Traditions

I don’t know about you, but this time of year I start getting nostalgic. Rem20171217_192256embering past Thanksgivings and Christmas Holidays. The things you did, the feelings, the sense of pure joy. I remember a Barbie multi story home that my sister and received when gosh, I must have been 8 or 9. I remember the excitement of coming down the stairs with her and seeing it Christmas morning. I wish we could get that back, the pure excitement of seeing what Santa had brought. The no concern for anything except when would I be able to play with it. The feeling of being safe, being happy, not just knowing I was loved but feeling loved. There was such innocence back then. I think that is why this time of year, we try and re-create those  traditions, trying to get back if only for a few days those feelings. For me, Christmas is not Christmas without pecan sandies or hot chocolate with peppermint. Last year, I will be honest, I don’t really remember Christmas much less Thanksgiving. I do however remember our trip. Ahhh who could forget that paradise.

This  year I have tried to be more present and make sure we continue with the traditions the Big He and I have created together over the past 27 years. To make sure the Big He, Little He and I have that feeling of joy and love a time before Alpha Lima Sierra.  It’s hard I will admit. While trying to keep traditions there is the ever present Alpha Lima Sierra. Not knowing how many more Christmases we have as a family brings a lot of mixed feelings. While I want to keep our traditions going, I know in the future those traditions will bring sadness knowing that the Big He is not there to share.

We have for pretty much our married life done white lights on our tree. I love the look however this year we went and got a new pre-lit tree. The amazing thing about tree’s these days, they come with LED lights that you can switch from white to colored. I have noticed that I am preferring the colored lights. Changing it  up has been nice. Just like with Thanksgiving, we did a cruise instead of the big family gathering with turkey, dressing and the other sides. Part of me thinks 20171217_192227changing things up might help me get through the holidays when its just the little he and I. The other part knows that there is nothing I can do that will make this time of year easy.

Changing it up, keeping the tree set to colored lights could also be me trying to get that feeling from when I was little. That is what we had…a big beautiful tree, full of ornaments, with bright colored lights. I guess I am searching for that innocence from my childhood. Trying, just for a moment to remember that feeling of pure joy and of feeling safe.

My Christmas wish for my family and yours, if only for a moment, is to feel love, peace and pure joy. Let the stress of life take a back seat and just enjoy being with family and friends. And if this year you are missing a loved one, I pray your heart remembers the joy and love you shared with them and you find the comfort you need to make it through.

We wish you a very Merry  Christmas. God Bless you and your family.

The She

 

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ABC’s of Fall 2017

Yeah, Yeah, Yeah I know it’s been awhile. September – November have seemed to fly by. I mean we are only a few days till December. Seriously?  I don’t like it one bit. I want to hold on to every minute but they just slip out of my hands as fast as I catch them. Our time lately has been filled with Advocacy, Being Grateful, and Cruising for a little get-a-away.

Advocacy

Being handed a crappy situation can either make you go inward to deal with things in your own way and on your own time or makes you so damn mad you push things outward, kicking and screaming for someone to hear you. Guess which way we went…

Advocacy means so many things. For us, we are constantly advocating for the Big He and other disabled veterans with ALS with regard to the VA for services and equipment. Recently we were denied a program that would place someone in our home to help the Big He with making lunch and being there when he eats due to choking concerns. With one program, the VA did not even submit a referral for a particular homemaker/caregiver program. Keep in mind, I am lumping these scenarios as “The VA” but in truth, it is the individuals we are working with. For the most part, once you get to a decision-making level, individuals seem to make better decisions regarding how to handle situations. One of the most frustrating part with working with some at the VA is the inability to identify solutions be it other programs or even suggesting taking it to management to get their input.  I have heard some refer to this as the difference between old VA and new VA. It’s a culture of status quo or a “that’s not my job” attitude. At a time when the VA is getting hammered for so many things, you would think that management would be encouraging solution oriented approaches. I have also observed that the old VA approach to things is intimidation with requests. Questioning some at the VA regarding how decisions are made are not met kindly. Lucky for us, the Big He and I have both been government employee’s and that way of thinking does not phase us. We clearly understand the hierarchy in government offices and how to get resolution to our problems. We also understand that most of the time you need to take a bottom up approach but there are those times that dictate a top down approach. Needless to say getting denied did not go over very well with me especially when the VA uses portions of their policy to deny us but leave out the portions that would apply. I am happy to report that after a meeting with decision making individuals at our VA, there was a solution to our problem and the Big He will be getting someone to help him with lunch time routine to begin with.

