Jan 2, 2009

New Years Eve, Sky Dad style...

It is pretty damn hard to find somebody to watch Skyler for us in order to get out on a typical night, so we didn't even try on New Years Eve. Kathy has a friend on her Masters swim team that has a new years eve birthday, so they did an early celebration with her. They all met for a late afternoon of treat-eating and funny present exchanging, from 3-7 or so. Then Kathy comes home and I have Skyler all fed, bathed, and in bed. We tag off and I go to a party that my gym rat friends are having from about 7:30 to 10. Then it is home to bed because there is no such thing as sleeping in in our lives.

As I was chatting with friends at the party, I couldn't help but look around the room and listen to all of the conversations about normal things. Whose kids are going to what college, or are preparing for school, where different folks went on vacation, and what is going on in the lives of people who live the "normal" daily grind.

I was kind of struck by the fact that there is never going to be a normal day in my world, Skyler isn't going to college, much less find a career. The best we can hope for is to find a place that is accepting enough to let him volunteer.

There won't be a vacation, not in the go someplace to relax sense, because it is even more difficult to get Skyler on the road than it is to care for him at home.

I don't normally envy others lives, but that night I really did. Then a well meaning friend started quizzing me on what is going on with Skyler, asking several times what are we going to do with him, what will he do when he is out of school, how will we take care of him when we get old... I just kept saying that it is kind of one day at a time, trying to extract myself from this conversation I didn't want to have.

So, I excused myself and left. And then the next day called the host of the party and apologized. So I guess 2009 didn't start off too well, but I am sure it will get better. Time to stop feeling sorry for myself and get to painting the bathroom now! The fun times just don't end! ;^)


  1. You could move to Greece...

  2. Hmmm... I'm left in the peculiar circumstance of wanting to say something but not having a clue what...

  3. My heart goes out to you. My brother-in-law had a brain tumor removed 7 years ago and my sister retired to take care of him full time last year. She's 45. The things she goes through everyday just floors me.

  4. Wow. Sometimes it's harder to deal with the "well-meaning" friends than with the rude idiots. At least you can be rude back to the idiots, but when they are well meaning friends, you don't want to fly off the handle at them. Sorry they were too clueless (or too drunk?) to recognize your "I don't want to talk about this" signals. Hope the rest of the year goes better...

  5. Anonymous3:34 PM

    Oh, man.

  6. Let's all move to Greece with Flannery and live out our days being kissed by the sun and asking her not to sing so loud! That might help?

    Sounds like a rocky beginning but at least the blog lets you clear those rocks out of the way a little, I hope anyway.

  7. Ok.. I give you a challenge. Define "normal" Your life is very normal for you and your family. If you mean different, then yes, you have a different life from others. You are doing the very best you can and judging from your sense of humor throughout your blogs, I say you are doing rather well. Keep up the good work!

  8. Some times, it's okay to run away!

    A belated Merry Christmas and Happy New Year to you Skydad - I've been up in the mountains without the internet, if you can believe that!

  9. Sky Dad, that absolutely SUCKS! It's not fair for you, Kathy nor Skyler! And it just makes me want to punch something (so here's hoping my exhusband elects to pay me a visit today - then I can take it out on HIM. Heh heh heh)! I certainly imagine you feel the urge to punch things more intensely than I do! And I say, DO IT! Take up boxing! Get it all out! Sometimes life sucks for no good reason, damn it! You guys do not deserve that! UGH!!!

    (sorry I spent the whole comment yelling. I just feel your frustration radiating through my computer. I'm so incredibly sorry for all you go through. Now, seriously, go get a punching bag - or let me loan you my exhusband (actually, that might be good therapy for both of us I think! What do you say?! :-)).

  10. You started the year with an unfinished paint job in the bathroom.

    You selfish bastard!! lol

    Its ok, i haven't mowed the lawns for several weeks.

    Oh, in other news. The traveling blogcard arrived in Australia.
    Thanks for your addition to it.


  11. C'est la vie. But look at it this way, you have blessings that come in the form of things Skylar has taught you that most people never get to experience. You have a great wife who supports you and loves you. You ain't doing too badly my dear ;)

  12. Well-meaning friends aren't always the brightest. I've certainly been on both sides of that.

    It's best to live day to day as no one ever knows what could happen tomorrow. I wish you and your family a great 2009!

  13. I could be mistaken but I thought agencies/caregivers are available for families that have people that need 24 hour care...the agency will provide a caregiver for a few hours so the family caregiver can have down time and prevent burn out.....might be worth looking into. Perhaps you had one bad day....your blog certainly reflects the intense love and care you give to your son....you're entitled to feel sorry for yourself once in awhile....

  14. chris

    i know how awful well meaning friends can be - but you handled it well.

    i know sometimes it is hard to realize that as tough as it is - there is always a blessing on the other side -- for you, kathy and skyler as well

    and as much as those other people brag about their kids - the grass is always greener. no one gets through life unscathed

    you and kathy are what this country needs more of -- people that care. and it is so ok to feel sorry for yourself once in a while

    may 2009 get better than it started

  15. There are parents that would simply institutionalize their child if they had Skylar's condition. That you have not done this is a tribute to the compassion of you both. I cannot properly express my admiration without sounding phony so...take it as given.

  16. I think people just don't get it. One of my brothers has very severe cerebral palsy, and when he was very young, an Upwardly Mobile Couple adopted him, saying, "We'll take him on ski trips and stuff!" My parents tried to inform them that this wasn't really going to work, but they insisted it would via the Magic Of Positive Thinking.

    Naturally, they returned him (sans receipt, which was tacky) about a month later with a confused, "You can't do anything with him."

    Again, people just don't get it. Here's hoping 2009 picks up its slack thus far, sir.

  17. I share the views of many of the other commenters. Having followed each other's blogs for some time now, I can say with much assurance that you are a quality guy. You have sacrificed a lot to give Skyler the best upbringing possible. I suspect there are countless ways he has made you a better person as well. It's completely understandable if you don't feel like discussing it with others.

    So, how's the bathroom look?

  18. whoah, jeez... I... Uh, I know all 'bouts this, but I sorta ESCAPED all that, if you take mah meaning.

    My gal Spooky has a theory about this-- it has to do with reincarnation and The Soul and people who have disabilities have CHOSEN to come to earth, and etc etc etc. The idea, then, is that perhaps Sky CHOSE YOU to be his parents long before all of this was written down, meaning you're one helluva guy (and a lot better Dad than *I* am) and that everything is evolving as it should...??

    And you know, man, if I lived closer I'd be RIGHT THAR fer yew and *i'd* "babysit" in a heartbeat!! (mind, you might come home to find BOTH of us passed out in our underpants with the Girls of Playboy in the DVD player, but I'm just sayin' that I'd offer anyway...)

  19. Anonymous10:23 AM

    Key element from your post: "...a well meaning friend..." I'll bet they were very, very well meaning. Those questions are plaguing you daily, aren't they? It doesn't help to have someone else add to the questions. It couldn't hurt to tell someone that in a nice way. Like, "Hey, those are questions we have every day. 'Cause it is a real concern. That's why I every once in a while I try to not think about it. I'm going to go grab another beer - then let's talk about you for a while."

    By running out of the party you cheated yourself out of some fun. That's not healthy for you.

  20. It is tough.
    This is a testing place not a resting place i have heard. But still it is tough