I feel like I'm cracking.
I'm tired.
Exhausted, really.
No, scratch that. I'm fucking exhausted.
I didn't sleep well last night because a dear girlfriend started chemo today.
Breast cancer.
She's 40. Has 3 young girls. Because she and her husband are just the right combo of brave and crazy.
She is younger than me when I was diagnosed at the age of 42. All the nurses and doctors said I was too young to have such an aggressive cancer. Her's was aggressive, too. And it was coming for her.
She found it because she did a breast self exam because I've been bugging everyone to do a breast self exam. Guys too. NPR did a great story about it a while ago. It's worth the read.
Did you do yours yet? Seriously. Like right now. Stop what you're doing and do a breast self exam.
Here's an instructional video.
No, I didn't make it. I don't have the time right now.
You're welcome.
Anyway...so she had chemo today...and another dear friend has chemo today...they were both in the Emerald City, but not together. It's not like you're gonna ask for a 2 for 1 deal on that shit! And I think a third friend, who I'm more friends with his wife because I've worked with her for 12 years at the college, her husband had chemo today...but they got good news!
And my dad had heart surgery last week. He's fine. I may or may not blog about it later. He had a valve replaced. He chose titanium, to go along with his iron will and nerves of steel. Obviously.
And Nathan had a meltdown when he got home from school today. Because he was starving. And for whatever goddamned reason he didn't eat any of the turkey sandwich I packed for him.
*Note to self; write food breaks into his IEP. Sandwich before Science!
It's the first meltdown he's had since starting back to school. I'm not complaining. Well, I am. Because that's why I blog. Right? But really, to make it 18 days into the school year before melting. Huge accomplishment.
But still....I had to make two trips all the way into town today. It's a lot. Seriously. And the Tacoma Tacoma (what we call Daddy's truck) was at the dealership because of a recall on some part that I never heard of and they said that it's not dangerous but I'm not driving Randy's truck when there's a goddamned RECALL!!! RIGHT?!?! So I took the boys to school, then came home and took a shower then zipped his truck down to the dealership to get it taken care of and got a loaner car, because they do that when you purchase your rigs from them. And then I came home and GRADED because I teach a HEALTH CLASS and I don't feel very HEALTHY! (Irony much?) And then I took Randy to his mental health appointment. And then I took him back there again, after we got all the way the fuck home because he forgot to grab his jacket when he was done with his session.
It's cool, dude. We all forget shit. But, really, get your shit together. You need to remember.
So while he was in therapy, I went to Renaissance, enjoyed the fog on the Strait, and had a strong cuppa
mint tea. I also sat and completed the Adaptive Behavior Assessment System-3
for Nathan for school. Because it's part of him being back in school.
For his IEP.
And, no, my husband isn't going to break the Washington State law that says he has to wait 6 months after a seizure to drive. Because, really, if he gets in an accident where God forbid someone is killed. Well...there goes every goddamned fucking bit of happiness I've been clinging to.
Not to mention the fear of loosing my home and every other vital part to surviving....
My husband is more responsible and respectful of me than that. It's only till January. And, really, I think once we get in a groove, with school being in session for all four of us and, you know, making less trips into town...it'll be a bit more manageable. That's my hope anyway.
Besides the fact that he's still got a goddamned tube in his stomach keeping him alive...with nutritional shakes. He's been feeding himself for quite some time. I'm not making anything in the Vitamix. He's afraid I'll crush up all his meds and mix them in there and kill him. Because I told him I would. Don't worry. I'm not going to. I already would've done it. And I told my therapist before she retired and I told my new therapist. And several friends. Really it's because my humor, in the throws of darkness is that.fucking.dark.
And it's important to be honest.
It's not worth the jail time.
Besides, I'd have to poison Nathan.
And I'd smother Isaac, because that chucklehead doesn't shut the goddamn up sometimes.
I have no idea where he gets it.
Randy's likely to have the g-tube for another 6 weeks or so....I'm hoping by Thanksgiving...but it may be Christmastime...it's all dependent on how he does eating orally...which is still limited. And so he's seeing a mental health therapist.
Because CANCER.
I didn't sleep last night.
Because my friends had chemo today.
*Note to self: on the chemo eve of family members and/or close friends, go to bed within an hour of putting boys to bed.
And my husband is still suffering.
But I have a great new bed (don't worry, that blog on how that came together is coming).
And I get to be alone.
Try not to worry, Pat, I'm taking time to breathe. Thank you for the reminder, friend.
Because I don't want to feel like I'm cracking.
I am working on taking care of me.
Tuesday, September 27, 2016
Friday, September 16, 2016
The first little bit of school
So far, the first little bit of school is going better than I expected.
