Story Time-Our Wedding Day

The Big He and I get to celebrate our anniversary for two days. I know, you are asking yourself, how is that possible. Well, 31 years ago, we eloped on the island of Guam, which is a day ahead of the US. Guam was the Big He’s first Duty Station. We had planned for me to visit for the summer of 1990 and would marry later in the year. Well, as with any good love story between two very young kids, fate had us marry earlier than we thought.

A few days after my last college final in May 1990, I was on a plane to visit the Big He on the island of Guam. I had a return ticket for the first part of August. I would have two whole months, sixty consecutive days to be with him. By this point in our relationship we may have had a total of 45 days we were physically together and keep in mind they were not consecutive.  Let me just say, I had the best time with him on the island. I was, for the first time in my life, off on my own-okay I was with the Big He but it still counts. I was on a tropical island with the most gorgeous man AND he was in a uniform. Who knew I had a thing for smart-ass and uniforms. In mid-July, the Big He was preparing to go off island for an exercise. He would be gone for 30 days. We had only two choices for what I could do. I could go home early or stay. So, we got married July 30th, 1990 which was about one year after we went on our first date. I was twenty years old and he was twenty-one. I had no job and only 2 years of college under my belt. He was just an Airman First Class and on the day we married, he had negative $80 in the bank. He had bounced a check for a microwave of all things. Of course a bounced check could not stop love!

You would think finding out you were negative $80.00 would be the worst thing that could happen on your wedding day…it wasn’t. You ready? Here is the story…

We had arranged for two friends of the Big He to come with us to be witnesses and also because one of them had a vehicle to get us to the Justice of the Peace (JP). There was actually five people in the vehicle that went that day. At the JP’s office, we did have to wait a litte bit. In those minutes before our time to get hitched, my stomach was a ball of nerves. The Big He and I could barely look at each other. I knew I wanted to get married, but man was I scared. Standing in front of the JP and looking into the beautiful green eye’s of my future husband, the best I could mumble when asked if “I take him to be my…” was not “I do” but “Yea”. WTH??? Such a romantic and traditional way to express my desire to cheris this man for richer or poorer or in sickness and in health. The look on his face…he has yet to let me live that down.

After the ceremony, which there are zero pictures, we headed to McDonalds because everyone was hungry. Remember I said the Big He had bounced a check…yep no money to eat. After McDonalds we headed back to Base. On our way back, we were pulled over because the driver was speeding. After getting a ticket, we took off once again towards Base. About a mile down the road, we had blowout. Not a big deal until we realized there wasn’t a spare. The blowout occured on a back road to Base and in the middle of no-where. There was however a small house on the edge of the boonies or jungle line. I was voluntold to go knock on the door and ask to call the Law Enforcement Desk. Oh, hey, did I mention that all the people in the truck were cops but I was the one that was supposed to knock on a stranger’s door for help. One of our brave USAF LE’s did come with me and the LE Desk would be sending a patrol car to come get us and sending a tow truck as well.

As we waited in typical tropical island weather, we had on again, off again rain events. Y’all know I have naturally curly hair right? It does not do well in hot, rainy, humid weather. The tow truck was the first to arrive. My new husband and our friend Daryl, my man-of-honor, jumped in the truck and off they went to Base. Yes, if you are asking yourself, did she say new husband left with Daryl, that would be correct. I was left alone on the side of the road with two people, none of which were not my new husband! The two LE’s decided it was probably a good idea to start walking back to Base in hopes the patrol car would get to us soon. Yep, that didn’t work out very good. The patrol went out the wrong gate which took him around the island before he caught up with us…only a few miles from Base at this point.

Once back on Base, we were dropped off at the dorms, where my new husband was waiting for me, freshly showered and I swear he took a nap cause he look rested. Me on the other hand, had wild crazy curly hair, sweaty and my pretty white heals were worn flat from walking on the road which had a coral base to it. Once I freshened up, we went to have a wedding dinner at the NCO club…cause we had no money and he knew if he took me to the Mac T I would kill him. The only thing left that late in the evening was steak, potatoe and salad. They also had a few slices of cheesecake for dessert so that was our meal. One we have eaten every year since. Steak, potatoe, salad and cheesecake for dessert.

The day wasn’t picture perfect but that is not really what a marriage is about is it? It’s about the people. We actually laughed most of the day and night about what had transpired. The Big he and I have always found reason’s to laugh. We just love being with each other and truly enjoy each other’s company.

