There is no delicate way to write this. There is no flowing prose to soften this blow, to make everyone feel better about this not talked about subject. Yet, this is what has been flowing around my raw and messed up head lately.
We go to a lot of doctors appointments. We have a lot of blood draws done. Two of my children have bad teeth so they end up having painful things done at the dentist. These experiences are what brought me to these thoughts.
I also have to state that the folks (with the exception of the evil horrible no good dentist) are all good people who are not trying to hurt my children, they are trying to help. No. What I am going to talk about is the system we all consider normal, necessary, and the way things are done. I am proposing that we change that, but honestly I have no idea where to even start.
I began this series of thought when discussing birth trauma with a friend, many things about the way birth is handled in modern hospitals is traumatic to women, they feel powerless, and are even abused physically though it is for the safety and health of both them and the baby. Many women are outright violated by strangers and it is accepted because that's how OB medicine works. Many birth activists are creating change in this area, both in process and in empowering women with information.
Great! Yay! Cool. Progress.
I was holding down Isaac for his yearly blood draw, he was telling me that he is a brave boy, like a bear! and I was cooing that it would be over soon, he is a good boy, I know it hurts, but it will let us know if he is still healthy, I love him, and his sisters held his hand and sang to him while he was restrained by us and in pain.
What are we doing to special needs and medical needs children? I know what I described sounds like a loving mother, helping her son through a routine and necessary procedure so let me keep going.
What about this? My 8 year old had to have a tooth extracted and the dentist decided to pull three instead, without telling us, and knowing that the pain meds were not working. He said to her, be still, be a good girl, it will hurt you if you are not still. She said that she would bite him, and she did. He withheld the prize at the end, said a few nasty things to her. It was awful. Yes, I filed a report. Let's look at the situation though, without jackass dentist being a jackass. Young child held down, in pain, pain being inflicted, being bribed with toys and rewards, told be a good girl.
Are we grooming our special needs children to be victims? Trust me, I am not victim blaming here, I do no believe that victims are at all at fault to the evils inflicted on them, NOT EVEN A LITTLE BIT. However, we also as a culture acknowledge that predators of a certain kind will condition and court their child victims. What I am asking is, are we doing that? Are we setting our children up to submit to pain and terror by people in medical authority because it is medically necessary and does the way that we do that set them up, condition their personalities to more easily submit to others in authority who might abuse them?
Abuse of special needs adults is something we talk about as a culture, and physical abuse of special needs children has made the news too with the "quiet rooms" and deadly restraint incidences.... but that's not what I am thinking of this time.
Here's what is going to be hard to talk about and hard to wrap our minds around- I am talking about sexual exploitation and abuse. Too often, when I am holding my children for medical procedures, the verbal comfort from nurses and even me sounds exactly like what rapists say to their victims. It will be over soon. I know it hurts, but it is for your own good. You want to be healthy, right? I love you.
When the baby grows into a toddler and young child, when they know enough about what is happening to be afraid? The nurses at one visit were upset that I told my daughter that the shots would hurt and that I was sorry. They told me it is better not to let her know and just go and do it. We tried that once and she had nightmares for weeks. A sneak attack is wrong, so wrong, but completely excepted!
Young children have the intelligence to know and fear pain, but not to process the whole it will be over soon, for the greater good internal argument. We are violating their bodies with exams, shots, blood draws, tooth extraction, and a lot of other things. Medically necessary is a concept that adults understand and children do not, so we victimise them over and over again, holding their hands and cooing at them that it will be ok, that we love them.
I don't know how to change this. I read about a drug some doctors give children called Versed that will eliminate their memory of the event. Immediately I thought it was like a date rape drug and was shaken by the idea, but the more I consider it, I certainly would prefer this to the nightmares and anxiety, if the drug works like they think it does.
Lily has asked me to never take her to a male dentist again. I don't know where she got the idea that a female dentist would be better, but that was her gut reaction. She fights back. She can tell me her concerns and fears and I help her make choices and feel empowered. Isaac is non-verbal. Many special needs children have communication issues. What about them? What are they feeling? How can we empower them through painful and invasive exams and make sure they fully understand good touch and bad touch? Will someone evil take advantage of their vulnerability and inability to communicate?
The painful answer is that we can't. Not for all of them. Our words and actions and methods for how these procedures, routine or major, has to change. We have to consider the whole person that they are or we'll be fixing their bodies but breaking them on the inside. PSTD and anxiety is already a major issue with special needs children. If we do not consider the full ramification of this, it will eventually be just another headline we don't talk about.
A blog about farming, unschooling, feminism, 22q deletion syndrome, cooking real food, homesteading, permaculture, and motherhood.
Thursday, 31 October 2013
Tuesday, 29 October 2013
Hot Hot Hot
This year we had so many peppers grow in our garden and then a friend lent me her dehydrator. This is the result!
Sunday, 27 October 2013
Duckling Artist
I love art time. I love it so much that I stock our cupboards with high quality art supplies right along side of the crayola versions and let my kids pick without freaking out about it. They each have table top easels they can use (2 of them are actually cast iron recipe book holders). The get a call from me now and then to come to the table and paint with me and sometimes they take the invitation. More likely it is them I find already working and messy.
This day it was Lily and Isaac. Holly was busy with her ballet exercises and would not be distracted. She is very dedicated but refuses to help me fill out her weekly form for class. She says she's not in it for the prize? Ha.
Lily was super patient with Isaac and got him all set up to go.
