- Work stuff, which I should be doing now
- Insurance stuff/Medical bill stuff: where to even begin?
- Quinn appointment stuff
- Dust Storm stuff: logistics
- Dust Storm stuff: publicity
- Dust Storm stuff: get the show back on its feet
- Thank you notes from holidays
- Catch up on sleep
- Deposit a check
- Valentine's Day stuff
- Clean up holiday decorations
- Bunch o' stuff from to-do lists scattered around my desks
- Oil change for my car
- laundry stuff (always)
- Update Internal Monologue to the new templates
- Return The Tudors season 2 disc 1 to the video store (too impatient for the NetFlix!)
- Suff that should be fun but can feel like an obligation anyway (D&D campaign 1, campaign 2, campaign 3, getting my new GPS to work, setting up my laptop as my main computer)
Somehow the balance is out of wack and my time feels like walls are closing in on it all the time. Just recently evening has seemed to become incredibly short. The time between when obligations are filled (or just pushed aside) and when Quinn's schedule demands I go to sleep seems to have collapsed into a barely over an hour strip of time spent in a sleep-deprived daze avoiding things I "ought" to be doing.
Being a father really blows sometimes. I love my family, but it is a snake pit of obligations and duties that are incessant and unfulfilling. And I didn't feel that way before Quinn. I used to love being at home with Sarah. We would cheer everytime we came back home from somewhere, even if it was a vacation, because home was so wonderful, so safe, such a place of renewal and rejuvenation and comfort. No longer. I used to never understand why people avoided their homes by spending so much time at the office. But god, this place, with all its dysfunction, is so much quieter and safer and attuned to my needs.
Everyone who has raised children deserves a fucking medal or three. I feel like race car that's been pressed into service as a dung hauler. I feel like I should go around wearing a sign that reads "NOT OPTIMIZED FOR THE CARE OF OTHERS". But who would read it or be able to heed it? Sarah's as busy as I am, so I can't fairly ask her to do more. And Quinn doesn't give a rat's ass what I'm optimized for or how much sleep I need. I've never had to be around someone so needy for so long. I've always been able to get the hell out of miserable situations before, to close the door to my room and tell the world to go fuck off. Oh, for the ability to do that now!
For an introvert, there is nothing more scary than another person whom you can't get away from, who can take away any quiet moment, interrupt your sleep, demand your attention, and is 100% designed by nature to insist on his own needs being met and to be utterly oblivious to yours. And the kicker is, because of Quinn's Fragile X, I don't know when the fuck it will end, if ever. I suppose we can move him to a group home or something at some point. Or maybe we should move me to a group home.
I used to fantasize about affairs with attractive women who were extremely eager to cater to my sexual proclivities. Now I fantasize about having an affair with a woman who travels extensively and lets me use her very quiet, empty apartment to curl up with a good book and a cup of tea and then sleep uninterrupted for nine and a half hours.
Maybe drugs are the solution: the purpose of pain is to let you know that you should get out of the pain-causing circumstance. But if one cannot do that without shirking one's moral obligations to one's family, doesn't it make sense to use pharmaceuticals to enhance one's mood? A pain signal that has to be ignored is really just distracting noise, and should be eliminated, no?
Or maybe there are other things in my life that are going to have to give way. Work? Play? The energy it takes to pretend I give a fuck about other people? What lamb is next to have its throat slit on the gore-stained altar that is "caring for a special needs child?" The knife is out, the god wants another sacrifice, and his wrath is terrible to behold.
I better get back to work, I have to leave by 3:30 to pick him up from school.
Sigh.
12 comments:
Wow, so many things you said I have going on in my life right now. You have touched on a subject that so many of us feel.
Yes, I agree, parents should get a medal.
I feel your frustration, but only to a certain degree. I am just beginning to understand the difficulties of a special needs child, through my sister in law, who has an autistic son. I don't think I can ever really fathom it, since I don't live with the problem. Sometimes when I am having a difficult time with one of my boys, I think of how magnified the situation must be for a parent with a special needs child. Society, just doesn't understand either.
I can only imagine how you must really need to escape some how and the frustrations you must feel.
Coming here to vent is a good thing, sometimes writing can help ease up some of the pain or tension. I hope you and Sarah can find peace soon.
Sincerely
Melissa
Take care.
PS- I enjoy reading your blog, very intelligent and well written.
Sounds like you are having a very tough week. I can;t imagine what a handful Quinn is for you guys.. as I am just getting used to the new baby thing, and juggling the various doctor, therapy, other appointments is a handful, and I feel overwhelmed sometimes and I am not working. You guys amaze me and seem so put together. But if it is one thing I have learned so far, its that yes you have to sacrafice and yes you have to cut.. For all kids, but more so with Special Needs, that said... you need "me" time too and have to find a balance. I hope that your new qualification for respite care will help you towards this balance.
Zac got some more sleep last night...hopefully he'll have a better day today. Right, honey?
I don't want people to be scared. I'm not going to do anything crazy. But at times maintaining the facade of normalcy is so tiresome I just have to cut lose with a rant.
Also, things are very difficult for me at work right now, and that's exacerbating difficulties I have at home.
I really appreciate your honesty. Thank you. I know I've felt this way. I think the lack of sleep was/is the biggest issue for me. I cannot wait for you to get respite. The only part that's hard is that sometimes you want to be the one home and your child to be the one out. Also, I love my meds. Can't function without 'em! =)
Zac, I totally hear you. I know that I don't have a special needs kid, so my burden is far less than yours, but I have had moments myself when I've fantasized about just walking out. It's HARD to raise kids. It's HARD to have no time to yourself anymore. It's HARD to give up so much of yourself for someone who isn't really capable of giving back anything. Anytime you want a live person to say "yeah, that totally sucks!" you can call me!
I think we have all been there, some days/weeks (who the hell am I kidding?) some MONTHS are like that. You just get through, you'll see. It might not be pretty but you'll get through.
And, look, FX is not a progressive condition. He's not going to get any more dependent than he is right now. In fact, you can count on the fact that he will get more independent. Of course, no one can tell you what that will look like in the end and that is so incredibly frustrating but it WILL improve.
Someday he will get his own breakfast and take his own baths and even wash his own clothes...these every day practical skills are the things our kids excel at. My little guy can totally amuse himself for up to an HOUR now. I never could even have imagined that a few years ago and I make sure to take total advantage of it.
It does get better--much better. I didn't realize how much freedom I had gained until, well, it got taken all away again when I had Evan.
Thanks for your comments and support everyone. It means a lot to me and to us as a family. I'm feeling better about things today. Last night was Dungeons & Dragons night for me, and Sarah my wonderful wife took care of Quinn for me while I played. So that definitely helped get me out of this funk I'd been locked into for a couple days.
One of the things I like so much about your blog is your honesty and the type of things you talk about. Sometimes I wish mine was more like that, but all of our relatives read it and they would be jumping on an airplane if I even cut loose and had a rant. So while I don;t cherry coat everything, I can;t always be as frank as I would like ot be, and sometimes in our writing, we are so much more extream then the situation because we are processing.
PS I gave you guys a Luvey Award, stop by to check it out.
I don't work outside the home but I still feel the way you do.. I feel guilty sometimes for wanting a break from the kids.. I've let things go to the point where I have been hospitalized for loosing it... Thank you for being so honest in your blog.
Whenever I have gotten this way in the past, I discipline myself to sit down and write a gratitude list...it gives me a different perspective and cools me down as i focus on something else....some days i write a small five-item list, other days require a twenty-item list...it does get better! I have three children with FX myself. It's not easy! But I love them with all my heart...they are my teachers!
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