Saturday, April 28, 2012

The Four of Us and Healing Love...

The foursome with our sweet mama

That is what we call ourselves, the four of us.  We were raised rancher’s daughters amongst cows and prickly hay bales.  We learned young the meaning of hard work.  Two brothers tailed the four of us, they were our babies 'til they grew in stature, began to set the seat of a tractor and drive the hay truck.  I’m sure daddy was glad to see his boys grab a hay hook and dump the dresses his four daughters put them in.
There is a healing joy, laughter and enlightened tears that wash over my heart when I think about my sisters and our past, our present and how intricately we are linked, like one, but four.  A life lived tucked up against the Cascade Mountain Range where our 1300 acre ranch sprawled; nothing but land, critters and the breath of life.  We bonded hard and fast because, well, we were all we had.  Now each one in her own home, children raised close, like we were.  Each with our own troubles and joys.
My buddies have always been there for me and especially during Zach’s illness (and sisters-in-law; they stood by strong too; helping, loving).  I don’t know if I would have made it without the support of my God given sisterhood.  You are all treasures, each one glistening in a different way.
We try to gather together often for coffee, or lunch.  The blessed days of consistent meetings are dwindling as times change, we change, life changes.  But for nearly ten years we had a weekly coffee day and on “coffee day” we had an unspoken creed of no gossip, no slander.  These days fell right in the middle years of caring for Zach.  My sisters were and are my multitude of counselors.  I'd drag myself out to the car feeling I couldn’t take another step.  Once through the doors of the coffee shop, the faces of my sisters, those faces and hearts I’ve know forever, they would lift, would listen as tears flowed and always, always my heart left more resolute to do the right thing, to keep on keeping on.  Gathering was and still is for positive reinforcement.  For heartaches to be shared in a safe place, for love to wash over hurts and for the healing balm of laughter...and loads of the latter.  All it takes is a certain look and we drown our silly selves in a bath of giggles.  Oh how my heart squeezes behind these ribs.
We joke about a long line of rocking chairs on a front porch one day; fourteen to be exact (perhaps fifteen if Zach joins us) when the hips fail and walkers are parked next to us and then, when the hard work of life is done, we four Swedish sisters and our beloved mates, our two brothers (their mates) and mama and daddy will sit and have coffee every day like we used to around the ranch breakfast table and laughter will be our good medicine till we meet in the great beyond and there...with our precious Jesus, we will continue our sipping of transformed coffee (I’m not sure what that is, but it’s bound to be luscious), our deep loving and honking with laughter over all those inside jokes.
Excitement mounts as our annual gathering is seen just down the path a ways.  There, we prepare for our sisters-get-away.  This, I call my yearly feng shui, my… stop and smell the lavender life-is-good antidote.  We’ve all raised our families and we can afford that yearly break from the merry-go-round of life (of course, I still care for Zach, but he stays behind with his dad, or care givers.  It’s a much needed break for me).  It’s always hard to pull away; but we need to make the effort to heal in a quiet place where daily service is minimal.  We pack light, and drive to the Staunton cabin in northern Cali; shopping for food at several health food stores along the way.  Our cabin is remote, there are no facilities close by.  The nearest town, McCloud is over an hour away.  We pack what we need, give gifts to each other, lay in that high mountain sunshine on the oversized dock and reminisce, till, if there were any, the cows come home.  They are, next to my immediate family, my greatest support, my therapy, my comedic relief and Zach’s treasures.  My three sisters are living proof that there is a God, He loves beauty and He enjoys laughter.  Sheila, Linda and Janice…I adore you!
Here is to yesterday, (our special lunch time.  I look forward to our next lunch date) cheers!  You bring me that special sister light always.
From left to right, Janice, Linda, Karen (me) and Sheila
Shopping at La Boheme where Linda works 4/27/12

Tuesday, April 3, 2012

AUTISM AWARENESS DAY, un-feng-shui-ed

AUTISM AWARENESS DAY...It’s the end thereof.  Mommies and daddies all over the world spent twenty-four hours somewhat like this….