I also love the sunlight in this room, this time of day, and all the wonderful colours of our nest. Every now and then I contemplate painting the whole downstairs pale shades of grey because the orange and green paint job was done so sloppy and horrible. Only I notice that though, I guess! Still it bothers me when I get in a mood. I suppose I could sand down the roller lines and repaint the bright colours? That might work too.
I get so wrapped up in colour and art when we get these projects going. I just want to take it all in and be in the moment.... but then paint starts getting smeared on to the table, diapers need to be changed, and art work is set to dry.... suddenly I am alone at the table left only with a glorious mess and the distant sounds of children laughing and playing at some new game.
And that, friends, is my day.
Night Eyes, Isaac's First
Carving Pumpkins
When we lived in the city, I gave up carving pumpkins and setting them outside. They would get smashed. One year we set them inside and they rotted all over the floor. Yuck.
When Lily looked at us, brokenhearted, it moved us that much closer to the urgency we felt of moving to a farm.
Now, the kids can delight in the process, set them outside and when they start to rot the chickens do the clean up. Rock on mother nature.
My favourite part of this night was not the creativity or the songs....no, this time Lily helped Holly carve her own pumpkin. Holly had never done this before on her own. It was lovely, peaceful, and full of joy. Isaac wanted nothing to do with the project though. Maybe next year.
Thursday, 24 October 2013
Wednesday, 23 October 2013
National Novel Writing Month
http://nanowrimo.org/
I have always wanted to do this officially, I have followed along and failed after about 3 days, cheered others on wishing I had stuck with it......
I'm done with the sidelines though. I am going to do this and do this all the way.
I have always wanted to do this officially, I have followed along and failed after about 3 days, cheered others on wishing I had stuck with it......
I'm done with the sidelines though. I am going to do this and do this all the way.
Tuesday, 22 October 2013
4th and Court, revisiting
In Des Moines there is this really cool entertainment district called Court Avenue. One one corner is the Randolf Hotel, which Jack Kerouac is said to have stayed at when he penned that Des Moines, Iowa has the prettiest girls in the world.
When I first moved to Des Moines, the girl that was assigned as my new student ambassador, her name was Allie (I think), brought me to Java Joe's on a Wednesday night. It was certainly different that the rest of what I had seen in Des Moines to that point, and my first night out with friends/peers since I had moved to Iowa.
I fell in love. Everything about the place, from the deep circus like colours, the smell of roasting coffee, the goth kids smoking Pall Malls on the sidewalk, bikers roaring up and down the streets, and the live open mic music and poetry bleating from the makeshift stage. Love. Serious love. The kind of love that had me awestruck. No other place I had ever been in my life had felt like the energy and promise that swirled around the small coffee house that night.
And so I returned. I stepped on the stage for open mic night. I fell in love over coffee. I read The Great Gatsby and the Catcher in The Rye and wrote ridiculous essays over the metaphors and meaning in each. I drew pen and ink sketches and filled in the white space with emotional and terrible, really terrible, poetry.
I also found myself exploring other coffee houses, other book stores, other live recitation and music events, but Java Joe's was my gateway to this medium.
****
So tonight I am meeting a group of fantastic women, a brave girls club of sorts, for dinner. As I parked in the garage and walked up Court and then 4th, I was struck by how much this place has changed. There are still homeless and in crisis people who spend time in front of the Randolf and the Bail Bonds storefront. The warm perfumey smell of fabric softener clashes with the smell of Asian food and deep fried something, accented by old cigarette smoke, and car exhaust. There seems to be a lot more street traffic than there used to be, but it is also earlier in the evening than I used to show up as a teenager.
Now there are apartments, swanky ones, not just the hotel room scary ones that were here when I was a teen and newly looking for my own place. The farmer's market is one of the best in the country and it fills the district with people and fresh food every weekend. There are more restraunts, more bars, more of everything, yet the modest coffee shop still thrives right in the middle of it all, still holding her identity and charm. Still playing Ani D'Franco and Mazzi Star and roaring up custom coffee drinks while local artists scribble furiously in their sketchbooks. Still standing.
I have come full circle too. Maybe that is why I am drawn to this place again. I have purple and red streaks in my head, have taken up poetry again. I feel very much like that lost girl I was fresh and new to Iowa 20 years ago, both brave and terrified at what the future may hold. So many unknowns.
These last 20 years have been filled with love and laughter, so much that the hardships are mere shadows in memory. That is how life should be after all.
When I first moved to Des Moines, the girl that was assigned as my new student ambassador, her name was Allie (I think), brought me to Java Joe's on a Wednesday night. It was certainly different that the rest of what I had seen in Des Moines to that point, and my first night out with friends/peers since I had moved to Iowa.
I fell in love. Everything about the place, from the deep circus like colours, the smell of roasting coffee, the goth kids smoking Pall Malls on the sidewalk, bikers roaring up and down the streets, and the live open mic music and poetry bleating from the makeshift stage. Love. Serious love. The kind of love that had me awestruck. No other place I had ever been in my life had felt like the energy and promise that swirled around the small coffee house that night.
And so I returned. I stepped on the stage for open mic night. I fell in love over coffee. I read The Great Gatsby and the Catcher in The Rye and wrote ridiculous essays over the metaphors and meaning in each. I drew pen and ink sketches and filled in the white space with emotional and terrible, really terrible, poetry.
I also found myself exploring other coffee houses, other book stores, other live recitation and music events, but Java Joe's was my gateway to this medium.