Better than I anticipated.
Better than I hoped.
Better than I dared to ever dream.
Seriously, you guys.
Because Sept 1 was the first day of school, and in Autism Land, that's a really big deal. To start something as profound as returning to school, on the first day of the month. Really. And it was risky because it was a Thursday, but it's not as bad as starting a week on a Tuesday, which was the next week, and that had the potential to be a clusterfuck, especially had it been a full moon, but, fortuitously, it wasn't. The full moon is today Sept 16 (they got an app for that!).
I originally requested that Nathan return to school part time, 3 days a week, from 7:45 until about noon. He and I had discussed it numerous times and this is what he and I agreed to, so when I met with the principal, this is what I negotiated on his behalf, and it felt right. It's important to test the waters and not feel unnecessary pressure to jump right back in. And, as he and I discussed, I was going to be in the classroom with him until he and I agreed that he could manage on his own. Baby steps. If he felt he could handle more days and time at school, everyone was going to support that decision; but the decision was to be Nathan's.
So, on the first day, which everyone starts on the first day of school, even if you're a part-timer, and even if you're special needs...when I asked him around noon how he was doing, he said good. And then I asked him if he wanted to stay or to go, and he said stay. And so we stayed. For the whole day. Until 2 pm. Six hours and 15 minutes, of partying. Right? And seeing friends and strangers and so many different faces and lots of stimulation and thank the Sweet Baby Jesus for the Bite Saber that I found on line and ordered which happens to be IN HIS FAVORITE COLOR because, clearly, divine intervention made the owners of ARK Therapeutic decide that forest green be "Xtra Xtra Tough, recommended for more avid chewing. These are the most firm and provide the most resistance to the jaw. No chew tool is indestructible, but these are very tough." For the kid who chews holes in his shirts, you get the XXT I'm not gonna let you down AFA* Chew Stick. And I got one that looks like a Lego (but they call it a Brick Stick) because seriously, I don't know if he wants a smooth surface or a bumpy surface. And he said he liked both when we looked at them together; done. And on the first day of school, he chewed the fuck out of that Bite Saber. Best money spent. After school, I did see a few more seizures than I would've liked too...but not nearly as many as I saw after we went to the movies and saw Star Wars: The Force Awakens in the theater.
On the second day of school, Friday, he was chewing and chewing and chewing on his Bite Saber and walking down the hall, and one of Isaac's classmates came out of the classroom, and started walking with us in the hall. I introduced them and the kid said "what's that in your mouth?" And Nathan said, "A Bite Saber" without taking it out of his mouth, and the kid understood what Nathan said, because then the boy said "what's it for?" and Nathan goes "chewing" and the kid said, "but why do you have it?" and Nathan said "because it helps me feel better."
And that was it. The kid didn't bat an eye. Like totally normal interaction, not a big deal, it's cool that you're chewing in it.
I was pretty impressed with what I had witnessed.
Why?
Because my son had a verbal exchange with a kid he had never seen before. And they went back and forth several times in the conversation. It's like THREE sentences for my kid. Which, before we had several major life experiences in the last 18 months, my kid would have looked at me to answer the kid. Would have looked at me to say whatever variation of "it's ok to talk to him" not because he's scared...but because he lacked the confidence. And seeing a child's confidence build...amazing.
And the other piece that was awesome was that the kid was cool about dealing with something different. And this gives me hope.
On both days, Nathan and I went out to recess at the same time as Isaac's class. It was one of the things I discussed with both of the boys; and it's important to me as a parent that my kids are together, and have access to each other during the day. I've made special requests on behalf of my ADA kid, and they are being met. On Friday, Nathan chose to stay until 2 pm also, which was really exciting, and really exhausting, too. Because I'm in a heightened state of awareness while I'm with him; I can only imagine the amount of cortisol running around in our brains...I try to not perserverate on it.
Labor Day weekend was ok...we mostly laid low and tried to just be together. We tried to help Daddy feel better...and give him as much space as he needs...as he recovers from his own Cancer Adventure.
On Monday evening, I was starting to prepare the boys...Isaac would be going to school the next day, and the plan was that Nathan was going to stay home and go to Hapkido. The plan changed very quickly when Nathan said, "Mom I want to go to school tomorrow." And, I'm not gonna say no! RIGHT?!?! So, I emailed his teacher and the principal letting them know the change of plans, and they were completely supportive. So, he went all four days the second week; and he stayed from the beginning of the day to the end of the day. He ate lunch; he played on the big playground for morning recess and for recess after lunch, he plays on the special needs playground, and I'm fine with it because Nathan will have a foot in the neurotypical world, and a foot in the disabled world. Inclusion is a HUGE issue in the disabled world; and of course I want my kid to be included...but I don't want it to come at a cost that is exhausting for him, or me or the other members of my family. We've been through enough.
