Just one week

Since the Big He’s diagnosis we have wanted to bring awareness to not only the disease ALS but the prevalence in the military community. We have written blogs, did Facebook and Instagram posts and Tweeted, I wanted to do something a little different. Instead of writing something, I wanted to show you what one week looks like. For time sake, I did not include our whole week…just the highlights. Besides what is shown in the video below is the non-hands on care that occurs. It’s things like keeping an eye on supplies. Making sure they are ordered and received before we run out. I must find homes for the constant Amazon boxes and VA deliveries. The time and energy spent on the phone facilitating care for the Big He happens behind the scenes. In this particular week, I needed to secure a Dentist which was not an easy task. Working with the VA on this and the support we would need took a toll on me. You sometimes need to talk to multiple people before the game of “telephone” ends and everyone figures out what was originally said or requested. It actually took me three days to recover mentally and emotionally. While we don’t deal with emergency dental procedures every week, every week something is going on.

ALS is not for the weak for sure. We are warriors and we will fight this enemy every. damn. day.

ALS-Just one week

All my love,

The She

Unintended Consequence

Have you heard of this term? As I was waking up this morning, this term came to mind as it relates to being a caregiver to my veteran husband. It is term I would keep in mind, as an environmental regulatory consultant, when reviewing proposed rules. One of the things I tried to identify when I read rules was that the proposed rules did not have any unintended consequences. That is, were the rules written to solve one issue but created another one that was never intended.

This morning, it dawned on me that veteran caregivers are in a sense, unintended consequences. Stay with me…when the Big He joined the Air Force he knew there were risks. When he deployed that Christmas in 1990 to Saudi in support of Desert Shield/Desert Storm, he knew there were risks. I knew there were risks. However, do you think the Veterans Health Administration would have ever thought about the consequences of the caregivers to those veterans? I often say, I do what I do because I love my husband, which is true, but as a caregiver, I bear the brunt of the result of my husband’s service. I am so proud of that service. I am proud of him, but there have been unintended consequences for me as a caregiver. My physical, mental and emotional health has suffered. It’s not something I or many of those caregivers I speak to like to talk about. Most of the time, we just do what needs to be done. We hope the promise by our government leaders and the VA to help care for the caregiver will be fulfilled.

So why did this term come to me this morning? For over a year I have been asking for additional help. Particularly help at night a few nights a week. As the primary caregiver to my now paralyzed, vent dependent ALS veteran husband, I am exhausted. Yes, some nights we get more than 4-5 hours of sleep, but it is not that good, restful sleep. I am always listening to the sound of alarms or that sound the Big He makes as he struggles to breathe because he needs suctioning. I have been denied night time help by two different programs at our local VA. The frustration factor is at an all time high. From my perspective, it as if the clinicians making these decisions are truly clueless to the needs of the veteran and their caregiver. Keeping in mind that these clinicians have probably not done patient care in some time. At our local VA, the hiding behind problems is common and it may be due to an old mindset that government officials have. It is a rare few that don’t see a problem, just a solution that has not been discovered yet. [disclosure: I was a state government employee for a few years so yes, just as in any profession, there are those that go to work to collect a check and those that go to work to make a difference].

I am working through these issues. Step by step, person by person. While there are times that yes, I get tired and throw my hands in the air and say, “I am done”. However, the next morning I wake up and try again. You see with unintended consequences, it doesn’t mean that’s it. It means you work through the problem, identify and eliminate the cause of the unintended consequence. This means, seeing the caregiver for their true worth and doing what needs to be done to ensure they have all the resources needed so we can keep our veterans with us healthy and strong for as long as possible at home where they belong.

All my love,

The She

Month of the Military Child # MOMC

See the source image
Button courtsey of the Elizabeth Dole Foundation

April is the month we recognize children of those that serve in our military and in realty those that have served. Our Little He came in to our lives years after the Big He honorably discharged from the USAF. We never imagined that we would be thrust so actively into this community again. Our time in the military were stories we shared with our boy. Pictures we shared and fun souvenirs he could take to school.

