Sad

It finally happened.  It was a matter of time.  I think the few people in our support network are burning out.  Not all, but most.  They are growing weary of hearing about Grace, and, frankly, I’m getting tired of talking about it.  Last week’s email from my friend, the one regarding my absence from Facebook which must mean “our lives must have somehow become perfect and Grace must be all better now” just about broke my heart.  Last summer, I told one of my friends that Grace was struggling with what then appeared to be bipolar disorder, and she simply said that she was familiar with mental illness.  She expressed her sympathy, of course,  but that’s all she wrote.  I’ve not heard from her since; she’s Grace’s godmother, by the way.  We were once the best of friends.  Time and distance have gotten in the way of our once close kinship, but I’ll say this: If she contacted me in any way to update me on my godchild’s health, I would be in close contact.  I would be sending encouraging cards and gifts.  I would want to do something.  I would not wash my hands of the child and the family!

I don’t get it.

I wonder if it has to do with mortality.  A woman I know lost a baby to a rare, genetic disease, and she told me that the most painful time she and her husband experienced was actually after their baby girl’s funeral.  Everyone sent meals for a few weeks after their sweet daughter passed.  People were concerned and wanted to express their sympathy and grief over a life lost before its time.  People, however, don’t want to linger in grief so they move on.  We are not a culture comfortable with discussing death, and chronic illness represents our mortality.  My friend said that two weeks after the funeral people stopped calling.  She and her husband were left alone with their immense sadness, loneliness, and grief.  Everyone else got to go back to their lives, children, and pregnancies.  They, however, had to sit in a house with an empty crib–face the loss and trudge through all the feelings of just having helplessly witnessed their first baby deteriorate before their eyes until she died.

That’s a bit like what this feels like.  Now that we know what’s wrong with Grace–“Your daughter has a schizophrenia spectrum disorder.  The prognosis isn’t good.  I’m sorry.”–no one’s coming around anymore.  They don’t want to hear about what her life is like and what it takes to manage a mentally ill child.  They don’t want to know how she was doing last night at the hospital (She looked like an owl.  It was positively weird.  Her pupils were dilated and she wasn’t blinking.  She took her first dose of Lithium last night).  They don’t want to know that my husband finally realized LAST NIGHT that Grace is really ill, and he came home and cried after he saw her at the hospital.  I wish I had been more sympathetic, but my response was, “It’s about time.  Where have you been?”  Denial is a bitch.  I suppose I am as well sometimes.  People simply don’t want to be reminded of this.  Grace seemed to be fine…until she wasn’t.  If it can happen to her, then it can happen to you.  Who wants to stick around for that somber reality check? Grace’s case manager asks me all the time what I’m doing to support myself.  As her primary caregiver, I’m supposed to be getting support.  From where? The social worker, psychiatrist, and therapist at Grace’s hospital can’t even figure out what kind of therapeutic intervention will best support a kid like Grace.  Where am I going to go then?

I don’t think I’m alone in this.  I know I’m not the first parent who has watched her friends bow out not so gracefully in the name of “That stresses me out!” or “I don’t want to be around that.” or “I don’t know what to say!” or “I just don’t want to hear anymore.” or “It’s not like I can fix it so why bother?”

Well, I’ll just say this.  I don’t expect anyone to fix anything.  I sure as hell can’t fix anything so why would I ever expect that of anyone else? I don’t have a Messiah Complex nor do I want anyone else developing one on our behalf.  Most of the time, I don’t even get off on talking about what’s going on with Grace.  I have to spend a lot of time talking about her with tons of people–teachers, social workers, therapists, and psychiatrists.  I talk a lot, and I’m an introvert.  It takes a toll.  So, I blog.  It helps me process everything.  When I see my friends, however, I want to talk to them about their lives, and I want to talk to them about other aspects of my life outside of Grace.  Grace is not my sun, and I’m not orbiting her although there are days…I want to feel like a woman who has something to do other than take care of her.  Many of my friends who have disappeared assume that I have become one-dimensional simply because I have an ill child.  They assume that I am weak, tired, and overwhelmed.  They assume that I am neglecting myself, that I have let my house go, my sex life go, and that I don’t care for my other children because Grace must be all-consuming.  They assume that I am handling these circumstances as they might handle it.  It’s a complete theory of mind failure!