In honor of our son, Zachariah William who carries the torch of light and joy

IT IS MORE THAN "JUST" for Zach, it is “must”:  Thinking In Pictures, by Temple Grandin. Both the book and the movie shine an important and creative light into the world of Autism.  

ZACH HAS AN internal alarm clock (a groove not unlike the Mariana Trench located in his brain that wakes him between 1:30 and 3:00.  Time change, schmime change).  Those pesky must’s!  I slog down the stairs in my pj’s at 1:45 (Web and I alternate nights getting up with Zach, last night was my night to get up).  I make my way into Zach's room.  He’s out of bed playing with a bin full of stuffed toys, he’s stuck (stuck happens).  I wait…still waiting.  My back feels like a tight bungie, I lean over and grab the toys on the floor and toss them onto his bed then…after what seems like an hour, I lift the bin and place it on his bed (thinking out of sight…).  He stands wondering where his toys have gone (but he’s moving).  His sagging wet diaper is replaced with a nice dry one.  He and I schlep to the kitchen with his water cup.

ZACH flips toys across the carpet, I stare blankly he’s stuck again.  I keep saying, “water” to cue him, but it takes a while…finally, ten minutes later...we replace the water cup in the fridge door with the newly filled one.  He grabs the cold one….must because) then digs around in the silk leaves (he’s yanked off of my silk plant over the past two years), window clings and such that fill the metal sand bucket setting on the counter (it’s his special stash)…must because.  Were I not such a close observer of autism, I may say from afar, most of life is….just because.  However, I have concluded that from Zach’s compulsive nature, most of his obsessions are “must because's” for him.  So we grow patients, you know, those rare nerve endings that can take a licking and keep on ticking?  Yep, those tender whips.
He climbs back into bed; I’ve gotten his movie and computer up and running, I say goodnight and haul my goose fleshed body up the stairs and back to bed.

4:00, THE WORD “diaper” hits sleep dulled eardrums.  I feet-fumble-stumble down the stairs and into his room, his diaper is hugging his knees.  He wants it off.  The heavy insides do a back-flip to the floor.  I am so overly grossed out right now….., but there is no stopping him, and there’s a huge cow pie, aka “Zach-pie” on his clean rug!  He’s about to put his butt on his sheets, no time for medical gloves…darn those must’s, those must’s, those must’s!!  I grab a few wipes from the container beside his bed and do a quick swipe, good, but not good enough.  I don gloves, working quickly to clean him up, fit him to a new diaper and powder, lots of powder (all the while hoping the poop angel kept the sheets clean) and then….it’s the same routine as before, kitchen, water, dig in bucket, back to bed.  Poop angel fail….I wipe the bed with a handful of wipes… I’m not in the mood to change sheets at 4:am; his bed has been changed four times in the last four days.  He’s up for the day.  I am not.  He’s back in bed with cookies.  I'm back in bed fighting a hot flash and begging sleep to come.

Zach’s bed at 7:am after hours of playtime.
6:30, EXERCISE BIKE for interval training; Web has been out in his wood shop working since 4:00; Zach has every book from his bookshelf on his bed along with every ball from the closet and every stuffed animal from the bin that sets on his toy shelf.  His bed looks like the city dump (cleaner and smells better…today anyway).  I am reading, Save The Cat!, sweating profusely, hoping that the ride will pump my sleep heavy legs to life and that the read will glue my hinder parts to my desk chair.  I get coffee when I complete twenty grueling minutes!  Coffee!!!

7:00,  Coffee.  Wait, I meant, COFFEE!!!!

8:00, ...AND DAD BEGINS Zach’s morning routine.  Books are read, tickles are given (if Zach is in the mood to be tickled, otherwise…. “no-koko!").  Steam boils from the shower; towels, toothbrush ready, diaper and clothes set out…they are ducks in a pond; water everywhere: I draw, crush, and suck his meds and supplements into syringes and prepare his gluten, egg, dairy, peanut free breakfast.

