Thursday, September 18, 2014

Wednesday, September 10, 2014

Case Worker

I donated blood yesterday. As I was walking up to my appointment, I ran into a friend walking up to get her kids from school.

"Where are you headed?" she asked.

"I'm going up to the church to donate blood."

"Oh, good for you!" she said.

"I feel like I've been donating blood all day," I replied, bitterly.

Yesterday was one of those days where I gave and gave and gave some more. Everyone needed something and they needed it all at the same time. I put over 80 miles on my car just putting out fires.

It's been years since anyone asked me what I do for a living, but three people have asked me in the last week. More specifically, they've said the words, "Do you work?"

I need to come up with a good answer to that question.

I most certainly do work.

Do I get paid?

Not so much.

I can no longer answer that I'm a stay-at-home mom, because the follow-up question is, "How old are your children?" When I answer that they are 18 and 20, that paints an entirely different picture from the reality.

I have spent no fewer than 4 hours this week dealing with the lock on Wil's locker at school. Multiply that by the 10 million details that go into starting a new year for him, and there you have part of the story. I have other loved ones in my life that need care, too, and in one case, that level just keeps increasing.

"Tell people you're a case worker," my friend, Megan, said when I was telling her about all this, "because everyone in your life is a total case."

We had a good laugh about that and the laughter alone, helped tremendously.

As I thought about her joke, I realized it's not true, they're not all a "total case," but they are what I "do." Does that make me a "professional" caregiver? Social worker? Enabler? Personal assistant? What am I?

Today was a better day. The emergencies were kept to a minimum. In one case, we finally got some traction and got some things done that needed doing. Anytime there's forward momentum, my spirits lift. I can not handle spinning my wheels, and anything that feels like moving backwards, sends me through the roof.

I am going to be journeying with a group of women as part of a sacred circle these next nine months. I met with the leaders today to talk about the group, my background, etc. The three of us had a lively and delightful conversation about what our image of God is (or isn't). Later, Wil's former Resource Room teacher and her darling husband and child (Wil's goddaughter), came over for Beer O'Clock. We also had a scintillating conversation about what God is and isn't, in our minds, what we've come to believe, what we used to think, and where we are headed with the whole notion of "God."

you are
god
and you are not
it's good
not to get
the two confused
it is one
                        - Corita Kent

It doesn't matter what I call myself, how I answer the question of whether or not I work, or how big of a "case" people are or aren't. What matters is that I not forget that I am God and I am not. 

It is one.


Wednesday, September 3, 2014

Top 10 Great Things About Dropping Your iPhone in the Toilet


10. It finally answers the question, "Why do we even have a land line?"

  9. At least all that insurance money you've been paying, is finally doing something

  8. You get a five-day vacation

  7. You realize just how dependent/tethered/addicted you've become

  6. People that want to get in touch with you, have to work a little harder

  5. Most won't

  4. You have extra time on your hands because you're not playing/checking/obsessing over it

  3. You feel as though you've gone back in time

  2. You're grateful for the phone you had and realize an upgrade is unnecessary

  1. You're excited to see the FedEx truck drive up with the new one any minute


Tuesday, September 2, 2014

Seniors


This happy, dancing, joyful little boy, will start his senior year in high school tomorrow. He was three in these pictures, and they are certainly worth more than three thousand words. He loved those shorts. He loved those socks. He loved, loved, LOVED that Sesame Street sweatshirt, and he wore it long after it was too small (see exhibit A):

This is a picture of Wil's best bud since kindergarten, Ian. Today Ian drove to our house at 6:00 AM (sharp, don't you know), to take Wil to the Senior Sunrise Prayer Service at the top of a butte. Ian did not take Wil to the prayer service because Ian was dying to get up before 6:00 on his last day of summer, he took Wil to the prayer service because Wil wanted to go to the prayer service. Wil did not want his mother taking him (and his mother was good with that), he wanted to go with friends, just like all the other seniors. And so, Ian took both Wil and his long-time friend, Jack. That's just a tiny example of the kid Ian is. Ian would no doubt be a stellar human regardless of whether or not Wil came into his life at the young age of barely five. But it didn't hurt. 



And you all know how we feel about Claire Rose...



Couldn't you just eat her with a spoon? Claire Rose is one of those kids that was born 40-years-old. Her wisdom is unmatched. I look up to her in all ways except literally, she's a little bit of a thing. Claire Rose has had one heck of a year, but she remains rock solid and ever the wiser for the tremendous obstacles life has thrown her.





The photo above is of two of "The Boobs," a name Wil came up with for the pack of boys that have been running around together since fifth grade. Woohoo can, and should, marry any one of The Boobs. They are all the boys you bring home to mom. The Boobs are all playing varsity football together this year. For three of them, they haven't played football in years, but the team needed them and they needed to spend each and every minute they can being The Boobs until they scatter and go their separate ways a year from now.

Based on the Special Olympics Project UNIFY model, wherein a team is made-up of both typical and special athletes, there will be a religion class at high school this year that is "unified." Don't you know it, both Claire Rose and Ian are in it with Wil.

My vow to myself is to be present to this year ahead. To really be with the moments as they present themselves and then pass. I'm done crying because it will all be over soon. I know there will be no shortage of people in Wil's life once high school is over, even if there's a shortage of typical peers. 

Thank you to each and every one of the many, many, many angels in Wil's life these last 18 years. He is deeply blessed and forever changed.

And so are you.




Thursday, August 7, 2014

Pat Longo


My dear friend, Terry, gave me a wonderful birthday gift. Yes, my birthday was six months ago. I just received it, because it was a phone session with Pat Longo. Pat is a gifted teacher and healer, who is booked six months out. She is perhaps most famous for being a mentor and healer for Theresa Caputo, the Long Island Medium.

Pat and I had an hour together on the phone. She diagnosed me as an empath. "Google 'Traits of an Empath'" she said. And so, I did. Yepperdo. I'm an empath.

"Did you suffer from anxiety as a child?"

"Do you walk into a room and immediately know what mood everyone is in?"

"Are you exhausted after being in a crowd?"

"Do you frequently have a sense of deja vu or synchronicities?"