****
So tonight I am meeting a group of fantastic women, a brave girls club of sorts, for dinner. As I parked in the garage and walked up Court and then 4th, I was struck by how much this place has changed. There are still homeless and in crisis people who spend time in front of the Randolf and the Bail Bonds storefront. The warm perfumey smell of fabric softener clashes with the smell of Asian food and deep fried something, accented by old cigarette smoke, and car exhaust. There seems to be a lot more street traffic than there used to be, but it is also earlier in the evening than I used to show up as a teenager.
Now there are apartments, swanky ones, not just the hotel room scary ones that were here when I was a teen and newly looking for my own place. The farmer's market is one of the best in the country and it fills the district with people and fresh food every weekend. There are more restraunts, more bars, more of everything, yet the modest coffee shop still thrives right in the middle of it all, still holding her identity and charm. Still playing Ani D'Franco and Mazzi Star and roaring up custom coffee drinks while local artists scribble furiously in their sketchbooks. Still standing.
I have come full circle too. Maybe that is why I am drawn to this place again. I have purple and red streaks in my head, have taken up poetry again. I feel very much like that lost girl I was fresh and new to Iowa 20 years ago, both brave and terrified at what the future may hold. So many unknowns.
These last 20 years have been filled with love and laughter, so much that the hardships are mere shadows in memory. That is how life should be after all.
Saturday, 19 October 2013
Writing About Writing
I am writing about writing when I should be writing about farming or food or science fiction tropes. Still, this is important.
Why?
I am not alone in my struggles as a writer. It has taken me a decade and then some to even call myself a writer, though as a child it was easy. I still get surprised when I find out that people read what I am writing and it matters to them, that my stories are inspiring or encouraging, or just interesting and entertaining. I shrink back and think they must have mistaken me for someone else.
I write to entertain myself mostly. I learn about things for the same reason. The world around me is fascinating and complex and interesting. I write to process that. I write love letters to my children so they know how much they are adored and valued, if ever they forget or I am not there to remind them.
When I spend time around other writers I get paralysed and act all fan girl and breathless and squee a lot. Especially food writers. I get panicked that I managed to get myself in a place where I am in face to face conversation and there I am making an ass of myself. I am really trying so hard to not do that, practising composure, but it really is a mindset of unworthiness. Do I not value what I have to say? Do I not value the time and effort and skill I am working on to be a writer? Why the anxiety?
I have been setting aside 30 minutes a day and a 4 hour chunk every week just to write and blog. Sometimes the stress of work creeps in and menaces me while I write, but that time is MINE. This has often meant late nights typing in the dark with an almost three year old sleep thrashing across my lap while I use a back lit keyboard to find my words. It often means I hit draft instead of publish because it is so late I doubt my grammar skills or cannot find just the right photograph. I still do it though, I still write.
When the question is posed- write or nap, I chose write. When the choice is between laundry, dishes, or write.....I choose write. I only don't chose write when my kids need to be fed or need a dance partner or someone to mix paints and recite poetry in a silly voice. It is a tricky balance to write and to also live a life worth writing about.
That is old advice from my Professor at Drake Carol Spaulding; she said, "Don't do into a career that you spend your days writing for other people. Be a bricklayer by day and use the time to live a life worth writing about."
I get that.
I actually studied bricklaying and historic preservation once I graduated and thought about her wisdom as I battled squirrels in the kitchen while restoring our 1887 Victorian. I think about those words as I walk in our pastures and check on the sheep, as I catch fireflies on a summer day with my children, as I navigate the narrow and sterile and freaking terrifying world of being a parent to a special needs baby and now toddler. Am I living a life worth writing about? Am I living a life that feeds me as a writing, nourishing my mind and my words?
Honestly I am out of practise and daily writing is helping sharpen my pen work, get the ink flowing, and bring back my writer's wild mind. The balance of life and writing is not easy, but so so worth it.
I recently read this comic panel: Zen Pencils
Yes. Exactly.
So fellow writers- go write. When the choice is there between watching a marathon of Orange is the New Black and writing- choose wisely. When the choice is between making your bed or crawling back in with your laptop and pounding out another recipe post or short story involving an antagonist who is actually infected with a tongue eating mouth parasite, write that and maybe illustrate that too.
Why?
I am not alone in my struggles as a writer. It has taken me a decade and then some to even call myself a writer, though as a child it was easy. I still get surprised when I find out that people read what I am writing and it matters to them, that my stories are inspiring or encouraging, or just interesting and entertaining. I shrink back and think they must have mistaken me for someone else.
I write to entertain myself mostly. I learn about things for the same reason. The world around me is fascinating and complex and interesting. I write to process that. I write love letters to my children so they know how much they are adored and valued, if ever they forget or I am not there to remind them.
When I spend time around other writers I get paralysed and act all fan girl and breathless and squee a lot. Especially food writers. I get panicked that I managed to get myself in a place where I am in face to face conversation and there I am making an ass of myself. I am really trying so hard to not do that, practising composure, but it really is a mindset of unworthiness. Do I not value what I have to say? Do I not value the time and effort and skill I am working on to be a writer? Why the anxiety?
I have been setting aside 30 minutes a day and a 4 hour chunk every week just to write and blog. Sometimes the stress of work creeps in and menaces me while I write, but that time is MINE. This has often meant late nights typing in the dark with an almost three year old sleep thrashing across my lap while I use a back lit keyboard to find my words. It often means I hit draft instead of publish because it is so late I doubt my grammar skills or cannot find just the right photograph. I still do it though, I still write.