Nathan's doing great. Seriously better than I ever expected him to. He's enjoying himself. He's happy. He's learning. He's making his own decisions. He's tired. He hasn't really melted down. I have. A lot. But Sweet Jesus, I'm a hot fucking mess on a good day...but I'm also doing the best I can. Isaac has rolled right back into the routine. I am thankful that he loves everything about school: learning, being with friends, recess, math, library time, math, music, math, math, and more math. And, it helps that his teacher, Mrs. N, has Legos in the classroom and that they get to create written stories using the Legos.
The only thing left to do is prep for my own class; school starts for me on Monday. I'll be teaching my basic Health class online. Yes, Randy will be teaching two online math courses. He needs to keep his head in the game.
This weekend, we'll go to the annual picnic that PDMA has. And after that, we are planning on laying low. The first rains are coming...and we'll likely bake some chocolate chip cookies with pecans and watch movies.
*AFA: Ain't fucking around
Better than I anticipated.
Better than I hoped.
Better than I dared to ever dream.
Seriously, you guys.
Because Sept 1 was the first day of school, and in Autism Land, that's a really big deal. To start something as profound as returning to school, on the first day of the month. Really. And it was risky because it was a Thursday, but it's not as bad as starting a week on a Tuesday, which was the next week, and that had the potential to be a clusterfuck, especially had it been a full moon, but, fortuitously, it wasn't. The full moon is today Sept 16 (they got an app for that!).
I originally requested that Nathan return to school part time, 3 days a week, from 7:45 until about noon. He and I had discussed it numerous times and this is what he and I agreed to, so when I met with the principal, this is what I negotiated on his behalf, and it felt right. It's important to test the waters and not feel unnecessary pressure to jump right back in. And, as he and I discussed, I was going to be in the classroom with him until he and I agreed that he could manage on his own. Baby steps. If he felt he could handle more days and time at school, everyone was going to support that decision; but the decision was to be Nathan's.
So, on the first day, which everyone starts on the first day of school, even if you're a part-timer, and even if you're special needs...when I asked him around noon how he was doing, he said good. And then I asked him if he wanted to stay or to go, and he said stay. And so we stayed. For the whole day. Until 2 pm. Six hours and 15 minutes, of partying. Right? And seeing friends and strangers and so many different faces and lots of stimulation and thank the Sweet Baby Jesus for the Bite Saber that I found on line and ordered which happens to be IN HIS FAVORITE COLOR because, clearly, divine intervention made the owners of ARK Therapeutic decide that forest green be "Xtra Xtra Tough, recommended for more avid chewing. These are the most firm and provide the most resistance to the jaw. No chew tool is indestructible, but these are very tough." For the kid who chews holes in his shirts, you get the XXT I'm not gonna let you down AFA* Chew Stick. And I got one that looks like a Lego (but they call it a Brick Stick) because seriously, I don't know if he wants a smooth surface or a bumpy surface. And he said he liked both when we looked at them together; done. And on the first day of school, he chewed the fuck out of that Bite Saber. Best money spent. After school, I did see a few more seizures than I would've liked too...but not nearly as many as I saw after we went to the movies and saw Star Wars: The Force Awakens in the theater.
On the second day of school, Friday, he was chewing and chewing and chewing on his Bite Saber and walking down the hall, and one of Isaac's classmates came out of the classroom, and started walking with us in the hall. I introduced them and the kid said "what's that in your mouth?" And Nathan said, "A Bite Saber" without taking it out of his mouth, and the kid understood what Nathan said, because then the boy said "what's it for?" and Nathan goes "chewing" and the kid said, "but why do you have it?" and Nathan said "because it helps me feel better."
And that was it. The kid didn't bat an eye. Like totally normal interaction, not a big deal, it's cool that you're chewing in it.
I was pretty impressed with what I had witnessed.
Why?
Because my son had a verbal exchange with a kid he had never seen before. And they went back and forth several times in the conversation. It's like THREE sentences for my kid. Which, before we had several major life experiences in the last 18 months, my kid would have looked at me to answer the kid. Would have looked at me to say whatever variation of "it's ok to talk to him" not because he's scared...but because he lacked the confidence. And seeing a child's confidence build...amazing.
And the other piece that was awesome was that the kid was cool about dealing with something different. And this gives me hope.