"Do you dream lucidly and vividly?"

"Do you just know things?"

"Do you suffer from digestive troubles?"

"Have you ever had migraines?"

"Are you extremely affected by sounds, sights and smells?"

"Is it unbearable for you to watch violence or cruelty on TV? Do you feel as though it's happening to you?"

She suggested many strategies to help me both develop my own psychic abilities, as well as to ward off unwanted energies. "Do you know those big belts that professional wrestlers wear? I want you to visualize yourself putting one on each morning, right around your solar plexus, under the rib cage and above the navel."


She taught me an exercise called Ground and Surround, in which you visualize yourself in a bubble of pure white light. That's surround. Then you visualize white cords of light coming from your heels and tailbone, growing deep into the earth and wrapping around a tree at the very center. That's ground.

"Six seconds for the whole thing. Try it every single morning and all your physical ailments will go away."

She concluded the session by doing a long-distance healing with me. We were both silent, eyes closed, for just a few minutes. I got an intense sense of being whirled around on a merry-go-round at a park. I could see the colors spinning by and could feel the clockwise motion. I told her that when she was done. "That's exactly what I did. I very quickly did a healing that cleared everything from every part of your body. Clockwise."

So. All of you with all of your moods and energies, your sounds, your smells, your visual stimuli. You can't get to me. I've got my belt, my bubble and my cords.



Thursday, July 31, 2014

Normal

We are moving right along with attaining guardianship. I say "we" but mean "I." Only one person can be named guardian, and if/when I am no longer able to perform the duties, the whole long, arduous, expensive process begins all over again.

Before a child turns 18 a parent can name a guardian in their will, and subsequent guardians, should the need ever arise. For whatever reason, one cannot do that after the "child" is 18. I will be awarded guardianship of the person I've been taking care of 24/7 for 18 years, but cannot legally name my successor.

Anyway.

I dreaded the arrival of the processor, the person that would come at an appointed time and hand Wil a stack of papers and let him know he was being officially "served." That whole thing took less than 2 minutes and the woman could not have been any kinder. Nonetheless, the emotional toll was high and began months (years) ago in anticipation of all that it represented.

The next "ordeal" I fretted about was the court visitor. We were to expect someone to come to the house and "vet" us, for lack of a better word. Wil had to be there, I had to be there, and so I decided STM had to be there, too. Again, the nicest woman came at the appointed time. She was respectful, natural, kind, and only asked Wil a handful of questions. "I don't have any more questions for you, do you have any more for me?" she asked. He indicated no, and then she asked, "Is it OK if I ask your parents some more questions?" He then went upstairs and she quietly, graciously, asked us a few more questions. She wasn't in our house more than 25 minutes.

"Technically, I'm supposed to ask a whole bunch more questions, but I thought they'd confuse and upset him, and it's clear to me that guardianship is appropriate," she said. She is a psychologist who has done this for years. "They send us out on each and every case because every once and awhile there is a need to protect someone for whom guardianship is not appropriate."

We received word that her vetting was complete, she had obtained information from our primary care doctor, our behavioral/developmental pediatrician and a few others; all in full support of me being Wil's legal guardian.

It's a weird thing to feel like you "won," something that is so obvious, so necessary, so matter-of-fact. It's a weird thing to celebrate that your child is so disabled that everyone can see he is so disabled. It's a weird thing to be glad you "get" to keep doing what you've always been doing.

And yet, I have won.

And yet, I am celebrating.

And yet, I am glad.

There is a peace prevailing that has not been around for at least a full year. Now I am "this" close to obtaining guardianship. I have a stack of documents 8" high that I will take to my Social Security appointment on Tuesday. Included in the stack is a letter from Wil's behavioral/developmental pediatrician explaining her recommendation that I not take him to his own appointment. I have been filled with angst over that damn appointment for months, but now that it's five days away, I'm very calm.

It's so true that the fear of it, is way, way, way worse than the reality of it. Maybe it's just the way grief works, another layer is peeled back and you are exposed and vulnerable, and then you motor through until it's all swept into the cog of your normal. Not everyone's normal, but yours. Your different, but very much OK normal. Your normal that is normal if you stop comparing yourself, your child, your life to anyone and everyone else's. Your normal that is not going anywhere, so you might as well embrace it and get on with it. Your normal that is what it is: blessed.





Wednesday, July 23, 2014

Soooooo Good Looking

Just me, or do you remember the "Seinfeld" episode where Jerry suggests that instead of saying, "God bless you," when someone sneezes, you should say, "You're sooooo good looking!"?

Just in case you need a reminder:



I thought of that the other day when I had a little follow-up chat with Wil in the car. We were following up after I had a meeting with someone, and he wanted to know how the meeting had gone. "It went great. You know, Bill thinks you're it on a stick."

"Does he think I'm good looking?" he asked, dead pan.

"Well, he said a lot of nice things about you, but no, he didn't specifically mention that he thought you were good looking," I answered.

"I do have good looks," he said, "don't laugh."

I didn't laugh.

Not until he got out of the car.

Monday, July 21, 2014

What to Give the Kid Who Wants for Nothing

The invitation clearly stated: "No gifts, YOU are the gift, and we want to thank you." We meant that. Yet, many kindly, generous souls felt like bringing a gift to Wil's 18th birthday party, anyway.

When Grandma asked him what he'd like for his birthday he replied, "Dial hand soap. The foaming kind."

When his friend Cameron asked he said, "How about a couple bucks. Let's say $2.25."

When Kathleen asked he said, "I like when you give me dollars for the ice cream truck." She gives him one-per-year, so was thinking 18 this time. "I'm thinking... maybe 40?"

When my mom asked he said, "Fancy socks."

The guests got creative. The guests got inside his head. The guests know him well. Here's a sampling of some of the great gifts he received, and is already enjoying:

* Bi-Mart gift card
* 7-Eleven gift cards
* Frozen yogurt gift cards
*  Baskin Robbins gift cards
*  Scratch-It lottery ticket
* Fancy socks
* Soap
* Clothes he can wear to church
* Tie-dye shirts
* Dollar bills

One older couple from our church wrote in their card, "We'd like for you to select a movie and come over to our house to watch it with us." I thought that was super sweet and wonderful. He'll never sit for a full-length movie, but if they're up for endless repeats of "Sam and Cat," "Drake and Josh," or "iCarly," then he's all in.