Since it is already July 30th in Guam, I am taking the opportunity to wish my beloved a Happy Anniversary. Love you more!

All my love,

The She

white and brown wooden tiles

Anxiety and Fear

white and brown wooden tiles
Photo by Suzy Hazelwood on Pexels.com

After the Big He received his trache and went on a ventilator, severe anxiety and fear were two things that became a constant with him. It was something that I had not seen in our years of marriage. Yes, I had seen him anxious at times and when we lost the babies, there was fear but this is different. This level of anxiety and fear is all consuming and here is the hard part to admit…it has changed him. This is where trust and love play a huge role in our relationship now. The fear and anxiety are often seen as anger and rage. It has been hard to see and live with such intense emotions. I have never been on the receiving end of the Big He’s anger and now I have to constantly tell myself he is not angry or raging but it is the disease causing this. Some days I can easily see the difference and some days it all blurs and his words and actions break me. Rage is actually something that is new to me. It was only after talking with other caregivers that I began to understand that the emotion I was seeing from the Big He was anger on steroids, it was full on rage.

See, this is a side of the disease that I, like many of my caregiving brothers and sisters, only discuss between us and only with those that we see as safe. For me, when I do talk about this with my ALS and veteran caregiver friends, I do so knowing they do not judge. They understand how the person you married becomes someone else. This is actually pretty common with not only ALS caregivers but those that care for veterans. While my husband is considered a pre-911 veteran with a service connected disease, many of my post-911 caregiver friends have experienced the same. Maybe not from the place the Big He is coming from but from their veteran’s invisible wounds like TBI’s or PTSD.

This is the part of caregiving most people don’t even think about. Seriously, when you hear of caregiving do you think of the emotional aspect? You probably think of the making meals or helping with personal care. There are just so many facets to this life which is why I am opening myself up to help bring awareness to not just the caregiving to someone with ALS but those that help our nations wounded and ill.

I can tell you that when the Big He is angry with me, which happens more and more for all sorts of reasons, I find my mood changes. I don’t like my husband to be mad at me. I sometimes walk on egg shells and sometimes I just stay away and get lost in binge watching Netflix. Luckily his angry moods don’t last too long and before I know it he is back to the man I have grown up with, the man I love. Anxiety and fear fade away because of trust and love. So that is what I hold on too as we navigate this later stage of the disease, trust and love.

All my love,

The She

T is for Trust

Trust and Love

There are so many layers to caregiving. These layers include the relationship we have to the care recipient, the physical aspect of the care, and the emotional and mental impact that caregiving takes. The base of all these layers needs to be strong to support the heavy load that caregiving can bring. While early on in my caregiving life I would say without question, love was where the strength to our foundation came from, but now I think it is trust and love. Can you love someone without first trusting them? After the Big He was put on the ventilator I would tease him that I was his Boppy. That was the term we used for the Little He’s security blanket when he was a baby. This was because when the Big He would get anxious or scared, he would want me close. I was becoming his security blanket. He trusts me and knew if I was there I would protect him with everything I can. Even on days when I am not his favorite person, he still trusts me. He trusts me to ensure every aspect of his life runs smoothly. Heck, sometimes he trusts me so much he thinks I can read his mind. For this post, I wanted to start with the foundation for our caregiving journey. As I post throughout this month you will understand that even when an ugly layer of this journey is exposed, you see it for what it is, just a layer and it is in those moments we rely on our strong foundation.

All my love,

The She

Twofer

In the advocacy world, May is a twofer for veterans with ALS. Not only is May the month of the military caregiver but it is also ALS awareness month. Lucky us, right?! This month I am going to do my best to share with you the real story. Not the one I polish just enough for prime time or where I use humor to soften the blow of what living an ALS life looks like from the perspective of the wife and caregiver.

As I pull back the curtain, let me give you the highlights of the last six months to show you what has been going on:

November 2020-As if dealing with ALS and Covid wasn’t enough, the Big He developed a kidney stone which sent us to the emergency room due to the pain.

December 2020-The pesky kidney stone was still causing problems so we went back to the emergency room where an MRI showed the stone had not moved. The Big He was admitted to the ICU because that is the place you put people on ventilators. The ICU has several pods and we were placed in the one that did not have active Covid patients. The Big He had a procedure to remove the stone which went well until he developed sepsis. He got sick, like really sick. It scared me. It scared him once he came back to the living and was able to understand exactly how sick he had gotten. Two days after the scariest part of the sepsis we were sent home. Not because he re-bounded so well, but because we needed to get out due to the increasing Covid cases.

