Wednesday, October 3, 2012
Thursday, September 6, 2012
Strike 3
Hello good people.
My name is Mollie and I haven't had a blog post in four months.
My last post was written under the influence of Dilaudid, which I LOVE by the way, and I ended up spending 8 days in the hospital and the better part of a month recuperating from that medical mystery. They initially thought Crohn's, then they changed their minds, then they came back to Crohn's, then we did test upon test upon test and I swallowed a tiny Asian cameraman (long story) and 56, 000 pictures of the inside of my digestive tract later, they told me there was nothing wrong with me.
Obviously "they" have very little psychiatric training.
So, for the past few months I've suffered the ongoing, but much less severe, effects of "nothing wrong with me" disease, and I've learned a bit about what I can and cannot eat and can and cannot do. I've taken this whole thing as God trying to tell me I can't do it all. That or maybe I should change my diet. I'd prefer to think it's God speaking to me... That's much more reasonable than considering changing my diet. I might shrivel up and die without 5 cokes a day.
But enough about me.
The boys are doing well. They've both started school. Dax had already started transitioning into a classroom one day a week for a couple of hours at the end of last year's school year, and my TyTy, never to be outdone, tested into the school system at the end of the year. We had his IEP in July and, one very persuasive letter later, I have both the boys in the same classroom. They only go for half-days four days a week, but I am already seeing a difference in Ty's language... Which is great, because the little asshole (did I just type that out loud?) completed testing yesterday and, dum dum dum, he has autism.
What's that now?
Not Asperger's. Not PDD. Not SPD. Not ADHD. Not JLHD Syndrome (Just Like His Daddy Syndrome for you non-medical folks). Autism. Classic autism.
Holy crap on a cracker.
I won't say we were surprised. I won't say we didn't see the signs. I won't say the doctors are crazy and they got it wrong.
I will say he's precious and adorable and hilarious and quirky and loving and full of potential. And such a weirdo. He'll break out of the baby gate to go brush his teeth. He'll come up missing and be cleaning the shower. He'll sit in the driveway and pour rocks on his head for an hour. He'll pick his nose and bring it to me, wipe it on my arm, and say "Thank you." God bless America, he's the funniest creature I've ever met and he's going to make some lucky woman furious and very confused one day.
I don't struggle so much with the diagnosis for him. It was tough to hear, but I know my baby and I know his strengths and I don't worry so much yet. I know things will get more complicated as he gets older, but right now he's happy and he's bright and he's so eager to learn. He loves pleasing others, and, as a behavior analyst who's worked with tons of other people's children, I know the kids who want to learn, and who want to please you, are the ones who catch on the fastest. Ty will be fine.
Where I struggle is the guilt. Every mother has guilt. Special needs mamas doubly so, I think. I agonized for a long time over the twins and what I could have done differently and how I obviously suck as a mother if I can't even carry my babies long enough for them to thrive. I finally came to terms with that and let it go, or mostly so, and now, damn. I'm like, 0 for 3. It's a hard place to be because I really do think my kids are pretty perfect. They have never, ever disappointed me. Irritated me? Sure. Pushed me to the point of daydreaming about child abuse? Daily. But they've never let me down, and I am so damn proud of them...
But still I struggle. I should have been able to provide them the best genes, the best womb, the best prenatal care, the best whatever they needed up until birth, and then the best everything after. Where did I fail them? At what point did that thing happen that led to that little ripple that changed the course of their lives from easy breezy to damn, son, you're gonna have to work a whole lot harder than everyone else?
But then I return to being so extremely grateful that they are not average or normal or typical. They're extraordinary and amazing. People know my babies and love my babies and fight for my babies and pray for my babies and they make this world better and happier and bring love into it. So why do I feel guilty?
I just do :)
So thus begins the next chapter of whatever the hell kind of story this is. And as we do this we also add in the complications of doing it separated and selling a house and trying to figure out what on God's green earth is coming next.
Say what you will, it never, ever gets boring. Lord, sometimes I wish it would.
My name is Mollie and I haven't had a blog post in four months.