But truly, the real gifts are the villagers themselves, those invested, those with eyes, ears and hearts open to watch out for him, care for him, help guide and direct him.

And to all of them and all of you, we bow our heads with deepest gratitude.


Thursday, July 17, 2014

It's All a Sham


So, remember me telling you that Don Wilson took off with the pillow shams while I was away? Remember STM saying there were only two people that could have taken them, Wil or Don Wilson? Well, that's not actually what happened. I decided the bed needed changing again, so I stripped it down to nothing. After taking off a set of pillow cases, I noticed something weird: there was still a set on. There were the shams. STM had not ever taken them off in the first place, he'd "stripped" the bed, washed, dried and put back on, placing the second set right on top of the dirty shams. "How is it possible one does not notice shams on a pillow?" you might be asking yourself? Well, I asked myself the very same question. The answer is one of the following:

A) He's a guy
B) He's virtually blind, even with glasses
C) He's performed this activity so few times in his life, he's still a beginner
D) All of the above

I'm not sure what the life lesson is in all this, but I think it's one of the following:

A) Just be grateful STM tried, and don't ask for perfection
B) If you want something done right, do it yourself
C) What you're looking for was never lost in the first place
D) Who even thought of the word "sham" and why did we think they were such a good idea?
E) All of the above

Lately, I've been driving myself 1000% (private joke) crazy analyzing myself to death. The effort to awaken is so so damn exhausting, well, I just want to go back to sleep.

I've been working with the what-you-seek-is-right-in-front-of-you idea. Could it be true that often we already have what we need and want, but what we don't have, is the ability to see it? Appreciate it? Get down on our knees and be grateful for having it? I believe I'm guilty of that. They say you'd give anything to have what you have.

Deep thoughts for the day:

A) What is a "sham" that I'm spending way too much time looking for?
B) What is not a sham, that I'm not even bringing into my deeper awareness?
C) What appears to be a sham, but is actually real?
D) What is real, but appears to be a sham?
E) Where can I get my hands on a good IPA?



Monday, July 14, 2014

Top 10 Ways to Throw a Stress-Free Party


10. Have it catered
9. Don't have it inside your house
8. Let the guest-of-honor be in charge of the guest list
7. Allow that there will be some "random" people, as a result
6. Believe there are no accidents
5. Don't freak when the day that was promised to be hot and dry, turns out wet, with thunderstorms
4. Believe that there are no accidents
3. When choosing your inner circle of friends, make sure that their love language is service - when they offer to help, let them
2. Have a beer and enjoy yourself
1. Believe there are no accidents, and the universe, and your village, always provides




Thursday, July 10, 2014

A "Little" Gathering

In my garage there are seven borrowed coolers, 10 borrowed tables, 21 borrowed white plastic chairs, and nine borrowed green ones. More of each are on their way.

In my hall are folding chairs, 180 large yellow paper plates and 180 small. 180 large orange napkins, and 180 small. 120 red Solo cups and 50 wine "glasses." I have forks, forks, and more forks. We've been to Costco and have enough chips to feed a small country. My fridge is stocked with 2-liter bottles of pop.

Sunday morning my brother and I will go buy cold beer and ice. Lots and lots of ice. Weather is forecasted to be 97 degrees.

I've got a friend bringing speakers, Woohoo is making a 2-hour-plus play list ("no country"). Balloons, flowers, banners are in the works. Otto's Sausage Kitchen will arrive at 11:30 and fire up the BBQ, potato and fruit salads will be put on ice. Wine will be opened.

It will be a party.

Several months ago, feeling dread every time I thought of Wil turning 18, I threw out the idea of a party. It grew. It continues to grow. I actually have no idea how many people will be here on Sunday, but 112 have RSVP'd yes, and I'm sure there are plenty that will just show up.

How can I feel anything but hopeful and encouraged, with a guest list like that? An entire village  has made the whole party come together easily and pleasurably.

Wil is turning 18, and there's simply nothing to do but party.

P.S. The shams are still missing. 

Tuesday, July 8, 2014

Catching Up

My family reunion, sans family, was great. Lots of this happened:



I did get some sudden and violent illness, that had me out for 36-hours. I have theories and they range from a virus, to a spiritual cleansing. There's no telling, but it wasn't fun, and yet there are worse things than being alone in a nice hotel when you're sick.



If you've always wanted to know what I look like after being sick, without a shower or makeup, now you know. Still, I love this picture because it's of me and my sister-in-law, Sonam.


We found the lily pad pond we'd remembered as children, but hadn't been able to find in years.

When I got home, STM had thoughtfully changed the sheets. I noticed that two of the pillowcases were missing. I thought they probably were still in the dryer and just hadn't made their way back to the bed. After looking around and not finding them in any likely place, I finally asked him where they were.

"I thought you knew," he answered.

"They were there when I left," I said.

"They weren't there when I stripped the bed. There are only two people that could have taken them, then, Wil or Don Wilson. Since Wil lacks the coordination to remove them (they are actually shams), then it's Don Wilson."

For those of you that have followed this blog, you know all about my 18-year-departed father, Don Wilson, that loves to take things from our home, bringing them back days, weeks, months or years later, putting them right back in the same place from where they disappeared.

I'll let you know when those shams return, but I may have to break down and buy new ones before he does. The bed looks weird, and we can't have that.

I hope you all had equally wonderful and mysterious 4th of July weekends.

Monday, June 30, 2014

Am I the Only One?

Am I the only one that hates to waste cups and fill up the landfill needlessly?

Am I the only one that keeps re-useable Starbucks cups in her car, so I can purchase, guilt-free, both hot and cold drinks at my convenience?

Am the the only one that especially hates to drink beer from a can, and makes a point to buy only bottles (better for the environment, too), but occasionally breaks the rule for this, because it is just so damn good?

Am I the only one that drove to her favorite place on Earth, Sisters, Oregon, to attend a family reunion, but did not actually bring, oh, her family?