Once we learned the Big He’s ALS diagnosis was connected to his military service and our connection to this community was re-established, our son has now seen first hand what being connected to the military community really means. Just as we learned when we were so young, the military takes care of their own. They watch out for you for one reason, you are family. The Big He’s brothers and sisters he served with have reconnected with us and have shown our son the same love and friendship they have for us.

Today I want to recognize our amazing man-child. He was only 13 when he learned his Dad had been diagnosed with a terminal disease. It was the day that would start his journey as a kid caregiver. I have to say kids are amazing and we don’t give them enough credit at times. As much as we want to protect our boy from the heartache this disease causes, I know it is this journey that will shape him into a man we could only dream he will become.

Our boy has become so much more empathetic which is not something you find in a tween and teen. His responsibilities are also more than the average teen. He assists with those things around the house that his dad once did. He assists with the daily hands on care of his dad. To some extent, care that most adults will never have to do. He does it with a smile and joke most days. His sense of humor has grown and he has learned to use humor to help cope with the sometimes embarrassing or awkward moments. His emotional intelligence is sharpening [more than some adults I know]. This trait will serve him well in the future. I hate he has to experience so much pain so early in life, but the man he is becoming because of this journey makes his mom and dad’s heart smile with pride. We know he will have the skills to handle whatever this life throws at him.

Tom and Trey Drivetanks.com
Tom and Trey during physical therapy
Valentine Shenanigans

All my love,

The She

Bonus year 2019

Today, we mark one year since the Big He had his trach placed. In a month we mark 4 years living an ALS life. Had the Big He not chose to trach, the Little He and I would be approaching a different anniversary. The memories of watching him struggle to breathe and how weak and helpless he looked laying in that bed will forever be etched into my memory. The fear that I felt as I watched him was incredible. Night after night wondering if I would be leaving the hospital a widow. Overwhelmed with how I would tell the Little He. I am not sure how many people truly knew how I was barely holding on. I gave a brave face to the Big He and Little He and those around me, but at night when the ICU was as quiet as it could be with all the equipment and alarms, I would pray for comfort. I would pray for strength to hold it together one more day and I would pray for my husband.

His decision to trach was made because he was not ready to die. His decision to trach was because he loved us that much. His decision to trach has not been easy. The recovery from pneumonia was very, very hard. He experienced greater paralysis as a result of the insult to his body. Not gonna lie, this has been an incredibly hard year for our whole family. I can tell you that this year has also shown the Little He and I how much we are loved by the Big He. Not only has he fought hard physically to recover from the pneumonia he has fought mentally as well. He walked (figuratively of course) a very dark path for many months. Are those days behind us? Probably not, I mean with a terminal disease, with paralysis and with the need for life support there are a lot of dark days. The difference between now and then is that the Big He can see that there are bright days too. If we can focus on those days, I think we are doing pretty good.

He spends the majority of his time in bed, but I am hopeful that as we push into Bonus Year 2020, we will see more outings and making more memories. This past year has not been all of losses for him. He has gained 30 pounds, he started standing in a standing frame, he started coming off his ventilator for short times, and recently he has started to sit on the side of the bed and use his own muscles to hold him self steady. He has even begun to move forward and backward and side to side. Not bad for a guy that was supposed to be paralyzed. We will take every win we can get.

Photo by Christian Fridell on Pexels.com

I hope you now see why this is our Bonus Year and I pray we have many more to come. If you are out and about this weekend or even staying home, raise a glass and celebrate our bonus year. Post your pictures and tag our Tom’s Troops Facebook or Twitter accounts and use the hashtag #bonusyear2019 so the Big He can see his Troops celebrating with him.

All my love,

The She

Everything

Several months ago, the Big He had the opportunity to co-write a song with singer/songwriter Darden Smith. This was made possible by a non-profit in the Austin area called Swan Songs. Swan Songs grant the gift of music for those ending their journey here on Earth.

During the song writing session, I was not able to be present. So hearing the song for the first time was incredible and melted my heart. This is a love song for our family. So grateful to be able to have this amazing legacy of the love that the Big He has for our son and I.

