Monday, August 13, 2018


So a month ago I wrote about my training plans. Since then two things have happened. The first is that I got really sick with something. I don't know what. But I had zero energy and resting didn't help and was incapable of doing most things. I did get check out  by my doctor and everything came back good and I am really healthy just in general. So it was probably just stress and a virus. But I lost almost a week on working out. It happened on a Saturday. And by Thursday I thought enough is enough and started feeling better. I did a walk and yoga and was tired after. The next day I did a short 20 minute swim and almost didn't make it through the day. So it was a bit of a climb back to do what I usually do. In the midst of that I was talking to my therapist and he asked if I was looking forward to anything. And I said no. But I had been wondering about doing the sprint in October I've been planning on most of the year. When I was sick, I realized I didn't want to. I am tired. I'd already decided no more long distance races for the next year so I don't have anything planned after the sprint. I was already planning on a more relaxed year after that. So instead I'll start that early. After the super sprint I have on Saturday I am going to take a break. I want to work on continuing all the sports but in a less urgent way. Maybe 3 runs, 1 swim, 1 bike a week. I want to add on more strength training and gain some muscles. Being stronger would help so much with the cardio sports. So weights and strength training is what I'm looking at for the rest of the year. And next year my A race will be the October sprint and I'll plan on less races for the year to avoid burnout. I need to find the fun again in all of this. I am constantly stressed my life and my husband's condition that I need to find more fun and the fun I had with my workouts. This seems like a good place to start.

Friday, August 10, 2018

Morning time

As I was waking everyone up this morning, it dawned on me how different my morning routine is. It was get up, children to bus, work. Fairly simple. But this school year has some changes thanks to my son graduating to middle school, my huband's continued degeneration, and my daughter's bus schedule being messed up.

The original plan for this year started fairly simple. They both have a bus stop in the same location. Because they go to the arts academies for their grades, the bus does not pass by my house. Rather I have to take them to a satellite location. And the fact that that location is the same for them should make it easy. However, Bub's bus doesn't come until close to 8:00. I have to be at work at 7:30. So yeah. Finally I decided to put him in morning care. It's fairly inexpensive for the morning program at his school. So I had planned to drop her at the bus, take him to school, get to work fairly on time. But then her bus situation got messed up thanks to the driver quitting days before the start of school. So then her bus wasn't coming until close to 8:00. The end result is that she ended up in morning care as well. The expense of both these programs is not great but it's the best solution otherwise.

So now I get up (still working on finding early morning time to run/exercise, for now that is being done in the evenings), and wake up Bub and get him in the shower, wake up LG and put her clothes out so she can change and then start getting ready myself. They either can have breakfast at home or at school, their choice. I get ready myself. Before we leave, I wake up BT who has taken to sleeping in the recliner so he can sleep more upright and also it is easier for him to get in and out of (we are working on a hospital bed for him to aid in this). I help BT out of the chair and we go. Then I drop off Bub at school, drive to LG's school and sign her in and then I go to work. It's a lot. I don't know if it sounds like a lot but it's a lot. It's a lot of driving and getting everyone where they need to go and helping them all out while still trying to get my own stuff together and make to work. But it's the best way and honestly has been less stressful. There are, of course, even less stressful ways to manage. I could pull them and make them go to our home schools and then they would be bused to and from the house. That is not an option for me. I love the arts academies and they are getting a great education and learning an in-depth art form at the same time. And I believe wholeheartedly in that. So this is what we are doing and I'm trying to make it work as best I can.

Tuesday, August 7, 2018

10 years

I was looking at some old posts and I realized that today is the anniversary of this blog and that it has been 10 years since I started this blog. It's been named different things and I've been on and off with it for those 10 years but I keep coming back. I didn't write or do much of anything for a year after BT's diagnosis but then I was honestly in the middle of a breakdown. I've found writing down some of this stuff lately has been cathartic even if no one is reading this anymore. I'm fine with that. I just like saying stuff "outloud," writing down my thoughts. Still I think it is really neat that I've managed to save something for a decade.

