Folklore of my Kitchen

I have been reading Marcus Samulesson's book, Yes, Chef and in the first chapter or three he discusses Berber the spice and how it is the spice he connects with his blood heritage. I love the imagery he uses as he describes and uses it to transition into the story of his birth, loss, and adoption.

It got me thinking about my own cooking and my own culinary story and how to tell it to my children.

If I started with a spice, they know it is Swamp Fire a Cajun seasoned salt that I spent a few years perfecting. We use it often lot on a lot of things. Butter and swamp fire in a well seasoned cast iron skillet with a wooden spoon. This is my heritage. I was not taught to cook on a grandmother's apron or at the side of a parent or aunt or even by a friend. I was taught to cook by fire and poisoning.

Unfortunately, I'm not kidding.

For a wedding gift, a neighbour gave me a cook book, a bottle of wine, and a fire extinguisher. I used them all up before our one year anniversary.

In the first few months of our marriage, Chad ended up in the emergency room with food poisoning, throwing up blood and severely dehydrated. So much that the iv backflowed his blood. I sobbed, guilt ridden, calling his parents at 3 am to come to the hospital.

Then I set the kitchen on fire. Twice. Well, twice that required the fire extinguisher and a couple other times that I could handle by shutting off the stove and closing the oven door waiting for it to just burn off.

My pet parrot imitated the smoke alarm whenever she heard me in the kitchen and sometimes the firetruck siren too.

My dishes at the neighbourhood potlucks would go untouched unless I left them in the grocery store wrapper with label still sealed. Even then, folks proceeded with caution.

I thought all food had to be microwaved before serving to make it safe to eat. I worked at a fast food place as a teen and that was protocol with all the burgers. I washed all the garden produce Chad insisted on with dish soap and was still afraid to eat it.

I could be brought to vomiting just thinking about lard, let alone touching it or having it in my kitchen.

I could actually burn water. I ruined more pots than I care to admit forgetting about tea water.

I never gave up though. I kept trying. I read, I tried, I cooked, I burned, I learned. I asked people to cook in front of me and I studied. I picked up on little tricks of the trade. I stopped using elaborate recipes and opted for the 3-4 ingredient ones. Simple is better. I still failed. I still fail. All the time I make mistakes in the kitchen and I ruin dinner.

I still try, seek out more experience and more things to try. I know three things that I use as my rules:

1) use the best ingredients you can, fresh, well sourced quality ingredients. It is more expensive to throw something of low quality out because it is yucky and have to order pizza than it is to go for quality and just eat a little bit less of it and the fewer ingredients the better. Meat is the easiest to follow this rule. Heat, fat, seasoning- add meat. Veggies too: heat, fat, seasoning. Broiler is usually my favourite for both.
2) Use the right pan or pot for the job.
3) Go slow. Pay attention. Measure. Wait. Experience it. Go slow. Even if you only have 10 minutes to cook, be there in those 10 minutes.

Adding children to the mix complicates things for sure, the 2 hours I had to carefully follow America's Test Kitchen recipes bit by bit is now 10-20 minutes with Netflix blasting Phineas and Ferb or Peep's Big Big World. I make due. I make it work.

We still eat take out of frozen pizza more often than I'd like or fried eggs if there is not time. Still, it is less than we used to and no one has been hospitalised in years from my cooking. Ha!

Anything that is worth doing takes time, not everyone is gifted with the magical spoon and pot. I am logging my hours in and I will not let my children out into the world with only the skills to feed themselves of making instant noodles in the coffee pot and making jiffy mix muffins. They cook along side me.

I do have a few random memories of cooking with my grandmother Mel, a very stern woman who delighted in making us snicker doodle cookies. She would chop potatoes into long sticks before boiling for mashed potatoes and allow us to steal them and snack on the raw potatoes. She called us potato gremlins and would set cookies and carrots along the counter edge to ward off the gremlins. She was a fantastic cook and had a very functional and beautiful kitchen, always clean. She favoured real butter on toast and orange juice with pulp. She didn't care for me much as I grew up though, my purple hair and my own opinions were enough to drive her into a rage. That makes me sad, even now.

As I share more of my kitchen memories, hopefully with recipes, I hope to understand and create my own record of culinary heritage. I am writing, not just for me, but for my children to know me and our collective stories better. A unique familial folklore, if you please.

Peaches, an Introduction and Primer

 I hated peaches. I hated them in mixed fruit medleys, I hated them as a candy. I hated peaches.

Peaches can get a type of freezer burn in transport. They are terrible if grown in the wrong soil, picked at the wrong time, or eaten not ripe. Peaches are like a fine wine and there is a difference.Canned peaches are the same, sugar syrup matters, age, care in canning. At 22, I had never encountered a peach I liked.

Chad tried to convince me at a summer farmers' market when we were first married, I was hesitant and not really very enthusiastic. Oh, but then he handed me a summer kissed Missouri grown peach. He'd taken a bite to make sure it was right, and oh my it was. I was in love. Desperately in love. I could not get enough.

Maybe that was the true beginning to my farm longing. We planted a peach tree at our city house, but the neighbor kids vandalized it every summer over and over. The only peaches I could get were at farmers' markets and in July. No grocery store imported peach would do. I longed for a peach tree within reach of my kitchen.

Our peach trees here at the farm are still saplings. I am still waiting. Until our time comes our neighbors country store gets the most amazing Missouri peaches in every year. These peaches are pie worthy, these peaches are like sunshine in a mouthful. These peaches......oh oh oh oh. Oh how I love peaches. We've planted 20 peach trees.

For this year I shall treat you to my peach recipes and interpretations. I have created a pinterest page too. You can find it here: http://pinterest.com/danelle12stamps/millions-of-peaches/

The plan is to can the peaches starting today, take lots of pictures. Monday will also be full of canning and pie making. Now is your chance id you want to request a recipe too!