For more information on the work of Darden Smith and his non-profit ‘SongwritingWith:Soldiers’ please visit the link HERE

For more information regarding Swan Songs, please visit the link HERE

I hope you enjoy this beautiful song.

All my love,

The She

Making Memories With a BANG!

A few weeks ago we did a summer vacay. Not the one that was originally planned which was to go to Las Vegas. Vegas was actually going to be the Spring Break make-up trip that was put on hold due to the Big He’s need for a trach earlier this year. I had planned for us to go to a gun range in Vegas that had really cool military stuff to shoot and drive. It was going to be one of those things the Big He could share with the Little He. Let the Little He shoot the same guns his dad used while in the Air Force. We didn’t do Vegas because we were just not ready to fly and do that extensive travel as a disabled family. Big He and Little He were up for it…bottom line I was scared. So, instead of scrapping a trip all together, I found a place just outside of San Antonio that could let my men experience some good clean fun at the shooting range as well as have things for me and the Big He’s caregiver to enjoy.

Where did we go? Ox Hunting Ranch in Ulvade, Texas. This is also the site for DRIVETANKS.com. We spent three days and two nights on the ranch and while it was HOT, we had a great time…well mostly had a great time. Now days in order to travel I have had to step up my logistics game. Prior to our arrival we had to connect with the local ALS Association to get their help with DME that we could use while at the ranch. Additionally, I had to coordinate with the ranch to see if cabins cold accommodate the added DME. Of course all worked out. The equipment we needed was delivered and the ranch had the room set up to accommodate the Big He’s needs.

When we left Cedar Park, we ended up taking the scenic route which of course took a tad bit longer then the more direct route. You know what, I am glad we did. As I drove to Uvalde, I thought over and over about how I wish we would have spent more time taking the scenic route during our lives then the more direct route. While the end points are the same, one path is easy, straightforward and is not much to remember while the other may have more twists and turns,more enjoyable and gives you many more memories.

I won’t lie, the three day’s had their up’s and down’s but overall a good time was had by all. It was our first trip since all the…I don’t even know what to call it…all the hardship of the first part of the year. The highlight for the trip was to take place at DRIVETANKS.COM. We had arranged for the Little He to not only shoot the same weapons his Dad did while in the military but to drive a tank. Part of the day also included having one of the Big He’s Air Force Brothers show up to be the surrogate Dad we needed to participate in the events. This is not my wheelhouse and just not my thing but I wanted the men in my life to enjoy the day which is why Brother Billy was called to help out. As always, he was there when we asked with not only a camera to capture the day but also venison sausage for us to take home.

The DRIVETANKS folks were A-MAZING. I knew that my Little He was in good hands and was safe and shown proper gun safety during this adventure. We found out all the guys were Veterans as well and they made the day very special for our boy. They get it. They understood the significance of this trip. I know we just met the men but it is like with everyone we meet that have served…instant connection and instant family. Doesn’t matter which Branch or when you served, there is a connection that you just don’t understand unless you are part of this Band of Brothers I don’t ever really get it as I am on the periphery as a wife…also known as ‘the dependa’. The Big He and I married just 10 months after he joined the Air Force so I have been watching and experiencing this for a long time.

I also can’t talk about the trip without talking about the incredible place that the Ranch is. The animals all around were incredible and so beautiful. The people from guest services, our guide Matt, Entertainment Director Chelsea, and the rest of the staff were so accommodating and helpful. They truly want you to enjoy yourself and enjoy the beauty that is Ox Hunting Ranch. We stayed in a cabin on a little lake. The animals are free to roam throughout the cabin area so watching them get so close was incredible. The quiet that surrounds you at night is so relaxing. The Little He and I were able to just sit outside at night and spend some quality time together. We even did a little stargazing using an app on my phone.

I am glad we went. I am so grateful for all the people that helped us make this trip. Amanda the Big He’s caregiver was also a very instrumental part of this trip. She helped to make it possible. She made sure all the equipment was packed, she sat with the Big He in the back of the van to help as needed and worked to get the Big He settled each night and up each morning with his routines so I could spend some time with the Little He.

