REQUIEM

It's been a week since I've seen "The Secret Life of Bees," but I can't stop thinking about it. It's all the mother stuff, you know.

For a week I've been meditating on the last line of the movie, "I feel her (Mary) in unexpected moments, her Assumption into heaven, happening in places inside me. She will suddenly rise, and when she does, she does not go up, up into the sky, but further and further inside me."

For a week I've been playing the soundtrack to the movie. All. Over. The. House.

For a week I've been lighting the Marys and working on forgiveness.

For a week I've been trying to turn all my "force" energy into "allowing" energy.

Yesterday I went to the Children's Mass at Rojo's school. The theme of the mass was, "Go make a difference," which is what my family always says to each other after our morning prayer time. It's also what Kathleen and I say to each other before we part after our morning walks.

Saying it is the easy part.

As I sat in that church and looked around at all the people who have touched my lives in the nine plus years I've been involved in this community, I was overwhelmed.

They have made a difference.

I go up at communion time to receive my blessing. As I approach the priest, right hand placed over my heart to indicate "Blessing, please, I'm not receiving communion," he looks at me, laughs, and says, "Oh, Carrie," then proceeds with his blessing. It was a moment of total honesty, and I laughed, too. I know I befuddle him. And that's okay with me.

Back in the pew, sitting there all prayerful, I get the message, "Go to Kitchen Kaboodle." WTF???

I think, Surely I am not being asked to go to Kitchen Kaboodle. Why would God/Spirit/ the Universe want me to go there?

It will not shut up.

The only store I can think of is in a part of town I actively avoid. Someone lives nearby that I have decided I don't want to run into.

"Allow," the voice says.

"Shit," says my voice.

I remember there is another Kitchen Kaboodle I can go to, instead, and quickly try to renegotiate with the powers that be.

They're not buying it.

"No," they say. Repeatedly.

So, I rise from mass, and drive my car straight to the damn store, which isn't even open yet, and I think, Some plan YOU have!

Everywhere I look are active reminders of another lifetime, not so long ago.

"Allow," says the voice.

I sit in my car, waiting for the store to flippin' open, and I allow all the feelings to enter. I allow the happy memories of these nearby locations to join some of the regrettable moments.

Finally the store opens, I go in, make a couple impulse purchases, and skitter to my car, eager to make my getaway, having successfully outsmarted the Divine.

Feeling smug, I drive back to my neighborhood/comfort zone. I pull into the grocery store and throw a few things into my red hand basket. I'm starting to fully relax from the close call at Kitchen Kaboodle, and there she is. Right in front of me.

My mother. The person I have the issues with, and had been projecting on to the person I'm avoiding.

The person I'm avoiding? Same person that turned me onto Mary in the first place.

We visited. It was fine. Actually, it was pleasant.

I left, got in my car, drove to the drive-thru bank, finished my transaction, and as I was pulling away, there she was again.

My mother.

No accidents.



REQUIEM
Eliza Gilkyson

Ooh....
mother mary, full or grace, awaken,
all our homes are gone, our loved ones taken,
taken by the sea,
mother mary calm our fears, have mercy,
drowning in a sea of tears, have mercy,
hear our mournful plea,
our world has been shaken,
we wander our homelands forsaken,
in the dark night of the soul bring some comfort to us all,
o mother mary come and carry us in your embrace,
that our sorrows may be faced,
mary fill the glass to overflowing,
illuminate the path where we are going,
have mercy on us all,
in funeral fires burning,
each flame to your mystery returning,
in the dark night of the soul your shattered dreamers,
make them whole,
o mother mary find us where we've fallen out of grace,
lead us to a higher place,
in the dark night of the soul our broken hearts you can make whole,
o mother mary come and carry us in your embrace,
let us see your gentle face, mary.
ooh.....

AS SIMPLE AS THAT

So Rojo and I were doing our usual Wednesday night thing, watching a "Jon & Kate" marathon, and were on the episodes where they go to Hawaii to renew their vows. They're planning what to take on the plane for all the kids, discussing their travel arrangements to fly to San Diego to acclimate to first a 3-hour time difference, before going on to Hawaii, and Rojo says to me, "Have I ever been on an airplane?"

"Yes. You've been on two. Remember when we went to Disneyland when you were in first grade?"

He nods.

"And when you were a tiny baby I took you to New York to visit my friend, Terry."

"I don't remember that," he says.

I nod, while remembering the hell that was that trip. I was out of my mind the whole time with his crying. Picking up on my thoughts, he says, "Did I cry a lot?"

"Yes, yes you did. Did you know that you used to cry a lot when you were a baby?"

This is the first time he and I have ever discussed this.

He nods.

"Do you remember why you used to cry?" I ask, hoping the Wise One will enlighten me.

"Some babies just do," he says.

And I am one shade lighter.

I'M MOVING OVER, THERE'S A NEW WRITER IN THE FAMILY

The wonder that is Jenn, who taught Rojo how to ride a bike this summer, has now taught him how to write a paragraph. She showed him a picture of a dog, and instructed him not to push "enter," as they are working on having all the words form a whole, not a list, not to use numbers, for the same reason, and to not tell the dog what to do, but tell the reader what the dog IS doing.