What's your favourite peach treat?

Update for Farm and Homeschooling

This week is crammed packed with peaches. Chad graduated from his year long training. Isaac started dancing. Holly began her yearly peach cleanse.......ha! We had farm visitors two of the days, picked berries. Lily caught her first all on her own fish. Staying busy on the farm!

Peach Time Maddness......

I got the call that the peaches are in yesterday morning. That means all of my blogging time has been getting peaches, getting supplies for canning peaches, cleaning equipment to can peaches.......eating peaches. You get the idea.

Expect a who slew of peach recipes and peach talk over the next week. Ha!

Until then check out this really cool local Iowa food blog, Ally's Sweet and Savory Eats!

Look who's got her first guest post? That's right! Me!

It Is Too Late, I'm Too Old

Or.....it is never too late.

Another part of my struggle with just about everything I want to do is that I was a child prodigy. When a child prodigy grows up, she's just a really smart and (slightly?) annoying adult with the whispered memory of having been special and held apart for admiration. A 14 year old surgeon is amazing, but that same kid grows up and a 40 year old surgeon is not notable. The same goes for a child poet. I had talent, it was a gift, but that success is talent nurtured and matured and I did not do that, I walked away.

It is not too late for me to pick the pen back up. I may have to back track a bit and practice, but I can do it. Too often we are told that if you don't start something when you are a child, then it is too late. Guess what folks.....an adult CAN learn a second language, can learn to read music and play an instrument, can learn new skills. It will still take 10,000 hours to get good at it. That's the same as a child, but as an adult we are more mindful of those hours. As an adult we are more critical of mistakes, more sensitive to humiliation. 

10,000 hours is a lot of dedication. 20,000 hours and you can be amazing. It is easier to dedicate the hours if you are immersed in it, like a language in a new place you are living. It is easier to dedicate the hours if your parents are paying for lessons. It is like breathing if you really, really love what you are doing.

Find that thing. Start logging in the hours. If you are 36 (like me) and say you might live to 85......That's a whole lotta good years to master something.

My Aunt Deedle is my inspiration for this. She never let anyone tell her she couldn't do something. At 35 she bought a farm, not previous experience. Soon after she became a Realtor. She was a wife and partner to my uncle, who needed a quiet bit of care physically when he wasn't being amazing. When he got really sick, they packed up and moved across country and bought a rural plantation in Virginia. When he died, she packed up again and moved to Texas, bought a bed and breakfast, and took an African safari cruise and tour to South Africa. She was a gun totin', State Fair baking, Renaissance crafting, amazing woman. She's in her 70's and still running at it.

In fact, the happiest women I know are much older than me, always trying new things, learning new skills, and running at the target of life. From that I have learned, it is never too late. In fact, my 30's are just waiting in line for that ultimate push into really living fully.

Go. Get some of that cake. If there is no cake in the house, it is time to learn to bake.

Why I Stopped Writing- Scooping the Guts Out

Recently, there has been a really public feud between two of the leaders in the unschooling movement. It is really quite yucky what one of them is doing to the other publicly, namely, starting a facebook page to collect and categorise any failing there might be of the other.

I don't care how ugly the mistake one made, creating a facebook page to stir hatred and "collect" failings eclipses that by hundreds of millions of times. While I had been disappointed and sad for one, now my view of the other is forever ruined- not because of her work or home life, but because of how creating and managing a facebook hate page speaks of her core being. Yucky.

*Dayna, rock on. People make mistakes. I am so sorry that folks have been targeting you for public humiliation and I hope that you and your family come through this strong and beautiful.

The whole situation got me thinking about how risky going public is. My blog, the facebook pages, even my profile are now public. I have made mistakes. I can't even claim that they are all in my past. I have projects that failed too. Restore-o-Rama 2005 comes to mind. Huge horrible expensive failure. Simply Food the blog is another, personality clashes led to that shutting down. Maybe I could have saved it, maybe I could reboot it, maybes haunt me. That was a huge failing. A project not seen to its end, poorly handled. Will that come back to haunt me? Even though apologies have been made for my part directly to those actually involved?

I am not perfect. I burn dinner. I yell at my kids when they fight all day, though less and less now that I know that it leads to more days of constant fighting. I forget to email folks back. I turn off my phone. I cry. I dislike people. I say the wrong thing. I say the truth at the wrong time. I say nothing when I should be throwing punches. I am not perfect. I am not always happy.

I fake it.

When all of my failings start weighing so heavy on me that I can't get up off the floor, I fake it. I get up, get dressed, I list out things I am grateful for. I send out love messages to friends and strangers. *Love messages are encouragements, what I love about you notes. I turn up the music and I dance while doing dishes. I make my kids laugh. I eat two desserts before breakfast. I put extra maple syrup in my coffee. I go through the motions of what I would be doing happy, and soon enough the day turns to real happy. Smiles are contagious.

Think about that. I have been criticised as being a phoney, which cuts to my core because I start out each day faking it. Am I a fake? I am genuinely trying to move towards joy, create a joyful beautiful life for my children. I don't lie, they know that I am sad or angry, they know I am trying hard to cross that gorge to the other side.

This paralyses my writing too. I sit in a room full of peers and feel like I don't belong. When I open my mouth, I sound like a fan girl. Then I go home and cry because I can't cut it. I am really having a hard time with this mental shift, the one from I am a crappy wanna be poet in freshman level comp classes to....I've been a college professor for 8 years, have a multi disciplinary masters degree, and published writing.