Am I the only one that was so happy she brought the yummy beer and the re-usable Starbucks cup, so she could enjoy this:


While viewing this?


Am I the only one excited to go to WUG where I will see almost all of these people, along the same lazy river, only 40+ years later?


Friday, June 27, 2014

Angels Among Us

Part of my blog inertia is due to the fact that in a little over two weeks, Wil will turn 18. I have been in a huge funk over this for quite some time, fear and dread dating back to 2012, at least. I don't want to apply for SSI, Medicaid, or brokerage services. I don't want to hire an attorney and basically sue Wil for guardianship, so that the day after he's 18, I will do the exact same thing as I've done the last 18 years, which is to say, pretty much everything.

"The reason guardianship is such a big deal," our attorney told us, to the tune of $400/hour, "is because people have abused it. The laws are set up to protect people. Second only to being incarcerated, guardianship strips an individual of his/her civil liberties."

I'm all for protecting the most vulnerable population. I'm all for civil liberties. I'm all for everything I'm supposed to be all for, but key-rist, arranging to have your "adult" child served papers, being vetted to prove you are not out for their "money," paying through the nose and filling out reams of paper, is just not my idea of a good time.

I could go on and on about the bureaucracy of the government, the endless red tape and tail-chasing, but you probably already know all you need to know about that. What I will tell you about, instead, is about the angels among us.

I called to schedule an 18-year well-check with Wil's doctor. I was greeted on the phone by such a competent and kind woman, whom arranged to speak to Wil to get his verbal OK, that I could speak in his behalf until the guardianship paperwork came through. She was sensitive. She was efficient. It was, dare I say, easy.

Fueled by the success of that phone call, I called Aging and Disabilities Services to have a couple questions answered. Got voicemail, left a message, did not expect to hear back. Lo and behold, Michelle called back, was gracious, full of helpful information, then later called me back again because she thought of something she forgot to tell me, that might be helpful. It was.

Feeling like I was on a roll, I pushed it further. I called Social Security to get an appointment. Yes, I was on hold for a full hour, and I heard the automated message no fewer than 60 times, but I had a cold beer and several days' worth of Facebook to catch up on, so all was not lost. Once a live person came on, she, too, was amazingly knowledgeable and helpful. Extremely.

The next day, feeling like we couldn't lose, I took Wil into the bank to do some necessary things prior to him turning 18. He was cooperative, and the teller was amazing. Turns out we needed to fill out quite a bit of paperwork. "Why don't you go across the street and get frozen yogurt. I'll fill it out for you." We did just that. We sat in the sun and enjoyed a lovely treat, and when we went back, the paperwork was complete.

There is no getting around the brutal maze of a disabled child becoming a disabled adult, but there is a way through, and that is with the help of many, many angels, both seen and unseen. And to all of you out there praying for us, thank you, those prayers are felt and much appreciated.

Love.


Wednesday, June 25, 2014

Hope for a Sea Change


I was never, ever, not under any circumstances, going to buy a Kindle, or any other e-reader. Never. Well, let me tell you, when my friend, Elizabeth Aquino published her memoir, Hope for a Sea Change, I started singing a different tune. Sure, "we" have an iPad, but "we" aren't very good about sharing it, as in, I can not so much as glance its way without Wil freaking out. Sure, I have an iPhone, but you name me one over-50-year-old pair of eyes that can, and will, read a whole book on a phone! So, I put it out to the Universe that I was ready to buy a Kindle, and wouldn't you know it, in less than a day I had my hands on a super great, gently used one, for a song. It was meant to be.

I devoured Elizabeth's gorgeous book in two "sits." That's quick for me, and you need to take into account that my already slow reading was slowed even further, because Elizabeth's writing is so beautiful, you don't want to rush over a single syllable.

Elizabeth's blog, a moon, worn as if it had been a shell, is one I've followed for years. This woman does NOT experience blog inertia the way I do from time-to-time, she is a prolific writer, and I've loved being a fly on her wall as she raises her three children in Los Angeles. I love reading about Henry and Oliver, The Brothers. I love reading about the tremendous cakes she bakes (she's a former pastry chef). I love reading about what she's reading about. But most of all, I love reading about her now 19-year-old daughter, Sophie, whom suffers from a complex seizure disorder. Hope for a Sea Change is a memoir of Elizabeth's journey through diagnosis, understanding, and a new understanding of healing.


Elizabeth has educated, uneducated and re-educated me about the benefits of medical marijuana. I went from thinking I knew what it was and wasn't, learning I knew nothing at all, to learning a modicum of the profound benefits of high CBD, low THC marijuana for patients with epilepsy. I learned all about the Realm of Caring, and Charlotte's Web.
(Early November 2013/January 2014)

The memoir will make you shake your head at What People Say. It will make you ache for the torture Sophie and her family have endured. And it will make you smile deep within yourself as you read, "... it would fundamentally change the way I looked at Sophie's disability, at the integrity of human beings, and at what healing and curing really mean."

Elizabeth has done much through the years to reshape what I think about things politically, poetically and philosophically. Her memoir will most definitely affirm the integrity of all human beings.


Available on SheBooks and Amazon for e-readers (only $2.99).

Thursday, June 12, 2014

Unsubtle

Dreamt last night that Wil was upstairs sleeping, I think he was a baby. Candace came by and was talking so loudly, I was worried she would wake up Wil (when he was a baby, there was no worse sin).   Now, in reality, there isn't a more thoughtful and considerate person than Candace, but in the dream, she would NOT be quieted. Her voice got louder and louder until I finally swore at her, before stomping upstairs, abandoning her in my kitchen.

I woke up from the dream so discombobulated. The dream felt so real. I couldn't shake the fact that Candace would not be quieted.

Let's part-of-me this thing, shall we?

Part of me was sleeping.

Part of me was a baby.

Part of me went "upstairs" (retreated).

Part of me abandoned part of me.

Part of me would not be quieted.

Part of me just got louder and louder.

Part of me did not wake up.

Part of me got angry.

Part of me killed the messenger, rather than listening for the message.

Tuesday, June 10, 2014

Makes for a Very Long Day



Haven't been blogging for a number of reasons. I feel redundant, tired, discouraged, anything but inspirational. I could drag you all through that with me, but what would be the point? That's the other thing I feel - a sense of futility.