My last post was written under the influence of Dilaudid, which I LOVE by the way, and I ended up spending 8 days in the hospital and the better part of a month recuperating from that medical mystery. They initially thought Crohn's, then they changed their minds, then they came back to Crohn's, then we did test upon test upon test and I swallowed a tiny Asian cameraman (long story) and 56, 000 pictures of the inside of my digestive tract later, they told me there was nothing wrong with me.
Obviously "they" have very little psychiatric training.
So, for the past few months I've suffered the ongoing, but much less severe, effects of "nothing wrong with me" disease, and I've learned a bit about what I can and cannot eat and can and cannot do. I've taken this whole thing as God trying to tell me I can't do it all. That or maybe I should change my diet. I'd prefer to think it's God speaking to me... That's much more reasonable than considering changing my diet. I might shrivel up and die without 5 cokes a day.
But enough about me.
The boys are doing well. They've both started school. Dax had already started transitioning into a classroom one day a week for a couple of hours at the end of last year's school year, and my TyTy, never to be outdone, tested into the school system at the end of the year. We had his IEP in July and, one very persuasive letter later, I have both the boys in the same classroom. They only go for half-days four days a week, but I am already seeing a difference in Ty's language... Which is great, because the little asshole (did I just type that out loud?) completed testing yesterday and, dum dum dum, he has autism.
What's that now?
Not Asperger's. Not PDD. Not SPD. Not ADHD. Not JLHD Syndrome (Just Like His Daddy Syndrome for you non-medical folks). Autism. Classic autism.
Holy crap on a cracker.
I won't say we were surprised. I won't say we didn't see the signs. I won't say the doctors are crazy and they got it wrong.
I will say he's precious and adorable and hilarious and quirky and loving and full of potential. And such a weirdo. He'll break out of the baby gate to go brush his teeth. He'll come up missing and be cleaning the shower. He'll sit in the driveway and pour rocks on his head for an hour. He'll pick his nose and bring it to me, wipe it on my arm, and say "Thank you." God bless America, he's the funniest creature I've ever met and he's going to make some lucky woman furious and very confused one day.
I don't struggle so much with the diagnosis for him. It was tough to hear, but I know my baby and I know his strengths and I don't worry so much yet. I know things will get more complicated as he gets older, but right now he's happy and he's bright and he's so eager to learn. He loves pleasing others, and, as a behavior analyst who's worked with tons of other people's children, I know the kids who want to learn, and who want to please you, are the ones who catch on the fastest. Ty will be fine.
Where I struggle is the guilt. Every mother has guilt. Special needs mamas doubly so, I think. I agonized for a long time over the twins and what I could have done differently and how I obviously suck as a mother if I can't even carry my babies long enough for them to thrive. I finally came to terms with that and let it go, or mostly so, and now, damn. I'm like, 0 for 3. It's a hard place to be because I really do think my kids are pretty perfect. They have never, ever disappointed me. Irritated me? Sure. Pushed me to the point of daydreaming about child abuse? Daily. But they've never let me down, and I am so damn proud of them...
But still I struggle. I should have been able to provide them the best genes, the best womb, the best prenatal care, the best whatever they needed up until birth, and then the best everything after. Where did I fail them? At what point did that thing happen that led to that little ripple that changed the course of their lives from easy breezy to damn, son, you're gonna have to work a whole lot harder than everyone else?
But then I return to being so extremely grateful that they are not average or normal or typical. They're extraordinary and amazing. People know my babies and love my babies and fight for my babies and pray for my babies and they make this world better and happier and bring love into it. So why do I feel guilty?
I just do :)
So thus begins the next chapter of whatever the hell kind of story this is. And as we do this we also add in the complications of doing it separated and selling a house and trying to figure out what on God's green earth is coming next.
Say what you will, it never, ever gets boring. Lord, sometimes I wish it would.
Thursday, May 10, 2012
And now for the moment we've all been waiting for!!!
Alrighty, this is the day we've had:
Colonoscopy (CS) completed. When I work up I was staring straight at the ceiling and it looked like Vandy's ceiling and I had a moment of panic thinking I was there for a Dax procedure and had fallen asleep. They oriented me, told me everything looked great, and told me they'd zapped two polyps.
