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.

 

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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

The BEAST known as Lou [Gehrig’s Disease]

This weekend I heard Alpha Lima Sierra refereed to as The Beast. Once to say the Beast had won, meaning someone’s loved one had died from this disease. The other to say that their loved one was in the hospital fighting complications this disease ultimately causes.

Alpha Lima Sierra is a Beast. One that cannot be conquered or tamed.  It goes after entire families, no one is safe from its devastation. It strikes fear into people just by saying its name. For me, it feels like I cannot get enough ahead of the Beast to take a breather. There is no where to run, no where to hide. I cannot protect my family from it, I cannot protect myself.  I cannot flip the light on and see that it was all a dream.  This is our reality.

I am on a quest you could say to find someone to help me fight. To help me maintain the stamina I need so I can be there for the Big He and the Little He. It is a quest for sure.  While we are getting help from our Church, I am also looking at getting paid help in the house.   Finding someone has been hard. We came close a few times but nothing yet. I know that when we do find that right person, I will be able to get back the strength to fight the Beast off. In the end, the Big He, Little He and I will fight this Beast as long as it takes. For me, I will protect my family as long as I can from this Beast, I know there is something around the corner that will finish the Beast off and protect so many like our family from letting the Beast win.

THE OTHER BEAST KNOWN AS LOU….

So, many of you know we have a new member of the family. His name is Lou Gehrig and tomorrow he will be 9 weeks old. He is a beast of a puppy. LuckiIMG_20170624_200001_333ly with this beast, I can totally outrun him and even conquer him.  Heck, even both He’s can conquer him as well. Well he does win some battles, several because he was sneaky and we left our shoes on the floor and the other’s are when we go for walks, he usually gets a free ride on Frank-the-Tank when he poops out and gets tired. We are working on doing some basic obedience training with him. We have a great organization helping us, Service Dogs Express. We have met with one of their trainers twice now. They will help us get Lou in shape to be the best mobility dog he can be. All in all, Lou is adjusting to our family and we are adjusting to him, well all of us except for the 12 year old Lab, Rocky. He wishes we would take Lou for walk and not bring him home. I know Rocky will come around eventually.

All my best,

The She.