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.

 

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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.

 

2017 Reunion

July 12 -16 2017 marked the second reunion for “633rd SPS Desert Deployment Team, Family and Friends.” The location for this year’s event: Africa. Ok, not actually Africa but holy hell, who knew Oklahoma could make you that moist? Before I start to wax eloquent about the reunion itself, I wanted to offer, on behalf of the attendees, a special heartfelt thanks to the Sellers family for opening up their home to all the attendees. Having guests for an extended stay is bad enough but combine that with said guests being a bunch of middle aged, alcohol imbued veterans and their families and you can see how things could be a tad more challenging. So, our apologies in advance, for any damage we did to your children that may manifest down the road. Look at the positive though, their vocabularies have been expanded by leaps and bounds beyond their peer group.
These reunions first started in 2016 after we received a call that one of our own was diagnosed with ALS. Talk about a gut punch. First, from the standpoint that someone you had spent countless hours with in the desert had been dealt such a shitty hand. WTF? Out of all of us, Tom was probably the least deserving of this (and that should give you an indication of the kind of people Tom hung with back in the day). But secondly, on a personal note, what kind of friend was I? That phone call was the first time that I had even talked to anyone from Desert Shield/Desert Storm in over 25 years. People that I had thought of as “brothers” back then, weren’t even a priority in my life anymore. They were just a story to tell from a bygone time when people would ask about the war. So, while the reunions were initially established as a rally call around a sick friend, they turned into so much more. They became an opportunity for all of us to re-establish those bonds that we formed so many years ago. An opportunity to once again be the friend, a friend would like to have (yes, I just quoted Tim McGraw). Not going to lie, it was also an opportunity to see what we all manifested into after 25 years. Who got wider, who was folliclely challenged, were we still the same irreverent assholes we were back then? The answer to the last is yes, by the way. After the 2016 reunion, we determined that this could no longer be a one and done type event. Planning began immediately for a 2017 reunion which ultimately brought us to Oklahoma.
When asked to contribute to this blog, I was instructed to address the elephant in the room at these reunions, that being ALS…the unwelcome attendee. But here is the deal, folks. While ALS is always present, it isn’t what we focus on, nor should it be at these events. Do we have to make adjustments to ensure locations are accessible for Tom and Frank the Tank…yes. Has this disease slowed Tom down…yes. Should you use his feeding tube to shotgun beer…no, at least Lara say’s no. Has it changed who Tom is…fuck no. The purpose of these reunions are to be who we are, or at least revert back to who we were, for a period of time. Part of that is to give the Gareys’ the ability to put this disease on hold, if only for a weekend. To have people treat you for who you are and not see you through the lenses of ALS, but rather through the lenses of brother, friend, and family. Dressing up your ALS friend in a Hannibal Lecter mask is completely acceptable. Causing wheelchair envy because your wheels are bigger (size does matter) is cool. Catching a ride on Frank the Tank because its balls hot outside is encouraged. Playing Card’s Against Humanity and Disturbed Friends and ensuring Tom gets all the handicapped referenced cards is to be expected. So, while ALS is the constant companion at these events, we tell it to fuck off for the time we are together. We are always aware of its presence and the toll it is taking, but refuse to allow it a seat at the table. The Gareys’ are forced to deal with this life sucking disease every day of their lives and I am in constant awe of their ability to handle it with the class and strength that they do. But even the strongest people need help, and trust me, these reunions do help. By just being there we help not only the Garey family, but each other as well. Every one of us is dealing with our own personal issues, illnesses, and/or inner demons. Sometimes we need someone to lean on, to bounce issues off of or to just make us laugh over stupid shit. This is what the reunions are truly about. What started as a circling of the wagons around a brother with ALS became bigger. So, for those of you who participated in either of the reunions, my thanks and my love to you and yours. You have made my life richer by becoming a part of it again. For those that have not been able to attend, I encourage you to make every effort to make the trip next year. Trust me, you won’t regret it. Also, we need more people to attend so we can quit changing the name of the damn group. I’m afraid we reached the point where the next iteration will be, “633rd SPS Desert Deployment Team, Family and Friends, Acquaintances’, People Who Can Point Guam Out on a Map.” I leave you with the following quote, “It doesn’t matter how many people you meet in your life; you just need the real ones who accept you for who you are and help you become who you should be.” ― Roy T. Bennett

Next Week….

The He’s and I are very excited. Next week we will be arriving in Oklahoma to be part of the 2nd Annual Deployment Reunion. It will be a much needed getaway and therapy session. A very inappropriate therapy session but one that will be good for the mind, body and soul. I cannot explain what last years reunion did for us. It reconnected us with family that right now, I can’t imaging doing this Alpha Lima Sierra life without. In the year since the reunion we have texted, called and visited these brother’s and sister. We have made it a point to stay connected in spite of the distance between us. The Big He loves the text and calls from them and so do I. I have even on occasion used these brothers and sister as a sounding board and they without fail, have been what I and the Big He needed. That’s what is amazing about our military family, the ugly of this disease doesn’t bother them. The dark humor we use doesn’t bother them, really nothing is too out there for them. They are open and honest and we like that.

This year’s reunion will be at Daryl and Steph’s new place in Stillwater. They have been busy getting their new home ready for the reunion and making sure the Big He can navigate around the place. Frank-the-Tank will be making his debut to the group along with Lou the service dog. The Big He has progressed since the last reunion. Last year, he was stronger, he was still walking unassisted and his voice was much stronger. This year he needs his walker and wheelchair. Also this year he may be listening more than talking as his voice is becoming weaker, but between Daryl, Lou and Teddy, who can really get a word in. I am sure they will be fighting for air space.

Our reunion is longer than last year. A weekend was just not long enough. So this year it will be an extended weekend with most folks arriving late Wed. Not sure that will be long enough either. I can’t tell you how nice it is to just hang out with folks that “get it”. It’s as if we can relax. I know that everyone there will be looking out for the Big He just as the Little He and I do.

So, in just a week, we will be “hill billying” it, as Billy says, up to Stillwater for 4 days of family time. We can’t wait and will keep you updated on all the fun!

Arc Light

All my love,

The She