I’ll admit it.  I was sort of a mess last summer.  Yeah, I forgot to wear underwear.  I wasn’t sleeping or eating, and I don’t know if my husband and I were having sexy rumpus.  I don’t remember! It was hellish, but we’re not there now! We found our footing.

I miss my friends.  I wish they hadn’t disappeared, and I wish Grace didn’t have schizophrenia.  I wish for a lot of things.  This is life, I suppose.  We grieve what we lose and keep moving forward.  It makes the few remaining friendships that I have all the more meaningful.

Still…I think it sucks.

Now, I will share something with you that made me laugh today:

shoot-for-the-moon

Even if you miss, you’ll land among the stars. Of course, then your eyeballs will boil and your lungs explode from decompression. But that’s what you get for being a damn showoff.

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22 thoughts on “Sad

  1. There’s a lesson in your post for all of us. Friends should stand by friends in the best of times and the worst. I think we’ve all been guilty of giving our condolences at a funeral and then moving on, leaving the friend to grieve in isolation. I also think when a mom is completely taken over with the business of a sick or special needs child there can be months when they don’t call friends due to utter exhaustion. I will gently suggest you could call one of the old friends and try to touch base before too much more time passes. They might be happy to hear from you. I hope I’m not wrong!

    • Well, I reached out to both thinking the same thing. Perhaps I’ve been caught up in my own stuff? I’m certainly not immune to being self-centered. Nothing. The crickets are chirping. At this point, I can choose to take it personally, or…I can look around and say that not everyone is cut out to support my family. It’s not a shame-based assumption. But, truthfully, not everyone is equipped to sit at my table and not be freaked out by a child who suddenly proclaims, “There’s a man standing at the window! Do you see him? He’s RIGHT THERE!!!” This is common in our house. Some people would recoil. Others would look at us with pity. I’ve got two people who see us with consistency, and neither of these people are “bothered” by Grace’s psychosis, depression, or mania. They deal with it beautifully, and I think they are gifted people. It’s like hospice nurses who comfort and care for the dying. They are not put off by a dying body and all that means, or those who provide care for infants and toddlers. All the drool, pee, pooh, and snot…some people can’t tolerate it, but these folks take it all in stride. So, perhaps the people in our lives were meant to be here. And the ones who have left? Well, I try to communicate with them, but they don’t close the circle of communication. Yes, they do miss the havoc of it all, and I don’t judge them for not wanting to be a part of it. Honestly, I don’t want to see it either, but Grace loves the people who are sticking by her. And, love is no small thing. Particularly the love of a child…

      • You are so right that children love to be loved by others no matter what. I had a girlfriend whose son was on the Autism Spectrum and instead of sticking around and being my friend she transferred schools and cut off all contact with me and other people in our small town. It’s unfortunate but I think she was embarrassed and shameful and had a hard time accepting the diagnosis. I truthfully saw it long before she did but it didn’t change how I allowed our kids to play together and participate in sports. I was one of the only mom’s that invited her son to parties. I still miss her but she didn’t want the relationship to continue. All my suggestions for coffee or dog walks were ignored. I’m glad you have a few good friends. Right now my life lacks real social connection but that’s another story for my blog!