"You're in the dessert," my friend Candace said to me the other day. I had not thought about it in terms of that, but knew the minute she said it, that she was right. There is a sense of being dried up emotionally, creatively, energetically, intuitively, relationally, imaginatively, in all ways. Dried up.

I'm not feeling like the person I know myself to be. I know myself to be happy for others' successes. Excited about the future. Optimistic. I know myself to be resilient, steadfast, buoyant, even. I am none of those things at this time.

Went back to Wil's favorite "grocery store" yesterday morning, the Food Mart attached to the gas station on the way to school. His favorite gal was there, the one that said he makes her day whenever he comes in. I could tell he made her day this time, too, his ADHD enthusiasm over-flowing all over the store. However, this time she looked at me, smiled and said, "I would imagine this makes for a very long day."

It's been a long day.

It's been a long nearly-18 years.

It's been a long 51 years. My "story" of accommodating for special-needs goes back way further than Wil.

Candace says something new and beautiful will come from this time of being in the desert, this time of "rest," renewal, re-examination.

I know that to be true.

Sunday, May 11, 2014

Happy Any Other Day

It's not even 8:30 in the morning, and so far this "Mother's Day" I got up with the dog at 5:30 to feed and pee her. Tried to use the bathroom. Couldn't. Found the plunger. Plunged. Cleaned up subsequent sewage mess. Fed the boy. Wiped down the kitchen. Swept the floor. Started the dishwasher. Went to the grocery store. Walked the dog and picked up after her twice. Took out the garbage. Sorted the recycling. Emptied the yard debris/compost. Replaced the inkjet so I could print off a picture my MIL wants to see, but doesn't want to look at on my phone. Got the balloons, cards and gifts all ready to take over to celebrate everyone else today: two birthdays and "Mother's Day."

Happy Any Other Day to all of you living similar realities.


Monday, May 5, 2014

PDD-NOS

I went to an event recently where a speaker mentioned that more men than women make up the two "ends" of intelligence. "There are more males that are geniuses, and more that are..." and then she made a face - a stereotypical look I am still too shaken up to even describe here on this blog. This room full of over 50 intelligent, liberal-minded, "progressives," most of whom are moms, LAUGHED.

I have not been able to shake my subsequent depression. If we cannot get through to this population of people, in 2014, that it is not OK to disparage or slur ANY population of humans, then it feels hopeless that we'll ever spread the word.

I came home, fit to be tied, and tried to relax with a beer and a back episode of "Grey's Anatomy." Not once, but twice, the term "village idiot" was used. Naturally, there was no greater insult.

Really?

There is a pervasive derogatory disregard not otherwise specified going on in this country when it comes to those with an intellectual disability. Even in the special-needs world. "My kid has special needs, BUT he's really smart."

Must I fight to win the respect for my son,  even in his own world?

I'm glad your kid is smart. We need smart kids. What we don't need is a class system within a class system that separates, segregates and denigrates.

We don't need the media to go on unchallenged in their word choices and perpetuation of insulting terms.

What we don't need is people to laugh at things that aren't funny.

What we don't need is the status quo - unexamined attitudes and beliefs that serve no one, and are very harmful.

What we need is true acceptance and valuation of all.

What we need is mindfulness of our own attitudes.

What we need is love.


Wednesday, April 30, 2014

Orange

For the first 50 years of my like, I disliked the color orange. Might go so far as to say I hated it. Truth be told, I almost did not go to Oregon State because orange and black were the colors. I loved yellow and everything "down" from there on the rainbow, but was no fan of red, and like I said, didn't care for orange, not one little bit.

A funny thing happened when we started redecorating our living room.

Orange.

Orange crept in and I let it. Then I went in search of it. Now, orange is the major accent color in my living room, and I absolutely love it.




I've been doing some chakra work - learning about the chakras, the different parts of the body they correlate to, how to induce healing, clearing, energy, etc.  I learned that orange is associated with the second chakra, the sacral chakra, associated with creativity, amongst other things. I've also been reading about physical ailments associated with the different chakras, and let's just say, my second chakra could use some attention.

Do you all know about Richard Rohr? You should. I get his daily e-mails, and they are fantastic, very thought-provoking and helpful in every way. He talks a lot about the second half of life and how different our thought processes are (ideally). I will say this about being over 50, what you thought served you well during the first half of life, is called into question.

Orange is just one visual reminder to me that change is taking place - different perspectives, appreciations, needs and priorities are coming into being.

Tuesday, April 29, 2014

Blessed

Wil woke up extra "janked" this morning, off-the-charts. Went to bed at 7:30 last night and had seven granola bars for breakfast, on top of his usual breakfast (two pieces of garlic toast and six pieces of bacon). Growth spurt? Spring fever? Your guess is as good as mine.

"Care, we need to go to Food Mart on the way to school, there are things I need." For those of you unfamiliar with Food Mart, it is your basic convenience store attached to a gas station. There is nothing anyone needs at Food Mart, especially at 7:15 AM.

So, of course we went to Food Mart.

We walked in and our favorite gal (he's pulled this before) was at the register. She lit up when she say us. As he galavanted around the store loudly proclaiming, "I LOVE SHOPPING!" she looked at me and said, "He's a pistol!'

"Oh, for sure," I said.

The man that pumps the gas (one cannot pump one's own gas in Oregon), was hanging out in the store waiting for a customer. He looked at me and said, "You should buy him a Red Bull, I see that he needs help waking up!"

"Yea," I said with a forced laugh, "well, there's a name for this!"

As Wil made his way to the counter with all his necessities, Chex Mix and a University of Oregon water bottle for school and Laffy Taffy for when he gets home, the gal said to me, "He makes my day whenever he comes in."

Wil shoved his stuff into the collapsible bag I had in my purse, and he smiled at the gal and said, "Now, you have a blessed day!"

"You, too!" she said back.

"Oh, ALL my days are blessed!" he answered.

Amen.