January 2021-The Big He developed pneumonia. We were on it very earlier and were able to avoid a hospital visit but it was pneumonia and he already has a weakened immune and respiratory system so it was another scary moment.

February 2021-Winter came and she was called SNOVID. Texas was hit hard. We did good regarding electricity because in early Fall 2020 I had a natural gas whole house generator installed as a “just in case”. Never in my wildest dreams (and I have a crazy imagination) did I consider losing power to winter. Our part of Texas does not have a real winter. It may get cold for a day or two but not multiple winter storms in a row. We had to get help from neighbors to ensure we had enough distilled water for the Big He’s humidifier that is part of his ventilator circuit. The paid caregiver help we use, for the most part, could not get to us except for a few days and only for a few hours. So the Little He and I were it. Emergency services were limited and no guarantee they could get to us if something did happen. I spent my days and nights scared. Scared something would happen that I would not be able to handle.

March 2021-This was the month of the broken down caregiver. During March I had to go to the ER due to fever (101 plus) and belly pain. My trip to the ER could not happen until the Big He’s care was covered. Luckily this all happened on a night that we would have skilled care. After five hours in the ER I was released. I had developed acute diverticulitis. WTH??? It took two good days for me to feel well enough to start really helping with the Big He again. The infection took me down hard! Maybe two weeks after the ER visit, I made another ER visit. This time because I had sliced my wrist while doing dishes. Four staples and helluva lot of pain, I was home. The paid caregivers had to really step up along with the Big He to allow me the chance to let my wrist heal…you know so I didn’t pull any staples out. Which did happen. Well not out but one staple was so twisted I had to remove it just a few days after it was placed.

April came and went without issue, well not huge like the previous months. I did realize though that the past several months had really traumatized me in the sense that I am not as prepared as I thought I was. That you can “what if” and prepare all you want and you are really not ready for what life throws at you.

All my love,

The She

A little puppy love

As the morning is starting, the dogs are ruff-housing on the floor and on my bed. The play seemed to change when the wrestling shifted to the Big He’s bed. Lou the service dog called a time out to get some one on one time with the Big He. Not to be left out, Remi also got herself some Big He cuddles.

Lou and the Big He
Remi and the Big He

Happy National Puppy Day

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.

Paralyzed. Trached. Now what?

Most everyone knows by now that the first part of 2019 SUCKED for our family. The Big He had a cold in January which started us off to a really crappy new year. All said and done over 40 days spent in ICU.

The insult to his body after all of this was an increase in the progression of this cruel disease. Where prior to the cold he could stand and transfer on his own, he no longer can. He was able to use his left hand and arm and now he is paralyzed. He was eating and drinking and now he is fed through a tube in his stomach. The fear of how the Big He would adjust was like a thick cloud in the house. He was quick to anger and wanted to do nothing but lay in bed. It was almost 2 weeks after he got home that he had the motivation and energy to get out of bed. Since then he is now out of bed several times a day, gets in his wheelchair and we have even made it out of the house.

But now what?

Well, let me tell you. The Big He has been learning and playing with new software on his surface pro with eye-gaze technology. He is learning Photoshop and Light Room. He is taking all the pictures from our post diagnosis bucket list trips and playing with them more.

All of this to say, I am totally going to brag on my amazing husband. He has pulled himself through the muck of pneumonia, trach surgery and sepsis and is finding his happy (besides the Little He and I) which is Photography.

He has always loved photography but with work, family and the million things that need to be done he never was able to find the time. That is until the diagnosis. He got himself a new camera and we began our Bucket List adventures. Our adventures have taken us to Washington DC, Bora Bora, Tahiti, Hawaii, Colorado, New Mexico and of course all over Texas. We will be able to use these beautiful pictures as a way to remember.

You can now find some of his photos on Fine Art America.com

These pictures mean more than just a wonderful adventure. They were edited by the Big He using only his eyes. Since he is still getting comfortable using the eye-gaze the time it takes him to work on a photo is lengthy. These photos are the beginning of a new Chapter. He is working with his cousin to get his camera mounted to the wheelchair so he an operate it hands free. We will continue to be able to see the world through the Big He’s eyes which will keep our memories alive forever.

April 2019

All my love,

The She