Here's what my boy wrote:

the dogs name is Sylvester. The dog is watching T.V.. The dog is panting a pumpkin for hollwen. The dog is making clay by him self . Sylvester also likes food like bananas and corn and apples and grapes . he’s looking at is nose because he fell’s like it . he’s walking by him self. Then what he will do is go out side and water the plants and play basketball. He looks funny I don’t know why . he likes to swing on the swings and swim to. Then he is going to go back inside and watch some more T.V..

Right now I "fell's like" I could cry. With gratitude.

SACRED CONTRACTS

A big thank you to Amber at The Believing Soul for urging me to read Sacred Contracts. I've probably had this book longer than I've had the Buddhist offering bowls, and again, not known why. In fact, I think I paid full price for the book right when it came out (2001). Then it moved into a pile, eventually it found its way onto a bookshelf covered in glass, and has rested, undisturbed, ever since.

Until now.

Let me give you some nuggets from just the first few pages:

" "Our strengths and fears divide our spirt into polarities - into a duality, in Eastern terms - which is why faith and doubt wage external battles in our psyches."

* "When your life plans are suddenly interrupted, you can choose to view that event as a 'Contract intervention' rather than as a crisis."

* "You can also think of your Sacred Contract as your own unique contribution to life around you that arises from your particular set of circumstances, relationships, and family. Whatever interpretation you choose, the extent to which you can decode your Contract will depend on your willingness to accept that everything we do is for a purpose far greater than we will ever know, that every deed you do affects your life and others' for good or ill. As Thich Nhat Hanh teachers, we 'inter-are.'"

C'mon with "Contract intervention!"

And although it's not telling me anything I don't already know, it's helping me "get it," just the same.

Can't talk now, gotta go find a spoon and eat up every single word in the book.

So I'm at Trader Joe's, I locate the wine guy, Robert, and I tell him I'm looking for a decent bottle of champagne.

"What's the occasion?" my aging hippie helper asks.

"November 5th," I answer.

He looks at me, not getting it.

"You know, post election. I'm planning on celebrating."

"Here's a good one," he says. "Either way, you're gonna want to get drunk."

SEVEN SACRED VESSELS

Thank you for your feedback on the post, "OM MANI PADME HUM." It's part of a much larger piece, and as I work on it, all of you are going to get dragged along with me. Enjoy!



A few years back when I began learning about Buddhism, I went into a Tibetan shop and told the owner I wanted to create an altar, and needed the basics. One thing he instructed me to get were a set of Buddhist Offering Bowls.

They come in a set of seven, and he said to lay them side-by-side, one kernel of rice width between them. Each morning I was to fill the bowls with water, from left to right, all the way up to the rim, then at sunset remove the water, right to left, turning the bowls upside down.

And although I've not always remembered to empty the water each night, my seven bowls have always remained filled and equidistance from one another at all times.

"What are the seven bowls about?" a friend, seeing my altar for the first time, asked.

"Ummmm... yea, well I don't actually know. They're just really important," I answered.

And so here I am today, several years later, working to understand why I do the things I do. A theme in my life. Definitely.

The bowls hold offerings, when the offerings are made each day, both merit and wisdom are accumulated. Obviously the Buddha and other enlightened beings don't need anything, so these offerings are made with the belief that it is good to be giving. For us. We benefit when we give.

Traditionally the first bowl is for water used to cleanse the mouth or face. This symbolizes auspiciousness.

The second bowl is water to wash the feet, symbolizing purification.

The third bowl is used to offer flowers, representing generosity.

Fourth comes incense, representing moral ethics.

The fifth bowls is for a light or lamp, signifying stability and clarity of patience - dispelling all ignorance.

The sixth bowl offers fragrance, representing perseverance, meaning joyous effort.

The seventh bowl is to hold delicious food, representing samadhi (nectar or ambrosia) to feed the mind.

Musical instruments are often at the end, signifying wisdom, as wisdom is a special power of the mind that penetrates phenomena, namely, compassion.

It is perfectly acceptable, and common, however, to simply fill each bowl with water. By doing so, you are preventing against greed or self-importance, which could destroy the virtue of the offering.

And all that merit and wisdom you accumulate? You are to dedicate it to the welfare of all beings, with the wish that they be free of suffering and attain enlightenment (awaken).

Tomorrow as I fill from left to right, I will try also to fill my mind with:

Auspiciousness (positive causes and conditions which bring positive effects)
Purification (from negative karma and obscurations)
Generosity (especially with wisdom)
Moral Ethics (cooling the mind from suffering)
Stability and Clarity of Patience (dispelling ignorance)
Joyous Effort (may all sentient beings progress in their attainment of the qualities of enlightenment)
Ambrosia to Feed the Mind (keeping the mind healthy, clear, calm and peaceful)
And the phenomenon of compassion (free from all confusion and ignorance)



* Photo from flickr.com

OM MANI PADME HUM

It is said that all the teachings of the Buddha are contained within the mantra, Om Mani Padme Hum, and that by saying it, or reading it, you are invoking loving compassion and the wisdom of ultimate reality. It also makes a really good substitute for “Oh my God!”