That is the muck I am stuck in. This is risky. The fear is palpable. Does this mean it is worth doing or is the fear cautionary to make me step back and re-evaluate?  What is the foot hold of this fear that keeps me sitting in the pasture making wildflower hair adornments instead of following the path that calls to me? These are the guts of the problem. This is what needs scooping out and fed to the chickens.

Why I Stopped Writing, Part Two

The spark was gone. My days were suddenly filled with the experiences I required, the expertise, the daily drama....but at the end of the day I collapsed exhausted over a pile of ungraded Composition papers, unpaid medical bills, and dirty dishes. The laundry piled up. The toys cluttered my mind. Every ounce of my creativity and joy was squeezed out of me and into my children's lives, their play, their health. There was nothing left for writing. I was full of joy, I didn't even notice it. I even thought to myself, if I could lose my soul churning need to write, maybe I am not a writer after all. Maybe I am something else.

More empty notebooks. I tried photography. I tried fiber arts. I learned how to cook. I taught myself how to sew, sort of. I distracted myself, ignoring, neglecting the thing inside of me that had shaped my identity for so long. Maybe I am something else.....

I would tell myself, if I can just get these dishes washed, then I can blog. Never happened. If I can get these papers graded, but then the baby cries. If I can just have 10 minutes, but then the work would go into draft folders and later deleted because the distracted ramblings of a failing wife and mother were uninteresting and horrible anyway. Maybe I am something else.....

I hired Jessica to help me dig my way out housework so I could climb out of the abyss. Slowly, slowly the whispers of encouragement from Chad and a handful of friends made it through the windstorm of doubt and insecurity that held me pinned in the darkness. Slowly the pin lights of the stars glimmered in the night sky.  Slowly, the country air dried my tears, set me on my feet, and I could see the miracle of everything that has happened. Isaac's diagnosis, the farm, the city house, my beautiful girls, my wonderful husband.....all of it....needs to be written about.

It is time. I am not something else. I am a writer.

I made a new rule. WRITE FIRST. Even if there are so many other things that need my attention. Unless there is blood or something is on fire, Mama gets 30 minutes every night.

Every time I sit down to grade papers I take 30 minutes and I write. Sometimes it ends up a blog post, sometimes, a poem, sometimes story notes. I write first, then work. Surprisingly, I am getting more of both done more efficiently. The need has returned. It is eating me up.

There is a problem though and it is really, really problematic. My skill has dulled. I thought that blogging wold keep my skills sharp and ready, but instead, just as I tell my students in beginning Composition.....what you read changes what you write, affects your style. My own writing began to diminish in skill, I started to pick up on the stylistics of other bloggers that I read. Fragmented sentences started to blight my work. Run-ons. Horrible grammar all in the name of writing style? This horrible new awareness of the lack of skill in my own writing started throwing my work into the virtual drawer of draft doom. Every single time I wrote a sentence that started with and, but, or and it wasn't just a clause it was just an hanging fragment, I would get sick to my stomach. I started seeing so many other bloggers do this too. This is so much worse of a plague than just killing the Oxford Comma. Facebook is one thing, a place where people type from their phones or just too fast to even pay attention to punctuation or spelling, but blogs are another creature. Here I stand trying to re-claim my title of writer and I can't even compose a decent sentence.

The self critic is the worst executioner of potential and creativity. I had to picture myself at the guillotine, head down on the block, suddenly side kicking the hooded executioner, freeing my own hands and making a grand dramatic escape, laughing at the crowd from the rooftops! Freedom!

With freedom comes responsibility and I know that metaphorically I will always be on the run from this hooded darkness, trying to bring me down. I must be agile, aware, and on the move.

I unpacked my old textbooks from undergrad and gradschool writing classes. Of course I kept them. I carry one with me at all times, even this is an exercise from Wild Mind. It is called what I want to tell you about......

Why I Stopped Writing

When I graduated college, degree in hand, I realised that knowing how to write was only part of the process. Living a life worth writing about, knowing about something well enough to write about it, and experiencing anything at all, learning a trade, creating a family, building a house.....anything at all was a critical part that was missing.

I didn't want to be a journalist. I didn't know how to write fiction. I was stuck. I dropped my pen and walked out into the world.

I went to graduate school for non-fiction writing, history, and architecture. I was going to learn a trade, know to inside and out. We were struggling with infertility, restoring a historic house, studying historic preservation made sense. We refinanced to build better inside the house, I worked at a museum, and I played the young professional sell your own portfolio of talents to the folks in charge game. I wore suits, curled my hair, lipstick charmed my way into meetings.

In the middle of it, I became pregnant with Lily.

Lily changed everything.

She changed the core of everything I was or lived or thought. Not overnight, but slowly. I had entered a foreign land and it took time to learn the language and customs. My days and nights became a blur, work became a daily exercise in futility and longing. Grad school drug at my heels. Daycare, pumping, diapers, crying (mine, not Lily's). It all spun around me in a brilliant vortex, tearing down to the core of who or what I thought I was. Not like some brilliant chrysalis, but like a hurricane. I survived.

I survived. I changed.

I quit my job and took up teaching at our local community college. I finished grad school, but put my book in a box and taped it shut. Driving through the Iowa landscape to and from the rural campus, the dreaming fog drifted in. Dreaming of leaving the city.....a dream I had held so close to my heart since I was ten years old and my family moved south of Chicago from rural Colorado, then to Des Moines, Iowa. The rolling hills, windows down so the country air could pull back my hair and take the tears away, the longing that was building in me. The dream I had of living on a farm, raising cows and chickens and dreaming under a million stars in a silky back night was coming alive again.

I could not put my finger on it though. It was just an ember. A needling.