When the question is posed- write or nap, I chose write. When the choice is between laundry, dishes, or write.....I choose write. I only don't chose write when my kids need to be fed or need a dance partner or someone to mix paints and recite poetry in a silly voice. It is a tricky balance to write and to also live a life worth writing about.
That is old advice from my Professor at Drake Carol Spaulding; she said, "Don't do into a career that you spend your days writing for other people. Be a bricklayer by day and use the time to live a life worth writing about."
I get that.
I actually studied bricklaying and historic preservation once I graduated and thought about her wisdom as I battled squirrels in the kitchen while restoring our 1887 Victorian. I think about those words as I walk in our pastures and check on the sheep, as I catch fireflies on a summer day with my children, as I navigate the narrow and sterile and freaking terrifying world of being a parent to a special needs baby and now toddler. Am I living a life worth writing about? Am I living a life that feeds me as a writing, nourishing my mind and my words?
Honestly I am out of practise and daily writing is helping sharpen my pen work, get the ink flowing, and bring back my writer's wild mind. The balance of life and writing is not easy, but so so worth it.
I recently read this comic panel: Zen Pencils
Yes. Exactly.
So fellow writers- go write. When the choice is there between watching a marathon of Orange is the New Black and writing- choose wisely. When the choice is between making your bed or crawling back in with your laptop and pounding out another recipe post or short story involving an antagonist who is actually infected with a tongue eating mouth parasite, write that and maybe illustrate that too.
The Moment Things Change
I remember the day that Isaac's diagnosis was given to us over the phone. It was unexpected even though there had been problems that had landed us at the specialists' offices and doing a CAT scan and micro array genetic tests.
I remember the days that each specialist signed off and told us we no longer needed follow up.
What is harder to pinpoint are the days leading up. Isaac is getting healthier every day, but it is a slow process and harder to see day by day.
Last night while nursing him to sleep I reach down to tuck him in and noticed that his legs are getting chubby and thick, almost muscular. His belly is squishy. While other toddlers slim out when they start walking, Isaac seems to be filling out instead, building strength and making him more steady day by day. Last night wasn't the first night I squished at him, but it was the first time I realised what good this means.
He grew 2.5 inches since February. Gained 3 lbs. He's walking now. This morning, even though it wasn't spoken clearly, Isaac said, "Move please Lily," and, "Here is this Daddy!". He's beginning to try to vocalise sentences even if it sounds like babble to us. He is signing about 20 new signs in the last 3 weeks.
These things are good things, progress, but slow progress. This progress is what we lean on when we start to get discouraged.
These things are too easy to forget when the pressure is put on us by doctors in offices that only see our kid for moments of their lives once or twice a year, trotting out the catch phrase, "impaired cognitive development," when parents question any recommendation. I was thrown that phrase when Isaac's iron levels were sort of low (but not for a breastfed baby) and when he was diagnosed as deaf. The second time doused me with cold water. Deafness impairs cognitive ability? I seriously doubt the med student and doctor would dare say that to my blogger friend Mare or any number of deaf adults I have encountered in my academic career both as a student and professor.
It was those experiences that knocked the sense into me in that moment. They were recommending an expensive surgery to place tubes, a surgery that was not guaranteed to work, not without risk both short term and long term, and the main argument for doing it was cognitive impairment since Isaac has never had discomfort or infection (both are valid reasons to do surgery, in my opinion, but Isaac had neither).
I asked for time to think about it, time to look into other options and also look into price points of different surgical centres.
In the time I gifted my son, I learned a lot of different things. I learned that kids can outgrow the fluid issue, that NUCCA chiropractic care was inexpensive and effective specifically for this kind of deafness, and that surgical centres not only vary wildly in price, they are not used to being asked about costs because hardly anyone price point shops. In addition, they vary in how competent their support staff is and how well they understand genetic conditions.
So when I forget or get caught up in the day to day mundane of Isaac's wonderful progress, I remind myself of his laugh, his strong body, his sense of humour, and all the work we have all done to bask in the glow of his health.
These days are not each as heartbreaking or as shocking as those first days of diagnosis, but even though they are small and beautiful and gentle on our hearts, they bring the change that we have been waiting for. They herald calm waters, sunny days, and we can settle in and enjoy our family.
I remember the days that each specialist signed off and told us we no longer needed follow up.
What is harder to pinpoint are the days leading up. Isaac is getting healthier every day, but it is a slow process and harder to see day by day.
Last night while nursing him to sleep I reach down to tuck him in and noticed that his legs are getting chubby and thick, almost muscular. His belly is squishy. While other toddlers slim out when they start walking, Isaac seems to be filling out instead, building strength and making him more steady day by day. Last night wasn't the first night I squished at him, but it was the first time I realised what good this means.
He grew 2.5 inches since February. Gained 3 lbs. He's walking now. This morning, even though it wasn't spoken clearly, Isaac said, "Move please Lily," and, "Here is this Daddy!". He's beginning to try to vocalise sentences even if it sounds like babble to us. He is signing about 20 new signs in the last 3 weeks.
These things are good things, progress, but slow progress. This progress is what we lean on when we start to get discouraged.
These things are too easy to forget when the pressure is put on us by doctors in offices that only see our kid for moments of their lives once or twice a year, trotting out the catch phrase, "impaired cognitive development," when parents question any recommendation. I was thrown that phrase when Isaac's iron levels were sort of low (but not for a breastfed baby) and when he was diagnosed as deaf. The second time doused me with cold water. Deafness impairs cognitive ability? I seriously doubt the med student and doctor would dare say that to my blogger friend Mare or any number of deaf adults I have encountered in my academic career both as a student and professor.