I came upstairs happy, thinking the awful area of bowel must have been made that way by two nasty polyps, and we celebrated.
In jogs the surgeon. He says, "I guess you've heard the results?" and I say "Yay two polyps!" and he shrugs and says "Likely noncontributory. He wasn't able to high enough to get to the bad section. You can start on clear liquids and work your way up," and then jogged out.
We all breathed a cumulative sigh of "WTH just happened, and what does it mean?"
Nurse brings me a cup of ice and two banana Popsicles. I start having the shooting pains when I start eating them.
Tech takes my temp. It's 100.5.
A dinner tray comes in! My first dinner tray! It's 6 kinds of liquids, but hey it's my first food tray yay!
I decide to try a sip out of the beef broth. OMG it's good. It doesn't burn the back of my throat like the Popsicles. It doesn't burn the top of my stomach like jello. It doesn't make me cramp. OMG I am finally going to eat real food for the first time in 7 days!!!
Then the gastro comes in. Finally, the news we've been waiting for! I put down my broth. "I was pleasantly surprised to get in and find NOTHING at all! There was no inflammation, no signs at all of any of the major things we were looking for. I went way up there, further than I normally do, did tons of biopsies, but everything looks great!"
"Polyps?"
"Two. One was no big deal. The other one would have probably been a big problem in about 15 years. You'll be getting a scope every 5 years now to get checked."
"Coolio. So, you don't think it's Crohn's or any other type of major issue?"
"No, we'd have most likely seen some other signs. We have to wait for the biopsy results to be sure, but I'm pretty confident."
"Yay! Then why does my stomached still feel exactly the same, why am I having shooting pains still, and what happened to the ginormous super scary section from Monday"
"You probably just have air from the procedure that's causing the discomfort and pain, and maybe it was just some sort of infection that was coming or going or whatever, but you should be good now."
"I am aware of what has feels like. I am aware of what post-colonoscopy gas feels like. I am also aware of exactly what my stomach pains have felt like for the last seven days. And the big scary spots may or may not have been something but we don't know if it was? What test will you run to double check?"
"We're going to wait and see how your stomach feels tomorrow morning and we'll go from there."
"Well what tests can you run?"
"Maybe an abdominal MRI if you feel better."
"An MRI if I feel better? I want to feel better. How bout I get one If I feel worse."
"Okay if you want to lie still for 45 mins."
"I feel like I'd like y'all to run tests until we figure out if Ground Zero disappeared or not. Test my toenails. Test everything. I've been sick for 7 days; I haven't eaten for 7 days, tell me why!"
Then we continued on in the same fashion for a few moments until he left.
I pick back up my warm beef broth. It is sooo good.
Tech walks in, I ask her to take my temp because I'm fevery. She asks to to hold off on the broth so she gets an accurate temp. She comes back with a a thermometer with no temp probes. She leaves and comes back with a thermometer with temp probes, and it's broken. She comes back with a forehead scanner, checks it twice, and it's over 103. She leaves to tell the nurse. I pick up my broth. It's cold now, but dammit it's still good. I'm sipping it when the nurse comes back in with the doc. Doc says he's ordering blood cultures and Cipro and maybe a chest X-ray and another abdominal ct. There might be an infection. Oh!?
The tech takes my temp in my mouth. 100.3. She takes it under my arm. 101.7. Another tech comes in with a good warm bowl of beef broth since my other was ruined. The nurse says, "Don't eat that; I'll come back in 15 mins to take your temp orally again."
Ooooobeetaybe. I haven't eaten for 7 days. Take your time!
She comes back, takes my temp orally, it's 100.4, and she says " We'll use that one; it's in the middle."
Sure sure whatever.
My broth is cold. I have them warm it up. It's the best effing food I have ever had in my entire life. I finish the whole bowl. Still some stomach pains, but no reflux and it doesn't burn. It's my happy food. I am a happy girl.
So, in conclusion: on Monday my intestines looked frightening. Today they looked beautiful. My tummy still hurts. I'm still spiking an occasional temp. A new antibiotic may help resolve it? Rest may resolve it? Yelling at doctors may solve it? There may be nothing there now? There may be something and he didnt check high enough?
