is what I just texted Rev. Captain Awesome… Posts sort of come out of nowhere…First, I want to show you where I am sitting. Captain Awesome and the kids got me a bird feeder for Mother’s Day! I am sitting here on my patio waiting for birds to come. They fly around here, but haven’t found it yet… I can’t wait! Note you can see one of my dogs. The old man. He will be 16 this summer!

So much is going on and I don’t know where to begin so I just will. Mom is about to quit her job to stay home with Dad- her last day is at the end of the month. Stella is quitting smoking (YAY STELLA!!!) and on her way to feeling better. We have not spoken about the “wreck” as we call the blog, and I think it is understood that she is not ready to get back to blogging just yet. She cleaned out the Wreck Room and is doing quite a bit of gardening, which I am jealous of… Overall, I am so proud of her progress and pray it continues.

As for me, I am fine. Our youngest has been through a battery of testing for abdominal issues and I am hoping we get results this week. She is 5 and after her endoscopy Friday she could not believe she had actually had surgery! I am so pleased with the doctors treating her and am anxious for some news so we can move forward. Our two other kids are playing softball and baseball which fills the weekends fast. Captain Awesome lost an old friend last week and that has been hard. Also, another dear friend of ours has been in the hospital and is now looking at transplant options. If you are a prayerful person, or a thoughtful person, any and all would be appreciated. They have kids the same age as our kids which makes it hit even closer to home. He owns his own business, so I have been going to help with menial stuff. His wife calls me something like the ‘slacker-picker-upper’ and I think it’s funny. I am amazed how therapeutic it is for me to help them. I have been struggling so much with my own parents and not being able to help them, that this is fantastic. I like it when Captain asks me if I am ‘going to the office’ and I have never felt as rewarded as I do now. I hope I’m doing some good for them, but I bet the joy I feel is about a million times more than their gain.

So, here is why I am on here. My therapist asked me to write about my emotions about Dad and Stella because I had a panic attack the other day when I told her about Dad having an accident in the car on our way home from Oklahoma about 2 weeks ago. Evidently, I have problems. Call me Bob Wiley. So, here is my list. Or I may elaborate on some things… Not sure.

Emotions I feel about Dad- loss; guilt for the time I can’t spend with him; sadness for the times we have had that won’t happen again, for the things he wanted to do that he never will, for the things my kids will never see or hear from him, for the things he can’t teach them; I hate watching him decline. I feel helpless about it. When he has an accident like he did that day, I know he was embarrassed and I know it sucked for him. I hate that. I also have fear. Fear about how fast or slow he will decline, fear about how much time we have left or if we are at the right doctor or if there is something else we could be doing. Fear that he chokes, or falls, or dies tomorrow. I feel guilt that I am not over there more, helping more, seeing them, sitting with him and letting him talk. I also feel guilt that I am not there for mom like I could be. Boundaries are still a little weird with her, so I don’t know what to do with that. I also feel regret about things Dad and I never did. If we could just have one more walk on a white Florida beach, or drive a corvette one last time… I miss my dad. I miss him so much and I am afraid that if I don’t keep his legacy alive every day, that it will fade. I also think it is hard to talk to my kids about him. They sort of know what is going on but it is easy for them to just do their thing when we visit my parents. I am sad though, for our oldest child, who picks up on so much and is now afraid to eat with them for fear that Dad will choke again like he did on Christmas day. I can’t blame her, and I am afraid I will regret letting her not see them as much because of her fear.

About Stella– I am so sad. Sad that she is facing this. Sad that she is facing this alone, but at the same time scared to know my own fate even though I need to know for my own sake. I am sad for her husband, but more than that, I am sad for her kids living at risk. I know that they can end HD by choosing to adopt or do genetic testing, but still, I am heart broken for them. I wonder how they felt on Mother’s Day. I wonder if they wondered how many Mother’s Days they have left with their mom being who she is and not someone as overtaken by HD as Dad is. I admire Stella’s strength to go to Brattleboro and help herself, and I worry about her depression as time goes on. I am encouraged by those out there in our HD online community who appear so strong. Some days I feel that way, and some days I feel so fragile. I think that is part of the new normal.

Okay. I might add more later. Thanks for reading. My stomach hurts now and I need to go to ‘the office’.

I apologize for the lack of grammatical attention to this post. I really don’t care about grammar when I write about my emotions. I’m a Trainwreck.

…but I don’t feel like it.  Finally got up here this morning and cleaned the bejezus out of the Wreck Room. This is the first time I’ve made myself sit in here.  Am I comfortable?  Not really.  This was my isolation room for so long.  But nobody’s home so I’m alone anyway so what does it matter?  I don’t know, it just feels weird.

As does posting.  I’m really kind of forcing myself to do this too because I feel like I owe you all an update.  And here it is:

I feel so much better, but at the same time more serious.  Does this make sense?  I guess I am taking more responsibility for my actions.  I am deliberately making an effort to spend more time with my kids, and that has been great!  I started geocaching, which taunts me to go outside and somewhere daily, and bring kids!  I hate the ones by roads though… I prefer the woods.  So I guess I still have a lot of anxiety and I continue to avoid places like the grocery store, where I get so overwhelmed.

I think Huntington’s Disease and me have had a very unhealthy relationship since finding out about it last year.  I literally let it into my life, and SIT ON ME… crushing me to death and  making it difficult for me to breathe… let alone do laundry.  I mean, I couldn’t do ANYTHING.  Now, me and Huntington’s Disease are sitting in the same room, occasionally eyeing each other up and down… but I will not let it get up and come near me, and I am most certainly not going to let it crush me again.  I have regained some level of control in my relationship with Huntington’s Disease, I guess is what I am trying to say.

At the same time, I am overwhelmed and inundated with paperwork for long term disability (through work) and SSD.  I mean, I’M DISABLED.  You should see the shit they expect you to just sit down and fill out!  It makes me an absolute nervous wreck.

But all in all I am doing well– much better than pre-Brattleboro.  It really did help.  Thank you again to you all for supporting me, as well as all you wonderful staff and friends at Brattleboro.  My whole family appreciates it.