It was those experiences that knocked the sense into me in that moment. They were recommending an expensive surgery to place tubes, a surgery that was not guaranteed to work, not without risk both short term and long term, and the main argument for doing it was cognitive impairment since Isaac has never had discomfort or infection (both are valid reasons to do surgery, in my opinion, but Isaac had neither).
I asked for time to think about it, time to look into other options and also look into price points of different surgical centres.
In the time I gifted my son, I learned a lot of different things. I learned that kids can outgrow the fluid issue, that NUCCA chiropractic care was inexpensive and effective specifically for this kind of deafness, and that surgical centres not only vary wildly in price, they are not used to being asked about costs because hardly anyone price point shops. In addition, they vary in how competent their support staff is and how well they understand genetic conditions.
So when I forget or get caught up in the day to day mundane of Isaac's wonderful progress, I remind myself of his laugh, his strong body, his sense of humour, and all the work we have all done to bask in the glow of his health.
These days are not each as heartbreaking or as shocking as those first days of diagnosis, but even though they are small and beautiful and gentle on our hearts, they bring the change that we have been waiting for. They herald calm waters, sunny days, and we can settle in and enjoy our family.
Tuesday, 15 October 2013
Perspective in Suburbia
Everybody has bad days. Today, not even 1pm yet, has been pretty hilariously humiliating.
I could not fall asleep until about 3 am and then wake up and go started at 5am. So 2 hours of sleep. I felt sick immediately and so tired that I was dizzy. Dressed and loaded up the kids to drive Chad to Des Moines for work. Isaac wasn't wet yet, so I didn't change him.
I got 45 minutes more of sleep in the car as a passenger. We dropped Chad off and I took the kids to the Drake Diner.
Sounds good so far right? Wrong. The thing I ordered was disgusting. Usually, Drake Diner has the best food ever, but not this morning. Still, it was food and I ate it.
Still too early for ballet lessons, we stopped at Target to buy new shoes. Holly has been wearing 12 kids. She's actually a size 2 in big kid. Yikes. Poor kid. Also, she is 5! SIZE 2!
Heading to the clothing department I felt something around my ankles and almost trip. I look down mortified.
Mortified.
My wrap skirt had come untied and was around my ankles. It was tangled and needed to be pulled off my body to untwist, but I was unwilling to uncover the cloth I had clutched around my mid section. I started to cry as more and more people turned to look. Lily held up her hands and blocked the view the best she could.
We made our way to the bathroom, where I promptly threw up for the next 10 minutes. I do not do well with public humiliation. Who does? Really?
So...my day has to get better right?
I look at it this way. Worse things are happening in the world right now. I am lucky I have clothing at all. I am privileged to be able to buy my kids new shoes at Target. I was very lucky to make it to the bathroom, children in arms, in time. Grateful for clean water to clean up with, even when I realised Isaac was poopy and the smell so wretched that I vomited again. Again.
20 minutes later, our cart was still parked by the register with all of our things in it. The cashier asked if I was ok. Clearly, I looked pretty wrecked.
We still had ballet to get to and sign class. We survived both, taking each task one at a time.
Now we are at the library. The kids picked out bright orange sweat shirt hoodies for deer season timber play (and park day mama can track all three kids in matching bright things). All three have new shoes that fit, I think (Isaac is hard to tell, but I think they will work, he has to wear them for day to be sure....). They ate lunch and are occupied with library things while I blog and soon grade more papers. Tonight is the last night for a while of art class and when I get home I will crash into bed and sleep until I am done. I have a bed, a dry warm home, and a loving family. Bad days do not take that from me. Humiliation is a moment that passes by, is swept away like tumbleweeds on a windy day. I am pretty sure no one vlogged it. Pretty sure. That would be awful. I'll check youtube later just to be sure. Sigh.
My skirt is now tied so tight I may have to cut it off tomorrow. It will not fall off again though.
So, chin up. It could be worse. Your pants/skirt could drop in the middle of a crowded suburban store and lead to a barf fest. Hang in there all!
I could not fall asleep until about 3 am and then wake up and go started at 5am. So 2 hours of sleep. I felt sick immediately and so tired that I was dizzy. Dressed and loaded up the kids to drive Chad to Des Moines for work. Isaac wasn't wet yet, so I didn't change him.
I got 45 minutes more of sleep in the car as a passenger. We dropped Chad off and I took the kids to the Drake Diner.
Sounds good so far right? Wrong. The thing I ordered was disgusting. Usually, Drake Diner has the best food ever, but not this morning. Still, it was food and I ate it.
Still too early for ballet lessons, we stopped at Target to buy new shoes. Holly has been wearing 12 kids. She's actually a size 2 in big kid. Yikes. Poor kid. Also, she is 5! SIZE 2!
Heading to the clothing department I felt something around my ankles and almost trip. I look down mortified.
Mortified.
My wrap skirt had come untied and was around my ankles. It was tangled and needed to be pulled off my body to untwist, but I was unwilling to uncover the cloth I had clutched around my mid section. I started to cry as more and more people turned to look. Lily held up her hands and blocked the view the best she could.
We made our way to the bathroom, where I promptly threw up for the next 10 minutes. I do not do well with public humiliation. Who does? Really?