Advocacy for us has also has been raising awareness for Alpha Lima Sierra. We do this constantly. There are many people that are unaware of what ALS really is or that there is a veteran connection.  In early November, we took part in our 2nd ALS Association Walk. We had a great time and had about 20 walkers with us. Even our new family addition, Lou, got in on the advocacy by raising money for the cause. He did great and raised over $1000.00

Being Grateful

I will be honest, at times it’s hard to see things through the eyes of gratitude. We are so consumed with this ALS life that taking a step back is hard. I try every night to be thankful for my many blessings. This includes trying to find something to be thankful for in an ALS world. I am grateful that we are meeting so many amazing people in this journey. I am grateful that the Big He can still talk and say “I love you” as well as he can still walk (short distances). I am very grateful we have someone in our life now that is helping us. She will be the Big He’s caregiver while I am at work.

Cruising

We did a Thanksgiving Cruise with the Big He’s Dad, Stepmom, Sisters, the one Brother-in-law and their kids. We have done several cruises but this one the Big He was more limited to what he could do. It was hard for me to see this and I can only imagine what it was like for him. We had a great time but it did open our eyes to limitations that disabled people deal with daily. Traveling takes a lot more thought then it once did. We figured things out and had people to help along the way. There were new friends that would help secure an empty elevator for us, or move people out of the way so Frank the Tank could get through. Yes, we took the tank wheelchair and it was a hit. That alone helped us do some advocating for The Independence Fund and Carlson Mobility and how they help disabled veterans of all era’s. There was also the chance to bring up ALS and its impact. If we educated one person or made them more aware, that makes me happy, that is another thing to be grateful for; being able to communicate to others what ALS is and what it does to people and their loved ones.

I think that pretty much covers what we have been up to lately.

All my love,

The She

The Big He’s update: He is about to start his 4th cycle of Edarvone which was shown to slow the progression by 30%. Can we see a difference? Not really. ALS does not progress in a linear way. It can be fast, slow or even pause for a bit, but it’s always moving forward, always progressing. The Big He’s speech is really starting to be impacted. While he can still talk, he does get tired and you can detect some slurring. He is still eating like a champ and not needing his feeding tube/button. Walking poops him out so it’s a common thing now for him to be in his chair when we are out and about. Please continue to keep him in your prayers and that this disease halts long enough for us to see a cure in the Big He’s lifetime.

Suckitals

Toms T

ALS strikes without discrimination and there is no cause or cure. More than 30,000 people across the country are affected by this disease that slowly robs their body of the ability to move and eventually breath. Military veterans like Tom are twice as likely to be diagnosed with this disease than civilians. ALS is not an incurable disease it is underfunded.

That’s why my family is walking this year at the Austin Texas ALS Walk on November 4, 2017. We have set a goal and I hope we can count on you for your support in our efforts to help families like ours.

 

Click here to visit my personal page

or

Click here for our team page

Touch

20170927_120157.jpgI am toucher. I admit it. I will hug you and pat you because its the way I communicate. To touch someone and to be touched is something I take for granted. Not any more. It is one of those things that ALS takes. It takes from both the person with ALS and those that love them. For the Big He, as this beast of a disease works its way in his body, he will become paralyzed. The difference between his paralysis and someone that has had an spinal cord injury and is paralyzed is that the Big He will be able to feel. When he is completely paralyzed, he will feel me lovingly hold his hand. He will feel the comfort of my hands on his face or his arm. He will feel me pat him as a gesture to let him know I am there. He will feel me kiss his lips, hug him and he will feel me beside him. He will always have my touch. He however won’t always be able to touch me. I won’t always feel his touch on me, that touch that is initiated by him. He won’t reach out and grab my hand like he has done for 28 years. He won’t raise my hand to his lips and kiss the back of it.

Last night as I lay awake trying to get my mind to shut down long enough to go to sleep, I started thinking about his touch and how much I will miss it. I know that the time will come when he will no longer be able to reach for my hand so I try and commit to memory how his touch feels. You know, one of the things that popped into my head is how he would come up behind me when I would be cooking and give me a kiss on the cheek or the neck. I remember the way he would just reach for me and give me a big ole “I Love You” hug. That doesn’t happen as much these days. Its hard for him to stand and maintain his balance.