Sonam sits at the kitchen table, her table now, where the Tibetan food she works to create in her kitchen, is served to her family, my 41-year-old brother, Michael, and three-year-old nephew, Kunga. I make the fourth at this table, and somehow round things out. With me in their circle there are two blue-eyed blonds, and two brown-eyed brunettes. With me at this table we are two males and two females. With me at this table, this table, we are a family.

"Ben & Jerry's Chubby Hubby?" Kunga asks, indicating he's done with his dinner of momos, a fried dumpling-like dish made of chicken, and served with rice, and dahl.

"Om Mani Padme Hum, Kunga! No Chubby Hubby! You not finish momo!"

Kunga, nonplussed by her feigned outrage, persists. "Ben & Jerry's Chubby Hubby!" he repeats.

From my seat at their round table I smile at this boy who bridges the two worlds from which his parents came. His father, my brother, grew up in this same house. When he was three, he ate at this same table. His mother, Sonam, grew up in rural India in a Tibetan refugee camp. Camp 11. At Kunga's age she lived in a house still without running water or electricity.

Both electricity and running water flow freely in this recently remodeled kitchen. In fact, it's hard to believe it's the same kitchen in which my mother once cooked. Gone are the brown, early 60s appliances. Gone is the marbled brown linoleum and beige formica. Gone are the veneer cabinets with hammered pulls. In their place is hardwood, copper, butcher's block and stainless steel. It is, however, easy to believe it is this same table on which she placed the food.

The wall that once separated the kitchen and living room has been removed, and now you can look from one end to the other, and everywhere your eyes land, you will see the words, or the Sanskrit writing, Om Mani Padme Hum. It is stenciled above the fireplace. It is etched on glass. On this kitchen table lies a prayer wheel, where the mantra is written hundreds of times, and each time one of us passes by we give the wheel a spin, sending loving compassion and the wisdom of ultimate reality, out into the world.

This table went from our family's place to dine, to my father's drinking table.

Now back to my family's place to dine.

Om Mani Padme Hum.

RUN, don't walk, to see this movie.

Then keep replaying the last line of the movie in your head, each time thinking, Best last line of a movie, ever.

Then get the soundtrack and listen to it over and over and over again.

Then we can be twins.

MAKING GOD LAUGH

So, yesterday I got pulled over, literally, as I was driving. A friend flagged me down. She needed to vent about some OUTRAGEOUS comment a teacher had made, in front of students, which disparaged special education students.

Then I got myself back on the road and met with two women from another school, and listened as they poured out their frustrations with the ways their children with learning differences are being treated, or should I say, mistreated.

Last week I met with two different moms, each wanting to "pick my brain" about their child's special learning needs.

Few days ago I got a phone call from someone needing a sounding board.

Struggled with myself each time, Am I just using these meetings to distract myself from writing? (A favorite technique of mine.) Or, is the Universe trying to tell me something? Maybe writing is NOT what is most important now, maybe I'm using the WRITING, to distract myself from what I REALLY need to be doing.

Day before yesterday I had a really great HDR (heavy, deep and real) with a friend about “luck,” “blessings,” karma and such. We were talking about our wildly different backgrounds, the way we were parented, the way we parent, our expectations for how life should be, all that, and we came back around to no accidents. She has her experiences so she can do her ministry/gig/”thing,” and I have mine for the very same, yet different reasons.

There's a reason I have this exact skill set.

There's a reason doors aren't opening for the writing, at least for now.

There's a reason opportunities to advocate are falling like pennies from heaven.

Shit.

I’m an advocate.

Didn’t set out to be an advocate.

Don’t necessarily WANT to be an advocate.

Don’t have business cards, yet everyone seems to know how to find me.

But it’s like they say, "If you want to make God laugh, tell her your plans."

Yea. It's a lot like that.

SHE WHO RUNS FROM VELVET CURTAINS

Been having a series of dreams in which I'm trying to escape someone from my past. My wise friend says it's a good sign, that my psyche is working it all out for me.

Couple nights ago the person led me towards a dense hanging of dark blue or dark purple, couldn't tell, velvet curtains. I waited until this person was well within their web, then I turned and ran the other way.

I e-mailed the dream to WF (Wise Friend) and she wrote back, "What a great dream! Love the velvet part, too. Speaks to how easy and seductive it would be to follow. But now it’s all about the web of curtains. Yes, RUN."

Just now, looking for a photo of velvet curtains I found this one - an ad from Amazon. Now they sell curtains? Velvet ones? I may just have to 1-Click me some curtains.

For practice.

HIGH AS A KITE

Had conferences at Woohoo's high school yesterday - it's like speed dating, 3 minutes per teacher then off you go to the next one, as each teacher is lined up alphabetically in either the cafeteria or library.

STM and I, neither of us patient line waiters, divided and conquered, but my "date" got done in time for me to slip over to one of his, Woohoo's health teacher.

Can I just say, I LOVE THIS MAN? First of all, this is a Catholic high school, and he's a Buddhist. I don't have to tell you how tickled that makes me. He rings Tibetan bells at the start of class and the kids must have quiet bodies and mouths, and ideally minds, by the time the bell fades out.

