Sunday, November 01, 2009

Damn...I'm Suckin' It Big Time Lately

My apologies, but I can find no more glamorous way to put the fact that lately I am just off my game. I haven't been blogging as much, I haven't been very pleasant to be around, I am

Can't really explain why, other than to go back to the Depression thing, the as-yet-to-be-dealt-with-even-though-I-promised-myself-I-would Depression thing. In fact, so off my game, so unable to really stay on any kind of emotional target am I that we had about 20 or so people over Saturday night for Halloween...and I barely spoke to anyone, avoided contact with almost all of them, and essentially hid away until the human smoke cleared.

I just don't get it. I complain about how lonely life is right now, how routine, and when there is a break in the routine and a large group of folks with which to interact show up, I just wanted to be alone.

Now maybe, just maybe, the evening didn't start out that way. Looking back, I think I did OK in the beginning. But I sat outside snapping some photos of kids coming to the door and walking around the neighborhood, that Thing started gnawing at me mentally. That Thing that starts comparing Bennett to other kids his age. That Thing that examines and compares what he can't do to what all the other kids his age CAN do.

On a daily basis, I am faced with that corner. I am not at a point yet where I have solid, tried-and-true coping mechanisms for this. Some days I can avoid turning it, be positive, and focus on the Good, not the Bad. Most days? I can't. Yeah, I'm a pussy for admitting it, more of a pussy for being unable to do it, but that's the truth, and I am at the very least able to be honest about my own shortcomings.

But when I turned that corner Saturday night on Halloween, that was it for me. And it was around that time I looked for an exit, which was in my case going upstairs to my loft office and hiding out on my computer. Even at the end, when it was just Jen's parents, I avoided eye contact, even with my wife.

Christ I'm a weird sumbitch.

Anyway, that was my Halloween, such as it was. I was a shitty host, way too hung up on the negative about Bennett than the positive, and unable to break through that barrier yet again. A lot of parents read this blog who have kids with delays, cancer, severe conditions, and a whole assortment of special needs. Hell, I read a lot of their words. Read a lot of them about Halloween too. Sounds like some good times were had by many, but some not so much.

They're an admirable group of people, and they are doing a helluva lot better job than I am managing their own personal demons. Of course, I shouldn't really compare, but I do, I think we all do. But that only compounds the problem. At least it does for me.

I hope all of you had a fun Halloween, many of you were in my thoughts. But had you been here, I'd probably have been an asshole to you too.

Tomorrow's another day. Tomorrow's another day. That's what I gotta keep telling myself.



  1. This place here,was I am certain, a place for you to, first and foremost, share.Be it your hobbies,your job,your collections or your family.There can never be a right or wrong way of sharing because this place here is yours.Your stuff.You struggles.Your joys and everything in between.No need for validating the why's or for the comparisons.I hope that no one who reads this,judges.Some might and oh well.That will always be the case when you open yourself to the world.I have actually stood on both side of that.I wish I had words or the magic pill or the perfect fix.Me,I just put one foot in front of the other each day and some days are better then others.Some days I am proud of how I have handle one thing or another and some days ... not so much.For me and I say for me,my faith is what makes that easier.For others maybe it's yoga or exercising or volunteering.Whatever.The point is,for everyone,carrying a heavy load,our coping mechanisms are all different.Today is a new day.Cliche?Yes.But still true.that is the gift and when all else fails ... there is always football!!

  2. Heather always has a way of lifting me as I enjoyed her comment above. Can't say I know how you feel but I can say i have been in those kinda dark places as a matter of fact the past few weeks it's been pretty dark around here. At least you can say it how it for me too often I sweep it under the rug put on a happy face because that is what everyone expects me to do...and go on my way. Until finally I hit a breaking point and have to face reality day at a time.

