on January 6th. I wanted us to take a nice trip somewhere, just the two of us, and be able to provide a bit of pampering to Kelly. I found a great deal for an all inclusive trip to Mexico and pulled the trigger on that in February of 2020. But, thanks to COVID, that trip is not going to come to fruition. Huge bummer!

As we contemplated what to do, Elise experienced a lengthy hospital stay in November and December, COVID cases spiked again in December, and "going away" just didn't seem like a good idea. So, we did what we always do........we adapted. We had a staycation instead. Our helper for Elise, Emma, came to stay for a couple of days and nights and we "got away" to a hotel here in town. It was not Mexico! But, it was pretty glorious nonetheless.

Honestly, I think it was exactly what we both needed. Familiar surroundings, no responsibilities, great food and drinks, and a jacuzzi tub! What else could a person want? More than ever I have REALLY been feeling the burden of responsibility. Elise requires assistance to do everything in her daily life. Even during the best of times that can be exhausting. COVID times have made that even more challenging for sure. Because of social distancing, the funky schedule of the university for students, and hospital stuff for Elise for we received much left help than we normally would. We have always employed great college kids that help us tremendously, and right now is no different. But, because of the things I mentioned above, she just hasn't been around much. Kelly is generally out of bed before the sun rises, all year around, seven days per week. I'm the "late shift" guy and take care of anything that happens before about 3:00 a.m. Kelly gets the early morning stuff. Certainly not ideal, but it works for us.This past weekend we were able to have three leisurely mornings in a row! Kelly wasn't out of bed before the sun came up and I had no middle of the night responsibilities. It was heavenly!

We didn't venture too far, but we got to go wherever we wanted WHEN we wanted to. That was a huge blessing for sure! I've had catered food from The Friendship House in nearby Wamego many times, but we never made it there to eat. We certainly enjoyed a nice leisurely breakfast there on Sunday. We followed that up with a visit to nearby Mount Mitchell outside of town and a trip to the Beecher Bible & Rifle Church. We walked about three miles of the trail at Mount Mitchell on that brisk morning and really enjoyed venturing through the prairie. We learned that we are not cut out to be settlers and walking for days in the prairie terrain to establish our home is not something that is in our makeup. I have profound respect for our ancestors so long ago. We finished up our time together with a warm cup of Chai Tea at the new Brothers Coffee here in MHK. We haven't been inside too many places to eat or drink anything in the past 10+ months, so it was a bit weird. But, we enjoyed it (and would recommend it) nonetheless. Enjoy a few of my pictures from our hike around Mount Mitchell and the surrounding area.

For As Long as We Both Shall Live

Our wedding photo

January 6th of 2001 was a very unusual January day. The weather was unseasonably warm, the sun was shining, and snow and ice were nowhere to be found. We had lots of family and friends in attendance and things went about as perfectly as we could have hoped for. It was a great day for our wedding.

For those that knew us in our younger years, you probably recall it took me a fair amount of time to "grow up". I enjoyed my college experience and drug it out about as long as possible. But, it occurred to me at one point that Kelly probably wasn't going to wait for me forever. It was obvious that I wasn't going to run her off so I got my act together. I was ecstatic when she said yes when I asked her to marry me.

Pretty cute huh?

We went on our first date in December of 1994. So as you can see, it took me 7 whole years to come around to this whole marriage thing. After getting married, we waited another 5 years to start our family. We had tons of adventures in those early years. We heeded the advice of many and did A LOT of traveling before kids came. 

Don't let the fancy dress and pearls fool you. She is a simple girl. Not so secretively, I have always loved that about her. I asked her where she would like to eat on our first date. When she replied, "McDonald's", I was in college boy heaven! I was prepared to take my lumps with an expensive dinner, but to my delight she was much more simple than that. While her tastes have changed some over the past twenty years, she still loves a good hamburger and simple is still her style.

A cross stitch done by my sister Val.

When you are twenty five, healthy, and the whole world is in front of you, the vows you say on your wedding day are pretty simple. Like so many, I can say that I had no idea the amount of commitment it would take to live up to those vows. Like the picture on the left, we have experienced all of those things in our first 20 years.

It is fairly easy to love each other when you have money left after your bills are paid. But, life is much more stressful when the ends don't meet. Loving each other when life is flowing smoothly is also far more simple than when you can't see eye to eye. I honestly never considered that "in sickness and in health" would be something that also involved our kids. In the beginning it seemed that a little chicken soup on an ill day should suffice for fulfilling that vow shouldn't it? 

"For as long as we both shall live." More than anything, that is the line that fuels me. I have made a commitment to Kelly and I intend to keep it. It would be "so easy" to give up some days, or at least that is what so many people will tell you. But, would it really be that easy? In these past 20 years we have faced some tremendously difficult times. There have been days, months, and probably even years where our marriage didn't come first. But we have held on. It certainly has not been the fairy tale that many people would try to lead you to believe.

We all have visions of what our lives will look like when we grow up. I never envisioned the life I have lead the past 20+ years. In reality, very few people ever lead the life they envisioned. What would be the fun in that anyway? Always having everything turn out the way you expected would get boring right?

I was recently listening to a marriage podcast where the interviewee mentioned that his research had found that the first 20 years of marriage were the hardest. Really? That is fantastic I thought! If we have made it through the hardest part I will take it! I'm positive that there will be lots of fun and tough times ahead, but I am certainly better equipped to handle them than I was 20 years ago.

After dating so long, I thought I knew Kelly about as well as I could. She is kind, compassionate, helpful, quiet, reserved, and creative. More than anything over the past 20 years, I have learned that she is strong, devoted, dependable, resilient, hard working and strong. Did I mention she is strong? Yes, I meant to mention that 3 times. That might not be enough.

The life we have is messy, challenging and often bumpy. Yet, the life we have is also fun, amazing, and full of so many beautiful things. We have experienced so many wonderful people, places and things in our 20 years of marriage. When the times have been tough, we have held on tight just like the picture above. We are in this together, "For As Long as We Both Shall Live."