On both days, Nathan and I went out to recess at the same time as Isaac's class. It was one of the things I discussed with both of the boys; and it's important to me as a parent that my kids are together, and have access to each other during the day. I've made special requests on behalf of my ADA kid, and they are being met. On Friday, Nathan chose to stay until 2 pm also, which was really exciting, and really exhausting, too. Because I'm in a heightened state of awareness while I'm with him; I can only imagine the amount of cortisol running around in our brains...I try to not perserverate on it.
Labor Day weekend was ok...we mostly laid low and tried to just be together. We tried to help Daddy feel better...and give him as much space as he needs...as he recovers from his own Cancer Adventure.
On Monday evening, I was starting to prepare the boys...Isaac would be going to school the next day, and the plan was that Nathan was going to stay home and go to Hapkido. The plan changed very quickly when Nathan said, "Mom I want to go to school tomorrow." And, I'm not gonna say no! RIGHT?!?! So, I emailed his teacher and the principal letting them know the change of plans, and they were completely supportive. So, he went all four days the second week; and he stayed from the beginning of the day to the end of the day. He ate lunch; he played on the big playground for morning recess and for recess after lunch, he plays on the special needs playground, and I'm fine with it because Nathan will have a foot in the neurotypical world, and a foot in the disabled world. Inclusion is a HUGE issue in the disabled world; and of course I want my kid to be included...but I don't want it to come at a cost that is exhausting for him, or me or the other members of my family. We've been through enough.
Nathan's doing great. Seriously better than I ever expected him to. He's enjoying himself. He's happy. He's learning. He's making his own decisions. He's tired. He hasn't really melted down. I have. A lot. But Sweet Jesus, I'm a hot fucking mess on a good day...but I'm also doing the best I can. Isaac has rolled right back into the routine. I am thankful that he loves everything about school: learning, being with friends, recess, math, library time, math, music, math, math, and more math. And, it helps that his teacher, Mrs. N, has Legos in the classroom and that they get to create written stories using the Legos.
The only thing left to do is prep for my own class; school starts for me on Monday. I'll be teaching my basic Health class online. Yes, Randy will be teaching two online math courses. He needs to keep his head in the game.
This weekend, we'll go to the annual picnic that PDMA has. And after that, we are planning on laying low. The first rains are coming...and we'll likely bake some chocolate chip cookies with pecans and watch movies.
*AFA: Ain't fucking around
Friday, September 9, 2016
Your 10th Birthday Eve
Dear Nathan,
Happy Birthday Eve, my first born child!!! You will be 10--TEN--tomorrow! You're going into double digits! The only other time you'll add another digit is if you make it to 100. Not a level...well...kinda I guess.....
You. I am so proud of you. You said you wanted to go to school, and you are. Your first six days of 4th grade have been pretty smooth...and full of emotion and amazement and anxiety and stress and transition...which is hard for you...and for all of us in this autism family. And let's face it, skipping a Monday is difficult on the neurotypical world too.
But you're about to be 10!!! A decade. Daddy said that the reason 10 is big is because we count in base 10. Yes, there are three bases in baseball. But I'm not talking about baseball. I'm talking about mathematics. Don't be too autistic and ADHD right now. Pay attention. We count in base 10, as opposed to base 8, or base 7. So, we count 10, 20, 30...not 8, 16, 24...and not 7, 14, 21.... Got it? Base 10. I suppose home plate is a base. But I don't really know because I'm not a baseball fan.
Thank you for contributing to the conversation, child. This is kinda new for you...especially with other people...like the folks you didn't know on the first day of school. But you're working with them...and they're working with you...and it's been good. It's been better than good. It's been pretty fucking amazing, kiddo. I'm really proud of you for taking one day at a time.
Yeah...Mommy probably shouldn't say fuck so much. I'm trying my best to not. Yes, just like you are trying your best to not step on my foot or hit your brother or laugh hysterically. I'm sorry I get so mad at you when you laugh hysterically. I know it's your reaction to distress. I try my best to walk away from you when you do it. But sometimes I'm just done for the day, before I even get out of bed. I'm under a lot of pressure, child. "Oppressive" doesn't begin to describe it.
And I'm sorry. I'm sorry that you and your brother were almost parentless. Orphans. And, yes, Dean and Reid would be fantastic brothers to you and Isaac. But, that means you'd have no parents. That Daddy and I would be dead (God forbid). And that's just not something anyone deserves. So, let's think positive and continue moving forward. Because that's the best we can do. And, we certainly didn't intend to each get our own cancer. It's just the cards we were dealt. Yup. It's kinda like Go Fish. I love you and the connections that are happening in your brain.
Let's love each other. And ourselves. Let's be kind. And honest. And listen to our bodies when we're hungry or tired or cranky. Yup. Hungry, tired, and cranky are three strikes. And then you're out and in meltdown mode. And that sucks. So, let's prevent the meltdown. Eat strong foods, get plenty of rest, and try your best.