Monday, April 21, 2014

Hi, From Devohn


Happy Easter Monday, everyone! When we woke up on Easter morning, this was hanging between two trees in front of our house. Those of you that have been around for awhile (THANK YOU), know all about Wil's obsession with Devohn, the Easter Bunny. Someone asked me yesterday how Devohn got his name.

Um.

How do any of these things get started? Your guess is as good as mine.

Now, at nearly 18, Wil is every bit as excited for Devohn to come and leave him candy (and quarters for the vending machines), as he was as a little boy. Maybe more so. "Care, some people don't believe in the Easter Bunny," he told me a couple weeks ago. The look on his face said, "Those poor schmucks."

Now, with the addition of not one, but two masses to attend, he was pressed for time to do an egg hunt before prepping for church, but don't you worry, he got it in. What he didn't do for the first time, however, was he didn't crack open each and every egg as he found it, scattering the contents all over the house for Flicka to go for, and causing me to have a panic attack. He collected all the eggs in a bag and put the bag in the pantry to be dealt with after church.

Not a lot was made of Devohn hanging in front of our house, until after he got home and was ready to resume the festivities. "Devohn is cute hanging there," he said. Several times throughout the day he looked out the window and said, "Devohn is still there!"

We have our sneaking suspicion who placed Devohn there for us to enjoy. Someone with a truck. Someone with a ladder. Someone with a helper. Someone that loves Wil. Someone that knows that Easter is a time of new life, a time of new hope, and a time of old faith in the things that can't be proven, but we know exist.

Like the Easter Bunny.


Friday, April 18, 2014

Good Friday

(Photo of our fridge calendar, which Wil has amended)


My post is up at Hopeful Parents. See you over there!

Happy Easter!

Saturday, April 12, 2014

Blog Tour

I had the pleasure of meeting young author, Rena Marthaler and her mother recently. Rena is the author of Magic: The Crest.


How impressed are you that a fourth grader has written and published a book? I know. She tagged me in a blog tour, you can read all about it here. Because I know all of you are busy and most of you have been tagged in blog tours already, I am going to make this voluntary. If any of you would like to participate, please do! Thank you!

Below are my responses to Rena's questions:

WHAT AM I WORKING ON? Since my book came out in early 2013, I have been having a lot of fun promoting it in various ways. I've done a lot of book groups, a bookstore event, a couple fund-raisers, and I have a reading at a library coming up. I was asked to join a group of retired teachers that do philanthropic work, and that was an honor. I am looking forward to doing an event with Albertina Kerr, an organization devoted to children's mental and developmental health.

HOW DOES MY WORK DIFFER FROM OTHERS OF ITS GENRE? Good question! There are a lot of memoirs out there about mothers, in particular, and their autistic children. With the incredible rate at which autism is being diagnosed, and the huge impact it has on families, it's not surprising there are a million memoirs out there on the subject. How my book is different, is that it focuses on my own spiritual evolution through the process, my own "end" to suffering, if you will, arriving at a place of acceptance and even gratitude for the life I have - so different from the one I planned.

WHY DO I WRITE WHAT I DO? I believe we are all here to teach, that being said, some of us are more effective teachers than others. I believe my son came to teach us how to live without ego, without  any of the trappings we can so easily get caught up in. He came to teach, by example, a pure and powerful connection to the Divine. Free from all dogma, all fear, all baggage, if you will, he demonstrates a true spiritual connection that is inspirational.

HOW DOES MY WRITING PROCESS WORK? Hmmm... that's a tough one. I tend to write in fits and spurts. There are times (wonderful times) when what I write seems to be downloaded - I might be doing some tedious household chore, and all of a sudden a complete blog post or chapter of my book just "comes" to me. Other times I fight and fight to keep my butt in the chair and pound it out. I'm not disciplined enough to have a sacred writing time each day that I keep free from other obligations, although when I was working on my book, I would carve out particular hours/days/weekends to go somewhere and work on a particular part of the book.

I always admire writers that have a routine and firm boundaries around it. I am many things besides a writer, and for me, the writing has to fit in around all of those other responsibilities.

If you are a writer and would like to take part in this tour, we'd appreciate it! Courtney Sheinmel? Jenny Rough? Kario?


Wednesday, April 9, 2014

Stations


I came home from running around today and there on my doorstep were two bouquets of my all-time favorite flower, the tulip. And these particular colors/varieties are my favorite among favorites. There was a small card with them. Inside it said, "You spread joy every day." That's all it said. No name. Didn't recognize the handwriting.

Saw on Facebook that other friends were thanking the anonymous person that had left flowers on their doorstop today.

The Tulip Fairy. I love it and everything about it. 

I was reading something recently about how we can personalize the Stations of the Cross, making it a "today" event. Praying for 14 minorities that suffer. Praying for 14 places of war. Visiting 14 rooms in a nursing home. Writing 14 notes to people that are sad, afraid, hurt or alone.


Those ideas are all great, and I am all for them. That being said, there is nothing wrong with spreading the love to the regular folk, too. Finding those tulips on my front porch raised my own game and made me want to pay it forward.

Good is good and good begets good.

Be good.

Do good.

Amen.

Wednesday, April 2, 2014

Autism Awareness Day


I am always torn each year when this date rolls around. Awareness? Really? With 1 in 68 children, 1 in 42 boys being diagnosed with autism, is there really a lack of awareness that it exists? More a lack of awareness of the cause(s), and what the hell to do about it. I dare say, everyone is aware of autism. If you aren't, you will be. 30% increase in the last two years. Do the math.




Tuesday, April 1, 2014

The Vocation Cross


It is the tradition of our parish, to continually pray for those considering a religious vocation. Individuals  or families sign up to receive the Vocation Cross, and on the sign-up sheet they indicate which of the three weekend Masses they will be attending. At the end of that Mass, the priest says something to the effect of, "This week the Vocation Cross will be in the home of..." and that individual or family walks up to receive it.

After we'd been attending this parish for awhile, Wil caught on and wanted in on the game. He marched himself over to the sign-up sheet at the back of the church, and in huge bold letters covering two or three lines, wrote, "WILSON LINK." We came home, put that date on our family calendar and he mentioned his excitement to receive it, no fewer than two million times.