  3. I think most of us, those with our sick children, know all too well what you are talking about. I have been there, many days I am still there and I have been in it 2 1/2 years...this Halloween was a bit easier than last year. I too have a party every year, and I have a friend who has a child Hudson's age and seeing her and Hudson in the same room is heart piercing for me. Can't help but think my child was suppose to be among the trick-r treaters, running around, eating candy....that was MY plan...didn't go My way.
    I really don't think there is anything in this world more painful than seeing your flesh and blood suffer, and so I think it o.k. to allow ourselves to go through the "motions" of the result of witnessing this...for me, with time, I make teeny-tiny baby steps, and then some days I fall backwards stepping into huge pity parties...but I try not to stay there too long.
    So my advice...allow yourself time, space, pity-parties, whatever...we all cope differently, and the fact you are aware that depression can suck you in is good thing.

    One day at a time...for yourself and for Bennett.

    I know from posts prayer is not something you rely on, BUT... I do pray for Bennett and your family, and will continue to do so!

  4. Just wanted to say nobody can be up all the time. Give yourself a break. Sometimes sucky things happen and you feel down about it. It's normal. I think you are too hard on yourself. Let yourself be down if you feel down, and I think sooner rather than later you'll start feeling better.

  5. I don't think any of us should be judging you for the way you are coping with this. Everyone works through it differently. Especially in your situation where you have NO guidelines, NO idea what to expect next. NONE. I don't know if I've said it before, but I truly admire your honesty. My aunt, who also has a son with Fragile X like mine, said that it is like grieving. Grieving the loss of the idea of one child and accepting the reality of another. It's okay to not be okay. If you were all sunshine and smiles, I might not believe you! My blog sometimes might seem overly sunny, but I never planned to get pregnant, so I never had an idea built up in my mind of who my baby was going to be -- just being pregnant was a shock. And I had the gift of knowing from the first month of his life that my son had special needs and what that meant. I think the harder times for me (coping with him having a disability in comparison to other kids) will be when he is older.

  6. I've been dealing with my child's "issues" for 20 years now. I'd like to say that after that long of a time, I never have down days, but that simply isn't true.

    I may have learned how to cope and not compare more than the other way around, but I still have my days.

    For me, it's having a 20 year old who wants to do the things a toddler does and watching her have to sit on the sidelines and just watch because her body is so much bigger than her mind.

    Those of us with special kids will always have "those" days so never think you are alone.

  7. I'm lying in bed nursing a sprained (possibly broken) ankle that happened before we went trick or treating yesterday. Despite the long ER visit last night it was a good day. Emma was in a much better place than last year. She loved wearing a costume and was happy running around. She was a lot more there. My coping mechanism was to try and spot children with less obvious disabilities and be attentive and patient with them. One boy took three minutes to get his hand around a piece of candy and I just reassured his mom that all good things take time and we encouraged gently and he got his candy. I could see his mom was as grateful as I would have been at their house in the same circumstances. That's my coping mechanism. Emma was having her kind of happy time and I wanted to ensure the same for all kids.

  8. I'm in a similar place.....I still don't care to be around other children. That may seem harsh, but Maddie's all I've got right now and I can use a lacking immune system due go chemo and this stupid flu pandemic as excuses to stay pretty isolated. It makes it easier for me to do what I have to do to get by right now. Maddie is way too out if it to miss being around other kids; honestly, she never has been around kids except the other cancer kids at the hospital and clinic.

    For me right now, ignorance is the closest I can get to bliss. I don't have other kids to compare too and I've tried to forget the normal milestones so I don't even think about that stuff anymore.

    So I feel your pain. And I think you are funny saying you'd even be mean to us if we were there. Hahaha. Luckily we just hang out online.

    And you blog when you want. If you don't have anything you feel is worth sharing, that's okay. We'll wait. But we may pester you by email eventually go make sure you're ok. I would be if I weren't so damn busy making keto diet meals and begging my child to drink her daily liquid allowance.


  9. We all have our good days and bad days. We all look more together than we sometimes feel. Life isn't fair. Hang in there- the sun will come out again.

