Rise to the Occasion
What the hell else am I to do? What are the choices? Will someone please tell me.
My daughter is really messed up. All those retarded words I am not allowed to say anymore, and they apply to my son as well. Two completely and totally messed up kids. And what about you? You read this blog, the majority of you have kids as f’ed up as mine.
How do we do it? People are always giving me this bizarre praise. “You’re such a great father” … “I don’t know how you do it” … etc. Like I have an f’ing choice? Last I knew, filicide was illegal. Yeah, maybe you don’t know that word, but you know the thought.
Have I ever thought of filicide? Even on an anonymous blog, I hesitate to answer. Do I really want the LHC to cause a black hole and have life as we know it end in an instant? I still say “cool!”
Do I like my life? Yes, generally I do, a lot. Is raising Pearlsky alone an incredible bitch? (the raising, not the girl!) Yes. Do I have a choice? Did I “rise to the occasion” or am I just a poor sucker in a sucky situation?
And you?
Maybe happily married, maybe divorced, in a crappy marriage because your spouse is jealous of the time and efforts you put in to keep your kid alive, in a crappy marriage because your spouse won’t accept the kid for who s/he is (or isn’t), maybe just always single, and you have a really f’ed up kid. Seizures, puke, poop, IEPs, school nurses, home help or lack there of, feeding issues, tears, screaming, snot, no sleep, embarrassment, shame, fear, and more. And social workers. Don’t forget about the social workers.
You persevere. You survive. We do what we have to do.
Does it make us better people? Would it be better to just leave? Let someone else deal? Filicide? Filicide – suicide? Residential program? Witless protection program?
No, we rise to the occasion. Are we as good parents as people say we are?
Were the fire fighters that ran into the towers “heroes”? They were, in fact, just doing their job. Were they just poor schmucks who died doing their job? Did they rise to the occasion?
Are we great parents or poor schmucks? Heroes or suckers?
I adore Pearlsky. I love life (let’s keep that a secret, ok?). I love my son, and miss him terribly. I parent the best I can. Sometimes I suck. Sometimes I rise to the occasion.
And you?
I’m so high to the occasion that I’m hovering.
You know, the saddest part of it when parents do kill their disabled kids (and you know they do), is that no one gets why. They think it’s cause the kids are retarded and sick and the parents just lose it…but it’s the system parents have to deal with day in and day out that is retarded and sick. “There but for the grace of god…”
Yes, you have done something special. Not all parents make the choice you did. I know many, many parents who gave up their children to the state or put their children in a facility, because they did not want to take care of them. Their is a home near one of my kids’ school that takes care of severely disabled folks. I pass it every day. So, yes, you have a choice, and you have made it, as all of us have made who have chosen to care for someone who is disabled.
It is not an irrevokable choice either. Close friends of ours have placed their 20 year old daughter into a group home after keeping her home all of her life. Five years ago, they declared this would never happen. They’ve changed their minds. You may change yours in the future.
A difficult step is to have arrangements in the works as to where your daughter should go if something should happen to you and you cannot care for her. Like if you should die suddenly. A heart attack that my friend had was what really made the decision to start transitioning their daughter to another place.
Completely agree with Cath. What you’ve done is something truly special. Not everyone is capable of making such an honorable choice.
This is one of your best posts, SD. (And that’s saying something.)
All in judgment of yourself and others judgment of you. Wondering if this is necessary.
I sometimes wonder if it would be easier if we had less time to think about these things…
Rising to the occasion – that’s usually in reference to a difficult but transient situations, I don’t think anyone could do that all the time.
Emma: But what choice do we have?
Thank you all for the great words. A day at a time, no?
I think it’s important to take the time to think about these things. It’s not like you came to grips with her challenges at age 6 and you’re done. I think the nature of grief changes as time passes. Every year she’s not experiencing a typical girl’s life is every year that you’re not experiencing a typical dad’s life. It’s a kind of ongoing loss in the background and it can be extremely difficult. I don’t think you ponder it all of the time (why me?) and you don’t seem bitter and have managed to retain your good humor, but if you’re like most people, it creeps up now and again (like in your recent lists), sometimes in the most emotionally charged ways, and you remember what you’re missing and you wonder where you’re going.
You know why it’s hard to just say “I’m a good dad”? The same reason why it’s hard for many in present company to say the same thing about their own parenting. Your child’s challenges persist and it’s unclear how much ‘progress’ she has made under your care. When you can’t see your child’s progress in a certain concrete way, it’s hard to acknowledge that you’re doing something extraordinary. Compact that with the fact that we’re human and we have feelings that there’s always something more we could have done and tried, and knowing full well there are days when we’ve been sucky parents… it can be very hard to just admit ‘okay, I’m doing a damn good job and I’m doing what most people don’t and wouldn’t be able to do.’
You might feel like a poor shmuck at times and I don’t blame you if you do, but you’re also your daughter’s hero. It really doesn’t matter if you did what you did because you were supposed to or not, wanted to or not, with the right feelings and attitude or not. The fact is you showed up. You’ve been there for her. You have been a dutiful father who loves his severely disabled daughter in the best way he can. Not everyone could do that. You rose to the occasion.
most days I feel like a poor schmuck haven gotten the crap end of the stick. But, my daughter having been dealt even the crappier, other end.
While I don’t dream about filicide, I sometimes fantasize about basically what your ex did – just walking away from all the responsibility and starting over again fresh.
Aidel. I could not understand why some of my family just won’t engage about my son. Unless it’s some good news, often with no mention of my son, they just don’t and won’t engage. I love those family members but they are just not capable of facing our situation with my son either because they don’t know how to or because they aren’t strong enough. I don’t mean any disrespect but as the saying goes, out of sight, out of mind. What I am trying to say is. I don’t blame anyone for walking away because it’s so so hard and it takes a certain kind of person. But anyone who stays and shows up… well. If I were God, I’d give them a place in heaven.