Then he has the class chant, "May all that we do here today, bring us both honor and joy."

The first unit? Tai Chi.

When we finally got around to asking how Woohoo was doing, he said, "She's GREAT about getting into the material. She's HORRIBLE about keeping her mouth closed when it's time to move on."

We asked if we should intervene, as he said he doesn't have a seating chart, on purpose, because a big part of what he teaches is about choices, and how they affect outcome.

"No," he answered, "there's no need to intervene. As I tell the kids, success isn't an event, it's a pattern. We're working on her establishing a pattern of success."

This man may be my daughter's freshman health teacher, but he's already done much to improve mine.

TO BE FAIR...

He married a conservative. He's now married to a bleeding heart liberal.

He married a Christian. He's now married to a Buddhist.

He married someone with perky boobs. He's now married to someone with pendulums.

He married someone with a promising career. He's now married to someone that hasn't made a nickel in I don't know how long.

He married someone that promised to learn golf, tennis and skiing. He's now married to someone that refuses on all accounts.

He married someone that thought she'd be okay sitting beside him on the couch as he channel surfed. He's now married to someone that needs three rooms between her and all surfing activity.

My old high school teacher said,"Women marry men hoping they'll change, and they don't. Men marry women hoping they won't change, and they do."

He was right.



* Photo from www.giftsbyprovintech.com

IT TAKES ONE TO KNOW ONE?

Didn't shed a tear when I wrote any of the drafts/versions of the Family Voices pieces.

Not. A. Tear.

Even as I wrote about grief being like a Slinky, and each time coming around and being surprised again, I still thought to myself, I've really moved through a lot of this.

Friday I had my mother's support group meeting at my house. Kathleen had suggested I read one of the pieces I'd written to the group, as an opener.

I couldn't make it two words without a fresh Kleenex and a moment to gather myself.

A. Total. Wreck.

Something so powerful about being in a group of moms all in the same boat.

Something so cathartic about crying with others, especially after a week of fighting against others.

Something so wrong with the fact that I yelled all morning at Rojo to hurry up and get ready for school, so I could hurry up and support him.

Something so right about being with a group of people that get that.

Something so affirming by hearing a new reader tell me that although our circumstances are very different, mommy stress is mommy stress, and she could relate.

Something so heartening to hear from friends that don't have kids, and get it anyway.

Something so healing about sorrows dividing, and joys multiplied, when they are shared.

I voted today! (Oregon is a vote-by-mail state - just one of the many things about being an Oregonian that ROCKS).

I feel better already.

Hope.

THAT WHICH CAN'T BE NAMED

Eckhart Tolle speaks of "touching with gentle awareness" our emotions, that are indicators and barometers of what's going on deep within us.

The astrologer I can't stop talking about, told me to not judge my emotions, but to label them - simply give them a name.

Had dinner last week with someone I consider to be wise and deeply spiritual. Told her some of the things I was struggling with, and she said three things that made a lot of sense. One was, "Whenever you're uncomfortable, a boundary has been crossed. Back up and see where it got crossed, and then determine what, if anything, you need to do about it." Then she told me that when dealing with difficult people, I can either choose to remain entangled, spending lots of energy worrying about what they're thinking, how they're going to react, what to do when they react, how to avoid that, etc., etc., etc., or I can choose to live with the discomfort of that relationship being over, and that adjustment period that comes with that knowing.

The third thing she said, after listening to me go on and on how upset I was that someone was upset with me, and I hadn't done anything, was that I was operating under a lot of assumptions there. I was assuming I knew just what thoughts this person was thinking. I was assuming where and how they got those ideas. I was assuming I had a particular place of importance in their life, and actually, I had no idea. And all my assumptions were accomplishing nothing but getting, and keeping me, upset.

She was right. Lots of assumptions. Lots of emotions I cannot name, other than "bad."

I know that what isn't love, is fear, and so I'm afraid of something, and that fear is what feels bad.

Fear is TFBS.

Here's to love. Period.



* Photo from rainbowscented.filed.wordpress.com

TOP 10 THINGS I LOVE ABOUT MY NEW NATUROPATHIC DOCTOR

10. As soon as I scheduled an appointment to discuss my hot flashes, they disappeared!

9. First meeting with her she listened to my whole life story, with rapt attention, for 45 minutes.

8. After I told her whole life story, she said, eyes peering over her very hip, very cute, early 30s glasses, "There comes a time in every woman's life when she just needs to say, BLANK you."

7. She thought it was my adrenal/stress system that had been causing all the problems.

6. She ordered a cheap and easy saliva test, and we were able to determine many, many useful things from it.

5. Turns out my Cortisol levels are backwards, low in the morning, high at night - she knows how to correct that - easily.

4. She's giving me supplements that I'll only need for 3-6 months, and then my body will be able to handle it from there, after it's been trained by the supplements, and given a chance to heal/recalibrate.

3. She told me to keep walking with my friend/confident, to consider it sacred, like a religion, and tell anyone that tries to encroach on that time to BLANK off!

