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

Struggle Bus

Riding the Struggle Bus
Photo by João Jesus on Pexels.com

This morning, it was the whining of one of the dogs that woke me. It was time to wake up and start the day, at least for them. Before I could let the puppers out, the Big He needed to be suctioned. Once the Big He was taken care of, the dogs were let out and a big cup of coffee in one of my favorite mugs, my Red Hidden Heroes, was made. Walking back to the bedroom my eyes are immediately fixed on the Big He to ensure he wasn’t in any distress, which thankfully he wasn’t. He was just reading the morning news and checking on his investments. This is how our first 15 minutes of our morning starts, hopefully. As I wait for caregiver B to arrive, my mind starts spinning with the things that need to happen today which started with a call to our VA nurse case manager to follow up on a concern I have regarding obtaining physical therapy. Once B arrives, we remove pillows that support the Big He, switch ventilators, remove the feeding tube, move the communication device, grab the motorized ceiling Hoyer and move him to the shower chair so he can use the bathroom. Once done, we reverse what we just did to get him back to bed and in a comfortable position.

At this point, B starts the rest of the morning routine like breathing treatments, crushing meds, getting food and water loaded into the feeding pump, and trache care. I will typically go check on the Little He, grab another cup of coffee and stand in the middle of the kitchen and try to figure out what is next. This is where I struggle. There is NEVER a lack of things to do but still most days I cannot do what needs to be done. The Big He is physically paralyzed and I am mentally paralyzed. Fear. Anxiety. Depression. They all play a part. It’s worse if I have had little sleep or if the Big He is having a hard time. My mental and emotional health is on a never-ending roller coaster ride. I try and hold it together for the Big He and the Little He but there are days. Days that I am only functional enough to do caregiving duties, but I am of little real use to them or myself. There are days that I choose to just sit on the couch over taking a shower. There are days I can’t find the energy to call or text someone back. Some days I look around the house and see the mess but I honestly don’t care. Then my mind races to the fact I should care or the thought of how I should have the house clean just in case…just in case we need EMS to come in or what if he dies and a host of people will be flooding the house. Of course, those thoughts are quickly replaced with “Fuck it”. So I go back to staring at the blank TV, watching the dogs just be dogs, or mindlessly watching TikTok until I am called to help the Big He out. My energy is reserved for the Big He. That is what being a caregiver to someone that needs total care is your life melts from one crisis to another, one breathing treatment to another, one load of laundry to another until you realize that there are days that you live your life on the struggle bus and you come to accept it because that is what being a caregiver to someone that needs total care is about.

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

How do I say…

I have tried so many times in the past six months to do a post, but every time I start to write, I delete, delete, delete. It has more to do with how best to paint the picture of living an ALS life to you. I have tried to be authentic. To articulate the daily struggle that ALS brings. As I write, I find how sad my words are and so I delete. I started this blog to share the journey but as the disease progresses and the journey gets harder so does my ability to show you behind the curtain. So I struggle with how to say things are hard, ugly and sometimes heartbreaking. Don’t get me wrong, it’s not hard all the time, but a good part of the time.

May is Month of the Military Caregiver and I am going to be better at sharing. If only for a month. So, my question is are you ready to hear the hard stuff?

All my love,

The She

The Best Laid Plans

This time last year, I was in Washington D.C. taking part in a week long event hosted by the Elizabeth Dole Foundation. This week long event included a Gala so I was able to dress up, put a little makeup on and go mingle with other caregivers and those that support us. It was so much fun. I so enjoy meeting new people and chatting them up.

As with everything in 2020, COVID has required everyone to do events virtually. I am actually good with this. Long before COVID, ALS put a stop to getting out. The Big He is not all that mobile these days. It’s uncomfortable for him to be in his wheelchair for any length of time so we spend our days in the master bedroom. The formal gala that I attended last year is virtual this year. So for us, watching in the comfort of our bedroom is just fine. I did however have the best plans for us to dress up to include our paid caregiver M as well as the puppers. Lou even has a new bow tie. You notice I said ‘plans to dress up’ right?

