Wednesday, 31 July 2013

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.



Tuesday, 30 July 2013

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.

Monday, 29 July 2013

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.

Sunday, 28 July 2013

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?

Wednesday, 24 July 2013

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.

Tuesday, 23 July 2013

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.

Saturday, 20 July 2013

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.










Friday, 19 July 2013

Easy Summer Dinner: French Bread Garden "Naked" Sandwiches

French Bread Garden "Naked" Sandwiches

Ingredients:
Mushrooms
Chevre (or cream cheese)
French Bread
Tomato
Basil
Asiago
Butter 
Seasoning

Fry sliced mushrooms in butter, add favourite seasoning.
Slice French sourdough thin, spread on chevre or cream cheese.
Top with whole leaf fresh basil and slice of garden fresh tomato.
Serve with the hot mushrooms and sprinkle with Asiago cheese.



Thursday, 18 July 2013

Homeschool/Farm Update July 18th










We had days rolling around playing with Holly's new trumpet. Lily taught Isaac all about grubs in the play area, how to blow bubbles, and how to really shake it when he dances! Isaac figured out how to climb up and into the sink, turn on the water, and wash dishes with his feet. We found a wasp pinned to a tree with a tiny fairy arrow. Probably another wasp's stinger, but it looked like a fairy arrow and the girls spent a long time examining the dead wasp up close, touching its wings.

This week was fun. We got peahens and named them Ann and Beyonce. Lily cooked up the first peahen egg. I was offered $15 for a peacock egg and I will never get sick of how funny that is. Peacocks don't lay eggs! When people as what they taste like I answer, like duck eggs but more pretentious. Oh we are soooo funny sometimes. These ladies are never ending sources of beauty and laughter and joy for me. I love them so much. I shall have a fowl army of peahens and peacocks and bring up the rear with Muscovy ducks. I shall rule the farm with my fowl army!

A new cafe opened in the local to us town and it is fantastic. I love the food. The kids are enamoured with one of the servers who told them he had eaten dandelion fritters just like they do.

Holly has been playing Ben Ten Mega Dragon all week. She also almost dreaded her hair. That's fixed now. It was not intentional. The girls learned more about electrical current via the electric fence. There was a lot of tree swinging. We worked together on chores quite a few times. Lily practiced first aid too. The calf is growing.

That's pretty much it in a nutshell. Now onward to the weekend!

Wednesday, 17 July 2013

Dinner Fail.


Sometimes my best intentions are just that, intentions, and everything goes wrong.

I lost my phone and camera so I could not take pictures.

I broke a 1/2 gallon glass jar while washing it and sliced my pinky finger. Blood, drama, mess, rescue.

The package of meat I opened was not the cut I wanted.

Still can't find camera.

Something in the sink was gross and started to stink.

Missing ingredients for the thing I planned to make.

Kids getting frustrated that I asked them to reorganize the art supplies. They start arguing.

Isaac wants to go outside but at 95 degrees that is not an option.

The AC vents start dripping water onto the beds upstairs.

Just not a good set up for a recipe post.

So, I fried up the bacon ends I found, chopped up the stew meat that was supposed to be steak, browned it all in butter. Added crushed tomatoes and some black pepper. Boiled pasta. Easy peasy dinner. Tasty too, but nothing to write home about.

No pictures.

Sometimes life does that, gets in the way of the perfect thing you want to make. Dinner, blog posts, art projects. All of it. I am posting tonight anyway because of my personal challenge to write everyday and sometimes my days are like this, not perfect. Not anywhere near.....but in all of our imperfection is joy. We go with the flow, smile, and cherish each other. None of the kids had any idea I messed up dinner, they gobbled it. My frustrations were not even noticed. At every meal we eat together we share what we are grateful for in the day: Lily was thankful for her calf starting to wean off the bottle, Holly was thankful for her whole family, Chad was thankful for his potato crop, and I am thankful that human beings are technically capable of sleeping. Isaac was asleep (I am hoping later that I will be too....).