I also thought about the thousands of times we would lay on the couch with our heads at opposite ends of it and intertwine our legs and just be content in touching and being together. I will miss his comforting touch during those times I needed him to pull me close because I was upset or scared. That embrace for me was always exactly what I needed. I will miss his touch and how it made me feel for so many reasons. His touch would convey comfort, happiness, contentment and of course love and the intimate touch you experience with your spouse. Just FYI, that is something that you think about but no one actually talks about but it is an important part of marriage.

Until that time comes and he cannot reach out and touch me, I will cherish his touch. I will commit to memory what it is like for him to grab my hand, to pull me close for a hug or kiss. And when it passes, I will continue to cherish his touch through my embrace of him.

To my family and friends. Don’t shrug off the hand that is offered, the hug that is being initiated by your loved one. There may come a time when you will only have your memories. Cherish what you have now.

All my love,

The She

The Big He’s update: He started and finished the first round of the new drug Edarvone. No side effects. We are prayerful that his progression slows because in the last few weeks has experienced some progression. His voice continues to weaken and he slurs a bit more. His left foot is starting to weaken and his legs tire really fast these days. Tripping and falling are what we watch for these days along with choking. When we run errands he uses his wheelchair as it saves his energy. He occupies his days with Drew Carey and the Price is Right and training Lou the mobility dog. He is Mr. Mom and gets onto the Little He to do homework afterschool. The Big He is as good as someone living an ALS life can be.

From Micro-Preemie to Man-Child

Like most parents, today the Big He and I look back at where we were on this day 15 years ago. That’s because today is our son’s birthday. We celebrate every year with gusto because we came so close to not having a happy outcome. Most know the story so I won’t bore you with the details…okay maybe a few. Our boy came into this world 16 weeks early. He weighed 1 pound 13 ounces. He had 2 surgeries within the first 3 days of life and was in the St. David’s NICU, ATX for 104 days. We were told in the early days that he would most likely not make it and if he did there would be deficits due to his early arrival. He made it. He has thrived. When people ask me how can I have so much faith after all the things we have been through, I can’t see how you couldn’t. Our son is here despite all the reasons he should not be here. Not only is he our rainbow baby, he is our miracle baby.

He continues to amaze us. He is growing into a loving, compassionate, empathetic young man. Oh don’t get me wrong, he is still all teenage boy with the hormones and attitude and smart @$$ mouth but deep down under the stink and unsettling amount of hair that grows on his face, he is an amazing kid. The Big He and I are very proud of who he is becoming. He is someone that does not worry about what other’s think about him. He want’s to always help his friends and has a hug waiting for me or his dad if we have had a bad day.  He could care less about social media (we force him to post a few Instagram pictures). He does march to the beat of his own drum, which is usually playing some sort of country music from Kevin Fowler to Johnny Cash.

Happy Birthday Baby Boy, We love you more!

 

 

All my love,

The She

 

Wife, Caregiver or both?

Several weeks ago, I was having a hard time. Like dealing with the enormity of what this disease is, what it is doing to our family. I was angry, I was very sad. So, I did what I do, I wrote. I put it down on paper. I’ve been sitting on it. Rereading it. Seeing where I was then and where I am now. I have said this terminal illness thing  has your feelings riding the roller coaster of life and it is in high gear. I think I am ready to share it. What I wrote. Probably because there are other wives and caregivers that have similar feelings and if this helps then that makes me happy. These are difficult things to work through, I am lucky enough to have someone I talk with routinely to help me understand and process things. [Note: Everyone should have a Pamela in their life like I do]

Here you go…

I have been a wife for 27 years. I love that title. I love my husband. I don’t mean I love my husband when he is not pissing me off, I mean I love my husband even when he is pissing me off. We have been blessed with our relationship. From the start, I knew we were going to be together, I would have a partner in crime and I would be his wife, forever. We are truly blessed, and I know that.