In the months that followed the neighbour children set our fence on fire, there was a drive by on our block, and a man was murdered in our front yard. I became pregnant with Holly. The dream became a desperation, a longing, a need.  My mind was constantly wrapped around this irrational fear that if we stayed in the city, my girls would be harmed, shot, assaulted, or some other worse degradation. I distracted myself the best that I could with play dates, art classes, mommy meet ups. Nothing got my mind off this horrible fear, was it irrational? A man was murdered in my front yard, his junkie's head blown off by a mugger. That was the neighbourhood we lived in, in our magical beautiful house surrounded by a war zone of violence, drug use, and prostitution.

Then, Holly was born. She turned up the vortex again, sent our world spinning. At a berry farm when she was 3 weeks old, the summer breeze tickled her face and she smiled and then laughed for the first time. It was that day I knew. I came home with a basket of strawberries, my two beautiful daughters, and called the Realtor. I told Chad we'd move to a farm by the end of 2008. Maybe not sell our city house, but we'd be on the farm no matter what. I started packing.

I blogged.

Every single time I took up a pen to write a poem or a story, it fell out of my hand. A baby cried.

We moved to the farm.

Isaac was born.

I bought new notebooks that ended up being used for vet supply lists, grocery lists, doctors appointments and schedules. The vortex consumed me. Slowly, I also stopped really blogging. I wrote about farm stuff, posted cute pictures, once a month or so. Not everyday. I lost my spark, the need to write.

......to be continued.

Little Potter Sunshine

Lily insisted that I show the series of pictures I took art class night.  She talked me into trying the wheel too. Never again. That stuff is HARD. I ended up with an exploded ball of clay over and over, that is, when it wasn't flying off the wheel and whap thudding onto the wall or the classmate next to me. No pictures of that hilarity, which is a good thing I guess! Seriously, it was like art class bloopers, staring Danelle. Ugh.

My point it, Lily has a very real talent for this and it comes naturally to her. She isn't  perfect at it yet, but she's working very hard to gain precision. I love watching her make art. I love being a part of her passion as she discovers it. I love that she wants me there, by her side. I love love love love being her Mama.

Fried Green Tomatoes with Sweet Tea

Fried Green Tomatoes: 

• 3-4 green firm tomatoes, cut into 1/4 - 1/2 inch slices. 
• buttermilk
• fish fry breading (like Zatarain's Cajun Fish Fri, but a corn flour base with seasoning works too)
• frying oil (lard, coconut, peanut)

Dunk slices in buttermilk, dredge in breading, fry until brown, drain on plate.

Easy if you know how to fry things. That part is critical. Practice that. If you have the temp to high you'll set the kitchen on fire, too low and you get greasy soggy yuck that no one can eat. Fried green tomatoes are just to delicious to ruin, so make sure you or someone who can help knows how to fry food.

Sweet tea is the only appropriate drink to go with this. Some say glass bottle Coca-cola is acceptable, and I can maybe support that. Maybe.

Perspective, Immunity Part 2

One of the things that being in the between of these worlds affords me is a perspective that is different from either extreme. This perspective is bias, but also educated. Recently there was a round of chickenpox in our community, pox parties were thrown, people rejoiced at the spots. I contemplated attending with my kids, one set of docs had ok'd it for Isaac. The timing was right as far as activities and work schedules go.  Still, I decided that the time was not exactly right. Not just yet. Then, there was an expo being held and one of the online mums asked flippantly if it was ok that her pox'd 4 year old came with her to the very public event. After all, everyone wanted some of the itch action.

Yeah. No. That is irresponsible. What if she had not asked? How many people like her would just bring the infected kid on out to the grocery store. After all, those who don't want it are vaccinated, right? Wrong. I have to be extra careful, I have to speak up and make sure that this kind of foolishness is stopped. Yes, I intend to infect my kid with chickenpox naturally, but I need the timing to be right, not for the infection to happen because some fool of a non-vaccinating family decides to create an outbreak. If you choose, like we do, to not vaccinate for some contagious diseases, you must, for the love of God, be responsible and mindful of your choices and not inflict them on other people. It is actions like these that give mindful parents a bad rap. Most of us research and study and know our diseases. Most of us know better than to take a sick kid into a room with a 1000 other people, many who are or work with or have babies. Recently a fully vaccinated child in our community contracted chicken pox unwillingly. How did that happen? May very well have been vaccine shed, but we don't know. Vaccinating families can be just as irresponsible post vaccination.

This is the fragile edge that I walk with my children. I have to take up the slack. I have to be twice as vigilant. I have to read so much more and understand and be able to explain and constantly justify my choices to doctors, to family, to random Internet strangers, to hostile asshats who decide that this is their crusade. I do this while wiping noses, examining the colour of snot, of poop, of ear goo. If there an infection, what is the viscosity, how much how often, then what? Constant. Always. On the clock. Listening to breathing patterns, heart rates, fingernail colour.

I get tired and run down. I have to keep myself healthy too. I am the primary caregiver and there is no vacation, no lunch break, no respite. We are in the middle of not just two worlds, not just between normal and medical needs, but in the medical needs world between the kind of needs that get extra services and nursing services and the kind that are just enough to be noticeable and require constant vigilance and care on our part to stay on that side of the rope. Like a giant Venn diagram, of NICU and normal and genetics and special needs, we fall in the grey area off to one side with the constant threat of shifting to the left. It is often a very lonely place that our family inhabits, where the naysayers say we are irresponsibly not doing enough or they say we are overreacting and nothing is wrong.

****

Last year a friend I have never met in real life had an idea and brought me on as moderator to bring forth a fantastic online support group, Natural Parenting of the Child with Special Needs. 

The link is to the gateway for the group. The privacy setting are set to secret to protect the privacy of the members (closed status lists names of members, secret does not), so new members send an add request to the message function of the gateway page.

