I am just so darn envious of the Mamas who work for health insurance companies.
Seriously.
You see, none of those Mamas have a child with special needs. I know. Can you believe it?
But it must be true because they are Mamas. And if even one insurance-company-working-Mama had wept over her child's harder, slower time; if even one insurance-company-working-Mama had worn ruts in herself thinking that surely she did this thing that harmed her child, if even one of these Mamas had a child with special needs, or even if they knew a child with special needs, those Mamas would surely fix the insurance thing so that the child got treatment--early, affordable, and appropriate treatment.
Mamas are like that.
Yes. Yes, I do know how the world works, but This is My Son and He is Five Years Old and He Deserves Treatment.
Come on now.
Wednesday, February 25, 2009
Wednesday, February 18, 2009
Tuesday, February 17, 2009
I Got Nothing
Just don't know anymore. Is it that I am wading deeper and deeper into this muck and will soon be sucked under? Am I grieving? Am I weak? Selfish? (if you must respond, go with rhetorical. I am rather taut just now.) When did this pall fall so hard?
Like I said, I got nothing. Don't know. Am concerned.
Started crying last night just thinking how it was--before LRHF's dx, before Mom's decline, before dh's schedule made my days bottomless holes full of little boys who need me, but get--but get a me so tired, so freaking tired that I am either dumb or I am screaming.
"Every day hurts," I tell dh, "I dread every day."
There's no medicine for this shit. No SSRI combo will take away his schedule, our stress, my grief.
"Well, you still sound depressed," Doc says.
Yes. Yes, I am still depressed.
I cry. I scream. I have nightmares. I don't know how to do anything else. I ache. My bones are concrete. My nerves are spun glass. What color is joylessness?
Jesus, this is how it is. This is not a bad day, or a bad week, or a period of sadness and/or hopelessness lasting more than two weeks and please consult your doctor. This is it. I don't like this it, but no one has asked f0r my opinion. How did I get so tangled up and torn?
If I could say, "Oh, _________ will end...Oh, once ___________ happens, it will get better, Oh I just need to get past ___________," that would be a different kind of woe. This is woe without end. (amen).
"What would you change?" Dh asks.
"Nothing that can," I tell him.
Laundry piles up. People say that laundry isn't a big deal. Let me tell you right now, that it is a very big deal if no one has socks at 7 a.m. Shopping doesn't get done. "I will shop," Dh tells me. Sometimes he does. Sometimes. Dishes congeal. No one cares, people say. I care. I am here and it is my job and it still doesn't get done. None of it. This is the job I chose, and this is the job I would sooooo lose in any other sector. And it pisses me off that I can't get to anything anymore. Nothing necessary gets done and so nothing soothing gets done. No dirt. No quilt. No painting. No bread making. And I am always screaming in my head. Or at the children. Which is the greater sin? I got nothing.
I tell Dh that he and the kids deserve better. They do. Really fine people, all of them. And I am failing them.
"Go away for a week," Dh says. "Take a break."
And come back to...done stuff? I don't think so. I did not fall off the Mommy Truck yesterday and I have "taken breaks" before, and believe you me, you pay for those breaks with loan shark level interest. No thanks.
It's not like I had years of fairy-dancing in flowery meadows before all this, you must know that, right? My real job stressed me out. My heart got broken a few times. I got lonely.
But it wasn't like this. This frightens me. I want to turn away from all of it. All of it. Like Anne Sexton.
Please know that I won't. I would never. I have been one of the left-behinds. And also I am devilishly selfish about my children and husband. But I must say that I sort of understand the concept now.
Like I said, I got nothing. Don't know. Am concerned.
Started crying last night just thinking how it was--before LRHF's dx, before Mom's decline, before dh's schedule made my days bottomless holes full of little boys who need me, but get--but get a me so tired, so freaking tired that I am either dumb or I am screaming.
"Every day hurts," I tell dh, "I dread every day."
There's no medicine for this shit. No SSRI combo will take away his schedule, our stress, my grief.
"Well, you still sound depressed," Doc says.
Yes. Yes, I am still depressed.
I cry. I scream. I have nightmares. I don't know how to do anything else. I ache. My bones are concrete. My nerves are spun glass. What color is joylessness?
Jesus, this is how it is. This is not a bad day, or a bad week, or a period of sadness and/or hopelessness lasting more than two weeks and please consult your doctor. This is it. I don't like this it, but no one has asked f0r my opinion. How did I get so tangled up and torn?
If I could say, "Oh, _________ will end...Oh, once ___________ happens, it will get better, Oh I just need to get past ___________," that would be a different kind of woe. This is woe without end. (amen).
"What would you change?" Dh asks.
"Nothing that can," I tell him.