Instead of saying sorry after you hit Isaac or you use mean words, you need to follow the Cougar Code. Yup. The one at school. Do you remember what the Cougar Code is? Be respectful; be responsible; be a learner; and be safe. RIGHT! You got it! So, be respectful, keep your hands and feet to yourself. Be responsible, give yourself your medications when you're supposed to. Yes, I'll mix everything up for you. But YOU need to eat that ice cream mixed with medicine. I know it sucks. I know it's not fair. I know the ethosuxamide tastes awful. I am sorry we cannot mix it in the ice cream. Well, because it's more like cough syrup. You just gotta drink it down. Yes, you can have a Starburst afterwards. But if you choose to not take your meds, what will happen? Yes. You'll seize. And your brain will hurt. We don't want that. What do you want? Ye!. I think you will be great at pushing carts for folks at Costco. Maybe, if you don't seize, you can learn to drive a forklift! Wouldn't that be fun?! Moving pallets! Yes! You would be great at that! You'd get to help so many people! So, take your meds! The taste is temporary. It's a small problem. Yes, epilepsy and cancer are huge problems! You are becoming quite a learner! Yes, just like the Cougar Code says! Exactly, Nathan! You're getting it! And how can you be safe? Yes, taking your meds...not fighting with Isaac, especially when Mommy's driving! What else? How else can you be safe? Going outside when the fire alarm sounds is a great way to stay safe. I know it was scary and it hurt your ears. And I'm sure that all the kids at school were nervous and scared during the fire drill yesterday, too. But it's over, right? And now you know what to do just in case there's a fire. Right?
So, tomorrow...the day you were born...it's supposed to be sunny and beautiful and warm. Every year on your birthday, it's never rained. It's always been a beautiful day. So, let's have a beautiful year. Be brave! Have fun! Show your courage! And remember it's ok to cry. It's ok to give hugs and get hugs and kisses from me and Daddy. And Isaac if he says ok. I know you think it's fun to squeeze him, but you don't need to make him scream...it's not cool. But what is cool is seeing you grow and change...especially the maturity you've had since February 2015, when we pulled you to homeschool you and then I found the lump in my breast. You amaze me.
But, really, your birthday is about me. Because I'm the one that amazes myself. I gave birth to you 10 years ago. I listened to my body and pushed you out and my entire body tingled like nothing I'd ever experienced. It was amazing. It was a Sunday; and Daddy put the Cowboys game on. And, no, we don't watch football anymore...because it's just not what our family does...yup...we got a lot of life happening. Baseball? You want to play again next summer with Special Olympics? You bet. And soccer? Sure!
I love you Nathan Zachary. My hope for you this next year is that you have fewer seizures, that you learn and grow and thrive in ways that I cannot even begin to imagine.
All my love always,
Mommy
XOXO
PS...don't forget that I'm a badass.
Happy Birthday Eve, my first born child!!! You will be 10--TEN--tomorrow! You're going into double digits! The only other time you'll add another digit is if you make it to 100. Not a level...well...kinda I guess.....
You. I am so proud of you. You said you wanted to go to school, and you are. Your first six days of 4th grade have been pretty smooth...and full of emotion and amazement and anxiety and stress and transition...which is hard for you...and for all of us in this autism family. And let's face it, skipping a Monday is difficult on the neurotypical world too.
But you're about to be 10!!! A decade. Daddy said that the reason 10 is big is because we count in base 10. Yes, there are three bases in baseball. But I'm not talking about baseball. I'm talking about mathematics. Don't be too autistic and ADHD right now. Pay attention. We count in base 10, as opposed to base 8, or base 7. So, we count 10, 20, 30...not 8, 16, 24...and not 7, 14, 21.... Got it? Base 10. I suppose home plate is a base. But I don't really know because I'm not a baseball fan.
Thank you for contributing to the conversation, child. This is kinda new for you...especially with other people...like the folks you didn't know on the first day of school. But you're working with them...and they're working with you...and it's been good. It's been better than good. It's been pretty fucking amazing, kiddo. I'm really proud of you for taking one day at a time.
Yeah...Mommy probably shouldn't say fuck so much. I'm trying my best to not. Yes, just like you are trying your best to not step on my foot or hit your brother or laugh hysterically. I'm sorry I get so mad at you when you laugh hysterically. I know it's your reaction to distress. I try my best to walk away from you when you do it. But sometimes I'm just done for the day, before I even get out of bed. I'm under a lot of pressure, child. "Oppressive" doesn't begin to describe it.