2. Although she would prefer I do give up all caffeine, she's okay with 1 cup.

1. She didn't specify what constitutes a "cup."

THE HAPPY LIST

It's been a week. I've had to dust off my warrior hat and do some fighting for both my kids. Seems like every e-mail or phone call relayed bad news: death, cancer, INS detention, on and on and on some more.

Yesterday Kathleen and I were walking and we passed a dead squirrel. "Looks like it fell from the tree," she noticed. Within a block we saw another squirrel, another apparent bad climber. "That's number two," I said with a tone that implied I gloomily thought one more was on its way.

Got home, showered, went to the computer, and saw out my window number three, being picked to pieces by crows. Perfect I thought. I fired off an e-mail to her, "Just saw #3."

My black cloud and mood followed me throughout the day, as they have all week.

Watching Rojo's NBA game in the living room last night (Pistons vs. Lakers), he stopped the game abruptly and looked at me with his best ear-to-ear.

"Are you going to make a list?" he asked.

"A list?" I said.

"A happy list? Not a trouble list?"

"Good idea," I said.

He finished the game.

I'm letting my cloud and mood be finished, too.

IS THE THIRD TIME THE CHARM?

Dear Readers:

Thank you SO much for your overwhelming support, encouragement and wonderful suggestions, both in on-line comments, and off-line e-mails. I am eternally grateful. I tried to combine the good ideas you provided, and create a third piece. If you have it in you to read one more version, I would love to know if you think I pulled it off, if this is the piece to submit, or if I should submit the first two pieces and beg to have them both considered.

Thank you, thank you, thank you. I have the best blog readers in the world.

love.


FAMILY VOICES - Version #3

My now twelve-year-old son, Rojo, falls neatly into exactly zero categories, he has no tidy syndrome that helps to explain his “quirkiness” to others, but does have many diagnoses that all point towards him being somewhere along the autism spectrum, or as having a pervasive developmental disorder, not otherwise specified – a term that continues to confound me, even after twelve years “in the business.”

Rojo was yanked from my body on his very due date, and gave a lusty cry. Everyone smiled, “Good lungs!” the doctor cheered. As the nurses placed him on the scales and saw his weight register at 9 lb., 5 oz., we got the thumbs up sign from our end of the delivery room.

When my own pediatrician came the next morning to see Rojo for the first time, he said, “Now, this is what a full term baby looks like!” both of us recalling the birth of my daughter, two years prior, who while only a week early, was a puny 6 lbs. 6 oz.
We all had high hopes for this little bundle of joy, and as we noticed his dimple in his right cheek, we were certain lots of smiles and joys would be ours to have.

We were wrong.

At least in the beginning.

Within days of his birth Rojo began to scream. Not cry. Not fuss. Not get a little cranky when he was hungry or tired. He began to scream. I knew within the depths of my soul, that something was wrong. No baby could be this unhappy without a reason. This was the scream of a child in pain – excruciating pain.

I took Rojo to the pediatrician for all his regular Well Baby appointments, and several sick baby appointments, too. The pediatrician, a lovely man with two young children of his own, dismissed my concerns at every opportunity. How I wish he’d just once looked at me and said, “If you think something is wrong, something is wrong. I am a specialist of children. You are the specialist of your child.” If he’d thrown in a little, “You’re not crazy. I know the crying is driving you crazy, but you are not crazy. You are strong and brave, and I will help you to find someone that can tell us both what’s going on,” that would have been even better.

Looking back, I feel it was well within my rights to expect that from my health care professional. With the lack of validation, came a lot of things we didn’t expect.

We didn’t expect to have a child that only eats five foods, none of which show up on the food pyramid. We didn’t expect to have a child that cannot play organized sports, be in a classroom without an aide, or take eleven years to potty train.
We didn’t expect to have a child who may never live independently. We didn’t expect our child rearing years to extend to the ends of our lives. We didn’t expect we would need a plan in place for what happens after we’re gone. We didn’t expect to burden our older daughter with this, either.

We didn’t expect to have working knowledge of acronyms like ADHD, OCD, ASD, SID, and PDD-NOS. We didn’t expect to become warriors on bad days, advocates on good days, single minded in our drive to pave the way for our son.

We didn’t expect grief to be something we’d cycle through, again and again, like winding our way up a Slinky, each time being as surprised as the last time, when we come back to the same old place: The place of Why.

We didn’t expect the depths of love we know now, that we knew nothing of before.

We didn’t expect to stop being the teachers along the way, and become the students.

We didn’t expect that the greatest lesson of all, would be to release all expectations.