Monday, August 6, 2018

Baaaack to school

The kids start school this week and as usual I am of two minds. School usually ramps up the responsibility at my house but it's, you know, school so it's important. School is a lot for me thought. As the mom I shouldn't admit that? But it's true. The burden of transportation, school functions, and everything that goes into school is down to me especially now as the only driving adult in the family. My children goes to arts schools so there are no buses that run near my house. I love the arts elementary so much so it's worth it but it is a pain. And now my oldest is headed off to middle school which is scary for me but he seems chill about it so far. It was a nice couple of years having them in the same place. Certainly that made it easier. Now 2 different schools, buses and schedules. It'll work out especially now that I have figured out exactly how to get my son to school without being overly late for work. His school starts later so his bus comes later, thankfully to the same location as hers. But he isn't zoned for that bus stop so all of that had to be worked out. He'll go to the before school program run by the YMCA and then take the bus in the afternoon and then they will both get dropped off in the same place. It's not the cheapest plans but it's worth it. And they will have time for their evening sports.

I am amazed that she is going into first grade and he is going into sixth and the fact that he is going to middle school is like wow. It's crazy to me that we've already gotten to this point. I am worried about middle school. It's a rough time and a rough age and middle schoolers are not necessarily the nicest. I think he will be fine but he can be sensitive so I guess we'll see. It's also just more. More homework, more classes, and a different routine with changing rooms multiple times a day which won't be a bad thing. He can move around more during the day and he'll have to go outside to change rooms so that actually is a good thing. I also realized that this will be the first time he has to dress out for P.E.  His middle school is a great school and the arts program is amazing. He got in with piano and that is the art that he will focus on. I am so happy with the decision to put him in the arts academy and grateful that this school district offers the option and that LG could go to that school too. I'm curious what her art will be. I'd say drama or dance based on her personality. Drama seems to be the better fit.

But now it's time for homework and parent/teacher meetings among other things. And I handle all of that but I also feel bad because BT misses out on so much. Most of the time it is easier for me to just get the kids from school or from the bus and then go to any open house meetings or to just go to school for lunch or any school activities. Their schools are really close to my work and it's just easier. But I feel bad because I probably should go get him more. It's a rough balance between trying not to miss too much work and trying to include him. There is the factor that things make him very tired and it can be hard to negotiate any crowded venues with his chair. So far we've managed to work it out but I think we both feel bad about him missing out on too much. It's just one of those unfortunate things and will work out how they work out. 

Wednesday, July 11, 2018

And the kids

Once BT was initially diagnosed the question of what to tell the kids was immediate. Obviously something had to be said since BT would no longer be working and they would definitely notice that. There was a month gap between the first and second opinion where everyone just kept hoping that it was going to be something else and BT was still working. In that gap I consulted our pediatrician who has cared for Bub since he was a newborn. It's one of the few times I've ever seen a doctor visibly upset. I asked him what was appropriate to say.  He recommended a simple explanation but not to include the fact that it is terminal. Bub was 9 and LG was 4 at the time. We told them that Dad was sick now, he wasn't going to get better, and that he wasn't going to work anymore. Their reactions were very accepting. LG went around telling everyone that her dad was sick and wouldn't get any better. Bub was sad and asked more questions. It was a different way of processing fairly appropriate to their ages. As time has gone on, Bub has begun to ask more questions about BT's condition. LG has been more accepting. They both have been big helps to their dad although still expect a lot more out of me somehow. It's been also a sad thing knowing what's to come but there is a lady we know who grew up with a father with ALS and she talks more positively about her experience so I feel like the time BT spends with his kids will be hopefully result in something similar.

One day recently Bub asked me about how long we would live. I talked about the average life span of my grandparents and guessed 30-40 more years for me all things considered, hoping that he would drop the subject of his dad. He did not and I answered with Well it depends on how his ALS progresses and then he asked if the ALS could kill  his dad. I never want to lie to my kids but there is information I don't volunteer unless they ask. So I answered yes but that it all depends on how quickly things go. There is no time limit. These are the moments that I get, that no one else gets and they are sad moments. He took this pretty well and he has been processing, I believe, fairly well. And has been very good to his dad this summer. I hope that this summer and the summers to come where he is home with BT are good, positive memories and that they have quite a few more.