This group of families and parents all over the world has helped me not feel so alone in this foggy grey area. Some have diagnosis for their children, others do not but have a vast array of symptoms that they deal with daily. There are families sharing recipes for special diets, others helping direct parents to other support groups (blenderised diets and the Natural Parenting Downs groups come to mind). So far, this particular group has been one of the most respectful, information sharing groups I have ever been blessed to participate in. I am grateful to be involved and a part of something so special. Discussions have included how to babywear a g-tube baby, how to ditch miralax and use real food for better results, benefits of donor breastmilk and how to re-lactate, what PANDAS is, and how to lessen post surgery PSTD for a child.

The very first week this group was up and running I knew it was something many of us desperately needed to be a part of, that we are not alone on this rugged unmapped island. That is my constant gratitude, that this group exists and has done good in my life. Through this group I have made friends in the 22q community that otherwise would have slipped through my newsfeed. I have made local friends, deepened relationships with friends I already had, connected with childhood friends who are now raising special needs children too. Amazing and wonderful.

Immunity

post vaccine rash, fever, and lethargy

Part of 22q11 syndrome is immune system deficiency. Isaac seems to have a thymus and a functioning immune system, though his labs are a bit on the low side. That said, he's only ever been sick one time aside from the few times we consented to vaccines.

After each vaccine he got really sick, for days. That's expected, I guess, for most kids. Except it isn't really. Holly gets really sick too and gets muscle cramping for weeks sometimes months at the vaccine site.

We vaccinate, but we do not follow the full schedule nor do we choose every vaccine available. This has been our choice before Isaac was born. We actively researched each disease and each vaccine and weighed the probability of disease vs reaction/symptom threat, factored in that I am a stay at home mom and our family homeschools. We mostly follow the Dr. Sears schedule, with our own modifications.

To break it down we do get the Hepatitis vaccines, but not when they are infants. We got polio vaccine done at age 1 because there is a new wild strain that has ties to an Amish community near us (or that's what our PCP said). We got the kids tetanus because we live on a farm and the kids are very active and it is bundled with some other things. We don't do flu vaccines, ever.  Chickenpox I hope to expose them to as a child and if that doesn't work, then they'll get the vax at age 15. MMR we intended to do at age 5 for the kids. Lily has already had one dose. When I was pregnant with Isaac our PCP advised against getting the MMR shot/booster for the girls at that time because of vaccine shed. With Isaac's immunity in question, he continued that recommendation.

That was the first time in all my research I had ever heard of a vaccine shedding. Up to 3 weeks he said. Since then I have done a lot of reading on this. Wow. The live flu virus vaccine shedding can actually spread the virus to the fragile folks (babies, cancer patients, immune compromised) we are trying to protect in the first place. Yikes. Folks who get these vaccines should be educated and take precautions, but they are not and most people who care about it don't even know.

After Isaac was born and diagnosed, the doctor said the same thing. Isaac is at risk and until we know his immune function, vaccine shed is a concern. 3 weeks is a long time to quarantine the girls from their brother. Add to that, there is no a active outbreak of any of the three viruses in MMR. We have an exemption waiver for the time being.

In the meantime I studied. I studied what the viruses can do. I studied Isaac's immunology results. We had titers done on what vaccines he did get (the not live ones are generally recognized as ok for 22q kids, even though each time he got really, really sick and cried for days). He did in fact develop immunity to the few vaccines he got. That's good! We do plan on getting the MMR for him, just not while he is non verbal and not while he is so little.

Things like RSV don't have a vaccine. Croupe. Random viruses. Vaccines resistant mutations like the round of pertussis that hit southern Iowa. What to do about that? How do we prepare for that?

We cannot live in a bubble. We cannot bathe in hand sanitiser.  This is a fine balance we manage between medical needs and holistic natural parenting. Once slip and we all get whacked in the face hard and bloody.

Here is what we do as a general precaution.

*This is not medical advice. We do these things under close supervision and advice of several specialists. I am sharing this information because many families are searching out ways to buffer and strengthen their kids immune systems and this is what works for our family.

Breastmilk. Isaac is 2.5 right now and still nurses. Even if he had been unable to suckle or if I had problems with supply, knowing what I know now about the vital importance of breastmilk on immune function and development, I would be pumping or getting donor milk. Isaac is beginning to self wean. I will continue to pump and make sure he gets breastmilk through one more cold and flu season, at least one more. If there is one single thing I could tell 22q families and doctors, it is to make breastmilk more of a priority. Formula just doesn't do it for the immune system. Formula is not your only option. I had a friend who's birth didn't go as planned and her baby ended up in NICU. I posted a request for donor milk for her on a local facebook group, within 20 minutes she had offers that totalled up 3 gallons of frozen milk, and one family delivered their share to the hospital within 2 hours of the initial request. There are donors lining up here to help every time there is a request. 

Elderberry. There is science behind this. Even our PCP agreed that it is a good item to use. We make our own, but there are several places you can get it commercially. The chemical reaction that happens to the virus makes the virus unable to stab into healthy cells and allows your immune system to catch up and win. There is also some secondary thing that happens that boosts immune response. Good stuff. Works for viral and bacterial infections. We take it if we've been exposed, if the kids wake up sniffly, or if we experience that tickle in the back of the throat or the chill that precedes getting really sick, hard to describe, but most people know what I am referring to. This is the first year that Holly nor Isaac have not ended up in the ER with croup or respiratory issues. They also did not get any vax this winter, but that may be coincidence.