(654 words)

FAMILY VOICES

Dear Readers:

Okay, I have two versions of the "Family Voices" piece I've been asked to write. I need you to vote on which one you think I should submit. You can either leave a comment below, or if you'd prefer, e-mail me at: fullycaffeinated@comcast.net

Here's the criteria:

* Give nurses/health care professionals inside look at what life is like for parents of children with a disability or chronic health condition
* A reflection of my lived experience
* Not the whole story - just a significant part, i.e. diagnosis/es, when first discovered something was wrong, transitions, unexpected joys/gifts, how expectations have changed, letting go, etc.
* Include a description of child's condition to give readers background
* 500 words

Piece #1:

My now twelve-year-old son, Rojo, falls neatly into exactly zero categories, he has no tidy syndrome that helps to explain his “quirkiness” to others, but does have many diagnoses that all point towards him being somewhere along the autism spectrum, or as having a pervasive developmental disorder, not otherwise specified – a term that continues to confound me, even after twelve years “in the business.” When I get in charge of the world, this non-helpful, not otherwise specific “diagnosis” will be amongst the first to go.

What we do know about Rojo is that he is dyspraxic, has poor muscle tone, auditory processing disorder, does not have either a right or left handed dominance, is a flat-footed, over-pronator, has Sensory Integration Disorder, Attention Deficit Disorder with Hyperactivity, Obsessive Compulsive Disorder, and spiritual gifts that defy a 21st Century label.

Rojo was born in the summer of 1996. He was yanked from my body on his very due date – a sign of things to come, this boy would be nothing, if not a slave to time - and gave a lusty cry. Everyone smiled, “Good lungs!” the doctor cheered. As the nurses placed him on the scales and saw his weight register at 9 lb., 5 oz., we got the thumbs up sign from our end of the delivery room. They measured him at 22 ½ inches and marveled at his nice, big head.

When my own pediatrician came the next morning to see Rojo for the first time, he said, “Now, this is what a full term baby looks like!” both of us recalling the birth of my daughter, two years prior, who while only a week early, was a puny 6 lbs. 6 oz., and didn’t have the best Apgar scores in the world.

The doctors, nurses, grandparents, and we parents all had high hopes for this little bundle of joy, and as we noticed his dimple in his right cheek, we were certain lots of smiles and joys would be ours to have.

We were wrong.

At least in the beginning.

Within days of his birth Rojo began to scream. Not cry. Not fuss. Not get a little cranky when he was hungry or tired. He began to scream. I knew within the depths of my soul, that something was wrong. No baby could be this unhappy without a reason. This was the scream of a child in pain – excruciating pain.

I took Rojo to the pediatrician for all his regular Well Baby appointments, and several sick baby appointments, too. He seemed to have chronic ear infections. The pediatrician, a lovely man with two young children of his own, dismissed my concerns at every opportunity. How I wish he’d just once looked at me and said, “If you think something is wrong, something is wrong. I am a specialist of children. You are the specialist of your child.” If he’d thrown in a little, “You’re not crazy. I know the crying is driving you crazy, but you are not crazy. You are strong and brave, and I will help you to find someone that can tell us both what’s going on,” that would have been even better.


Piece #2:

As friends all around us, those who began their parenting at about the same time as us, start to launch their children into the world, the realization that our son’s “launch” may never fully occur, hits us with fresh waves of grief.

For the most part we are at peace with the fact that the plan we had, and the plan we actually have are two very different things. For the most part we accept that our son has special needs and with those needs also come very special gifts. And for the most part there are more days of joy and gratitude than sadness and resentment.

For the most part.

We didn’t expect to have a child that only eats five foods, none of which show up on the food pyramid. We didn’t expect to have a child that cannot play organized sports, be in a classroom without an aide, or take eleven years to potty train. We didn’t expect to have a child that would be obsessed, for years on end, with garbage trucks and calculators, time and scoreboards.

We didn’t expect to have a child that possesses no sense of jealousy or competition, and is completely uninfluenced by the media’s pervasive “buy this” mentality. We didn’t expect to have a child that has peace, love and compassion oozing from his being, at an age “typicals” are self-centered and moody.

We didn’t expect to have a child who may never live independently. We didn’t expect our child rearing years to extend to the ends of our lives. We didn’t expect we would need a plan in place for what happens after we’re gone. We didn’t expect to burden our older daughter with this, either.

We didn’t expect to have to fight to get someone, anyone, to believe us there was something wrong with our little baby. We didn’t expect to react so strongly, twelve years later, when someone, anyone, implies that there is now.

We didn’t expect to have working knowledge of acronyms like ADHD, OCD, ASD, SID, and PDD-NOS. We didn’t expect to become warriors on bad days, advocates on good days, single-minded in our drive to pave the way for our son.

We didn’t expect grief to be something we’d cycle through, again and again, like winding our way up a Slinky, each time being as surprised as the last time, when we come back to the same old place: The place of Why.

We didn’t expect the depths of love we know now, that we knew nothing of before.

We didn’t expect to stop being the teachers along the way, and become the students.

We didn’t expect that the greatest lesson of all, would be to release all expectations.


Thank you, readers! I so appreciate your valuable input!



* Photo from http://adsoftheworld.com

CREATING QUIET SPACES

"Ultimately, we have just one moral duty: to reclaim large areas of peace in ourselves, more and more peace, and to reflect it towards others. And the more peace there is in us, the more peace there will also be in our troubled world." Etty Hillesum -
An Interrupted Life


Stressed out?

Just lost a pile of money in the stock market?

Never had any money to start with?

Worried sick over the election coming up?

Relationship problems?

Kids driving you crazy?