Maybe tomorrow we'll have answers. Maybe tomorrow I'll feel better. Today I have Dilaudid, beef broth, my hallucinations, and my mama.
To tomorrow!
Colonoscopy (CS) completed. When I work up I was staring straight at the ceiling and it looked like Vandy's ceiling and I had a moment of panic thinking I was there for a Dax procedure and had fallen asleep. They oriented me, told me everything looked great, and told me they'd zapped two polyps.
I came upstairs happy, thinking the awful area of bowel must have been made that way by two nasty polyps, and we celebrated.
In jogs the surgeon. He says, "I guess you've heard the results?" and I say "Yay two polyps!" and he shrugs and says "Likely noncontributory. He wasn't able to high enough to get to the bad section. You can start on clear liquids and work your way up," and then jogged out.
We all breathed a cumulative sigh of "WTH just happened, and what does it mean?"
Nurse brings me a cup of ice and two banana Popsicles. I start having the shooting pains when I start eating them.
Tech takes my temp. It's 100.5.
A dinner tray comes in! My first dinner tray! It's 6 kinds of liquids, but hey it's my first food tray yay!
I decide to try a sip out of the beef broth. OMG it's good. It doesn't burn the back of my throat like the Popsicles. It doesn't burn the top of my stomach like jello. It doesn't make me cramp. OMG I am finally going to eat real food for the first time in 7 days!!!
Then the gastro comes in. Finally, the news we've been waiting for! I put down my broth. "I was pleasantly surprised to get in and find NOTHING at all! There was no inflammation, no signs at all of any of the major things we were looking for. I went way up there, further than I normally do, did tons of biopsies, but everything looks great!"
"Polyps?"
"Two. One was no big deal. The other one would have probably been a big problem in about 15 years. You'll be getting a scope every 5 years now to get checked."
"Coolio. So, you don't think it's Crohn's or any other type of major issue?"
"No, we'd have most likely seen some other signs. We have to wait for the biopsy results to be sure, but I'm pretty confident."
"Yay! Then why does my stomached still feel exactly the same, why am I having shooting pains still, and what happened to the ginormous super scary section from Monday"
"You probably just have air from the procedure that's causing the discomfort and pain, and maybe it was just some sort of infection that was coming or going or whatever, but you should be good now."
"I am aware of what has feels like. I am aware of what post-colonoscopy gas feels like. I am also aware of exactly what my stomach pains have felt like for the last seven days. And the big scary spots may or may not have been something but we don't know if it was? What test will you run to double check?"
"We're going to wait and see how your stomach feels tomorrow morning and we'll go from there."
"Well what tests can you run?"
"Maybe an abdominal MRI if you feel better."
"An MRI if I feel better? I want to feel better. How bout I get one If I feel worse."
"Okay if you want to lie still for 45 mins."
"I feel like I'd like y'all to run tests until we figure out if Ground Zero disappeared or not. Test my toenails. Test everything. I've been sick for 7 days; I haven't eaten for 7 days, tell me why!"
Then we continued on in the same fashion for a few moments until he left.
I pick back up my warm beef broth. It is sooo good.
Tech walks in, I ask her to take my temp because I'm fevery. She asks to to hold off on the broth so she gets an accurate temp. She comes back with a a thermometer with no temp probes. She leaves and comes back with a thermometer with temp probes, and it's broken. She comes back with a forehead scanner, checks it twice, and it's over 103. She leaves to tell the nurse. I pick up my broth. It's cold now, but dammit it's still good. I'm sipping it when the nurse comes back in with the doc. Doc says he's ordering blood cultures and Cipro and maybe a chest X-ray and another abdominal ct. There might be an infection. Oh!?
The tech takes my temp in my mouth. 100.3. She takes it under my arm. 101.7. Another tech comes in with a good warm bowl of beef broth since my other was ruined. The nurse says, "Don't eat that; I'll come back in 15 mins to take your temp orally again."
Ooooobeetaybe. I haven't eaten for 7 days. Take your time!