Ground Ivy Tincture. High in vitamin C and plant based iron, drains ear fluid very effectively. Actually, it thins all mucus in my experience and drains lymph swelling too. That's what it does on me, at least. Isaac was cured of having any ear fluid build up at all in two weeks of usage. It is safe for just about everyone, except for people with certain liver issues, but be sure to research this for your self. More 22q families should try this. Every time I see pictures posted or posts about the suffering of the babies from ear fluid and infections and deafness caused by this, I suggest it. Usually I get laughed at for being a hippie, but this really works. I wish more people would try it. It is an oral dropper dose, and Isaac points to the cabinet and signs for it when he gets fluid pressure. I use it on myself when I get sinus pressure. Within the hour I am draining and healing.

White Willow. I use this for fever reduction and headaches, on myself. I have blood pressure issues left over from pregnancy and this is the only thing that works for that type of headache. Generally I let the kids fever out what they get. I watch though and treat with motrin if it goes over 102.5.

Marshmallow root, A wonderful cough drop. Very soothing.

Honey, proven to reduce inflammation and soothe sore throats. Doesn't have to be local but if you know your beekeeper you are more likely to get real honey. I suspect that is the base of the mythology that only local raw honey works, any real raw honey will do the trick actually. Store honey is more likely to be diluted or simply not even real honey at all. Honey has antibacterial and anti fungal properties, and so many trace minerals too. It is really good for you. Honey is used to treat infections in wounds, to soothe coughs and sore throats, and it tastes really good too. Several labs have said that it eliminates staph, e-coli, and salmonella bacterias.

Fruit, lots of high vitamin C fruit. My kids have open access to fruit. What is in season and local is best. We don't have local citrus though, so they get open access to clementines and oranges and pure lemon juice to add to water all through the winter months. If they eat a 5 lb bag in a day, I know they won't be constipated! Plus then I get all the peels to boil and moisturise the house air.

Teas, we drink a variety of herbal teas, most really high in vitamin C. I sweeten with honey or real maple syrup. There are a lot of good minerals in natural sweeteners, all help with over all health.

Whole foods, butter, coconut oils. I add coconut oil to hot chocolate and oatmeal and popcorn. Yum.

Sunshine. Natural vitamin D is to be had all year round. They get playtime outside in mostly all weather, every single day. Obviously not in a blizzard. Yay for Iowa having extreme climate zones. In the winter or rainy season they get extra mushrooms in our meals (sometimes hidden as a puree). They will sometimes also get fermented cod liver oil. Mostly though, they get sunshine. There are full spectrum lights you can buy, Happy Lights. We don't use sunscreen or lotions ever, and no one has burned yet.

What we don't do and pay more attention to when illness is about:
dairy, processed sugar, hot dogs (any processed meat product).

Secondary things, even if you don't buy into the hippie dippie nutritional approach.....doctors appointments. We ONLY schedule for first seen of the day. The office should be cleaned (hopefully) and the nurses and doc won't have seen/handled a parade of sick folks yet. I was concerned that the vax related sickness might also/instead be that they were in a doctor's office full of sickies coughing and hacking all over everything and everyone. So we go first. Always. I insist.

When we get home, we change clothes and bathe. Shampoo hair. Drink lots of orange juice. Rest.

Labs we have done early in the day and they know we want an unused room when we come in. We only use one lab for blood chemistry work and always the same incredibly good phlebotomist.

Other things: household chemicals. Harsh chemicals can damage the endocrine and immune system too. Since we need to minimise allergic and respiratory reactions, we use harsh cleaners and cosmetic products sparingly.

• we do not use fabric softener, we use vinegar instead
• cleaners: we use bleach sparingly, very sparingly. We use baking soda, vinegar, vodka, and essential oils to make surface cleaners. Very little carpet in our house, that helps a lot.
• we use norwex rags and kitchen sponges, not the whole norwex line, but I like the items I have
• real soap, made from whole ingredients and locally. Including shampoos. 
• we do not use artificial scent things, of any kind. No plug ins, no scentcy, no fake candle smells. None. I do simmer cinnamon and apples or orange peels and that smells nice.  

Sometimes managing the health of my family is like crawling through a tunnel, we have this definite boundary we are working within, a set of known health factors. We can usually see the light at the end, but it seems so far away. I feel like a lot of people just don't get it. We have even been publicly attacked online for our vaccine choices even with those choices being guided by and under close supervision of specialist doctors, some folks just think they know better than the experts who actually have access to my children's medical files. Weird, I know. I am sharing that experience specifically so that if anyone might feel inclined to give us another round of uneducated crap about what small part we have shared here, we've already been there and done that.  It is annoying and not helpful. Just know that we are doing our best and our best is allowing our children to thrive.

Vaccines are not a fortress that protects all. Immunity is more than that. We try and look at the whole health picture and work hard to build up the defences, the offences, the players, the coaches, and the playing field. Every detail matters. Every sniffle, every bit of ear goo, every cut. It is my job as caregiver to be hyper aware and balance all of this without letting the kids get paranoid or afraid of being in the world.  22q11 children can get very sick, from vaccines, from common colds, and from bacterial infections that a normal immune system would just shrug off and keep playing the game. Only this isn't a school yard game of kickball, it is my child's life at risk.

Again, I will state that this is not medical advice. It is not a judgement on other families' choices either. It is what we have researched and what we have done, this is what is working for us. Things may change, we may have to change with them. For now, this is what we do. 

*I guess I have to clarify again, this is just what we do and under close supervision of our specialists. Not medical advice. Not. Medical. Advice. The items we use are safe for our children and us, but every medical situation is different so make informed decisions, please.

Level Up

This year has been a "level up" for me in many ways.

I am not the mother of an infant anymore.

I am nearing the end of my days as a nursing mother too.

Our farm is starting to settle and evolve into what it will best function as and move forward with an established customer base.

Housework has shifted, both girls are capable and willing most of the time to assist and make things clean and tidy, both show pride in their work too.

Chad's job has changed too and is about to level up again.

