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

Live In Color

I am so excited to be included in the company of some amazing women, all who have been nominated or selected by Consuela as one of their Viva Babes. Consuela has a program called ‘Its not about the bag’ which celebrates women who impact the world in positive ways through their service, strength, kindness, tenacity and love.

Live In Color

Before I needed to take an extended leave from work to care for the Big He, I use to work across the street from their store in Austin, Texas. In fact, my office faced Congress Ave and had a great view of the pink door that opens into a very happy place. When this ALS life would get too much and I need to escape, I would escape inside their store. I may have on more than one occasion purchased a bag or two or three. I guess you could say I started to do Consuela retail therapy. What can I say, they make me happy.

While it is sometimes hard to think of what I do as something to be celebrated because this is not a path I would have ever chosen. The Big He and I decided shortly after the ALS diagnosis that since we had little, real impact on finding a cure for this disease we would do what we could to ensure Veterans and their families in our little corner of the world could spend what time they had making memories and not fighting the VA for equipment and services. This advocacy effort led me to the Hidden Hero’s Community and ultimately being selected as a Dole Fellow.

While no one would ever choose this path, I am glad I can be a voice for Veteran’s with ALS as well as military caregivers.

All my love,

The She

In a moment…

The last four days have been busy, tiring, and frustrating. Our caregiver A had to take a few days off, leaving me to be the only caregiver for the Big He. The Little He is here and there is help for household things but the hands on care of the Big He is done by me.

Many, many ALS caregivers go it alone and God Bless them because it can be overwhelming at times to be THE person responsible for careing for a loved one. Especially when things don’t run smoothly. For example, the Big He can no longer stand or walk on his own. We use a ceiling mounted lift to get him from the bed to the bathroom. The lift went out just before caregiver A was to be gone for two and half days. So moving him would now need to be with a portable hoyer lift. We have one as a backup which I am so glad we had. The first day alone, the battery went dead just as I had the Big He in mid lift off the bed. In my head I was thinking, holy crap..WTH do I do now. Out loud I reminded The Big He how much he loved me. I was able to get him lowered, charge the battery just enough to accomplish our needs and get him settled back in bed. Now, just so you know, to get him out of bed I had to pull all pillows off the bed, pull off foot board, position the bed so I could roll him side to side to get the sling under him, disconnect his feeding tube, change him over to a portable ventilator, disconnect the suction line and get it moved to the bathroom in case we needed it, get the bathroom prepared, line the Hoyer up and then hook him up and start the transfer. When things are done, the whole routine is done again but backwards. Start to finish, it took almost an hour from the time the first pillow came off the bed to the last pillow situated for his comfort. In between there were little stressors like the battery issue, getting his hose hung up and needing to go grab the cough assist. He blew me a kiss once he was settled back in bed and in a moment my world was calm and all was good.

It takes just a moment for something to jerk us back to what is important. It takes just a moment for us to remember why we do what we do.

Yesterday the Big He asked me to push the twin bed I now sleep in next to his hospital bed. It’s not a simple thing mainly because we need access to both sides of his hospital bed but I did it anyway. We went to sleep last night together in our pretend king size bed. All day I have been moving the bed apart and back together as I care for him. This evening he kept pointing to his hand for me to hold. So I pulled my pillow close to his and held his hand. In a moment, the stress melted away as we held hands and my heart remembered this feeling. Snuggled close, holding hands and just being together. I am so incredibly blessed to have met the Big He and spend my life with him. I know what we have is truly special…and in this moment I thank God for my life. As hard as this season of it is, I have my husband and I will take every moment I can get.

All my love,

The She

Good for the soul

Last week I had the opportunity to attend the Indianapolis Hidden Heros/Today Show event. The Elizabeth Dole Foundation (EDF) and its Hidden Heros Campaign were featured on the Today Morning Show. The show dedicated a whole hour to military caregivers. Caregivers for veterans of all eras were brought together for what they had in common. They were brought together because they love and care for wounded, ill or disabled veterans. I mentioned to another Dole Fellow that I was having a hard time putting into words exactly what being with these people meant and she hit the nail on the head when she said, “it has been good for the soul.”  She was so right and as I reflect on last weeks trip (and talk it over with my  therapist) I realize that I was actually unaware of how that part that makes me, me, had been drained. The stress of this disease, the fear of my future alone without the love of my life and the realization I need something of my own and not just be seen as the Big He’s caregiver had drained me. Who knew a crazy, busy two days would actually fill my soul.

The first full day in Indy was a busy one. There was a luncheon at one location followed by art therapy and dinner at another location. This was my first event as a Fellow and my first real trip since the diagnosis that I have done without the Big He. For this trip, I had two goals I had set for myself. I wanted to meet and connect with as many people as possible and step out of my comfort zone and just be…alone. I think if I was to follow my old habits I would have stayed close to the few caregivers that I knew through Facebook (and I did a few times) but I also ventured out and struck up conversations with other folks as well. Guess what, I survived and I met some amazing people who have been through their own extremely stressful time. Some still are, some are finding comfort in rehabilitation and a new normal and some know that their life will continue to be guided by the visible and invisible wounds their warrior suffers from. Everyone’s journey is different but we all share the same feelings of fear, anxiety, being overwhelmed and a since of loss for ourselves and for those we care for. As I spoke to folks I found that it wasn’t really like talking with strangers it was more like talking with family I just hadn’t met yet and trust me, I come from a big Italian family and there are cousins I have never met. I am sure if I did run into them, it would be the same, the sharing of a bond that cannot be broken.  We are caregivers of disabled veterans. 

