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

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

This Caregiver’s Project-Project Me

Caregivers are not perfect. They are not Superheroes (but we like to play them from time to time) or Angels (well maybe some of us but we slide back and forth between wings and horns). The millions of unpaid caregivers in the U.S. are just ordinary people doing what needs to be done for their loved one or friend. It is love that makes us do what we do. We make mistakes. We are not always on our “game”. This can be due to stress, exhaustion from lack of sleep, illness or injury, depression…the list goes on. The caregiver can also lose themselves in their care recipient. When you give yourself to care for another person there is little left for you.

Disclaimer: This post was not intended for the public, it started as a journal entry. I am not sharing for sympathy nor am I sharing to elicit affirmations. This is me being honest. Me hoping that if just one family caregiver sees this and takes something away it was worth sharing.

As we ease out of crisis mode and into living this new life, I have lost me. I spend my days taking care of the Big He, Little He, Dogs, House and that is when I can drag my butt off the bed or chair and focus long enough to get things done. Some days I feel like I am just putting band aids on problems and other days I can only tackle one thing. Many days I sit and mindlessly read my social media accounts. My head tells me I am being lazy, my body tells me it has hit a wall. Every day my needs are left for last. I often forget to take my meds and have put off every doctor’s appointment that should have been made in early 2019 to now. If I do take any time away for me, which usually means a quick errand, the guilt I have is so heavy that it is easier to just come back home. The one area of my life that I have maintained is the twice a month appointments to my mental health therapist…who I lovingly refer to as my crazy doctor. Guilt is a common topic as is my need to make sure everyone has what they need. People pleaser has been a term that has come up many times. Maybe people is the wrong term, family pleaser. Yep that’s better. I want to please my family. All of this has led to you guessed it, me not really knowing who the hell I am.

I have one of those fancy planners that you can buy stickers and use to make them look pretty. There was a sticker that talked about using the week to cultivate: my social, spiritual, emotional, intellectual and physical aspects of my life. I stared at that damn sticker for days and it hit me, I had nothing to add to this. I take that back, I have started to do guided meditation thanks to a very smart person I have in my life…you know who you are MHW. She started me on guided meditation and the idea of being present in my life. She is also the person that tells me to “get over that guilt shit”. In my defense she has been doing this caregiver life longer than me. It turns out she is letting me cheat off her and learn from her mistakes as a caregiver.

This has been very overwhelming and I will admit I feel a bit overwhelmed. I want to correct all of this right now. Oh, did I mention that also in my therapy sessions we talk a lot about my control issues? I know it will take me some time to first figure out how to cultivate the different areas of my life and second to not feel guilty. I like projects. My new one is that I am going to work on me.

It’s funny, well not haha funny but more like hmmmm funny… I have referred to myself as a widow in training. When I first said that it was because I was having to do all those things that the Big He did for me. Get gas, know when the oil needed changing…and not ignore the oil light, fix stuff around the house…stuff like that. I now look at it as I need to find who I am absent of the Big He. So, from time to time I will keep you updated on Project Me as I learn to navigate as a caregiver that gives her everything to her husband, her son and as important herself.

All my love,

The She

What do you think about…

What do you think about when you hear about families with ALS? Bucket list adventures? Advocacy? Awareness? Fundraisers?

Want to add something to those thoughts? How about this picture…

It is 5:00 am. I’ve been up since 3:30 am. Why? Well around 3:30, the Big He called out to me that he needed suctioning. I went from sleeping to suctioning to doing a cough assist all within 2 mins. After he was able to breathe better, he closed his eyes and drifted back to sleep…sort of. He sleeps very light these days. Me…well I cleaned the equipment, took off my gloves, washed my hands and headed back to bed…but didn’t drift back to sleep. I’ve suctioned him three more times. So, now its 5 in the morning and I am watching him sleep..sort of and thinking if this is what people not living an ALS life think about when they think about ALS.

Something else…do you notice the distance to the Big He? I now sleep in a twin bed about 3 feet from his hospital bed. We’ve been married 29+ years. Do you think about this?

Have you thought about the fact that I’ve been up since 3:30 and soon the day will get going. I will be caring for the Big He all day. This is not a once in awhile thing….this is like an every day thing. Little sleep. No days off.

Am I complaining…nope. Just trying to provide you with something more to think about when you think about ALS. pALS and cALS don’t think about this, we live it. Daily.

If more doctors, researchers and elected officials lived this ALS life, would there be a management or cure for this disease? That’s something I think about.

Until next time.

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

Heroes and History Makers-Gala

Amazing. Beautiful. Energizing. Heartfelt. All words to express my thoughts on the Elizabeth Dole Foundation’s Gala. I have one more but will save that for later.