My job had some complications, one day I was in tears because it was pretty clear that I would be without income in the Spring. Not because of my performance, but because of the economic shifts happening and the contract nature of my job.

Well, good, I thought. I am burned out anyway.

Then my friends Breann and Holly both sent me a notes and encouragement that began posing this question: "What is your ideal job/situation?" And I began to frame the question in my mind and the answers around it.

Ideally-
1) I'd like to have more time for my kids. They are getting less of me and it shows.
2) Online.
3) I'd like to teach history instead of English, at least for a while.
4) I'd like time to work on my writing.

 I also liked my job and was sad at the prospect of downsizing.

So, first I stopped getting emotional about it. Being in  that state I could not actively and rationally frame what I wanted and advocate for myself. Second, I started talking to people. I started small. Began writing my CV, which I had never done before. I asked for help with it. I began looking for the kind of places I wanted to work and checking out the HR pages for job openings. Then I sent emails to my current employer asking about options and also help with the CV.

Soon, I had my old job back in place. Seriously. It was all a misunderstanding. Then I also had a new opportunity which is fantastic. I got up in the morning excited to go to work. It wasn't online and it wasn't easy- but my mind is being nourished, I am learning as I go, AND it was history.

I am making progress with finding a publisher for my book, I finished it too, maybe. Ha! I also started the next one, and I have it 3/4 completed already. Enough to send it as a proof to a publisher too.

I identified some key changes that needed to be made at home with my own time and priorities.

So far, things are tidier (not perfect though) and we are better fed.

I am reading more, specifically history books. I am drawing and painting again too.

This is the kicker though, even as I have more to do- I seem to have more time for everyone else in my life.

I am writing about this today though, because I feel particularly grateful for the friends in my life right now. Even though I could not give back 100% or even 50% in these last 2 years, struggling with family economics, Isaac's diagnosis and medical stuff, and an overloaded work schedule- instead of rejecting me and my hot mess of a life, I was embraced and encouraged by the folks in my life worth holding on to.

I'm not done yet, I am still framing this idea of what I want my days to look like. I am still in the imagination phase, but I know now what it is I want and I am making progress towards it instead of being lost in the woods. I feel generally more confident, more supported, more loved. All things that I really needed, and maybe I had all along, but now I can see clearly where to find them, how to ask for what I need. Does that make sense?

Because of all of this change and transition the last 3 years, everything is better. Everything is amazing.

So now I ask you, friends, what is your ideal job/situation? What would you like to be different in your life? What is the first step you need to take?

County Fair Time!

Park Day Picture

Fun House Mirrors, a Reflection on Being Physically Different

Subtitle: Why discussions about growth hormone therapy for my son get me riled up and angry. 

I am short, not shorter than normal, not short for a girl. I am a dwarf, by medical definition.

When the girls in the locker room called me a troll doll, this is part of the reason why.

I have always been different. Not just different in my personality, because that is certainly true, but physically different than others around me.

Different in a way that it makes people uncomfortable. I once had a boyfriend when I was a teenager break up with me because he said he could not get over the fact that I had the body of a child. Seriously, I am that short. I weighed 85 lbs at the time. He was right about looking like a child.

I used to hate it. I used to look in the mirror and pray to grow. I had family members mock me and say that if I ever hit 5 ft they would buy me a car. Another suggested it was my thyroid and took me for testing, searching for a medical reason for my difference.  I would cry myself to sleep at night, praying to grow just enough to be normal. Enough to stop getting shoved in lockers and locked in. Enough that people might think I looked pretty instead of like a freak.

                        I hated myself. Oh how destructive self loathing could be, still is at times.

Then one chilly night, something terrible happened and being short saved my life. Looking like a child was my advantage and my gift.

After that I saw it as a small blessing. I accepted it. I embraced it. Tyrion (the imp) in Game of Thrones tells John Snow, “Never forget what you are, for surely the world will not. Make it your strength. Then it can never be your weakness. Armor yourself in it, and it will never be used to hurt you.” 

So I did. I owned it. I armoured myself in it.

Last week I stood in the fun house with my kiddos and looked in the mirrors. I was struck stone cold by the one that distorted my image into a tall, slender woman. A stranger stared back at me. It was as if I was looking into a parallel world that my wish was granted. That woman was not any happier, not any better. Just more normal looking. A woman without difference that might have defined her, might have given her an edge, a compassion for others with physical struggles.

That is not me. I am not a woman without. I am a woman with definition, embracing difference, living, loving, laughing, unafraid. Why would I ever again pray for that to be taken from me?

Being small, being different has given me a perspective on the world that being normal never would have. Being small is not a death sentence, it is not a tragedy.

Why am I writing about this? Why am I labelling it 22q11 deletion, when I do not have the syndrome (my son does)?

When we first started going to specialists for my baby, much of the talk about about his low levels, still normal range, but low, of growth hormone. The suggestion was growth hormone therapy which is a daily shot until he would be out of puberty or reached a desired height. The concern was that his predicted height was in the 5'3" range.

Let me just remind everyone that I am just 4'9". His predicted height is 6 inches taller than me. Predicted.

There are side effects of growth hormone therapy, risk to the heart specifically. Risks to the liver. Risks to the thyroid system. Risk to all sorts of physical systems.

You know what risks being short has? None, unless you count being bullied by assholes as a medical condition and it seems that a lot of the medical community actually sees this as a legitimate concern.

If the problem is really that assholes are that much of a threat that I would have to make my non consenting child endure daily needle injections and risk serious side effects to his health then I propose an anti asshole shot instead. I am serious. The kid who teases and tortures another child over a physical difference is the problem folks, that child is the broken one. Let's collectively turn our attention to fixing that real problem instead of jacking up my kid with synthetic hormone shots and let's also be real for a moment and realize that not being short is not a free pass out of being bullied because that isn't the root of the problem anyway.