So...my day has to get better right?
I look at it this way. Worse things are happening in the world right now. I am lucky I have clothing at all. I am privileged to be able to buy my kids new shoes at Target. I was very lucky to make it to the bathroom, children in arms, in time. Grateful for clean water to clean up with, even when I realised Isaac was poopy and the smell so wretched that I vomited again. Again.
20 minutes later, our cart was still parked by the register with all of our things in it. The cashier asked if I was ok. Clearly, I looked pretty wrecked.
We still had ballet to get to and sign class. We survived both, taking each task one at a time.
Now we are at the library. The kids picked out bright orange sweat shirt hoodies for deer season timber play (and park day mama can track all three kids in matching bright things). All three have new shoes that fit, I think (Isaac is hard to tell, but I think they will work, he has to wear them for day to be sure....). They ate lunch and are occupied with library things while I blog and soon grade more papers. Tonight is the last night for a while of art class and when I get home I will crash into bed and sleep until I am done. I have a bed, a dry warm home, and a loving family. Bad days do not take that from me. Humiliation is a moment that passes by, is swept away like tumbleweeds on a windy day. I am pretty sure no one vlogged it. Pretty sure. That would be awful. I'll check youtube later just to be sure. Sigh.
My skirt is now tied so tight I may have to cut it off tomorrow. It will not fall off again though.
So, chin up. It could be worse. Your pants/skirt could drop in the middle of a crowded suburban store and lead to a barf fest. Hang in there all!
Brave Bear
Today Isaac had his blood drawn for labs. This is one of the regular parts of our routine. 22q can mess up blood chemistry in some messed up, dangerous ways. Since Isaac doesn't have some of the other symptoms, this and mental health are the things we monitor closely, especially since he was born with jaundice and low iron and it took a really long time to fix those lows.
Early on, I insisted on trying to address his lows with nutrition. His lows were never dangerous lows (except the jaundice). However, early on we were doing blood work every week and then every so many weeks, then monthly. We have become experts on what works for him for blood draws because early on we let the big hospital lab do their thing and their thing involved student nurses and a whole lot of incompetence. Isaac still cannot have blood drawn from his right arm because of how they injured him in an attempted draw. They never got the sample from him, which was a good thing, because they were going to take it all at once and the amount was supposed to be taken from three separate sessions! THREE! For a 6 lb anaemic baby it could have been tragic. Good grief, I am so glad my mommy instincts caused me to walk him out of that lab and never look back. We drove home and went to the urgent care here in our small town.
Since that day, only the specialists in Minneapolis and our local small town nurse are allowed to draw from him. She called me the day after his first big draw post diagnosis and asked questions about his condition. The next time we went in she was ready.
1) She splints his good arm.
2) heat pack
3) I am to make sure he is fully hydrated
4) 10 am works best for him
5) he lays down on a cot- not sitting, not held in my arms
We do this every time he needs the labs. Lily (8) and Holly (5) are always there. We have tried a couple different approaches to how they behave and interact in the room and this is what works for us:
1) They bring their baby dolls in their slings.
2) They talk to their dolls about getting blood drawn.
3) Holly sings to Isaac while Lily hold his hand and strokes his head. I keep his legs and torso secure and make eye contact with him.
Today was different than any of the other times though.
Today, Isaac was old enough to understand this was something he participates in- not just subjected to. It has been 9 months since his last one. Blood labs and draws on babies are hard for everyone, usually he screams and thrashes. Not this time. He only cried at the very end, told/signed to us he was being brave like a bear. Aw.
Part of me is sad that this is part of his normal, our normal, so much that he understands that if he participates it goes better for him. I am also so proud of my brave boy.
We are extremely lucky that so far our nutrition approach has been working. His levels slowly improved and are in the normal range. Iron got significantly better once he started eating solids and took a preference to meat. Ha. His growth hormone remains low normal, and at first the docs were pushy about growth hormone injections. I have written about how that went down before. He will not be taking those, thank you. Being short is not a medical condition. If the low normal ever affects his internal organs or operating systems malfunction because of it, then, and only then, will we consider it.
Calcium and vitamin D are the two other big ones we check on. His D hovers around 20. Pre 2010 that was considered good. Now 40 is the aim. I don't buy that though. The research isn't substantiated enough for me yet and Isaac is in excellent health. We do give him cod liver oil and extra mushrooms in the winter and greyer days, now we cook more with lard too (also a good source of D IF the animals are raised on pasture). We don't use sunscreen and he gets playtime outside on sunny days, every day that is sunny. So far, so good.
It is pretty amazing how healthy he is though. I know that the docs bristled at my hippie, wait and see, lets heal him with food approach.....at first. Now though, sometimes I get calls from them asking about sources and brands and they send med students in to chat with me. Really our whole family has benefited from my hyper vigilance on nutrition, though I was headed that direction before Isaac was born, he has driven home for us how very important and effective whole health nutrition can be. Sure his labs were slow to improve, but they did.
Still, today was a turning point. He is growing up.
Early on, I insisted on trying to address his lows with nutrition. His lows were never dangerous lows (except the jaundice). However, early on we were doing blood work every week and then every so many weeks, then monthly. We have become experts on what works for him for blood draws because early on we let the big hospital lab do their thing and their thing involved student nurses and a whole lot of incompetence. Isaac still cannot have blood drawn from his right arm because of how they injured him in an attempted draw. They never got the sample from him, which was a good thing, because they were going to take it all at once and the amount was supposed to be taken from three separate sessions! THREE! For a 6 lb anaemic baby it could have been tragic. Good grief, I am so glad my mommy instincts caused me to walk him out of that lab and never look back. We drove home and went to the urgent care here in our small town.