Work has become too much work?

Have more balls in the air than a circus juggler?

Help is on its way, a new web-based business designed to help you find and create, more quiet spaces in your life and mind.

Nancy, who just happens to be one of my cousins, has found amazing artists, chosen items that are locally made and eco-friendly, and brings to this business a unique blend of retail and counseling experience. You can do it all on your own, or work with Nancy to design something special, something helpful, and something quiet.

For those living in the Portland area, Nancy will be hosting two trunk shows, Sunday October 19th from 2-5:30, and the following Sunday, the 26th, also from 2-5:30, at 2532 NW Upshur. You can get more information, and/or leave comments with Nancy directly on her website, Creating Quiet Spaces.

Now, take this and bookmark/make it a favorite - it's not Google friendly right now, but steps are being taken to correct that. Not Google friendly? Not an option.

Anyone else get freaked out by a challenge yesterday, and spend the whole day actively avoiding beginning it?

Anyone else dream of pot holders last night? (You know the ones - the ones you made on a cheap loom when you were a kid, with those stretchy thingies.)

Anyone else decide yesterday their life wasn't worth living until they took everything off the laundry room floor, and scrubbed it within an inch of its life?

Anyone else eat nachos and drink beer for dinner? Again?

Anyone else get asked to time your son to see how fast he could run upstairs, pee, flush, wash his hands, and come back downstairs to tell you? (1:33 - mighty impressive.)

Anyone else take a quick look in the mirror before going to the grocery store, not like what they see, and think to themselves, That's okay - I'm not going to see anyone I know, anyway, and then proceed to run into everyone you've ever met in your 45 years on this planet?

Just checking.






* Photo from www.justchecking2.co.uk

AN EXCITING CHALLENGE

Got a really exciting offer to write a piece that will be part of a chapter in a nursing textbook. The idea is that nursing students, and others in the healthcare profession, could stand to have some understanding of the way the diagnoses process affects families of kids with special needs.

I've got 500 words to tell an encyclopedic story.

I've got 500 words to be uplifting and encouraging, not scolding and bitter.

I've got 500 words to possibly make an impact that will possibly make an impact. Forever.

I've got 500 words that might easily get skimmed over and not add up to a hill of beans.

How about this: Be loving. Be kind. Pretend this is your child.

Too brief?

What more needs to be said? Got 491 words to play around with.




* Photo from www.prnconsultants.com

THE OTHER ONE

Someone gently asked me yesterday, "Does your daughter mind that you don't blog much about her?"

That got me to thinking. Long story short? Yea - a little, but she understands.

She understands that at 14, she reads my blog, some of her friends read my blog, and some of the staff at her school read my blog. If I were to post about her, she'd lose her much deserved privacy, and right to tell her own story.

She understands that her brother is not typical, and she has every feeling one could possibly have about that, including a sense of gratitude for her more "normal" life experiences.

She understands that I'm writing a book about Rojo, and my blog posts are often times my "warm up" to what I'm working on that day.

She understands that I wrote a whole other book in which I thoroughly explored my mothering of her, and our relationship.

She understands that nobody may ever read either of these books, they may never be published, but that the writing of them has been a tool I've chosen to use to help me with my own understanding.

She understands that she does not really have a sibling*, and therefore to ask her typical sibling-like questions about her feelings, will not elicit typical sibling-like responses.

She understands that she does not get 50% of the parenting pie.

She understands that while that isn't fair, it's pretty much the way it is.

She understands that we have felt guilty about that, defensive of that, and try hard not to over-compensate for it in inappropriate ways.

She understands that we love her just as much as we love him.

She understands that while we love him differently than we love her, differently does not equal less than.

She understands a lot more than a 14-year-old should understand.

She understands that we understand that.


* To answer Drama Mama's good question, what I mean by this is she's much more like an only child, than one of two. There is nothing the two of them do together, they don't have to share "things," they don't have to agree on what to watch on TV, they don't really act like siblings - they orbit in two adjacent stratospheres, and it is the exception, not the rule, when they "collide."


To buy the book, Being the Other One: Growing Up with a Brother or Sister with Special Needs, click here.

BIG DAY

Rojo had a big day yesterday. Straight after school we went to Woohoo's volleyball game, then to work a pick-up shift at the Snack Shack.




Then home to play "The Killing Game" with Daddy - whereby he uses his ball-peen hammer-like heels to beat the blank out of Daddy. This is a newer version of "Knee" another game involving hurting Daddy, and making Rojo writhe with pleasure, all at the same time.



Then dinner (sourdough toast with garlic salt), a bath, jammies, and a round or two of "Alleluia," a take-off of "The Yelling Game."



Life doesn't get much better than that.

TOP 10 QUESTIONS CHASING THEIR TAILS IN MY BRAIN

10. If we all go green, converting all our bills to paperless, unsubscribing to all catalogs, doing all our correspondence through the Internet, all things I've personally moved towards, will we bankrupt the USPS? And if so, do we care?

9. Is non-attachment just a nicer word for apathy?

8. How do you keep your prayers from turning into wishes?

7. How long does it take to "get," that some people just aren't ever going to "get it?"

6. How do you remain loving and kind, to people in your life that are neither loving nor kind, yet aren't going anywhere?