The first time he received it, he was nearly to the front of the church ready and waiting, before the priest had even gotten the first words out of his mouth. We brought the Cross home, prayed each and every day, and reluctantly returned the Cross at the end of the week, so that some other lucky soul could take their turn.

Sunday, it was our turn to receive it again. As luck would have it, my brother, sister-in-law and nephew were in town for Spring Break. Wil was so excited that his "brother," or cho-cho (Tibetan for brother), would be there to witness him receive the Vocation Cross.

As we entered the church the priest said to me, "Wil is receiving the Vocation Cross today."

"Oh, don't I know it," I said.

As soon as Mass was about over and the presentation was about to begin, Wil was out of his seat and halfway up the aisle. He turned to our section of the church and said, "I'll be back, guys." We all smiled and watched him nearly run to meet the priest halfway.

The priest said, "This week the Vocation Cross goes to, hmmm...., I don't know, oh, yes, it's the one, the only, the famous, Wil! I'm so proud of Wil. He has become my little helper, keeping me on time. Wil comes to both morning Masses because he just loves being part of this community so much, it's just tremendous."

Then, the church broke into spontaneous applause.

Wil has found that place where the needs of the world and his talents cross.

Thursday, March 27, 2014

Listening

This is a multiple-choice test. Pick the best response to these scenarios:

1) Two women are having lunch. One says to the other, "I feel like I'm in a whole different world than my friends. They're talking about the thread count of their sheets and the best place to buy quality towels. I get my sheets and towels on sale at Fred Meyer!"

A) Fred Meyer? I get my sheets and towels at Bi-Mart!

B) At least you get new sheets and towels, you should see MINE!

C) Tell me more about feeling like you're in a whole different world.



2) Two friends are having coffee. One says to the other, "I'm really worried about my son. He's not acting like himself. He's angry, sullen, I wonder if he's using drugs."

A) That reminds me of my friend whose son was on drugs and he....

B) At least your son is in college. My son is...

C) Tell me more about what's going on.



3) Two friends are on the phone. One says to the other, "I'm losing it. I can't remember anything, I'm not sleeping well, my heart is racing all the time, I feel like I can't even breathe."

A) Me, too! Let me tell you all about the symptoms I'm having, they're much worse than yours!

B) At least you're rich.

C) Tell me more.


How'd you do?

Wednesday, March 26, 2014

The Christmas Card

I have a dear friend named Laurie. Actually, I have more than one dear friend named Laurie, so, for this post, let's call her Laurie G. I love Laurie G. and everything about Laurie G. Laurie G. is pee-your-pants-funny, and not enough can be made of someone that makes you pee your pants laughing. Laurie G. is a homemaker to the nth degree, she puts me to shame in all regards.

She, however, does not, and never has, sent out Christmas cards.

I know this about her, and in fact, admire it. I recently dreamed that she had me over to her home, and she pulled me into the hall to show me 135 beautifully "wrapped" Christmas cards. Each and every card was inserted into one of those drawstring fabric bag thingies like this:


Though she never said it, I knew that not one of the 135 beautifully bagged cards, was for me. I wasn't asking to be named in her will, but out of 135 people, I didn't make the list? I was hurt. I was crushed, actually.

I woke up the next morning and e-mailed Laurie G., told her about the dream, and that I couldn't stop being pissed and hurt by her slight. She laughed (of course) and wanted me to probe deeper into the dream. Of course, the dream has nothing to do with Laurie G., but parts of myself that I slight, that I do not "gift."

I've let her know in the weeks following the dream, that I'm still a little pissed. Really, 135 people and I'm not ONE?

Last night I saw Laurie G. and she handed me this:


I about peed my pants, and then I opened it and found this:

(It says: Every day is Christmas when I'm with you!
All love,
Laurie)

I'm feeling much better.


Tuesday, March 25, 2014

Dragging


For some reason, I'd never heard this Zen proverb until just a few days ago. Now, naturally, I'm obsessed with it. That kind of defeats the whole purpose, as obsession comes from attachment, and to let go and not be dragged, one must free oneself from attachment.

One thing I spend a lot of time doing, but not a lot of time writing about, is transporting my mother-in-law to and from the doctor. I sit in with her during her appointments, and for the most part, keep track of what's what.

We go to the same clinic over and over and we're not the only ones. Three floors of waiting rooms are filled with mostly the geriatric crowd. What seems to be happening, is they are spending the time they have left on this planet, in search of a cure that will stop them from dying.

Eckhart Tolle says, "The secret to life is to die before you die." Just another way of saying we, eventually, are forced to let go, to "die," and the sooner the better. We all know the feeling, the anxiety, the futility of holding on - of being "dragged," because the fear of letting go is so powerful.

Terry Whitaker, The Truth Teller, and I, have been talking a lot about how to go about that - how to die before you die. We think it starts with self-awareness. I believe that unless we have someone(s) that serve as "grit" in our life, to brush up against us, challenge us, really refine our own understandings of ourselves, then it's very difficult to die before you die. This, of course, is no fun at all, and would explain why most of us avoid it all costs.

Let go.

Or, be dragged.








Friday, March 14, 2014

Eventiently

As I said, I've been laboring over 1% problems such as pillow choices, trying to bring some new color and life into my house. I believe that everything has energy/qi. The qi in my house needed to move. We are a couple of over-fifty-somethings and a couple of late teenagers. Our house needed to reflect a different era of our life.

Down went all the school-age art.

Down went all the family portraits.

Down went all the pastel colors.

Out went to tired, dirty, cheap and wrong-to-begin-with, carpet.

Slowly, slowly, and I mean slowly, we've been re-shaping it. The paint took months to choose, the carpet, even longer. This whole process has moved much slower than I would prefer, yet at the same time, I have felt it's moved along at just the right pace. I am one to act in haste, repent at leisure. One to measure once, cut twice. Hang a picture just eyeballing it, then have three or four holes behind the picture because I wouldn't take 2 minutes to measure.

A word Wil uses all the time, and it makes me smile each time, is "eventiently." He means eventually, but he never pronounces it that way. "I'll do it, eventiently," he'll say. Today he told me that his friend, Lauren, was going to bring him an ice water from Starbucks when she went to get herself a white chocolate mocha. "But you know Lauren," he said, "she might forget. Eventiently she'll remember."