The Gala is not only the Foundation’s fundraising event but also a chance to spotlight caregivers the Foundation supports as well as those sponsors that help support the Foundation. It was beyond my expectations in many ways but more importantly I underestimated how this event would make me feel or how the Gala would fill me with gratitude.

Let’s get some of the initial thoughts out of the way…First, who doesn’t like putting a fancy dress on and going to a good party-This girl definitely does. Second, the ability to be in the same room with the Doles, Tom Hanks, Rita Wilson and of course Michelle Obama was so very exciting. Third, meeting the sponsors and donors that help the Foundation carry out its mission gave me along with the other Fellows our ability to show our appreciation.

Just how did this event fill me with gratitude? Well, I had been keeping a secret for several weeks leading up to the event that was shared that night by non other than Tom Hanks. The Foundation launched a new campaign called the Tom Hanks’ Caregiving Champion. When you join this campaign, you are given a Caring Tag. The Caring Tag is inscribed with the name of a military caregiver, along with their family’s story. The tag is a symbolic token of the support you will provide to the 5.5+ million military and veteran caregivers nationwide.

Drum roll….I was asked to be the first caregiver identified on the caring tag. The Big He is mentioned as well as my veteran/spouse. Tom Hanks introduced the new campaign along with our story. The words, service connected ALS, were mentioned in a room of close to 1000 people, many were hearing it for the first time. The awareness that occurred in a moment was more than I could have ever dreamed. From the onset of the Big He’s diagnosis, our family has been determined to bring awareness to the veteran/ALS connection. Awareness for a terminal disease is often hard because many people would rather have a tooth pulled without meds than hear about death and dying. This very topic is common place for people with ALS.

What is also important is that, Service connected ALS, was mentioned in a community of disabled veterans and their caregivers. There are pretty good odds that some in that room will be diagnosed with this disease in the future. Those veterans that have served since 911, have combat related injuries have the same high chance of being diagnosed with ALS. This is why it is so important to spread awareness. While there is no cure, one is coming. With awareness and advocacy we are helping to ensure consistent care by the VA.

While in DC I went to Capitol Hill to make my “asks” to elected officials. Today, I ask you to be a Caregiving Champion. You can donate here: https://hiddenheroes.org/caregiver-champions/donate/

As a token of appreciation you will get a caregiver tag with my family on it. I ask you hold it or put it someplace where you will see it. Think of my family and the thousands like us and know that you are part of the awareness and advocacy that the Big He and I want very much to spread.

Can you find yours truly? Who else can you find? Yes, I was that close to them.
My partner in ALS advocacy and awareness-Mary Hahn Ward. Her husband and Marine veteran has ALS. I look to Mary not only as a mentor and friend but a sister as well.

All my love,

The She

EDF Fellows on the Hill

If you haven’t been following our FB page, Tom’s Troops, then you probably don’t know that this week I am in Washington DC. I am here on behalf of the Elizabeth Dole Foundation as a current Fellow representing Texas. Yesterday was day two of the trip and an exciting one at that. I along with a Texas alumni Fellow, we visted with some of our elected officials. In fact, we were able to have coffee with Sen Cruz, shake the hand of Rep Crenshaw and chat with his office about issues near and dear to our hearts and have a great conversation with the office of Rep Carter. We had the opportunity to discuss the amazing work the EDF is doing but also discuss those issues that impact us as caregivers.

Many still have no idea about the veteran and ALS connection or the impact it takes on the veteran…on the family This is why it is so very important to climb out of my comfort zone and speak about this terminal disease. Everyone I spoke with was unaware of the connection but were supportive and understood the need to increase awareness and funding.

The word about not only ALS but the veteran connection is getting out. There is now an ALS Caucus which is a huge step in getting the funding and awareness. We all need to use our voice. So help us and spread the word about ALS and the veteran connection.

I will post more about the amazing experiences this week has provided but I must go for now. I have the Heroes and Histoy Makers Gala to get ready for.

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.

Faithfully-2019

Before the day ends, can I tell you something? Today, the Big He and I celebrated our 29th Wedding Anniversary. It looked really different than anniversaries past except for the immense love we have for each other and our traditional anniversary meal.

In our youth we celebrated big, with flowers and dinner and grand gestures. In our youth we thought we had forever. As we journey deeper into our ALS life, our needs and those things that fill our hearts are simplified. This view of things is apparent in our marriage. We don’t need the grand gestures anymore. We don’t need small gestures either. We just need love. That one great love. True love. Romantic love. Friendship love. Unconditional love. Love that changes as we grow, love that empowers us, and love that keeps us going.

At the end of the day or the end of our life, it is love that matters.

The pictures above were taken just before the Big He entered the Air Force. We had only been dating for about a month or so but by the time these pictures were taken (September 1989) we had already professed our love for each other.

Happy Anniversary Sweetheart! I love you more.

All my love,

The She