      • I have experienced that VERY thing. That is entirely about the other person, and it’s a loss particularly when it’s a good friend or there’s a connection. There’s a lot of grief that comes along with an ASD DX, and a lot of people don’t know that. They don’t recognize that what they are going through is really grief so they cut people off or transfer their shame/grief, etc onto others. Your life is changing so much right now. I wish I could take you out for coffee and be a listening ear. When I embarked on my biggest work years back, the entire landscape of my life changed from friendships to activities I was involved in. It’s a huge transformation. I had this dream when I was nearing the end of three years of psychotherapy that I was running after a bus, and I couldn’t quite catch it–it was headed where I wanted to go–because I had wet butterfly wings on my back! Apparently, I had emerged from a cocoon of sorts, and my wings weren’t ready for flying yet. So, I jumped for the bus instead and made it…just barely. It was such an odd dream but it let me know that what was really going on is transformation. That’s what you’re doing, and that takes time. Nothing stays the same or remains untouched during a transformation…

  2. You know, after the death of my son many years ago and his father a few years later, my friends disappeared. Shortly after my second husband died, I kinda lost it and ended up in the mental ward for a couple weeks. It wasn’t pretty and, when my “best friend” asked me what happened, I went off on her, telling her it was her fault because she abandoned me. She walked out of my life that night and I’ve never seen her again. I know, now, that she did me a favor!

    10 years ago, my oldest son was diagnosed as Schizophrenic at the age of 19. For years he was undiagnosed and we were almost exclusively the only ones, besides the police, that thought something was wrong. It took him threatening a police officer for them to take him to the hospital and get a proper diagnosis. He is medicated now and, as long as he STAYS medicated, he’s doing well. There is always hope.

    I think that the people we need at any given point in time will appear when we need them most. Things don’t just happen, they are ordained by our Higher Power, whoever that may be. Personally, my HP has a sick sense of humor and needs to stop with the speed bumps!! I’ve had too damned many this lifetime!!

    If you ever feel the need to vent, please feel free to. It’s healthy for you to rant, rave, scream, yell, whatever to keep your sanity. Don’t worry about your “friends” the real ones will come around soon. Just hold on hun, you can do this.

    • Wow…you’ve been through hell and back and hell again. Heavenly days! Thank you for commenting. I’m not without hope. Not at all. And, I am very much a person of faith. I just look up and around sometimes and think, “Wow! Where did everyone go?” I vent…I cry…but then I shake it off. I believe very much that there’s goodness here. I have to choose to dwell not in fear but in hope. So, that’s what I do…even when I’d rather pout. You know what I mean? Sometimes pouting feels better.

      • Heavens yes, I TOTALLY understand! Sometimes, especially lately, I’ve had great bouts of the why us’. Life can be so freaking hard, especially when you feel abandoned! Sometimes a pity party is a necessity.

      • A few years ago, my lovely therapist did six months of life coaching with me. He said that I was done with psychotherapy, but I needed an “ass kicking” into a new paradigm. So, we switched gears into life coaching. Self-pity, he said, was okay as long as it was purposeful. If I ever needed a Pity Party, I was allowed only 30 minutes. In that 30 minutes I could give it all I had–you know, really cry, weep, throw in as much toxic shit as I wanted, but after 30 minutes, I had to shut it down. What I found is that self-pity was is a gateway emotion for me into much deeper emotions that I find hard to reach like grief and the deeper, darker pains that I can’t normally find. The places that I don’t like to visit but that require healing. So, as I used the Pity Party strategically, I found that I feel self-pity less and less because there has been healing. I don’t ask ‘why’ so often anymore because that question will never be answered this side of Heaven. What WILL be answered is “What does this mean?” and “What must I do?” and that’s when I’m asking God “What do you want to be for me now that you’ve not been able to be for me in any other circumstance?” Those questions never fail to receive an answer. Right now, in these circumstances, God is being very kind, gentle, and generous. Every…single…day, and I don’t know that I could have experienced him in that way at other times of my life. Do I make any sense?

  3. You’re right, your friends should stand by you through good times and bad; however, I can understand where they are coming from as well. More than once, I have been in situations where a friendship has become nothing but a therapy session for that friend. I like to think I am a good listener. I listen. I try to help them with their problems. But in the meantime, I feel exhausted. I begin to wonder, “What am I getting out of this friendship? Why am I exhausting myself trying to help this person who should probably be going to a professional? What happened to the give-and-take friendship this used to be?” Before I know it, I have begun to lose sight of who *I* am.