It is different for boys though. Like hell it is. Yes, I am angry about this. My father isn't much taller than me (yes, it runs in my family) and he is a Life Flight AirEvac Pilot. My brother, also short in stature is a National Guard veteran who did a tour in Afghanistan. My grandfather on one side was an oil rigger, on the other a carpenter. The men in my family never let being short hold them back, instead they used it to their advantage. Coal miners, oil riggers, shrimp boat captains, farmers, pilots, firemen, poet, lumber jack, soldiers, sailors.....men every single one of them short.

Why should I take that heritage from my son? If he is only 3 ft tall then he will still rock this world. There are opportunities available for people who are short that are not open to tall folks. Movie roles, jockeys, divers, gymnasts, to name a few. If that is who he is, or what he grows into, he will do so without unnecessary cosmetic medical intervention until he is of the age to consent for it.

Obviously I would change my mind if there was a medical concern, if he needed to grow for a life saving surgery or if low growth hormone level started to short circuit his other systems. That is not the case right now though. Right now, every single time a medical professional starts waxing poetic about the horrors of growing up and being a short stature adult I am simply smashed down, burned to my core insulted.

Napoleon, folks, was also in the short club. Seriously, he almost took over the world. When they imprisoned him, he escaped. He was 5'2" by some historical accounts, 5'6" by other later accounting.

Short is not a death sentence. Short is not a medical condition. Short is not a disability. It is not the end of the world that I can't reach the ice cream on the top shelf at the grocery store. It is not a crisis that I have to sit on a pillow to see over the steering wheel to drive. It is not the end of the world to find pants that fit correctly. I can also play basketball better than most people. I have a fantastic long shot. I can swim well, run fast (if I wanted to, I hate running), and I can fight hard.

Short rocks. This little person is about to go to war the next time some tall willowy nurse starts in on what a tragedy it will be if Isaac is just over 5' tall. No, the real tragedy is how afraid of difference the world is that people are willing to risk the health of their already fragile children, afraid that they might be....short. Afraid assholes might not like them, that's what it gets down to.

The end of the story is that as I walked out of the fun house, I passed the mirror that was normal and real. I am be different, I may be a midget, but I am fantastically awesome and beautiful, my arms full of joy and life. My children hugging me, my friends cheering us on, my own smile is real. I go to sleep dreaming up recipes for pork roast and bacon and cheesecake instead of crying over mirror illusions and what asshole strangers think of how I look.

These are my fighting words, my gloves to go in the ring. I will raise my son up to love himself and see his own potential. I will not instill daily, not just an injection of synthetic hormones, but each shot would be a reminder of the rejection that would be his birthright and fear of being different. No. I will not do that to my child.

You betcha this is what that willowy nurse is going to hear next time she tries that line of logic on me.

Clay Class

Lily and I have been taking a mother/daughter class downtown and usually we make separate projects. This week we had to work together though. Of course she wanted a faerie house and of course she had to furnish it. She described to me what she wanted and how to construct, I created and engineered the structure to her specifications.  The fireplace hearth is big enough for a tea candle. There is a vent hole for smoke. The bottom will strong enough to set on stones. The welcome mat has texture for wiping little boots.

It isn't finished yet. Next week we will paint and glaze it before it gets fired.

The class is more than art though. Lily and I get to talk, as we create. I am right by her side as she engages in an art she really really loves. Just like when Holly steps foot in a dance studio and lights up, Lily melts away her tough shell when she pries open the steel security door and dances down the hall to the clay studio. She doesn't have to be a big sister or a farm girl or perform for anybody here. In the studio she is Lily the artist. Lily with her own tools. Lily with her spot in the kiln. She cleans up after herself, shows the younger kids how to work machines that they have never used, and sings and smiles and laughs.

Then on the drive home we crank the windows down and the music up, sing as loud as we can while cruising down the rural highway home at dusk. We pull over to take pictures, we tell folklore stories, tonight she sang me a song in Nixie called Pinkora about a magical world with a giant pink moon that births fairies once a week. That's Pinkora with a rolling rrrrr.

This girl is the magic. I hope she always remembers that.

Adventures For Summer

I am too tired and to back logged in my online work to spend too much time typing up some thoughts I have had this week on serious subjects so this post is just to gush about how blessed and wonderful this week has been.

Isaac has continued to walk. At first it was just in the afternoons, after lunch. Now, he's at it all day. It just makes my heart explode with joy to see him come around a corner and toddle across the room into my arms. He also taught himself (from the iTouch program) to sign heart. He signs it when we ask him where his heart is, but also does it when I ask him where his love is.... and then he says, Mama.

We had adventures this week. Full speed. Ballet camp, playing with new friends, lunch with one of my mentors and friends. Art class, playing with new friends. A day at home full of farm chores and phone calls and running running running running. Lunch as dragons and princesses on the square.

Finally, we topped off the week with horse lessons and an amusement park trip. Oh the girls were in love. Isaac was frustrated that there were so many rides he was too small for, but kettle corn seemed to make it up to him. Plus, he borrowed a sweet ride.

My girls had never been to a ride park like this. They have been on carousels at the park, zoo, and mall.....but nothing like this. When we got an invitation, I hesitated. It wasn't something that I like to do and I usually lead the adventures....but life and learning are about new experiences and deciding what you like. The girls can decide for themselves. Oh my. They are huge fans, especially Holly. If the ride was fast and furious, she wanted on. She was too little to ride on some without an adult so she drug me on with her. Eek. Not my cup of tea, but holding her in my arms while she screams a joyous and wild, WhooooooooHooooo!!!! is my cup of tea. Oh that girl. She will fly.