It seems that when I have the most going on in my life, I have the most difficult time writing. It isn’t because I have less time to sit in front of the computer, because I still manage to do other things on my computer. It’s just harder for me to put it all out here, you know? It’s hard to make all my thoughts and experiences come together to form a coherent post.
I don’t want anyone to think that I think that these things I’m about to talk about are happening to me. Yes, they are things that affect me, are part of my life and have changed me greatly. I know that sometimes I can be egocentric, but most of the time, I like to think that I am not. And let me assure you that my mental health hasn’t been this good in as long as I can remember. Inside, I am feeling great. That doesn’t mean that things don’t bother me and that some things make me really, profoundly sad. So, these things, these things that are troubling me are really sucky. (Yes, I said “sucky”. It means awful and horrible and really just sucks. Maybe I’ll add it to my dictionary.)
Words don’t even begin to describe how sad, angry, frustrated, etc., I feel about my SIL (Steph) and BIL’s (John) situation. I want to cry. I want to scream. I want to lay down and have a temper tantrum. ALS is a horrible, insidious, unwavering disease. John isn’t getting better. He will never get better. I’m sure I’m not alone when I say that it’s hard to watch him deteriorate in front of our eyes. I never gave it much thought before he got sick, but I love him. I never would have thought to tell him that, but I have now. I’ve known him since I was 15 or 16 years old. He’s been a part of my family for 20+ years. I cannot imagine our lives without him. I cannot imagine Steph without him. I don’t know how we are going to do the things that have always been a big part of our lives–get togethers, family celebrations, traveling, camping, etc., etc.–without him there. It just sucks.
I’ve talked about John a lot in therapy. I worry about him and Steph and their kids. I especially worry about the kids. I’ve probably said so before, but I took care of Logan for the first 5 years of his life. He’s my first nephew. He’s special to me. (All of my nieces and nephews are extraordinarily special to me. We are all very close as a family.) Sabrina is best friends with Emily. I worry about them a lot, almost as much as I would worry about them as if they were my own children. I want to know what John would like us to do when he is gone. Is there anything in particular he wants us to tell his children? Does he still want us to go tubing down the river? How does he want us to remember him to them? When Sabrina gets married, if he’s not there to walk her down the aisle, what does he want Joel or Jason or Nathan to say to her as she gets ready to take those steps? When Logan graduates from MIT, or someplace similar (and, yes, I believe it could happen), what would he say to him after he accepts his diploma?
And how the fuck is any of this fair? How can we not scream, “Why?!”
And yet, Steph is the epitome of grace. I don’t know how the hell she does what she does, day in and day out, one shitty day after another. Fuck. She’s exhausted. It’s not that you can see it, she doesn’t let it show very often. You can just feel it. We do as much as we can to help her and John and the kids, but at the end of the day, to me, it still doesn’t feel like we have made a dent. We aren’t there to help her get out of bed in the morning. Shit, I have a hard time getting out of bed and I don’t have a 15-17 hour day of taking care of John and the kids and working and whatever else God decides to throw my way facing me. One of my sisters-in-law said to me once, “When Steph opens her eyes every morning, that’s as good as her day’s going to get.” That’s not fair.
There damn well better be a special place in heaven for her. Or God’s going to hear an earful from me. He’ll probably say, “Oh! Now you’ll talk to me.” (God? I know I’m not as communicative as I should be.)
Like I said, I’m not sure this is coherent. It’s therapeutic for me. Everyone said that I should write what I want, that it’s my blog, and so I have. There’s more, but this is what is bothering me tonight and it’s enough sadness for one day.
I understood….
Robins last blog post..Truth.
Shelli … those questions you want answer to ? Ask him. I know they are sensitive and I know you don’t want him to think y’all are giving up on him.
But trust me, he wants to share that information with someone. Unless he isn’t aware of the fact that he has ALS — he knows what the eventual outcome will be.
And he needs to know that when the time comes everything has been taken care of … that his kids will be okay. That Steph will be okay. And the only way he can know that is to talk about it.
When the time comes, he will be ready. He’ll be at peace with what will happen in his stead.
There will be no fear that something awful will happen to his wife and kids after he’s gone. He will be able to let go and have an inner peace.
I’m sure he wants to talk about it. He has to in order to make peace in his heart and soul.
Matties last blog post..Never Lost
You are a good person to care so much about them. Maybe you could offer to go grocery shopping for Steph or run other errands? Maybe hang with John while she naps or goes out or just stares out the window?
It sucks feeling helpless. Maybe helping them will help you accept this. xoxox
Finns last blog post..Don’t Give It Away
I wish I knew what to say to make it better. Hugs.
I hope no one comes into my office for 20 minutes or so. I don’t think I can sell this red, teary face as allergies or contact lens trouble this time.
From what I’ve read here since I “met” you, I’m pretty sure that John knows y’all will be looking after his family for him. And I agree, it totally sucks that he won’t get to do it himself.
If he hasn’t already, encourage him to write/dictate if need be, (or better yet, record in his own voice) messages for the kids (and Steph!) for them to receive at the milestones he will be witnessing from heaven.
…and I second Finn’s suggestions…
Hi Shelli. This is the first time that I have been to your blog. It seems I started my blog for some of the same reasons you did…just thought I would let you know I enjoyed perusing your post. Take care and swing by Hollysphere some time.
Holly Anns last blog post..Always with Me
Shelli,
I just read this
http://www.tampabay.com/news/aging/article879333.ece
They think that it will help with ALS as well. This doctor used two tablespoons of coconut oil per day in her husband’s oatmeal. If you get a chance please go read the article.
Would he consider making video taped messages for his children for those special days? Nothing is more precious to a friend of mine, than the message from her Dad when he found out he was losing his battle to cancer. He had messages for her graduation from high school, college, wedding day, the day she had kids, etc. She loves them.
And for the record – life does suck, it\’s not fair, and it\’s okay to be sad, mad, upset etc.
Robin–Thank you.
Mattie–I know. It’s hard to just come out and ask things like that. It’s what my therapist said, too, though.
Finn–We\’re doing those things, too. This weekend, while he is up north with his Dad and brother, we are taking Steph out for a girls\’ afternoon/evening. I think it will be fun. And a much needed break away from her life for at least a little while.
Lisa–Oh, Lisa. Thank you. That’s enough.
Peggy–I’ve thought of video taping. His speech is difficult to understand already, but I may ask him if he’d like to do something like that still.
Holly–Welcome. I will come by.
Heather–Thank you. I read the whole article and the comments and I forwarded it on to John and Steph. I also forwarded it on to the wife of another man who also has ALS. We met them through the website that I set up for John.
FG–I have thought of that. I may still ask him to do that. If my Dad had done something like that, I’m sure that I would have worn it out watching it by now. I know it would be something that his family would cherish as well.