In the name of LOVE

What would you do in the name of love? Probably anything for your family.  I would and I have. But what about a friend? How about a friend from your past? How far would you go to make sure they knew they were loved?

This weekend we were shown what happens in the name of love. Just a little over a month ago, we reconnected with friends. These are friends from our past. Like military past. While we were stationed at Lackland AFB in San Antonio (1992-1996) the Big He worked with another young (single…important to the story) airman that we will call “S” at the jail on the base. At the same time, I was attending UTSA working on my degree in Biology where I met  a young woman (single…again, important to the story) who I will call “M”and her and I became friends.  If you have not already figured it out, the cliff notes are that we played match maker to the single young airman and the single  young college student. Today they have been married 20+ years, have 4 children, run a successful law practice and live in El Paso, Texas. We were there when they got married and had the opportunity to meet their first born when she was a few months old.

This reconnection with them has been amazing. S contacted us after learning of the Big He’s diagnosis from another military friend. M & S have made it a point to reconnect. S took it upon himself to get a reunion together. Not so much as asking IF we wanted to get together but WHEN. What started off as a weekend reunion in San Antonio ultimately ended with a weekend in Austin. While I think he was not sure how his persistence was taken, I can reassure you it was very appreciated. Taking decision making away from us for certain things believe it or not, is what we need. There are so many critical decisions we must now make on a daily basis that there are some things that we will put at the bottom of the list. Its not because they are not important it is just so many important things are occurring right now.  S also understood that it may be easier on our family to meet at our house. S also offered to help with any “honey-dos” we may have.

So, in the name of love, M and S packed their family of six in their SUV and drove 10 hours to spend 1 full day with us. They arrived around 6:00 pm on Friday and will leave this morning after popping in for what S called our “front porch goodbye”. Giving us one last time for hugs and kisses before they head back home. It has been an amazing weekend for us. This has been another one of those reconnections that it is as if no time has passed between us. We picked up where we left off.  There have been laughs and serious talks about Alpha Lima Sierra. It has been good for us and them.

As I sit here, I am aware that our reconnection is not by chance. We are experiencing what our family calls a “A God thing”.  It is in the name of love, we are being shown that while at times we feel alone in this fight, we are not. It is when we need lifting the most, we get it. While this weekend is just one example of this, another is that there have been many visits from Tom’s oldest and dearest friend, L.   L always seems to show up when we need it showing us how much he loves us.  And there are the visits from D and S.  D is my brother from another mother and my man-of-honor.  They travel from OK to be with us. These are people that are more than friends, they are our family. We love them  and appreciate what they do for us more then they can ever know.

We have many people that love us. Those that we know, those that we have not yet met, and those that are coming back into our lives. So, what would you do in the name of love?

 

 

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(The kiddos at the State Capitol 2/18/17)

All my love,

The She

The Big He’s update: As you can guess, he is progressing. His walking is slower and we use the manual wheelchair more and more. He now has his ventilator to use at night which  has allowed him start sleeping better. Before the ventilator, he would wake up throughout the night not able to catch his breath. The VA should be putting in the order for his motorized wheelchair so that is coming soon.

Our desire to push some legislative changes to allow state employees that are also veterans and who work in law enforcement to utilize their military credit toward retirement has come to an end. At our meeting with our Representative  it was identified to us that there is actual language in the Texas Constitution that prohibits the addition of changes to LECOS while the system is actuarially unsound. Meaning, as long as the fund is not financially sound then it is a no go. Will it ever be sound, probably not but we will continue to watch it and you never know…if it happens, we will attempt to make changes.

 

 

 

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‘Bout Dang Time

20170204_083239.jpgWe finally have some down time it seems. Even our Rocky-Dog is gonna take advantage of the down time. For months we have been trying to get the Big He’s  needed equipment and assistance from the VA. It has taken daily phone calls and weekly emails to make sure that everyone was working towards the common goal of getting the Big He his ventilator. I have not been happy with the VA in our area due to the inability of many of the different departments to come together to make something simple like getting a vendor to deliver and train us on the equipment happen. While there have been some wonderful VA folks we have been working with, the process has failed for us until now. Yesterday we spent the good part of the day with VA and VA contracted vendors in and out of our home. We had our care coordinator and a representative from prosthetics. We had a contracted respiratory company and home health care company at the house. The motorized wheelchair vendor was here and measured and fitted the Big He for his chair. While using private insurance is something we do with regard to seeing our new ALS Dr in Houston (more about this later) getting the VA to get processes and procedures in place to assist those veterans that may not have the luxury of private insurance to help obtain services the VA cannot was really the main point of this exercise. The Big He was their “Beta tester” for ALS patients using the VA as primary providers for the ventilator and follow up care. I hope the system has had a correction and this point forward obtaining needed services and equipment will not be a problem. If it is, not to worry, I WILL hold their feet to the fire again and ensure my love is taken care of.

I mentioned above about seeing a new ALS Dr in Houston. We will be attending Dr. Stan’s ALS clinic at Methodist Hospital. We were blown away with the folks associated with the clinic and Dr. Stan was amazing. I could go on and on about what a great experience it was but let me just say this, for the first time in almost a year, we left the doctor hopeful and not doom and gloom like every other appointment. There is hope knowing he is getting world class care. We are being provided information before we need it. We were provided information regarding how good quality care can extend his quality of life significantly. Hope is a good thing and will go along way with how our family deals with this horrific disease. So grateful for those that suggested we go to Houston.

So as you can see, Bout Dang Time! About time we feel we can take a step back and breath. Not just for a weekend or a special trip, but we feel like there is a plan and that we now have the team behind us that we can count on regarding the Big He’s medical care. Please continue to keep our family in your prayers and that we will see some sort of management or cure soon.

All my love,

The She.