This is Lily, trying out writing with ink paint and a peahen feather. See? The issues I had and frustrations didn't even touch her day. She had a great day.

I hope you all did too.

Tuesday, 16 July 2013

To The Universe I Say, Bring It.

I was asked to write a few sentences about being the father of a 22Q child.  I'm not entirely sure of the audience or the specific tone of the speech - I hope this fits as best as can be hoped.

Being a father means wanting to simultaneously protect and provide for my family at all times, while also wanting to prepare my family to be able to do these things for themselves, while also simultaneously pretending that I'm invincible and will be able to do these things for them forever. It's complicated.

In this respect, being a father to a child with 22q deletion syndrome is no different than being any other father. 

My son may, or may not, have crippling disabilities as he grows - heart problems, slow growth, immune disorders.  He may, or may not, have to deal with depression, or autism, or any other number of psychological disabilities as he grows.

In this respect, being a father to a child with 22q deletion syndrome is no different than being any other father.

My son may, or may not, be smaller and weaker than other children or adults he encounters.  He may not read well, or he may.  He may never learn to play a musical instrument, or he may find that it is his true calling.  He may become an artist, or he may never be able to express what he finds to be truly beautiful in the world.

In this respect, being a father to a child with 22q deletion syndrome is no different than being any other father.

The place where being the father of a 22q child, or any disabled child, is actually different than parenting most children is merely knowing that he's got more cards stacked against him up front.  The path he's got to take will be harder and he'll fall more.  Most likely so will mine and so will I.  It means he and I will have to work harder, and he may need me more often, and for longer, than is the case with most parents.  It's possible he'll need me there for the rest of my life doing everything I can.  There's no telling what the universe has planned for him.

To the universe I say, Bring it.

I look forward to showing the world everything he can do.  His walk is like another's run.  His jog is another's marathon.  He's going to be a superhero in his own way - in some ways he already is, and I look forward to sharing every single obstacle with him as he conquers it or dashes himself to pieces against it trying.

It is Isaac's turn now.  The universe made him the underdog, it's my job to show him what an underdog can do.

-Chad Stamps



Monday, 15 July 2013

The Girls in the Locker Room

This is an open letter to the four girls in the locker room at the public pool last week.

I live in a small, rural, Midwestern town so even though I do not know their names, I know that this will get back to them, their parents, and their friends eventually. I hope in some small way, or even a big way, that this messages changes them.

You are beautiful. You are exactly what our society holds as our ideal of beauty! Youth, slender frame, shiny hair, and health.

When you came in from pool side my eight year old and five year old girls had just finished changing from wet swim suit to play dresses, I was still getting my jeans on, and the baby was trying to take his diaper off. At first my girls were confused by the idea of bikinis and thought y'all were in your underwear.

Then one of you stood in front on the mirror and started pinching your tummy skin and twisting to look at your own butt.

The word fat was used. The words I hate the way .... looks  were used several times by all of you. My girls stood confused waiting for me to try and button my mother loving jeans over my post Cesarean section, three baby, scarred and squish belly. Before that day, they thought that belly was a miracle of life and beautiful. They hoped to have the same belly someday, fertile and life giving, stretched and well loved. I grew them inside that belly.

Fat.

Fat
with all that our society weighs and burdens that word. 

Oh, but it gets worse. Then you all started talking about the sunburn, the lobster look, one of you had acquired quite severely. I turned to look out of concern, it was a very bad burn. Painful. It had to be.

The discussion between you all turned quickly to tanning and burning. Each of you said the burn and pain was totally worth it for the tan. That one of you does it on purpose. Then all nodded. This kept going.

Let me put this in context.

1) A spray on tan looks the same. The look is the goal right? Normally I am all for the natural look, but if the choice is between self harm and spray on? Go to the salon. Seriously, I beg you.