Laundry piles up. People say that laundry isn't a big deal. Let me tell you right now, that it is a very big deal if no one has socks at 7 a.m. Shopping doesn't get done. "I will shop," Dh tells me. Sometimes he does. Sometimes. Dishes congeal. No one cares, people say. I care. I am here and it is my job and it still doesn't get done. None of it. This is the job I chose, and this is the job I would sooooo lose in any other sector. And it pisses me off that I can't get to anything anymore. Nothing necessary gets done and so nothing soothing gets done. No dirt. No quilt. No painting. No bread making. And I am always screaming in my head. Or at the children. Which is the greater sin? I got nothing.
I tell Dh that he and the kids deserve better. They do. Really fine people, all of them. And I am failing them.
"Go away for a week," Dh says. "Take a break."
And come back to...done stuff? I don't think so. I did not fall off the Mommy Truck yesterday and I have "taken breaks" before, and believe you me, you pay for those breaks with loan shark level interest. No thanks.
It's not like I had years of fairy-dancing in flowery meadows before all this, you must know that, right? My real job stressed me out. My heart got broken a few times. I got lonely.
But it wasn't like this. This frightens me. I want to turn away from all of it. All of it. Like Anne Sexton.
Please know that I won't. I would never. I have been one of the left-behinds. And also I am devilishly selfish about my children and husband. But I must say that I sort of understand the concept now.
Saturday, February 14, 2009
Just Waiting on my 30 Pieces of Silver
Submitted my super (and completely un-) secret documentation of mom's visit to her doctor as directed. Or, rather, I emailed it to my dad and he submitted it because I just couldn't send all that crap directly to a stranger.
You see, I told on my mother. Laid out her secrets, one by one, day by day. I kissed her on both cheeks and now they will surely come for her.
It would appear that my mother is only able to function as a result of my father's constant vigilance and well-honed sense of I-Know-What's-Rightiness. It would appear that way because without my father, she is just simply un-able. Unable to what? Well, it's all right there in the document, and frankly, you should probably be on the lookout for a copy because my father is forwarding it around like one of those 'This is Cute' emails. And this, this horrid thing that is scraping my mother away from the inside out, is not cute at all.
She's been gone a week today and my anger is becoming soft and grief-y. Well, you would be angry too (maybe) if you had to hide food and tape containers shut and guard your kids' snacks (vocab: perseverity/eating disorder--elderly onset) and double check the doors and gates left open and listen to endless lies (vocab: confabulation) and accusations that your LRHF stole her watch. And you would especially maybe be mad if you, somewhere in the back of your head, thought that When Mama Comes It Will Get Better. It was not better. It was her making kids cry at the birthday party because she wanted to Huuuuuuuug them. It was her ignoring her beautiful grandchildren unless they were packing graham crackers (vocab: apathy) . It was her describing her father's death (suicide by gunshot, btw) to your children in lurid detail while you did everything but gag her to stop it (vocab: comportment and insight, executive skills). God save me, it was her wanting to pray over LRHF so that he might be healed. Healed. (See prev. entries regarding how he's glorious and I am a mess) I could not bear for LRHF to hear what she might say during this over-praying thing(No vocab for that, but boy, it pissed me off something fierce). It was her no longer able call a light a light or a bowl a bowl (vocab: agnosia).
It was her no long able to be her. I know that. I do. We both know that I am slow at these things. And dh is a bit alarmed because my therapist dared to scheduled major surgery just prior to the visit. Poor dh. You and I, we have danced this dance before, but him, he worries.
And here's the thing: For all that I did what was asked of me, for all that I checked and double checked and worded and reworded to drain every last drop of drama from it, for all that I swear up and down before you and God that yes, it sounds crazy, but yes, it did all happen, and finally for all that I only did it so that she might be treated and thus be Grandma, for all that, I ratted her out. Betrayed her. She is livid and bewildered (when she remembers). Her doctor is, as my dad put it, "pretty shaken." Great. Just Great. I would like to speak to a manager please. Surely, there is someone in charge.
And also, can I get directions to the nearest Potter's Field on Mapquest?
But you must understand, I knew her when she was. When she was giving me her wedding dress as my own. When she was giving BRHB his first bath because I was bloody terrified. When she assured me that "twins are a good thing" and "we'll get through it." When she called me at the NICU when Fuzzy was intubated (5 years ago today) When she cooked and cleaned and ironed and yelled at me to "keep nursing and they'll be okay." These, you see, are just the tip of the was's. Just the ones out in front in this one tiny bit of scribble. There are so many--God, how I do wish that had been my task, handling the was's and not the is's. Because then you would laugh and nod and think to yourself, "Oh, LAH's mama, she was something else, that is for sure."
And she was.
You see, I told on my mother. Laid out her secrets, one by one, day by day. I kissed her on both cheeks and now they will surely come for her.