Amazing adventure. Memories made to last a lifetime.

All my love,

The She.

The Evolution of a Caregiver

In a few months we will mark 3 years since Alpha Lima Sierra entered our world. 3. YEARS. Where we started…where I started as a caregiver is quite different to where I am now and it will look crazy different in the future. The future…I pray daily that there is a future for me as a caregiver. I just have to say this, Isn’t it funny how I need to throw in that statement to clarify things. I don’t want anyone to misunderstand things. Maybe I should have a standard statement I use for every blog like:

Please don’t misinterpret what I say  because I know things could always be worse. I know there will be a time that I pray I could be a caregiver…I know my husband has a terminal disease. I know it doesn’t matter what I do or what I say, there will be guilt in the end.  I also know everyone’s journey is different. ALS impacts each PALs differently. ALS impacts each CALs differently. My relationship with my husband is different then someone else. We have different past experiences that have formed us, made us who we are. We express our fear and joy in different ways.  I will do me and you do you.  

Back to what I was saying, I am evolving as a caregiver. Before ALS I probably would not have felt the need to make a statement like that. The evolution of me includes some things I can say I am happy about like falling into advocate role and using it as a way to release all this negative energy and use it for good. There are some things that I am not happy about like the slight (the Big He would most likely question my use of the word “slight”) shift in my ability to deal with…stupid people. OMG I sound like the Big He!!! My patience is on a hair trigger these days. But it is what it is, this journey changes you. 

I am happy I can be an advocate for the Big He. I have grown so much in my advocacy efforts. I never knew how motivated I could be to get something done, until my husband’s life and well being was on the line. Where once I would let my head overrule that voice that would say, “wait, something doesn’t  feel right”, I now listen to that inner voice and use that to help guide me.  I never dreamed that I would have the desire to advocate for others with the same passion as I do for my husband but I do. I only want the best for other Veterans with ALS and their Caregivers. I want them to focus on the time they have and not fighting for equipment or services. The thing is, I enjoy doing this. I think this is another aspect of my evolution, to see that I can help the Big He and others at a time that I feel so helpless. In other words, I am embracing my control issues. I do know I have things to learn when it comes to advocacy work. My advocacy efforts are still evolving  and I am good with that. I know that surrounding myself with amazing, strong advocates that I look up to will make me better as I know I have a lot to learn.  

I am happy I can be a caregiver to the Big He. Is it tough? Yes. Do I always do things with a happy heart? No. When I am tired I get grumpy. When I get scared I cry. Being tired and being scared comes with the ALS territory but I am evolving. Things that use to scare me with the Big He’s care now doesn’t. I now know that when I am tired at the end of the day when the Big He gets settled in for bed he and I can both rest. I also know that there will be bigger and scarier things that will happen and I will learn what I need to and we will get through that too.

I am also evolving as the She in general. I can’t quite articulate exactly how, but I am. I feel it in how I react to different situations or to people. I see myself as a different version of the person I was before ALS not just advocacy and care giving but as a person. After the babies died I knew I changed. I became an angrier version of myself. The version I am evolving into now is someone that sees its what a person does not what they say that mean something. I put more stock into actions these days. While I like to think that before ALS I was my own person and didn’t care what people thought of me but now as I feel myself changing, I see that it really doesn’t matter what other’s think of me. What matters is what I think of myself. There are areas that still need evolving but I am good with that. I have no idea what version of me will be standing after this disease takes my beloved but I live by motto of Faith over Fear and know that my journey will lead me to the person I am supposed to be.

“Spiritual evolution is part of every soul’s destiny on Earth, and each soul grows and evolves at a different rate. You are right where you need to be.” James Van Praagh

All my love,

The She

Bora Bora-2016

The Big He’s update: Progression. It’s just the name of the game. I don’t know if progression seems to have speed up as much as we hit the tipping point of independence and dependence. That was a huge shift. The Big He has gotten weaker in several areas. His physical strength is limited. He is seeing paralysis in his hands and feet. His voice is weak and slurred to the point of frustration for everyone. I fear soon his voice will be gone but I am thankful we have a communication device and the Big He recorded many, many things in his natural voice. He also banked his voice so that is something to be thankful for. He can still eat and enjoy food so he is indulging on all his favorites. With Christmas around the corner we have had lots of baked goods which he is LOVING.