But then came the diagnosis. A terminal disease. No cure. Progression. Disabled. Help bathing. Help feeding. I became a caregiver. I am still his wife but now I take on the role of caregiver. I don’t want you to think I am complaining. I’m not. I am glad he is here for me to take care.  I’m scared. I’m mad at the disease for taking away my happily ever after, my forever. It sneaks up on you, caregiving. In the beginning, it’s the same as it ever was. Then there are the little things you need to do to help out. You notice you no longer can ask him to get up and shut the door or run to the store real quick to pick something up. Make sure the door is locked or get that glass of water once you are in bed. His strength is decreasing, he walks slower, he gets tired easily, he can’t do the little things I took for granted. I now pick up the slack when before he did. I now make sure he is okay. I watch for choking, I watch for tripping. I watch. I can’t remember what it was like to just take a walk with him and hold his hand, rise up on my tip toes and kiss him. When we go for walks he is in his wheelchair we hold hands and I bend down to kiss him.

He is proud and doesn’t like asking for help. I have become a no nonsense person and I get mad. But I get it. I don’t like asking for help either. Before if we had an argument is was because he put more time into his work then his family. Now the arguments tend to be around stupid things that in the end really don’t seem worth it. But at the time they were probably due more to the frustration we are dealing with then the stupid thing that made him mad or made me mad.

Here is the thing, I am his wife. I have cared for him when he was sick in the past, and never once thought of myself as a caregiver. I was just taking care of my husband. So, why now, do I see it differently? I wish I didn’t. I wish he didn’t.

I think we both have to work at keeping our roles as husband and wife center in our daily lives.

So there you have it. Today, I am thinking of changing the title to Wife, Caregiver, Badass or all the above!

All my love,

The She

 

Faithfully-27

When the Big He and I started dating he was only a few months from joining the Air Force. We pretty much really started dated during Basic Training and Tech-School. Both of which were not in the same state I was in at the time.  This was before cell phones and texting and really even before computers and emailing was something that was available at everyone’s fingertips. We had good ole letter writing and landline phones to keep up connected. During this time, the Big He told me that Journey’s Faithfully should be our song since we would be physically apart for the near future and of course insert “Airman” for “Music man”.  So, Faithfully became our song and as we celebrate our 27th wedding anniversary today, those words have never held more meaning.

In the beginning, it was like the song…being apart was not easy, but we loved each and that is what made it work. When looking back on the 27 years that we have been married, I truly believe it was the early years that showed us, taught us that what ever comes our way if we remember to be faithful in our love, we can get through anything. And we have. Even now, living an ALS life we are doing it with Faith. We our faithful, knowing the Lord hears our prayers and provides us what we need by the people he brings into our lives. I faithfully stand by the Big He as he battles this disease and he stands by me. While physically, he may not be able to do the things he once did, he still takes care of me, watches out for me and ensures that I am happy and loved. He really is as much of a caregiver to me as I am to him.

I am so happy we are getting to celebrate our anniversary. Last  year when the diagnosis came, we had no idea what to expect. How fast the disease would progress or if we would have the chance to celebrate 27. Meeting this milestone means more than anyone can imagine and seeing how our marriage has evolved into a stronger more loving partnership is beyond explanation. I did not think I could love him more than I do today, but I do. I told him the other day that if I knew our lives would take this path in the beginning, I would, without hesitation, marry him all over again. I am the person I am because of him, because of how much he loves me-even the hot-mess, bat-shit crazy parts. And trust me, this journey has brought all of that out on steroids. Even with the stress, and the fear of what will happen-I am forever his, faithfully.

All my love,

The She

The Big He’s update: On Friday, he had his PEG tube replaced with a Mic-Key button. I mentioned before this is an insurance policy if/when the time comes. He is using the walker almost exclusively now in the house and we take his PermMobile chair out when we run errands as much as we can. He is sleeping more and more but this is due to the disease (so I am told, I still tell him he is a lazy ass shoving the whole retirement thing in my face). His voice is becoming weaker too. I can really notice the change just in a few weeks. We did find an amazing woman that helps us 2 days a week. She is taking some of the housekeeping burden off of me. And then there is Lou-the mobility dog. He is keeping us all on our toes-mainly because if we set still he likes to nibble and bite them. He is picking up on his training and learning fast. A trainer comes in weekly to help guide us with his training. Rocky dog is still hoping we take him back where we found him. That old dog does not like change.

So all in all, things are going the way an ALS life goes. It is  not for the faint of heart for sure. We ask you keep us in your prayers because we need all of them we can get. Give the Big He a text if you get a chance and follow Lou’s Instagram page: Lou_the _mobility_dog to see what the pup and the Big He are up to.