It would appear that my mother is only able to function as a result of my father's constant vigilance and well-honed sense of I-Know-What's-Rightiness. It would appear that way because without my father, she is just simply un-able. Unable to what? Well, it's all right there in the document, and frankly, you should probably be on the lookout for a copy because my father is forwarding it around like one of those 'This is Cute' emails. And this, this horrid thing that is scraping my mother away from the inside out, is not cute at all.
She's been gone a week today and my anger is becoming soft and grief-y. Well, you would be angry too (maybe) if you had to hide food and tape containers shut and guard your kids' snacks (vocab: perseverity/eating disorder--elderly onset) and double check the doors and gates left open and listen to endless lies (vocab: confabulation) and accusations that your LRHF stole her watch. And you would especially maybe be mad if you, somewhere in the back of your head, thought that When Mama Comes It Will Get Better. It was not better. It was her making kids cry at the birthday party because she wanted to Huuuuuuuug them. It was her ignoring her beautiful grandchildren unless they were packing graham crackers (vocab: apathy) . It was her describing her father's death (suicide by gunshot, btw) to your children in lurid detail while you did everything but gag her to stop it (vocab: comportment and insight, executive skills). God save me, it was her wanting to pray over LRHF so that he might be healed. Healed. (See prev. entries regarding how he's glorious and I am a mess) I could not bear for LRHF to hear what she might say during this over-praying thing(No vocab for that, but boy, it pissed me off something fierce). It was her no longer able call a light a light or a bowl a bowl (vocab: agnosia).
It was her no long able to be her. I know that. I do. We both know that I am slow at these things. And dh is a bit alarmed because my therapist dared to scheduled major surgery just prior to the visit. Poor dh. You and I, we have danced this dance before, but him, he worries.
And here's the thing: For all that I did what was asked of me, for all that I checked and double checked and worded and reworded to drain every last drop of drama from it, for all that I swear up and down before you and God that yes, it sounds crazy, but yes, it did all happen, and finally for all that I only did it so that she might be treated and thus be Grandma, for all that, I ratted her out. Betrayed her. She is livid and bewildered (when she remembers). Her doctor is, as my dad put it, "pretty shaken." Great. Just Great. I would like to speak to a manager please. Surely, there is someone in charge.
And also, can I get directions to the nearest Potter's Field on Mapquest?
But you must understand, I knew her when she was. When she was giving me her wedding dress as my own. When she was giving BRHB his first bath because I was bloody terrified. When she assured me that "twins are a good thing" and "we'll get through it." When she called me at the NICU when Fuzzy was intubated (5 years ago today) When she cooked and cleaned and ironed and yelled at me to "keep nursing and they'll be okay." These, you see, are just the tip of the was's. Just the ones out in front in this one tiny bit of scribble. There are so many--God, how I do wish that had been my task, handling the was's and not the is's. Because then you would laugh and nod and think to yourself, "Oh, LAH's mama, she was something else, that is for sure."
And she was.
Thursday, February 12, 2009
And another thing...
Lest you fret that the I don't know God when I see Him--
Daffodils! Solstice-light Bright Daffodils!
And this--
My boys, my three maddening, quirky, spectrum-sprinkled boys running just to see the flowers.
Seriously, who knew the Valley of the Shadow had Daffodils?
Dear John Letter
Dear John,
How lovely that you should stop by. Counting you, that makes three.
Come on, you had to know it would be interesting. Yes, that's a good word--
INNNNNNTERESTING.
Anyway, welcome, Dear John.
hxhxhL
How lovely that you should stop by. Counting you, that makes three.
Come on, you had to know it would be interesting. Yes, that's a good word--
INNNNNNTERESTING.
Anyway, welcome, Dear John.
hxhxhL
Wednesday, February 11, 2009
More Vocabulary Words
1. Confabulation
2. Frontotemporal (sp?) lobe disease
3. Executive Skills
4. Insight
5. Comportment
6. MME for dementia screening
I know, the waiting is the worst. Let me say that I had no freaking idea it was this bad, and you know what damned a ray of sunshine I am.
Saturday, February 7, 2009
Seems I can't be left alone for a split second
After LRHF's evaluation, we had a few days to prep for the twins' 5th bday party AND for a visit from my mother and godmother. Not sure exactly what's going on w/my mother as far as diagnosis, but her decline makes Spectrum look positively benign.
Wow.
If you want a headstart on the tone of the visit, look up Perseverity, Agnosia, and Elderly Onset Eating Disorder. And that's just off the top of my head (no pun intended). I don't even know what to say about the constant lying that comes along for the ride.
They really don't make brains like they used to.
Wow.
If you want a headstart on the tone of the visit, look up Perseverity, Agnosia, and Elderly Onset Eating Disorder. And that's just off the top of my head (no pun intended). I don't even know what to say about the constant lying that comes along for the ride.
They really don't make brains like they used to.
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