And I'm sorry. I'm sorry that you and your brother were almost parentless. Orphans. And, yes, Dean and Reid would be fantastic brothers to you and Isaac. But, that means you'd have no parents. That Daddy and I would be dead (God forbid). And that's just not something anyone deserves. So, let's think positive and continue moving forward. Because that's the best we can do. And, we certainly didn't intend to each get our own cancer. It's just the cards we were dealt. Yup. It's kinda like Go Fish. I love you and the connections that are happening in your brain.
Let's love each other. And ourselves. Let's be kind. And honest. And listen to our bodies when we're hungry or tired or cranky. Yup. Hungry, tired, and cranky are three strikes. And then you're out and in meltdown mode. And that sucks. So, let's prevent the meltdown. Eat strong foods, get plenty of rest, and try your best.
Instead of saying sorry after you hit Isaac or you use mean words, you need to follow the Cougar Code. Yup. The one at school. Do you remember what the Cougar Code is? Be respectful; be responsible; be a learner; and be safe. RIGHT! You got it! So, be respectful, keep your hands and feet to yourself. Be responsible, give yourself your medications when you're supposed to. Yes, I'll mix everything up for you. But YOU need to eat that ice cream mixed with medicine. I know it sucks. I know it's not fair. I know the ethosuxamide tastes awful. I am sorry we cannot mix it in the ice cream. Well, because it's more like cough syrup. You just gotta drink it down. Yes, you can have a Starburst afterwards. But if you choose to not take your meds, what will happen? Yes. You'll seize. And your brain will hurt. We don't want that. What do you want? Ye!. I think you will be great at pushing carts for folks at Costco. Maybe, if you don't seize, you can learn to drive a forklift! Wouldn't that be fun?! Moving pallets! Yes! You would be great at that! You'd get to help so many people! So, take your meds! The taste is temporary. It's a small problem. Yes, epilepsy and cancer are huge problems! You are becoming quite a learner! Yes, just like the Cougar Code says! Exactly, Nathan! You're getting it! And how can you be safe? Yes, taking your meds...not fighting with Isaac, especially when Mommy's driving! What else? How else can you be safe? Going outside when the fire alarm sounds is a great way to stay safe. I know it was scary and it hurt your ears. And I'm sure that all the kids at school were nervous and scared during the fire drill yesterday, too. But it's over, right? And now you know what to do just in case there's a fire. Right?
So, tomorrow...the day you were born...it's supposed to be sunny and beautiful and warm. Every year on your birthday, it's never rained. It's always been a beautiful day. So, let's have a beautiful year. Be brave! Have fun! Show your courage! And remember it's ok to cry. It's ok to give hugs and get hugs and kisses from me and Daddy. And Isaac if he says ok. I know you think it's fun to squeeze him, but you don't need to make him scream...it's not cool. But what is cool is seeing you grow and change...especially the maturity you've had since February 2015, when we pulled you to homeschool you and then I found the lump in my breast. You amaze me.
But, really, your birthday is about me. Because I'm the one that amazes myself. I gave birth to you 10 years ago. I listened to my body and pushed you out and my entire body tingled like nothing I'd ever experienced. It was amazing. It was a Sunday; and Daddy put the Cowboys game on. And, no, we don't watch football anymore...because it's just not what our family does...yup...we got a lot of life happening. Baseball? You want to play again next summer with Special Olympics? You bet. And soccer? Sure!
I love you Nathan Zachary. My hope for you this next year is that you have fewer seizures, that you learn and grow and thrive in ways that I cannot even begin to imagine.
All my love always,
Mommy
XOXO
PS...don't forget that I'm a badass.
Wednesday, September 7, 2016
The last three days of summer 2016
The last three days of summer were pretty crazy-making for me, since I'm trying to run the Anderson Family Circus.
Being the Ring Leader of a saucy almost second grader, a special needs almost 10 year old who's been homeschooled for the last year and a half (hyphens deleted intentionally, obvs), and taking care of my husband, who's a stage four tonsil cancer patient is a huge responsibility. Especially for a woman
in a male-dominated field, which is what my home life is like. I'm the only female human in my home and the past week was pretty full of emotion. No, I'm not premenstrual; I don't get my period anymore, it was a chemo perk.
On Monday (Aug 29) I, the Ring Leader, took themonkeys boys
to school for a visit to Nathan's Sped (Special Education) classroom.
But we call it the Resource Room, because times change and things are
labeled differently now than they were when I was in grade school, and
also, the staff who work in a Resource Room have got to be resourceful. Duh. And they gotta be clever and quick and think on their feet faster than Lightning McQueen. And a Resource Room teacher may only have 12 kids in that Resource Room, but trust me when I tell you it feels like a lot, and I mean a whole fucking lot more kids. It's like having 36 neurotypical kids. Seriously.