  10. Well, sounds like you've already gotten a lot of good feedback here.

    Charlie has a really wonderful therapist whose son has severe autism. He's currently in a full-time facility. She tells me, "some things just suck." These social, kid-friendly things are really the worst in my opinion. I do think it's getting better, though. Like everyone here said, there are good days and bad days--just shoot for more good than bad.

  11. Hey Ken you know what screw what every one else thinks. You live this shit every day. You have every right to be pissed and moody and depressed and sad.

  12. I enjoyed your post...I hope you don't take that wrong...You are raw and honest and it DOES suck....ALOT of the time....A WHOLE lot of the time....

    The comparison thing? You wouldn't be normal if you DIDN'T do it...You can't HELP but do it...It is right in your face all the time...With Carter...The kid next door...Everywhere...

    A dear friend's daughter, Christine, is also developmentally delayed...Colby was well ahead of her in meeting milestones until they turned about three...Then she just took off and left poor Colby in the dust...Talking, walking, potty...It was a cruel joke, I thought...I had secretly celebrated that my son was the "smarter" one...Yeah, right...

    It takes a long, long time to get to a more accepting place....Shoot, I am STILL trying to reach total acceptance, and Colby is 25! In fact, I don't think a parent EVER really "accepts" a disability or illness...You just gradually GET USED to it...

    Just keep trying to push through these darker moments just like you have been...It may not seem like it to you, but from where I am standing, I think you are hanging in there and dealing with things as well as anyone at this point...You are still a newbie, ya know?


    PS: You'd REALLY be mean to us???!!! See? No matter what, you STILL keep your unique sense of humor!

  13. I'd like to say that I know what you are going through, but I can't since I've never been there.

    But, I will say this:

    Take your time and deal with things as you are comfortable doing. I fear that you will always compare Bennett with other children for the simple fact that he is different than the others. And not different in a bad way, he's special. Special in the way that only someone operating with half a brain can be. He'll start reaching those milestones again Ken, and when he does, he'll amaze us all. And then we will all be able to say..."I remember when..."

    Hang in there. As Heather said, when all else fails, there's always football! :) I went nuts this week with no Steelers football.

  14. Yeah, you are wierd...makes you so darn lovable though...
    I hope Bennett and Carter had fun even though Daddy didn't dress up in his Princess Leia outfit...or were you going to be Darth Vader...?

  15. uggghhh, "That thing"!!

    That "thing" has made me leave birthday parties, made me swear i'll never go trick or treating again, made me angry at small children in the store. i think it is natural to have one of those days. We all have those days no matter the sunny disposition we may try to color our blogs in. It's all a matter of accepting our circumstances i think.

    A good friend of mine who has a child with SN, put it best, she said that acceptance is like a great beach house. The first year we may only get to visit a few days, The next year we might get to stay a week. An then with each passing year we get to spend more and more time there. Some of us have just been here in this crappy situation longer. We may have learned how to just suck it up & deal. I wish I would've had C's blog our first year post diagnosis. It would look completely different than it does now. I literally cried everyday. I was angry at the world. So, it's okay if you have bad days & don't want to party & whoop it up. You are only human. With time it is less raw around the edges...most days. =)

  16. It's impossible when dealing with this crap to not have those times...and they seem to really strike on the "big" days when the idyllic notion of what family and life should be is stuck in your head. You know, Julia is my first, and in so many ways I think that I was lucky for that. Because most of the time I have no idea how "typical" kids should be. Sure, I'm around them at times and it's then that I'm reminded how far behind she is, but most of the time I'm not...and I forget. She is just too sweet and clever in her own way. That's probably not super helpful. :)

  17. What about those aweful days you don't even feel like getting out of bed, and just pull the covers over your head, and hide there until the next day comes, in the (dangerous) hope that it'll be a better day.

    We all have them Ken, especially those of us that don't really have a 100% reliable brain.

    But like I always try to tell myself to push forward: "This too shall pass."


A Beautiful Blank Page

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a tem...