Anti-seizure meds and supplements have to
be liquid.
Pill swallowing is a "mustn’t”.

8:20, I GIVE ZACH HIS MEDS, same place (near the kitchen sink), same position everyday, must because. His computer is moved to the table along with his toys.  Web sits at the table with him, shape toys, photo recognition, popsicle sticks in the slot….till Zach has had his fill.  Even more coffee.

8:45, ZACH EATS BREAKFAST on the sunken living room stairs (it’s his chosen place to eat his meals, except dinner which he takes on the kitchen floor).  Web and I have more coffee and engage in a quick conversation, “what are your plans today?”  “How are you feeling?”  I love you’s said and “Lets do lunch."

9:00 DIAPER change, whether he needs it or not, yep…must because.

9:10, OUTSIDE today we go directly to the yard to play kick-it (a game where multiple balls are kicked from one side of the yard to the other for hours sometimes).  He did not want to walk his trail today.  Sad.
New cup idea came to me yesterday.
It’s the tiniest things that bring a smile.
Jelly jar, plastic canning jar cap with a
hole drilled into the side. Insert straw.
Kick-it in the muddy yard.

9:30, INSIDE BRIEFLY for more balls and a drink of water.

10:00, INSIDE, YES, BRIEFLY for more balls and a drink of water.
It's Tuesday and from 10:00 to 2:00 we have respite; Aunt Linda.  I take a walk, get dressed and delve into this blog.

10:30, SNACK TIME for Zach.  He gets his cookies (Oatmeal) reads his books and Farm and Ranch magazines with Aunt Linda.  They snuggle on the couch and watch Sesame Street (oddly, I’m jealous, this is my favorite “Zach time").

11:30, LUNCH TIME, pork-turkey veggie loaf, apple, baby carrots and pickles.

12:00, walk down the love trail.  Back for another round of kick-it, or two, perhaps three…must because.

Zach waiting for mom to come read
2:30-3:30, BEDTIME routine.  We begin by hauling all the balls that have been taken outside for the day inside, two heaping buckets.  His computer goes back onto his nightstand, the movie, Homeward Bound is slipped into the dvd player, the blinds and curtains are closed, white noise turned on….every detail is checked, “must because”.  Zach removes his own shoes and socks and gets a drink of water.  He goes back to bed to remove his pants, drinks more water (which is always done in the kitchen…must because), back to the bedroom to get the toys he wants to sleep with and he climbs into bed pulls the covers up, grabs a book and waits for mom to come read.
Zach’s favorite page in The Tortoise and The Hare.  It’s all in the
 drawl…"weellll, Slim, do you want Jelly on
that peanut butter?” (you have to have
played the Living Books computer game to understand)

3:45, STORIES ARE READ (we’ve been reading the same stories for 17 years (The Tortoise and The Hare, Just Grandma and Me, Arthurs Teacher Trouble and a book of family photos. Today he chose all new books.  What’s with that?!  This is our time to lie together, talk about his day and we often do EFT (emotional freedom tapping).  He loves one particular side of his head tapped.  I adore this part of our day; I look forward to laying beside him, his soft hair up against my cheek as we read, laugh and connect telepathically, spiritually.  Serenity and peace (more precious than gold) fall heavy.

Dinner picnic style!

4:00 HE TOOK his dinner (in the hallway) outside of his room picnic style (this kid knows how to live!).

5:00, HE'S ASLEEP.  (Yes, we have tried putting him to bed later to see if he sleeps in a bit, but no).
Needless to say, it is now 8:30 and I’m thinking tea and horizontal.  Web and I, on a typical evening, will be found in bed yawning around 7:00, perhaps watching a movie, or reading with our ceramic buckets of rooibos tea.

(Common things this day didn’t include, a seizure and a loud meltdown; thankful!)

Ahhhhh, till 1:30 or 2:00….Good night!

Monday, April 2, 2012


THE BALANCING act of clean healthy food, supplements and patience is tough to feng shui.  As I mentioned in my last post, rigidity can throw a bucket of cold water on the need to create.