On Monday (Aug 29) I, the Ring Leader, took the
During our visit with the teacher, Nathan
did really well during the 90-ish minutes he, Isaac and I were at
school. And it was late in the afternoon. Like, we got to school at
FOUR. And for us, doing something late in the day is a big deal, because it can interfere with our bedtime routine, which is sacred in an autism home...for the brief bits of sanity I have remaining. Nathan
was both excited and nervous, which are all normal emotions for
kids--and adults--at the start of the school year. But, he also had some
confidence in that Isaac and I were with him.
Tuesday (Aug 30) I took the boys to Hapkido,
and they had a lot of fun! We are all thankful Mrs. V supported the
boys being together in the homeschool class this summer, which enabled
me to cut down on the number of trips into town, which ultimately
decreased my stress and the amount of pressure I have upon me.
Wednesday, (Aug 31)
the day before school started was interesting in that Randy came out
from the bedroom and said "I'm telling Dr. Chryiath I'm done with
chemo." And I was like, "um, ok...." because, really, this wasn't at all
on my radar, and not what I expected my husband to say first thing in
the morning, especially since I was prepping for my day, which involved
taking the boys to school for a visit; and it's an open house...so all
500 kids will be there, with their parents. My stress level was already
pretty elevated. And I needed to prep food and clothes and boys: I was moving in a completely different direction than him. So, I was not prepared for what he said.
But here's the
deal, Randy made an important decision, that kept him awake much of the
previous night, which is known as Chemo Eve (and is NOTHING like
Christmas Eve, or even Birthday Eve. No. Very different, indeed!), and he
didn't take this decision lightly. He was going to the Cancer Center
Wednesday morning knowing that he was having a doctor's appointment, but
that he wasn't going to have chemo that day because when they drew
blood for labs on Monday, it turns out his platelets were low. Platelets
are in your blood and are responsible for clotting, and if the platelet
count is too low, they can't administer your chemo because bad stuff
will happen.
The thing is, is that for my husband's tonsil cancer, the primary treatment was radiation. And the chemo, which was supposed to be three doses, 21 days apart, was given as a booster for the radiation. And he completed the radiation treatment on August 26th. His chemo was not considered a systemic treatment; it was considered a targeted treatment, because they were going for the throat (if you will).
So, he asked our medical oncologist, and she agreed. Mathematically, he ended up doing about 75% of the recommended dose, but the caveat is that, again, his chemo was a booster for the radiation; they worked together to kill the cancer cells. And so with the doc's blessing, as of last week, he's done with chemo.
But he's not completely done (seriously, this is our life). He still has to go in for fluids three times a week because the type of chemo that they gave him was very dehydrating, so they hydrate him. No, it's not that simple for him to increase his fluid intake; he isn't consuming anything but a few sips of water in a 24-hour period; all foods and fluids and most medications are being put in the G-tube. So, when he gets fluids, he goes to the Cancer Center (or the hospital) and they hook the PICC Line in his arm up to the IV machine, and he gets a liter of saline infused into his body, and it takes about three motherfucking hours. They have to hook him up, start the drip, and then unhook him. And then, because he's got a ton of fluids in him, he's up peeing for about 15 hours afterwards.
But he may be done with getting fluids on Friday, 9/9, which is Nathan's Birthday Eve (no pressure, dude, for reals). The discussion today (Sept 7) with the Physician's Assistant (who is lovely) was that he would see how he's feeling and if he feels like he needs more fluids next week, then he'll get to the Cancer Center for more fluids, but if not, then he he won't.
The thing is, is that for my husband's tonsil cancer, the primary treatment was radiation. And the chemo, which was supposed to be three doses, 21 days apart, was given as a booster for the radiation. And he completed the radiation treatment on August 26th. His chemo was not considered a systemic treatment; it was considered a targeted treatment, because they were going for the throat (if you will).
So, he asked our medical oncologist, and she agreed. Mathematically, he ended up doing about 75% of the recommended dose, but the caveat is that, again, his chemo was a booster for the radiation; they worked together to kill the cancer cells. And so with the doc's blessing, as of last week, he's done with chemo.
But he's not completely done (seriously, this is our life). He still has to go in for fluids three times a week because the type of chemo that they gave him was very dehydrating, so they hydrate him. No, it's not that simple for him to increase his fluid intake; he isn't consuming anything but a few sips of water in a 24-hour period; all foods and fluids and most medications are being put in the G-tube. So, when he gets fluids, he goes to the Cancer Center (or the hospital) and they hook the PICC Line in his arm up to the IV machine, and he gets a liter of saline infused into his body, and it takes about three motherfucking hours. They have to hook him up, start the drip, and then unhook him. And then, because he's got a ton of fluids in him, he's up peeing for about 15 hours afterwards.