"Eventiently" has been the theme around here.

One thing that did not take any time at all to decide upon, was the plan to commission our friend, Candace, to do a painting for us. Candace has the perfect pairing of degrees: art and theology. Her art is infused with prayer, with love, and indeed, miracles. Things "show up" when she paints - surprising even herself. We knew that whatever she ended up with, would be just perfect for us, and it is.



My photography "skills" don't do this work-of-art justice. You probably can't see the faint Hail Mary written in there, nor the Buddhist temple, nor the Buddha, the Lady of Guadalupe, a Chinese symbol, the Holy Family, the blue angel with white wings, the glowing Mary and more. Believe me, they are there. 

Eventiently, more will be revealed.

Eventiently, more is always revealed.

Thursday, March 13, 2014

Chop that Wood, Carry Water

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I've written, or tried to write, rather, several blog posts lately, then deleted them. Just not coming together. I'm better suited to go to Cost Plus World Market on a frequent basis, and spend my energies debating on pillows for the living room.

I'm in a place where I am very content chopping wood and carrying water. The mundane, repetitive, "brainless" tasks of the day, fill me up. It's nice spending hours in quiet with time to let my mind wander, better yet, be still.

My Lenten goal to give up worrying has not been 100% successful, but if I worry even 20% less than I had been, then I will consider that a step in the right direction. I read recently (sorry, can't remember where) that worry is an act of defiance. It's a loss of faith.

Did you know that a recent study shows 21% of all Americans believe faith is unimportant? I find that statistic shocking and depressing. I understand all the valid reasons to be fed up with organized religion, but to have nothing at all to believe in? No faith, and thus, in my opinion, no hope? Wow.

I just learned WIL OF GOD is being considered for an award given to a book that either illuminates, progresses, or redirects thought. I am deeply honored. It's funny, because just as I was deleting yet another post because I didn't have the oomph to hit the same points I feel like I make all the time,  notification of my book's consideration, popped in my inbox. Say it with me, there are no accidents.

So, I guess if I can in any way illuminate, progress, or redirect your thoughts on faith, then I will get my ass out of Cost Plus and back in the writing chair.


Tuesday, March 4, 2014

Spread the Word to End the WORDS


Years and years ago when we were in the brainstorming and dreaming big phase of creating a program for Wil when he entered high school, we said we'd love to see the day he could go on the same 3-day spiritual retreat Woohoo had so greatly benefited from. It seemed like a long shot. At that point he'd never slept away from home except for Grandma's. What, when and where would he eat? When and where would he sleep? When and where would he ___________, _____________, and ____________? It was mind boggling to think about, yet, we continued to hold that up as a dream to one day realize.

Fast forward to this year. Wil is in a program that is in its third year of operation. The kids he started out with are now juniors - the year the school typically takes kids on the 3-day retreat. The decision was made to take all of the kids in his program on the same retreat, rather than splitting them up throughout the year. It made the most sense to the program to have them all be gone at the same time, and the staff could be made more available to assist if they were all together.

Word caught on that this group would be attending, and spaces quickly filled amongst the "typicals." They knew it would be a unique, once-in-a-lifetime experience. Staff and student helpers were enlisted. I had e-mail exchanges, one-on-one meetings and phone calls for months prior to the retreat. All the what-and-whens were addressed, down to the very last detail. I couldn't have dreamed of better "customer service." I could and would go on and on, but the details of the retreat are to be kept secret and sacred, as to make the experience special for each new group attending. I will leave you with the the simple fact that if I'd made a list of everything he wanted and needed, then padded the list times 10, it wouldn't have come close to how perfect blessed it was.

One of the very best things about the retreat, was the under-statement of the fact that this was the first one of its kind. Before, during and after, it was not a "thing." 60 juniors went on a retreat, and several of them just happened to have learning differences. It gave me great hope that there is a dawning of a new day. My dream is that one day it will be as politically incorrect and unimaginable to point out which percent of a group is "special," as it is to point out which percent is gay, of any particular race, or any other marginalizing distinction.

Tomorrow is the national Spread-the-Word-to-End-the-Word Day. Let's grab hands, sing "Kumbaya," and pledge to end all words that are disparaging, hurtful, hateful, and create division.


Monday, March 3, 2014

All Shall Be Well


“All shall be well, and all manner of thing shall be well.”
Julian of Norwich (ca. 1342–ca. 1416), in her Showings.
I've been giving a lot of thought and time during prayer, on what I want to do during this upcoming Lenten season. At Mass on Sunday I was seated next to a friend, someone I've known a long time, but not as well as I'd like. The homily was based on the readings of the Gospel, my favorite verse being Matthew 6:34: "So do not worry about tomorrow: tomorrow will take care of itself. Each day has enough trouble of its own."When we were getting ready to leave the church I turned to my friend and asked, "So, what are you thinking about giving up for Lent?" She answered, "Well, after that, I'm thinking I should give up worry!""That's exactly what I was thinking," I said. We made a pact right then and there to do it together, to turn it all over for 40 days, agreeing that if we missed it, we could pick it right back up after Easter."Don't borrow trouble" is a favorite expression of mine and one I'm quick to offer others, when so clearly that is exactly what they're doing. It's almost as though we believe we are jinxing ourselves without expression of every possible way things could go sideways. And while I believe in the futility of "borrowing trouble," I'm prone to do it myself, mostly out of habit.They say it takes 21 days to break a habit. I've got 40+. I not only have enough time to break a habit, I've got time to spare.Breaking from the habit of worry is really a practice of mindfulness, being in the moment, and only in the moment, actively and attentively. When worry begins to creep in, I am going to chant the mantra, "All shall be well."I cannot imagine that I'll be excited to wake up Easter morning and commence with a full day of worrying, to make up for lost time.All shall be well.

Tuesday, February 25, 2014

Cam Lasley


I would like to take this opportunity to introduce you to an amazing man, Cam Lasley. He's a hip hop artist, who has a difference - not a disability. "Isn't everyone else different too?" he asks.

Aren't we?

You'll want to read the interview with him in TRUE, The Missing Link in Hip Hop and Fashion.