2) How is this different from cutting? This is self harm. Serious self harm. Here are four lovely young girls hurting and causing intentional self pain just to, what, look brown? Burning. Intentionally burning. Laying poolside covered in products SOLD to them to amplify the effort full of cancer causing chemicals, have any of you ever looked at tanning lotion?

And this is the crux, the process you are using is socially acceptable. This is your cover story, your alibi. Children who cut do not have this. They bleed, hide the cuts with long sleeves. You wear this burn and pain, even brag about it, and no one bats an eye.

I am calling you out.

Normally I would let you off the hook, what you do to your self, your own body, is your business. This time though, there were my little girls in the room. This time they took in every word of your self hate, every grimace, every pinch.

They both refused dinner that night and the next. Over the next few days they asked about their own bodies. Are they fat? Are they the right colour? Are they pretty? They stood, each on their own in the bathroom or in front of room mirrors copying your pinching, your critical looks, and your.....self loathing. What they saw changed their world view.

One of my girls asked if I was going to try and make my belly not fat. My beautiful squishy life giving belly is now just fat. 

When I was teaching for a local college last semester, I designed for Women's American History all about body image and advertisements, I found article after article stating that eating disorders are a mental illness and not caused by outside influence like ads or peer pressure, that they are based in an OCD type illness.

No. That is wrong. I call bullshit. I don't care how many textbooks tell us this. It is bullshit.

We do this to each other everyday, to our little girls when they see the people they look up to hate their own bodies. I can fight off the ads, shelter them from magazines and television ads for as long as I can, but I cannot hide them from the people we live with in our own community. Their aunts and grandmas shoulder this burden directly because I know them and they know my intentions on this subject. My friends know this too. My girls will know the variety and beauty of all human bodies, that we are all different and changing. They are beautiful, even by society's messed up standards of expectations. They are gorgeous.

You girls do not know this. I hope that when this letter gets to your parents that they hug you. That they see you for who you are and love you unconditionally. I hope that they see past whatever excuse you try to use to hide your self harming. I hope that everyone in your life sees the beautiful you and takes time out of your every single day to tell you about the things you are good at and what they like about you.

Here is an example of what I whisper to my girls at the end of every single day....You are loved. You are brave and capable and kind. You are clever enough to ask questions and slow down when something is difficult. You are sunshine to the world, lighting up the darkness with your smile and your laughter. These things make you beautiful.

I hope your boyfriends are man enough yet to tell you you are beautiful without hurting yourself this way. That they are the kind of men who will be strong and kind and love you when your body changes with age and with all the turmoil of life.

I hope your neighbours shower your doorstep with organic sunscreen. I hope that someone offers to take you to a salon that does spray on tanning. I am all for changing your own body to look like what  you want, after all, and I know this will verify for you exactly who you are and I am, I have bright pink hair and I am a midget and yes, I heard one of you call me a living troll doll. Mama, you look nothing like a troll, don't they know what fairies look like?












These are the beautiful children you changed the world for, and I will fight like hell to set it right.

I realize now that I cannot do that in a bubble. So this message is for you, you are beautiful. People are more attracted to confidence and a bright smile than what colour your tan is or your BMI.

This message is for everyone in your life. Someone changed your world at some point. Maybe a babysitter or a friend or your own mother crash dieting and lamenting that these jeans make my butt look big. What you all say about yourselves is soaked up and internalized by little girls all around you.

Fat. Ugly. Too big. The only ugly here is heartbroken little girls who at some point said those words to themselves after hearing everyone else say it to themselves. My girls also heard what you called me. That will actually help them recover from the blow faster, I think. They fiercely love me and that is because they have been so loved all their lives. We have enough to share with you. Please stop inflicting burns, stop pinching your skin looking for imperfection, please stop thinking there is anything wrong with your growing bodies (that includes starving yourselves, because my gut tells me that at least one of you is also doing this). Stop.

There. The living troll doll has said her piece.