She comes back, takes my temp orally, it's 100.4, and she says " We'll use that one; it's in the middle."
Sure sure whatever.
My broth is cold. I have them warm it up. It's the best effing food I have ever had in my entire life. I finish the whole bowl. Still some stomach pains, but no reflux and it doesn't burn. It's my happy food. I am a happy girl.
So, in conclusion: on Monday my intestines looked frightening. Today they looked beautiful. My tummy still hurts. I'm still spiking an occasional temp. A new antibiotic may help resolve it? Rest may resolve it? Yelling at doctors may solve it? There may be nothing there now? There may be something and he didnt check high enough?
Maybe tomorrow we'll have answers. Maybe tomorrow I'll feel better. Today I have Dilaudid, beef broth, my hallucinations, and my mama.
To tomorrow!
Saturday, April 21, 2012
The grass-stain epiphany
A couple of months ago I took the boys to my hometown in Mississippi for a visit. One of their favorite parts of being there is the inevitable mud puddle in my parents' driveway... A couple of weeks ago I received a letter in the mail from my grandmother (because she writes letters; it's so sweet) that said she was so surprised to drive up and see the boys playing, fully clothed, in the puddle. She called it "unconventional" parenting, not in a bad way, but just emphasized it was not something she would have let her children do all those years ago.
It's not the first time I've heard such sentiments. I hear quite frequently "You let them do what?" or "You let them play where?" or "You let them make that mess?" and my answer is unapologetically always yes.
(Okay, sometimes apologetically, as I'm the one who has to clean them and whatever else afterwards, but you get my drift.)
You may call it adventures in parenting, but its more than that. I don't enjoy cleaning any more than the next person, and scrubbing dirt out of body parts I didn't know existed isn't one of my favorite activities, but I do take secret joy out of the messes.
You see, it was right about two years ago, not long after Dax's 2nd birthday, that a friend talked me into taking the boys to the zoo for the first time. We were just getting out of RSV season and the boys hadn't really been outside much, but it was a beautiful day. We stopped on the grassy knoll area to rest and eat a snack, and Dax, who hadn't been crawling well for very long, set out to explore. It was then that I saw his shoes... His pristine white Nikes he'd been wearing for months... had grass stains. Grass stains! And there I was, crying like a fool in the middle of the zoo.
Dax had never gotten shoes dirty before. I took pictures of them, I was so proud.
I swore at that very moment that I would never be upset over muddy shoes or stained clothes... Because that's what living looks like, and that's what little boys are supposed to do. And we had almost missed out on it.
So, yes, I let my boys get muddy, and I let them get dirty, and I let them play hard.
I have able-bodied boys and a good washing machine.
I am blessed.
It's not the first time I've heard such sentiments. I hear quite frequently "You let them do what?" or "You let them play where?" or "You let them make that mess?" and my answer is unapologetically always yes.
(Okay, sometimes apologetically, as I'm the one who has to clean them and whatever else afterwards, but you get my drift.)
You may call it adventures in parenting, but its more than that. I don't enjoy cleaning any more than the next person, and scrubbing dirt out of body parts I didn't know existed isn't one of my favorite activities, but I do take secret joy out of the messes.
You see, it was right about two years ago, not long after Dax's 2nd birthday, that a friend talked me into taking the boys to the zoo for the first time. We were just getting out of RSV season and the boys hadn't really been outside much, but it was a beautiful day. We stopped on the grassy knoll area to rest and eat a snack, and Dax, who hadn't been crawling well for very long, set out to explore. It was then that I saw his shoes... His pristine white Nikes he'd been wearing for months... had grass stains. Grass stains! And there I was, crying like a fool in the middle of the zoo.
Dax had never gotten shoes dirty before. I took pictures of them, I was so proud.
I swore at that very moment that I would never be upset over muddy shoes or stained clothes... Because that's what living looks like, and that's what little boys are supposed to do. And we had almost missed out on it.
So, yes, I let my boys get muddy, and I let them get dirty, and I let them play hard.
I have able-bodied boys and a good washing machine.
I am blessed.
Wednesday, April 4, 2012
Tuesday, March 27, 2012
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