What a busy past couple of days I’ve had! The best part for me is that it wasn’t all ALS stress busy. Friday was an especially nice day. One of those rare days that the stars align just right. I wasn’t having or feeling particular bad ALS wise, which I have been concerned about for this day. Tony and I drove about three and a half hours each way and proudly watched our son, Steven, cross the stage for his white coat ceremony. This is something he has put a lot of time and work into for a while. Once he made the decision he didn’t stop working hard to meet all the requirements and he is in the school of his choice. Now a new type of long hours of hard work is ahead. He’s ready.
Another great thing is the nice day didn’t end after the ceremony. We spent the rest of the day on a guided tour by Steven of his new city. He moved up a few months ago to get acquainted with it, but now his life will be spent on campus. It’s a beautiful campus. The building he’ll spend much of the next few years in is very warm and inviting with everything he’ll need at his disposal to study and prepare for the many tests ahead, including rooms designed to reboot your brain when on overload. The whole building has a home feeling. I could easily live there. If I was in a position to have a designer I’d be looking up who did this because it’s perfect. The campus is very handicap accessible, which I was very impressed with. I’m talking about Bill Gatton College of Pharmacy at ETSU in Johnson City, TN. Below is the video of him walking across stage.
I thought I would really be paying the price for the long day yesterday but, to my surprise yesterday wasn’t all that bad symptom wise. I am feeling pretty fatigued and a bit crampy today, but that’s Ok. It’s a good day to feel bad. My Mother came to visit yesterday for a while. This was her first time seeing the door completely up with the frame now covered by sheet rock and painted. It looks like it has always been there. I remember us first talking about doing something similar when we were looking at the house. All these years later and us selling, we finally got around to it. I can only imagine the arguments with the kids in those very early years of who got that space. Upstairs has four full bedroom, so the den/wet bar served as a bedroom a couple of times. but curtains in the doorway was the privacy. Now it’s basically a little apartment. It has served many purposes since we’ve been here. Now it will make a great Mother-in-law area, office, kids play area, man cave, a fifth bedroom. The list goes on. The next thing is getting the pedestal sink installed. These new features will surely bring in offers. I really want to stay now but, we need out from under the debt. I’ll enjoy while still here. I’m so proud and thankful of what all Tony has accomplished.
Our daughter, Amanda, and Grandson, Brayden finally made it back last night from Indiana. She returned with a new tattoo. At first I’m like, No! Why? Tony and I keep reminding ourselves tattoos don’t carry the same stigma as they once did. I had a couple way back when, thankfully easily hidden except when in a bathing suit. The looks when taking the kids to water parks. Crazy and now funny to think back on. I do have to say one is a little, well downright trashy, but people in line behind us often acted like we were nasty circus freaks and parents sometimes actually left the line. People are so closed minded to be so ridiculous. So, I’m trying not to be that way with our kids who all have at least one tattoo. At least they are tattoos parents wouldn’t cover their children’s eyes over. This time Amanda got a hand saying I love you in sign language with Tyler’s name. Her brother who is deaf. It’s a nice quality tattoo, I don’t think she will ever regret this one.
I must say though people, tattoos are permanent. Yes I know there is laser removal but, it’s expensive, time-consuming and usually leaves a mark, not just like your old skin. I don’t know but have heard many say it’s also much more painful than the tattoo itself. Today’s words of wisdom: Think long and hard before that ink is part of you.
Since speaking of two of the kids, I’ll go on with family updates on all. Tasha had a nice vacation recently to Louisiana to visit her husband, Billy’s family. I haven’t been able to talk with her in person about it. I’ve seen pictures and I know she and the boys, Jesse, Ethan and Uriah had a nice time and a much needed get away for Tasha from her regular routine of work and all that comes with three young boys. It’s always nice to get away and let your mind free from it all so it can recharge and be fresh to go back to work. It’s also that great time of year, back to school, and all the preparation that comes with that. I hope to see them all soon. Some visits have fallen through either because of ALS or the grueling schedule she has.
Tyler is still in Indiana and preparing to move back soon. He’s just getting all his ducks in a row and everything squared away so the move will be simple as possible. We’re really looking forward to having him here. It will be great having another set of hands and strength to help Tony with everything he’s been doing. I have no doubt he’ll jump right in helping. I’m sure he’ll also start going to workout with tony five days a week, work allowing. He always has during times of living here in the past. They both enjoy it even though they argue a lot doing it. Same when Steven would get in a routine of going with Tony to work out. I never know if they’ll come back temporary enemies or smiling and joking. I stopped trying to figure it out. I guess It’s a man thing. Someone didn’t spot the other right, took too much time on a piece of equipment totally messing up the other’s routine somehow. The reasons I’ve heard are endless and make no sense to me so I try to let them deal with it. It’s always back to normal soon enough for the next trip to the gym. That’s all that matters really.
As far as me, I’m still trying hard to take things day by day. Definitely think and plan for the future but try not to get stuck there in any negative way. That’s the way Tony and I are moving forward with this ALS monster that constantly needs attention and strongly desires to take away any joy. We kick it every chance we get.
I go back to Emory in a couple of days to go forward with testing needed for the stem cell trial. You have to be at just the right place in many areas to qualify and you have to still be there the day of surgery. This excludes a lot of people. I have a great feeling about this study and believe it will eventually change how we look at and treat ALS. It can’t happen soon enough! I’ll also be there for the Biomarker study. I’m more than ready to do this!
This has turned into quite a long post so I’ll end here for now and be back soon.
Until next time, take care,
This article was written by April