Thursday, July 31, 2014


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.


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.

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