Since that day, only the specialists in Minneapolis and our local small town nurse are allowed to draw from him. She called me the day after his first big draw post diagnosis and asked questions about his condition. The next time we went in she was ready.
1) She splints his good arm.
2) heat pack
3) I am to make sure he is fully hydrated
4) 10 am works best for him
5) he lays down on a cot- not sitting, not held in my arms
We do this every time he needs the labs. Lily (8) and Holly (5) are always there. We have tried a couple different approaches to how they behave and interact in the room and this is what works for us:
1) They bring their baby dolls in their slings.
2) They talk to their dolls about getting blood drawn.
3) Holly sings to Isaac while Lily hold his hand and strokes his head. I keep his legs and torso secure and make eye contact with him.
Today was different than any of the other times though.
Today, Isaac was old enough to understand this was something he participates in- not just subjected to. It has been 9 months since his last one. Blood labs and draws on babies are hard for everyone, usually he screams and thrashes. Not this time. He only cried at the very end, told/signed to us he was being brave like a bear. Aw.
Part of me is sad that this is part of his normal, our normal, so much that he understands that if he participates it goes better for him. I am also so proud of my brave boy.
We are extremely lucky that so far our nutrition approach has been working. His levels slowly improved and are in the normal range. Iron got significantly better once he started eating solids and took a preference to meat. Ha. His growth hormone remains low normal, and at first the docs were pushy about growth hormone injections. I have written about how that went down before. He will not be taking those, thank you. Being short is not a medical condition. If the low normal ever affects his internal organs or operating systems malfunction because of it, then, and only then, will we consider it.
Calcium and vitamin D are the two other big ones we check on. His D hovers around 20. Pre 2010 that was considered good. Now 40 is the aim. I don't buy that though. The research isn't substantiated enough for me yet and Isaac is in excellent health. We do give him cod liver oil and extra mushrooms in the winter and greyer days, now we cook more with lard too (also a good source of D IF the animals are raised on pasture). We don't use sunscreen and he gets playtime outside on sunny days, every day that is sunny. So far, so good.
It is pretty amazing how healthy he is though. I know that the docs bristled at my hippie, wait and see, lets heal him with food approach.....at first. Now though, sometimes I get calls from them asking about sources and brands and they send med students in to chat with me. Really our whole family has benefited from my hyper vigilance on nutrition, though I was headed that direction before Isaac was born, he has driven home for us how very important and effective whole health nutrition can be. Sure his labs were slow to improve, but they did.
Still, today was a turning point. He is growing up.
Monday, 14 October 2013
Nostalgia
Today I spent steeped in nostalgia, like a cup of freshly brewed earl grey tea with honey and a piece of hazelnut chocolate.
Lily wanted to know about her name and the day she was born.
Holly wanted to see what she looked like as a baby.
Chad wanted pictures of our first house and garden in Sherman Hill.
Someone asked to see pictures of our Riverbend house.
All of it, brought me to the photograph archive of our pre-farm years. It is pretty interesting to look back and see the mother I was, the kind of friend I was, my ideology on urban blight....all of those things have changed.
This was our city garden. This was Lily mud-o-potomus. She was a natural from the first day her feet touched earth. She was the driving force behind moving to the farm. Good grief she was adorable. She still is too.
Sometimes I miss the simpler time we had being urban gardeners, homesteading our little backyard. It was much easier than managing the food source for 40 families and my own. Still, I cannot imagine life any other way now. We are farmers. There is no doubt about that now.
Lily wanted to know about her name and the day she was born.
Holly wanted to see what she looked like as a baby.
Chad wanted pictures of our first house and garden in Sherman Hill.
Someone asked to see pictures of our Riverbend house.
All of it, brought me to the photograph archive of our pre-farm years. It is pretty interesting to look back and see the mother I was, the kind of friend I was, my ideology on urban blight....all of those things have changed.
This was our city garden. This was Lily mud-o-potomus. She was a natural from the first day her feet touched earth. She was the driving force behind moving to the farm. Good grief she was adorable. She still is too.
Sometimes I miss the simpler time we had being urban gardeners, homesteading our little backyard. It was much easier than managing the food source for 40 families and my own. Still, I cannot imagine life any other way now. We are farmers. There is no doubt about that now.
"who strives valiantly; who errs"
“It is not the critic who counts; not the man who points out how the
strong man stumbles, or where the doer of deeds could have done them
better. The credit belongs to the man who is actually in the arena,
whose face is marred by dust and sweat and blood; who strives valiantly;
who errs, who comes short again and again,
because there is no effort without error and shortcoming; but who does
actually strive to do the deeds; who knows great enthusiasms, the great
devotions; who spends himself in a worthy cause; who at the best knows
in the end the triumph of high achievement, and who at the worst, if he
fails, at least fails while daring greatly, so that his place shall
never be with those cold and timid souls who neither know victory nor
defeat.”
Theodore Roosevelt
I came across this quote tonight. I sat hours writing, deleting, writing again only to fall short of what I wanted to say.