5. How do you intervene, without interfering?

4. How do you care, without being careless?

3. How is letting go, different than giving up?

2. How is moving on, different from abandonment?

1. If I know in my heart of hearts, that the differences all lie in the intention/attitude/energy behind the emotions/actions, how do I convince my brain?

GROUNDING

I hear a lot about the need to stay grounded, and I've been operating under a limited understanding of just what that was. I can easily recognize a person that's "so grounded," and one that's "so ungrounded," but can't so easily identify what makes them so, let alone myself.

I know that when talking about electricity, the wires have to be grounded, or you've got yourself a problem - they cannot handle all the energy/current/charge running through them, if you don't do whatever it is you're supposed to do to make them grounded.

And so I guess it's the same thing with we humans? We can't handle all the energy/current/charge that runs through us, if we don't stay grounded?

So what do we DO to stay grounded?

I've been doing a little research, and here's what I've come up with:

TOP 10 THINGS TO DO TO STAY GROUNDED

10. Remind yourself you are in a body - sounds simple, but for me, isn't
9. Feel all that your body is feeling - check in with it
8. Put your body ON the earth - lie on the ground, take your shoes off and put your feet in the dirt/sand/grass/what-have-you
7. Drum, or listen to drumming - something with a strong and steady beat, like a heartbeat
6. Walk in nature
5. Get to the ocean
4. Eat food straight from the earth
3. Drink water
2. Bring nature inside: fountains, rocks, crystals, etc...
1. Breathe

WHEN YOUR MAP IS TORN

I've been off lately - nothing I could put my finger on exactly, just an overall sense of being not quite myself.

Took Woohoo to school this morning, and on the way home, had Antje Duvekot cranked in the CD player, and as I'm singing along, pretty sure we'd make a nice duo, as I already know all her songs by heart, and am perfecting the harmony now, I hear myself sing, "When your path is dark and your compass gone. When your map is torn..." and I realize, That's it! My flippin' map is torn.

I have several friends that recently sent a child off to college. Their maps are torn, too. Even though they are not empty nesters, still have a kid or two in the nest, the little chicks are growing up, and moving out. Their primary roles as mothers is changing. Permanently.

And I thought my funky mood had something to do with that, with nostalgia, with poignancy, with jealousy, with the realization that my nest may never be made empty.

When I heard that song, though, I got a deeper look into my own neurosis: Rojo is doing really, really well. For twelve years my "map" has been to get him on track.

He's on track.

My map is torn.





HOLD ON - ANTJE DUVEKOT

When your heart is bent to weigh down a train
Hold on
When your soul is shipwrecked and you’re miles away
Hold on

When your fortress is an eggshell
Full of haunted cracks you cannot weld
There's no mercy sleep under stolen sheets
In a stillborn dream when your tank is empty
When your path is dark and your compass gone
When your map is torn, torn

And all your life you never thought you'd end here
Hold on
And all the glass is in pieces and the maids are in tears
Hold on

Now you're waiting for a rescue
But no snow white horse shows up for you
There's no mercy sleep under stolen sheets
In a stillborn dream when your tank is empty
When your path is dark and your compass gone
When your map is torn, torn

Minefield crossroads, watch the time flow
Crossless martyrs, just gets harder
Voiceless whisper, tongue played twister
Mirror, mirror, wish you were here

There's no mercy sleep under stolen sheets
In a stillborn dream when your tank is empty
When your path is dark, and your compass gone
When your map is torn, torn

There's no mercy sleep under stolen sheets
In a stillborn dream when your tank is empty
When your path is dark, and your compass gone
When your map is torn, torn

FILL IN THE BLANKS

Rojo has two friends in the backyard with him right now. I've got all the windows open so I can hear their conversations, which is proving entertaining, delightful, and heartening.

These two boys are relatively new in Rojo's life. One just came to his school last year, the other is new this year. Each year that Rojo gets older, and new people join the fold, we hold our breath hoping the culture of acceptance that surrounds him, will withstand the new influences.

Last year four new boys moved into the class that's been together since kindergarten. Four new boys quickly wormed their way into Rojo's heart, and he, theirs.

This year, 6th grade, three new boys were added to the mix. It's only October 1st, and check, check, check, all three are in, in, in.

Rojo's out there telling them, "We're not going to use bad words anymore. We're going to just say 'blank,' instead. Like instead of saying poop stain, we're going to say blank stain. Get it? You try it."

They get it.

They're out there saying blank more times than Carter's got pills.

One "slipped."

"I guess you forgot," Rojo gently reminds, "we aren't saying bad words. We're saying 'blank,' instead."

The kid says, "I didn't forget! I didn't say a bad word!"

"You said, 'dumb,' dumb is a bad word. Don't be a blank. Don't say a bad word like dumb. Promise you won't be a blank. Promise you won't say bad words like that anymore."

They promised.

I promise to go to all their graduations from grade school, high school and college.

I promise to come to their weddings, their children's baptisms, and every other time of celebration in their lives.

I promise not to forget.