How YOU doing?

How many said that in Joey’s voice from Friends?

Seriously, “How are you doing” is a common question these days. I will be honest, for us that is kinda a trick question. Do you really want to know how we are or is it a question you ask because it is the polite thing to do? Most of you that know me (the she in the family), know that I am an open book.  I like to quote Popeye, “I am what I am”. So when you ask, I will tell you.

These days we are really just in survival mode. There is so much for us to wrap our minds around that it is very overwhelming. There is all the information given to us by the doctors regarding Alpha Lima Sierra on what to expect, drug trials, etc. The he’s military service may have had a part in this diagnosis as the rate of military members that are being diagnosed is at a higher rate than the general population (especially for those that served in the Desert Shield/Storm). In fact, the VA considers Alpha Lima Sierra a service connected disability. So there is now all the VA information we need to understand and digest. There are the things he is doing to ensure that the little he and I will always have his words to guide us and make sure we are taken care of and there are the hard medical things we need to get on top of before decisions need to be made. All of that and we must still maintain some normalcy in our home for our little he which includes things like work, school and baseball.

Do we have good moments/days, absolutely! But please don’t think that it means we are accepting of the situation or that we are just that strong. We don’t and we are not. It means, that we are having a good moment or a good day. Any strength we show is due to our love for each other, the support from our family/friends and our faith in the Lord.

Like I said above, I am an open book. While some things are hard to hear and many a tears are being shed (including ours), this is our new reality. It’s not always pretty, but it is what it is.

So how are we doing? We just got done with a good weekend. Good time spent with each other, the house kinda got clean and he did the laundry. So right now, we are good.

Love to you all,

The she.

Whisky Tango Foxtrot!

Yep, that’s right, WTF! That was really our first thoughts and I think I may have actually said it, when carpel tunnel syndrome turned out to be Alpha Lima Sierra. We are walking around in this fog of disbelief, grief, and anger. Oh, throw in confusion too. We have been trying to wrap our minds around what Alpha Lima Sierra means to our family, our marriage, our life. We know what the disease is, what it will do but what does it mean for us.

It means our world has once again been knocked off its axis. When we experienced the loss of our twin daughters in 2000 and the loss of first son in 2001 our world tilted. It is now even more catawampus. We know the grief path and know how hard it is.  We will have to learn to live in this new world of ours. Which right now is kinda hard. I know we will figure this out. Our goal is to LIVE and ENJOY the time we have as a family.

It means in our new world we will find love and laughter in the small things (and most likely the inappropriate things) and will find them daily. That’s just how we have always rolled. I have noticed the minutes we are together are more precious and the time apart is so hard. Let’s face it, Alpha Lima Sierra is the kind of disease that you know when the moment has gone it has gone. No do overs. So why waste a moment. Our family has always been the most important thing, but now we show this by our actions and not just our words. We don’t let the day to day crap take us from what is important. We see this in our little he as well. He has always been a caring kid, but now he takes time to send us sweet text messages like “I love you” instead of the “Can I get on Xbox now?”.

It means in our new world our walk with God has strengthened in ways we could not have imagined before. For our whole family. Knowing God is us watching over us, Jesus is walking beside us and the Holy Spirit is within us keeping the darkness away gives our family the peace we need to face this. We know we are not alone in this because He is with us. Now, let me just put it out there, we are scared and we do ask why and how can this be. But it is in the same breath we ask for His comfort and peace.

It means in our new world we are focused on doing all those things we have dreamed of doing and making all the memories we can NOW. We are not just thinking of bucket list items we fully plan on crossing them off. Trey is adding to the list as well. There is no more “when we retire” or “when our son is in college”. We are doing now.

So what does all  this mean to us. It means we are going to LIVE and ENJOY life NOW.