A Stigma-Free Home
A few years back. Before our two worlds started to spin out of control.
Before I alarm anyone (hi CinDy!) everyone’s fine. I’m just getting some stuff off my chest.
Here’s the thing. We are a stigma-free home. We talk about our son’s mental illness around here as the disease it is. It’s a disease just like heart disease, kidney disease, etc. It’s a health issue just like dementia.
“It’s sort of like your brother has autism,” I said in a recent conversation with our other son.
It’s very much like his brother has autism. Kind of. In a way.
And so all we can do is love our child and hope for some sort of normal life for him.
It’s been tough around here lately. He seems to be struggling right now. We’re dealing. We’re loving.
I gotta tell you though. It’s fucking rough. I had to knock on his door one afternoon, to wake him up for work (I know! He’s well enough to maintain a part time job right now! Hallelujah!) and again, like many times before, I was so worried that I’d find him dead. That he’d take his life, as he’s sometimes threatened to do.
My baby. My poor baby. The pain and the inability to hope for/wish for more from life.
I don’t get it. I’ve never felt that much despair. Yes, I’ve felt depressed at times in my life. But not bottom-of-the-well depressed.
Look at that picture of the two of us, will you? A regular goofball kid who knew joy. Where is his joy now?
One of his brother’s friends was over here recently, and asked, in a gentle and kind conversation, if our son had always been “kind of weird.”
“That’s what’s so weird,” answered our younger son, “he was normal growing up. He just got weird later.”
People often ask me if there were signs when he was younger. I can’t think of anything. Except that one time, when he was really little and CiNDy was babysitting him, he cried because he wanted CiNDy to clean his room. Maybe that was a sign.
Or maybe it was a sign that his room was pretty much neat while his younger brother’s was a friggin’ pigpen.
He was normal growing up.
And now, like me, he’s got a new normal
I don’t know how much I’ve shared with you, public blog people. Although we are a stigma-free home/family, my son has a right to privacy. I’ve asked his permission to talk about his illness. He’s said he’s fine with it. Hell, he’s said I could write a book about it if I wanted to. And I want to. I just don’t know how I want to tell our story just yet. It will have a very special dedication to my Uncle Kenneth and Grandma J. Uncle Kenneth, who was born brain damaged due to his umbilical cord cutting off his oxygen supply but went on to learn to read and have relative independence. Grandma J, who had patience with him but really gave him the smack-down when he needed it.
I’ve been told, a time or two, that God doesn’t give us more than we can handle. I don’t know whether or not there is a God but I do suspect that there’s something out there that’s given me a special challenge or two. I will continue to handle the challenges I’ve received in the best way that I know how.
And if that means I have to have a roller skating birthday party now and again to get me through those days when I’m almost too afraid to knock on my son’s door, so be it.
I’m not a hugged, but I sure wish I could hug you! I don’t know if I believe those platitudes, either (what doesn’t kill you makes you stronger, etc), but I do believe that we moms hurt when our kids hurt and will worry forever. You’re doing all you can do, and that’s all you can do, right? That, and roller skate
Ack! Hugs!
Had I know what it really meant to be a mom, the life time commitment, the pain, I’d do it all over again. Otherwise, I’d probably have a house full of cats and dogs and let me tell you, I’d like to do without a couple of cats and one fur-blowing dog right about now.
Kathy that is one great picture! I will never not be amazed at your honesty and strength in dealing not only with your health issues but in how you have found a special strength to deal with your son’s “invisible” illness. I hope the Universe sends you many roller skating parties and other opportunities to laugh like a loon
It’s who I am, gbw. I’m honest, with nary a filter. Makes for very entertaining roller skating parties, let me tell you.
Sending you hugs Kathy! You have a great family & ya’ll have had more than your fair share of things that are just too hard. Way hard. And you have been an inspiration in the way you have handled them. I think you are amazing. You deserve a weekly party at the roller rink! Roll on!
Thanks Shar. You hugger, you. I never think that I have more than my fair share of things to deal with. Have you seen other people’s houses? I’ve got nothin’! Roll on, indeed!
Oh Kathy, I empathaize with your sons illness. You said that you have been depressed before but not the bottom of the pit or something to that effect and I certainly hope that you never have to experience that pain and heartbreak. Your doing all the right things, talking about it, blogging about it but mainly what I adrmire most is that you asked his permission to talk about it.
I have a sister that is in complete denial about my illness. Her answer is to pray about it, that I can fight this if I REALLY WANTED TO. Like I have a choice. I have another sister who is a nurse and she does not want me to take my medication.
I am so glad that he has you to talk too. Sometimes it is something so little that will trigger a trip into depression. Live as normal as you can, and give lots of open love and I know that your doing these things.
Sometimes when someone asks me how my day is going, I can tell that they really don’t care enough to just listen. And sometimes that is really the most important thing that a person can do. Just listen.
Love You Always.
Hey Beth. I’m sorry to read about your sisters. Especially the nurse who doesn’t want you to take meds. I come from a nurse, I work with nurses. They don’t know much about many things.
I can relate to this entry so much it hurts. I wish all of you all the best.
I am just loving you from rain splashed Oregon!
I approach my daughter’s bedroom door with the same trepidation… jeeezus it’s good to hear her schmuffling about inside, coming up out of a deep sleep, or pulling on her shoes… whatever… I’ll take ANYTHING… I’m with you, my sister…