While there were plenty of smiles, I did have a few moments where the sadness crept in and over came me. I saw families. Husbands and wives, fathers and sons and daughters. It seemed as if everyone had their veteran with them and I did not. So, like the problem solver that I am, I video chatted with him and let him just watch and take the excitement in. The evening was made more special sharing this with him. While I was showing him the room I was able to point out the amazing Senator Dole along with Savannah Guthrie and Tom Hanks. It just so happened that while I was sharing the excitement of the day with the Big He, a Today Show camera and producer caught me and soon Tom Hanks was video chatting with my veteran. How cool is that. While the Big He could not physically be there, he was there and could be a part of the festivities. Technology can be a headache sometimes but in this case it was a blessing. 

Meeting and connecting with other caregivers and experiencing the event with the Big He had my mind on over drive by the evening. Once we got back to the hotel, I couldn’t sleep so I figured I would accomplish my second goal which was to do something that included a party of one. I went to the hotel bar, something I would have never, ever done before. I needed to prove to myself I could sit by myself, at a bar, and survive. I know that may sound silly to some but I have never really done anything alone. I am the youngest of four, I went from my parents home to married to the Big He. Being alone is something I have never had to do. Knowing the end game for this disease, I know I will be alone. Yes, I will have family and friends and of course the Little He, but after some time, everyone will fade into the shadows and go back to their own lives, and I will be alone. Doing something simple like having a drink by myself was practice for when the Big He passes. I think of it as I am a widow in training. 

The trip concluded with the filming of the Today Show. Even with thunderstorms outside the excitement in the room as we took part in the show was as energetic as the lightening from the storms. You could feel it. It made my heart full, my soul full to be surrounded by strong advocates willing to be open and honest about their journeys. There are so many stories out there each one filled with sadness, happiness, yes comedy but most of all each story is one about love. The Today Show helped to get the conversation started about Hidden Heros and the love we have for our veterans. 

All of this has energized me, to step up my advocacy game. If I can be half as amazing as the women and men I met then I am on the right track. This is something I can do that is mine. I can be an advocate in addition to a caregiver. 

So yes, the trip filled my soul in unexpected ways. It made me get out of my comfort zone, it allowed me to take baby steps as a widow in training and it gave me a purpose.  I have a voice and can use it to advocate for veterans and caregivers. 

Thank you Senator Dole. Thank you Dole Foundation team. Thank you Hidden Hero’s. Thank you all for showing me…me. 

 

All my love,

The She.

 

So, the Big He did get to video chat with Tom Hanks twice. In the picture of Tom Hanks holding a phone, that was the Big He. So many people were encouraging and helped to keep the Big He involved. His spirits have been lifted. He is doing much better these days. He is really finding his photography to be therapeutic. Oh, and by the way, seeing Sheryl Crow did not suck.

SIMPLE

If you are in the ALS know, you know it’s ALS Awareness Month. If you are in the Military Caregiver know, May is Military Caregiver Month. So, as a the caregiver to a veteran with ALS apparently May is THE month!

This morning I was able to get a few minutes to myself. I went outside to enjoy coffee and greet the morning. As I took in the silence, my mind kept wandering to the word SIMPLE. This word had my thoughts bouncing all over the place. This is something that happens these days as it often feels like my mind is a pinball machine with the ball my thoughts and the bumpers and flappers the subjects.

When thinking about the word SIMPLE I went to both how life use to be so simple and how supposedly simple things have created complicated outcomes.

A simple weakness in a finger turned out to be ALS.

A simple request for a non-invasive ventilator turned into a congressional request.

A simple cold turned into pnumonia and ultmately the need for a trach.

A simple request to the VA for a hospital bed appropriate for Tom turned into a request that I had to elevate to local VA management and include both our Congressman and our Senator in the request.

A simple UTI turned into sepsis.

A simple trach change turned into 3 days in ICU.

I find it hard to remember when things seemed simple, but I know it happend. I guess if I think hard enough I could come up with examples but that would require me to quiet the thoughts and focus…something my pinball machine mind doesn’t allow these days.

I was also thinking that with simple things turning into complicated events, complicated events are overcome simply by the love I have for my family.

I am simply a military caregiver to my husband with ALS but I hope through awarenss you have learned there is no such thing as simple when it comes to [military] caregiving and ALS.

All my love,

The She

The He’s update: He was released yesterday from the ICU after getting his trach upsized. He is adjusting to his new normal of partial paralysis, trach and unable to speak and eat. He is focusing on his hobby of photography which has led him to upload his artwork to the website Fine Art America . You should check it out and check back often. The amazing part is he is editing the photo’s using only his eyes. Soon he will be taking pictures again using only his eyes. I can’t wait to see the world through Tom’s eyes.

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