This morning Lou woke me up and the Big He was staring at me. It turns out his communication device stopped and he had been unable to get my attention since 3 a.m.(with his trache he no longer makes any noises and since he is paralyzed, he couldn’t do anything but lay there) to help him. We often wake up multiple times a night because he needs to be suctioned. He did have multiple times he needed suctioning that some how he was able to resolve but also had to deal with panic attacks because his inability to get me. I spent the morning beating my self up. Why? The guilt attached with not being able to meet his needs has been overwhelming. I can handle the Big He’s anger and frustration that is generously given but what I can’t handle is knowing that he experienced fear and helplessness.

The issue has been resolved. His computer is working without any issues and I have set up a switch/alarm system next to his head that he can use since he does have some movement in his head and neck. As the evening has approached I find I just don’t have it in me to get dressed up. My heart is sad. I know I am only human as a few caregivers in my caregiver tribe reminded me. This morning, I was the Big He’s wife. The woman who loves him dearly and would do anything to protect him, to make him comfortable and safe. This morning, as his wife I did not do that. He however has been amazing and loving. He has reminded me all day how much he loves me and that he understands I am only human.

So since my plan to have a fancy dress up night will not happen, here are some photos of the event from last year.

All my love,

The She

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

You is kind, You is smart, You is important and You is loved

Tonight is the Little He’s Birthday Eve. Tomorrow at 12:51 pm, our boy will officially celebrate his 18th Birthday. First, I still am not sure exactly how he grew up so fast. I mean, I clearly remember bringing him home from the hospital not that long ago. Of course, he came home 104 days after his birth. How crazy is that? His original due date was December 12th but he just couldn’t wait to meet us and came August 30.

This time 18 years ago I had already spent a week in the hospital on bedrest. I have a problem carrying babies. I have what is called an incompetent cervix. How much you wanna bet, some dude came up with that name? This time 18 years ago, I knew something was wrong. I knew there was a problem with the pregnancy but the doctors and nurses insisted nothing was wrong. There was nothing for me to be worried about. But still…

That little voice that spoke to my heart was right. Something was wrong. In the early morning of August 30 my water broke. Within an hour or so, the Big He and I were transported to a larger hospital with a higher level NICU. Roughly six hours after my water broke, our tiny 24 week preemie was born by emergency C-section. He made a little kitten sound, ensuring us he had been born alive. That little guy had a tough few months. He had to have three surgeries during his NICU stay. He had ups and downs but surprised everyone with how healthy he seemed despite his early arrival. That amazing strong boy has been surprising us every day since. He never developed any of the disabilities that could have developed due to his early arrival. He has grown into an amazing young man. He truly has a kind soul. He has amazing people skills and is so dang funny.

He has surprised his Dad and I on how he has adapted to this ALS life. It is not easy and makes being a teenager more difficult due to the responsibilities that have been thrust upon his young shoulders. He has taken over the household chores his Dad had been doing. He always seems to know when his Dad or I need a little extra love and the best part, he doesn’t mind showing it to us. He is not one to follow the crowd but paves his own path and doesn’t really mind what other’s have to say about it. What a great trait to carry him through his adult years.

Tomorrow, despite ALS and a global pandemic, we will celebrate our amazing boy. I was thinking this evening that while as parents, we try and raise amazing kids to be happy, healthy productive members of society we as parents, actually learn from them as much as they from us. I have learned to trust that voice that talks to my heart. I have learned that in the moments when I question if the Big He and I have done everything we could for our boy in raising him right, all we have to do is look at him. The answer is without a doubt, yes.

Despite being born 16 weeks too soon, enduring 3 surgeries in 3 months, and learning at 14 yrs old that his Dad had ALS, he has shown us how amazing, kind and loving he is.

Happiest of Birthdays sweet boy.

All my love,

The She