But he may be done with getting fluids on Friday, 9/9, which is Nathan's Birthday Eve (no pressure, dude, for reals). The discussion today (Sept 7) with the Physician's Assistant (who is lovely) was that he would see how he's feeling and if he feels like he needs more fluids next week, then he'll get to the Cancer Center for more fluids, but if not, then he he won't.
But the thing is, is that HE made the decision about stopping! And I am really really proud of him for that!!!!
HE felt strong enough and courageous enough and empowered enough to say to a medical oncologist, "I'm done. I am scheduled to have two more chemo treatments, but it's not going to affect the outcome because I am done with radiation and why am I prolonging just feeling like shit?"
Culturally, we perceive physicians to be omnipotent deities. We think they know best. And, yes, a doctor definitely knows a LOT about the body and if they're a specialist, like a medical oncologist, they are oftentimes presented in film or books as these highly emotionally distant people, who are probably on the higher functioning end of the autism spectrum. But, I can tell you that when you get a good doc, which my family is both fortunate and thankful to have...the good doctors...they listen to their patients, they recognize that they themselves are human, they are willing to think outside the box, and they are likely to check on you when you are in the hospital for an unexpected overnight visit, they are compassionate...and they truly care about their patients as people who have lives....these are the doctors that I want to work with on staying healthy and keeping my family healthy.
And, let's face it, from the beginning, one of the things I was trying to teach Randy Anderson was that he needs to listen to his body and advocate for his own health. For nearly twenty years, I've been teaching students to do this for themselves...and I think some of them get it. I'm thankful that Randy was able to effectively communicate what his needs were to his physician, and that she listened and agreed with him.
The final thing that was also huge about Wednesday last week, the last day of summer vacation, was that I spent a good part of that cold, wet, grey day prepping the boys for Thursday, which was the first day of school. I pepped a lot of food, so I could make the first two days of school easier on me, since I was not simply dropping them off. I was planning on being at school, primarily supporting Nathan as he transitions to the classroom, since I was anticipating a rough start. I also had them pick out their clothes, made lunches, and pack backpacks. You know, all stuff "normal"families get to do the day before school.
Wednesday I also took themonkeys boys to school for a visit...the one that was the open house...and there were a LOT of kids there. But we Andersons did really well. And we were excited to get back in the classrooms. And we each got an ice cream cone on the way out (thank you PTO!).
So, the last three days of summer 2016 were pretty big for the Anderson Family Circus. And we never have to live those three days again. It is behind us; we are moving forward.
HE felt strong enough and courageous enough and empowered enough to say to a medical oncologist, "I'm done. I am scheduled to have two more chemo treatments, but it's not going to affect the outcome because I am done with radiation and why am I prolonging just feeling like shit?"
Culturally, we perceive physicians to be omnipotent deities. We think they know best. And, yes, a doctor definitely knows a LOT about the body and if they're a specialist, like a medical oncologist, they are oftentimes presented in film or books as these highly emotionally distant people, who are probably on the higher functioning end of the autism spectrum. But, I can tell you that when you get a good doc, which my family is both fortunate and thankful to have...the good doctors...they listen to their patients, they recognize that they themselves are human, they are willing to think outside the box, and they are likely to check on you when you are in the hospital for an unexpected overnight visit, they are compassionate...and they truly care about their patients as people who have lives....these are the doctors that I want to work with on staying healthy and keeping my family healthy.
And, let's face it, from the beginning, one of the things I was trying to teach Randy Anderson was that he needs to listen to his body and advocate for his own health. For nearly twenty years, I've been teaching students to do this for themselves...and I think some of them get it. I'm thankful that Randy was able to effectively communicate what his needs were to his physician, and that she listened and agreed with him.
The final thing that was also huge about Wednesday last week, the last day of summer vacation, was that I spent a good part of that cold, wet, grey day prepping the boys for Thursday, which was the first day of school. I pepped a lot of food, so I could make the first two days of school easier on me, since I was not simply dropping them off. I was planning on being at school, primarily supporting Nathan as he transitions to the classroom, since I was anticipating a rough start. I also had them pick out their clothes, made lunches, and pack backpacks. You know, all stuff "normal"families get to do the day before school.
Wednesday I also took the
So, the last three days of summer 2016 were pretty big for the Anderson Family Circus. And we never have to live those three days again. It is behind us; we are moving forward.
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