ABOUT THE TIME I am ready to pull my hair out from the simple human need to veer off the beaten path and begin to wish, cross fingers-legs-toes, pray and hope for any glimpse of new, it happens.  Mind you, it might not seem like much to the naked normal eye, but to the bulging eye of the primary care giver, any small movement outside of the worn through; it’s really quite significant.

THREE MONTHS AGO Zach stopped taking his walks down his Love Trail (we’re not very happy about this detour).  At first I thought maybe it was just a one week modification to his deep rut brought on by, perhaps, the fact that he didn’t feel well.  Three months down this different road, I’m beginning to wonder.  No amount of coaxing can get him to run that trail daily!  But hey, he’s made a choice on his own and is sticking to it.  That’s sorta cool, sort of grown up of him don’t you think?

OTHER CHANGES, a month, or so ago now he put himself on a fast for three days, no water, no food.  No fever, no tooth issues (as best we can tell), or mouth sores.  We’re still stumped by that fast, but luckily, he is back on track with eating and drinking (though from different cups; they are glass, easy to wash and he gets more water.  This is good).  Since the time change, he has not “forwarded” his sleeping as we’d hoped and prayed, begged and pleaded, instead, he has back-warded it; rather than sliding into the new time and rising at 4:00 a.m. from his old 3:00 a.m. roust, he is chirping at 1:30.  Seriously?  And, is he a VEGAN?  His love of meat on his plate his waning.  What’s that about?  He’s been leaving the meat.  He rarely leaves a crumb.  There are digestive issues that no amount of pre, or probiotics, enzymes, etc seem to help with, so perhaps that might be the culprit.  Still, what do I do…?

FOR STARTERS-A CONCOCTION, A REVISION…3-6-9, it’s a cookie, but not just any cookie.  It’s easy to make, but this cookie; it just might change your life.  We’re a few weeks into this…stay tuned for more.

IF YOU FIND IT DIFFICULT to get your child to take their supplements and eat enough to get their much needed fiber and omegas, here’s a sneaky twist.  I’ve posted an oatmeal cookie recipe in earlier blogs and though it is a healthy treat (for the most part, minus the sweetener) this is a modification to that adored old friend, The Gluten Free Oatmeal Cookie.

I CALL IT Oatmeal Cookie 3-6-9:  Chai seeds, flax meal, hemp seeds, coconut and pasture butter combined with a healthy array of gluten free, egg free and peanut free ingredients give us our omegas, fiber and other benefits in a delicious cookie.  He loves them!  So do I.

THE FOOD ISSUE, WELL, THAT seems solved.  Now if I could just come up with a sleep inducing cookie and instant exercise powder we’d have this caregiver thing wrapped and could market it in cellophane baggie.

Preheat oven to 350 degrees

In a glass measuring cup add
9 tbls spoons warm water
3 tbls chia seeds
1 tsp organic vanilla
1 cup raisins
soak all for 1 hour

In the mixing bowl combine (I use a KitchenAid Pro 6)
1 cup softened pasture butter (even if your child is dairy free, pasture butter should not bother them)
1 cup coconut palm sugar and either
1 cup brown sugar, or 3/4 cup honey
1/3 cup flax meal
1/3 cup hulled hemp seeds
1/3 cup unsweetened shredded coconut
2 1/2 cups gluten free flour (I like Namaste Perfect Blend)
1 tsp salt
1 tsp cinnamon
2 tsp soda
2 cups oatmeal
1/2 cup dried cranberries, or raisins (optional)
3/4 cups chopped pecans, or walnuts (optional)
*may add more water, teaspoon by teaspoon till the dough is playable and feels somewhat sticky.

Drop heaping tablespoon of dough onto parchment lined baking sheet.  Bake for 10-12 minutes, remove from cookie sheet after they have cooled for 5 minutes.  They may be frozen, or refrigerated (if there are any left at the end of the day).  Makes 4 dozen cookies.