This week has been hard. This month has been hard. Fall is our busiest season on the farm, the kids have extra classes for 6 weeks, our vehicles took turns getting tuned up and fixed for winter. Sheep shearing, lambs to locker, sows to locker, sausage for retail sales, Farm Crawl, Sample Sunday, extra things at church, the kids getting sick, canning, drying, harvest, tincturing, my aunt visiting.....goodness. Even typing that out makes me feel tired. Not to mention laundry (washer #2 broke dramatically, only catching on fire would have been more dramatic. I hate front loaders.), dishes (never ending hell of hand washing dishes while canning, baking, and such), and extra laundry and dishes because of kid illness.
Of course the first week of October had to land in the middle of this. This week is a personal anniversary for me, a life changing event 15 years ago, and every year I try something different to get through it. I have diagnosed PSTD and every year it gets a lot better, except for this one week.
So, in the middle of frantic so much to do and the kids getting sick, I took a week off. Cancelled lessons, pick ups, deliveries, appointments. All of it. I snuggled down. I didn't blog. I avoided the computer. I took care of me and my family. I am still battling a cough and the bone aching weariness that happens when October 8th hits and the dark clouds blow away.
A friend asked me to write about how I balance all of this schedule heavy, family intense, activity and not lose my mind and body. I would also like to know. Ha. Then in church I overheard a couple of ladies talking about people who just decide to do something and then do it. That's us to a t.
We wanted an old house, so we bought one. When we decided to farm, we packed up and moved toward that (new to us old house of course!). We wanted bees. We got bees. We wanted to raise pigs, chickens, cow- we worked for that too. It isn't enough to dream, you have to plan and work and prepare for it. We are always learning and most energised when learning something interesting and new to us.
Sure, things have happened that we couldn't or didn't prepare for- coyote predation on the sheep flock, our dog almost dying of screw worm infestation, our son being born with a genetic condition- but we were prepare by the life of doing to keep on doing. We fail. We get up. We try again or try something else. Each day.
These last two weeks were hard. Isaac was in the ER overnight with breathing issues when illness hit our house, but we knew what to do and did. We, Chad and I, take care of each others' needs too- he took a day off so I could sleep when I got sick too. He made sure I had extra time and help when I needed it. Lily saw this and stepped up too. Holly saw that, followed by example. Chain reaction set of by love.
So the secret to how we manage the tasks and hustle and bustle and ups and downs? I'm not sure there is a secret, other than just stepping into the day, hit the ground running. Forgiving myself when I fail. Lifting others up when they need it. Knowing I am not alone and putting as much love into the world as I possibly can. Oh, and coffee. Good joe in a sweet mug is a must.
Theodore Roosevelt
Pork Crown Roast, y'all. Followed by the best apple pie ever. |
This week has been hard. This month has been hard. Fall is our busiest season on the farm, the kids have extra classes for 6 weeks, our vehicles took turns getting tuned up and fixed for winter. Sheep shearing, lambs to locker, sows to locker, sausage for retail sales, Farm Crawl, Sample Sunday, extra things at church, the kids getting sick, canning, drying, harvest, tincturing, my aunt visiting.....goodness. Even typing that out makes me feel tired. Not to mention laundry (washer #2 broke dramatically, only catching on fire would have been more dramatic. I hate front loaders.), dishes (never ending hell of hand washing dishes while canning, baking, and such), and extra laundry and dishes because of kid illness.
Of course the first week of October had to land in the middle of this. This week is a personal anniversary for me, a life changing event 15 years ago, and every year I try something different to get through it. I have diagnosed PSTD and every year it gets a lot better, except for this one week.
So, in the middle of frantic so much to do and the kids getting sick, I took a week off. Cancelled lessons, pick ups, deliveries, appointments. All of it. I snuggled down. I didn't blog. I avoided the computer. I took care of me and my family. I am still battling a cough and the bone aching weariness that happens when October 8th hits and the dark clouds blow away.
A friend asked me to write about how I balance all of this schedule heavy, family intense, activity and not lose my mind and body. I would also like to know. Ha. Then in church I overheard a couple of ladies talking about people who just decide to do something and then do it. That's us to a t.
We wanted an old house, so we bought one. When we decided to farm, we packed up and moved toward that (new to us old house of course!). We wanted bees. We got bees. We wanted to raise pigs, chickens, cow- we worked for that too. It isn't enough to dream, you have to plan and work and prepare for it. We are always learning and most energised when learning something interesting and new to us.
Sure, things have happened that we couldn't or didn't prepare for- coyote predation on the sheep flock, our dog almost dying of screw worm infestation, our son being born with a genetic condition- but we were prepare by the life of doing to keep on doing. We fail. We get up. We try again or try something else. Each day.
These last two weeks were hard. Isaac was in the ER overnight with breathing issues when illness hit our house, but we knew what to do and did. We, Chad and I, take care of each others' needs too- he took a day off so I could sleep when I got sick too. He made sure I had extra time and help when I needed it. Lily saw this and stepped up too. Holly saw that, followed by example. Chain reaction set of by love.
So the secret to how we manage the tasks and hustle and bustle and ups and downs? I'm not sure there is a secret, other than just stepping into the day, hit the ground running. Forgiving myself when I fail. Lifting others up when they need it. Knowing I am not alone and putting as much love into the world as I possibly can. Oh, and coffee. Good joe in a sweet mug is a must.
Saturday, 12 October 2013
Science Experiment: What is this?!
Found this. It rattled and looked like a giant larvae. |
Except it has a stem on the end. Clearly botanical. |
Decided to break it open and see what evil lurked inside. Lily was sure it was a dragon or a giant wasp. |
Subscribe to:
Posts (Atom)