    I know you said you don’t like talking about Grace to your friends. You know that, but do they? Perhaps they are terrified of being sucked into the role of therapist. And as friends, perhaps they should be prepared to fill that role, but with something as all-consuming as they probably suspect your daughter’s illness to be, perhaps they are acting out of self-preservation. I’m not saying it’s right, I’m just saying that I know the feeling.

    • This is a good comment. I think it’s very appropriate to assess relational dynamics, to check ourselves and see how we are interacting with others. In my relationships, *I* tend to be the therapist. Even now. I am very good at asking about other people’s lives and maintaining appropriate boundaries. Yes, I blog about my life, my family, and Grace, but just because I blog about it doesn’t mean that I normalize it. Truthfully, the friends who have left don’t even know about Grace’s current condition. They haven’t asked. Some still think she’s depressed. They don’t want to know, and that is certainly their prerogative. One of these people has a history of only showing up when she has needs, and, frankly, my husband has been encouraging me to “dump” her for years since she will call or come over unannounced and then refuse to leave even when almost asked directly. It hasn’t been a very life-giving relationship in some ways, but I have cared about her and wanted the best. And the only reason she recently contacted me was to sell me something. It’s not exactly…awesome or even friendly. It’s just sad.

      Had I a history of sucking people into my personal dramas, then I would totally get people’s fear. But, I don’t. I don’t engage in histrionic behavior. I’m not a drama queen when it comes to life issues. I’m a pragmatist. These people are not terrified of being sucked into the role of therapist. They just don’t want to get involved in any way. It’s the stigma of mental illness. And, for the record, I don’t expect my friends to be my therapist. I have one, and few people are prepared to offer solutions to something like this. I just wanna go out and be normal. See a movie. Go out to dinner. Talk about other things totally unrelated to Grace…unless they want to go there. Good heavens, I am married. I have a husband. I wear clothes. I am a girl! Let’s go get a mani/pedi or something. Coffee? The funny thing is…they assume that this is all-consuming. I have never said that nor have I ever taken the victim’s stance with anyone. It’s not all-consuming because I haven’t let it become so. They assume I handle the situation how THEY would handle it. I’m not them. And if they knew me at all, they ought to know that by now.

      • Maybe in the end you’re better off without those friends, anyway. It sounds like they weren’t even there for you in the good times.

      • I’m sort of laughing here…yeah…It does start to look like that now that I’ve written it out. Boy…ordeals have a way of sifting our lives. And, I’m a firm believer in the ordeal and forging our bonds in them. So…yeah.

  4. That is really sad. It is true, you find out who your real friends are when life goes south. I am sorry that people have distances themselves when they would be the most helpful. I’ve experienced this through various things, one of them being my dads death. People just don’t know what to do with the grief process (for whatever reason you may be experiencing it.)

    Usually, the people who have experienced it themselves are the quickest to reach out. I will be praying that the Father brings people with whom you can share the load and not have to explain yourself!!!

  5. In the spirit of friendship and not talking about the things that trouble us I will just say that I love that demotivational poster. Those things always make me laugh. My favorites are one that says “Maybe the purpose of you life is to serve as a warning to others”, and another with a picture of french fries that says “Not everyone can be an astronaut”. Good fun.

    • Yay! Someone commented on that poster! I love the Despair posters, too! Yeeeees…the astronaut one. One of my faves. Do you know the one with the lightbulbs that says, “There are no stupid questions. Just inquisitive idiots.” I have found myself quoting that one a lot recently. But, my all time fave is the one with the runner sitting on a bench with his head in his hands: “Failure: When your best just isn’t good enough.”

    • Sifting? Is that what it’s called? Hell, I don’t think I know anymore…Sometimes I think it’s just the American way of life. Busyness. It erodes…

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