So now I can hear back from you

I have changed settings, as some people have checked this out and reported back they couldn't comment. I hope you can now. I do want to hear back from people. That's kind of the whole idea!

So my father had his biopsy, and I spoke with his doctor who described the lesion as being inoperable, but possibly shrinkable with radiation. He mentioned chemo, and I went on about how his health is already wretched, and I doubt that he's willing to change his lifestyle as it is, how can he start chemo? He'll end up having to leave his apartment and go into a nursing home and not have anyone there to hold his hand while he dies. I have to just let go of some of this. There's nothing I am able to do. I can't abandon my kids who need me, and leave my husband who needs my help, for weeks at a time to sit and hold my dad's hand, because he so alienated his family and friends all these years when he was alcohol soaked and did nothing to prepare his life for this stage. I love him, I will help him, but my friend Rodger gave me the BEST advice about dealing with this. Do what I can because he's human and deserves the dignity of being human, but I won't give him preferences that are not his to have because of how he chose to live his life. I'm not saying it right, but hopefully you get the idea.

So school ends next week, and I'll be going away the day after summer school starts. I hope it isn't going to be too hard for my husband to get the little buggers in the car and to their separate summer schools on time. I'll have 2 1/2 precious hours per day to myself until July 20th. Then they're out til after Labor Day. So I need to make a note on the calendar: "RENEW VALIUM RX."

When Duty Calls

My father is in the process of dealing with what I believe will turn out to be a terminal illness. This is not surprising, and has been on the horizon of our family's expectations for years now. From as long as 10 years ago, when his first colonic polyp was found, the grave discussions (via phone) of what they might find would begin. Never did this cause him to cease smoking the 2 packs of unfiltered Camel cigarettes per day. Or adjust his eating habits from high fat, cholesterol, and low fiber to, you know, opposite that. Any time he would come down with bronchitis and have to have a chest X-ray, we'd hear that perhaps they had found a shadow or a mass. But so far none of those came to pass. Suddenly, when he went in for dentures, the dentist refused to pull his teeth due to a massive sore in his throat. Turns out it is quite likely cancer. And a biopsy is planned, lymph nodes are due to be removed, and there are spots on his thyroid. It's all kind of winding up, and bowling down, and the pins no doubt will be falling.

Being the eldest child, I feel somewhat obligated to go and see him, help arrange what I can for now, talk about final wishes, and then wait. There's no property to be dispersed--he is a pauper and on Medicare, Medicaid, welfare, and so on. There's no fabulous relationship between us. For almost all of his adult life, and most of my entire life, he was an alcoholic. He cheated rampantly on my mother, was absent from my life, and left my brother an emotional train wreck that is still proving to be nearly impossible to put back on track. The blessing of diabetes in his life meant he could no longer drink, and upon his diagnosis a few years ago, we were able to begin speaking to one another. A few brutally honest discussions here and there, but mostly the same bullshit he always spewed. But they were still pretty nice. Nicer than what I had growing up. He's a grandfather, and he loves his autistic grandchildren, and is always amazed to hear of their remarkable abilities and gives sincere sympathy when I tell him of their limitations. He tells me I'm a good mother, and I like hearing that from him.

So many of my friends and family are remarking that my making the effort to go see him (he's about 1200 miles away) and begin the process of settling his life is more than he deserves. And that my duty lies in taking care of my husband and kids and not leaving them for some guy who didn't even have the decency to pay child support. That no amount of money spent on my part, time devoted to travel, seeing him in his misery, will fix the past. That it won't make up for anything. That I can't change it now. I remind them: the fixing would have been on his part. He's the one to make up for things. And things are long past changing. Nothing will change now. But he's still human, he deserves dignity and decency in his dying and if my going up there to talk to those who watch over him now to see to these, then I've done my daughterly duty and I will know God will take care of the rest. I will know I did do what I could, to the point that I should, and it's not based on what he deserves, it's based on being decent to someone who, had he the chances to do some things over, I have no doubt he would.

I only wish I could take the kids. I know he would love to see them, and if time and cash allowed, I might. But my son, bless his little obstinate heart, is a runner and has no desire to do what he's told. And while I would love to take my daughter, and I think she'd do very well on a plane and stuff, I just simply have to get things settled too quickly for this kind of thing. I think she'd be a total hit with everyone. This is one of those things that we deal with--how to travel to deal with dying parents when you've got autistic kids. No Uncle Buck to call and see to them. Instead of just arranging for the birthday party, it would be, "You know, Maisy screams if she hears Elmo, but Miles insists on watching it...maybe let her spin in the kitchen while he watches that..." Man, I could remake that movie...

Why do I think my own care is a waste of time?

I'm finally getting a CT scan today that I was supposed to have a few months ago. There was fasting bloodwork I was supposed to get done in February; I just finally got that done on Wednesday. Taking the time to do these medical things seemed wrong to me. I had way too much going on with both of my kids at the time, and I didn't feel right about diverting my time and energy to myself. Why do I feel guilty about spending time on myself? I frequently will make appointments for a doctor's visit, or to get my hair cut, or to go see a movie, and will have to reschedule it two or three times before it sticks. I gave up trying to have Tupperware or candle parties...the ladies who do these as businesses just got sick of my constant rescheduling needs.

Taking time for myself is something EVERYONE says I am "supposed" to do. Making it an imperative doesn't mean I'll actually accomplish it. Making it a "supposed to" just makes sure that I'll feel guilt for not having done it. Guilt--my own family's legacy. We still feel guilty for things my great-grandmother used to say. We still try to make up to each other things said, unsaid, done, undone, overdone, undercooked... And I am still feeling guilty for the way my kids were neglected two summers ago, or because I didn't spend a full 30 minutes reading to them yesterday. Do autism parents feel more guilt than typical parents? Maybe. Especially working autism moms. They get the double whammy of being a working mother (what mother ISN'T a working mother? Trust me, what I do is work!) and being a special needs mom who isn't hovering over their child for every possible chance to make the difference. But I think the autism parents feel a greater yank of guilt for what we choose not to do. The stories we hear of a family that sold their house, quit their jobs, and devoted each and every waking moment to their autistic child seem to shoot arrows into the hearts of us who don't have homes to sell or jobs to quit. And yet, shouldn't we be doing more and more? But at what cost to the rest of the family? So, I can use this kind of logic to force me to go to the doctor. If I am not well, if my health is neglected, how much less of me is there to devote to working on my family's needs? And giving my children all they can for their continued progress?

I have to start drinking barium in a few minutes. I'll stop posting now so I don't feel compelled to write about the texture and flavor of the goop. No one needs THAT.

We'll give this a go!

I have an urge to blog about autism. It consumes me lately, and time I spend doing other things weigh on me and make me feel guilty that I'm not making myself available on the blogosphere to share the journey with others. But then I start, and then I start crying. The tears pretty much just come whenever I say to someone (new or known), "I have two autistic children..." No matter the context, no matter the surroundings, the tears just come. After lengthy discussion with my physician about medications, her response was, "I think you're grieving." Well, yeah, no kidding! But I mean my daughter is almost 7, and she was diagnosed spot on at 2. So am I grieving for the last 5 years? I mean, when do I move on to the other phases of this emotional roller coaster? And besides, I don't agree with the grieving thing. Especially since I seek my doctor's fine medicational expertise mostly around IEP times. I "grieve" about IEPs? I don't think so. I'm sure we'll get more into this soon. But here is a first post. I am looking forward to sharing and talking and maybe someone out there will offer me good words, and I can pass it on to someone else and we'll all be holding hands and singing "Kumbya" soon.