The Swimming Story

Some of you will remember that Rojo finally got into a body of water two years ago in Sisters, and that body of water was the "baby pool." He has not been in any body of water since. He has a good friend, J., with a pool at his house. This friend's pool was made for the friend. No deep end. Warm water. Just a great place to play, complete with a basketball hoop in the pool. J. has invited Rojo to swim no fewer than two thousand times over the years. No interest whatsoever.

We took J. to yogurt early last week, and when we dropped him off, his mother again invited Rojo to come swim sometime. She emphasized he could touch at all points in the pool, and that the water was warm, and nobody would splash him. He bit. Quick as you can say had-her-in-his-contact-list, he was texting poor J.'s mother to arrange the specifics.

It was "decided" (forced upon them) that we would come at 12:30 on Saturday. I mean to tell you that my boy walked down the steps into the pool like he'd done it a million times, and proceeded to spend the next TWO HOURS in total bliss. Could not get him out.

So, when he told camp that what would calm him down was "swimming," it was so ironic. 48-hours earlier swimming would have been a stressor, then suddenly it was a calming force.

Predictably unpredictable, that's the name of the game around here. I can't wait to see what he decides to love next.

A Sign

Just got home from taking Rojo to camp. Sleep away camp. Five full nights camp. Go ahead, take a moment and let that soak in.

We've been psyching him up for a full year, and not once has he said, "You know, I don't want to go to camp," or "I'm scared to go to camp," or "Why do I have to go to camp?" Today he was SO extra super duper hyper it was unbelievable. He kept talking about his counselor, "Steve Bennett," a name he dubbed him for no apparent reason. Because I thought the counselors slept in the room with the kids, I assumed the boys would have boys and the girls would have girls. He's been talking about his boy counselor that he's going to have for months.

So, of course, he got a girl. Turns out his cabin mates are all boys, but the counselors sleep OUTSIDE of the cabins, to make sure kids don't wake up and sleep walk/wander off/etc. Anyway, the counselor is his 1:1 for the whole time, and she could not be any sweeter. Ruby. Don't you love that name? Ruby is 23, has been married 5 years, has a 1-and-a-half-year-old and is pregnant with number two. She works and goes to college and this is something she's doing (just for 2 weeks) for college. She wants to work with people with disabilities when she graduates. Ruby was sent straight from heaven.

We have been talking about this camp and how it's for kids with disabilities - all kinds - and how everyone will have a counselor to themselves, and so will he. Still, I don't think he connects the dots and realizes he has a disability. They talk openly in his school about it, we talk openly with him and around him about it, yet still, I just don't think he thinks he does. His eyes were huge when we got there and in the parking lot parents were pulling out the wheel chairs. (So humbling.) There were kids with disabilities that were obvious and some that were not. Mostly boys, I think I only saw a couple of girls. As STM said when we left, "We have so much in common with all the parents there, yet no time to try to connect with them, because we're all busy doing what we have in common."

Most of the kids are repeat campers, I think Rojo might be one of the few that is there for the very first time, and perhaps the only one really away from home for the first time (besides grandparents' houses and his one night at Outdoor School three years ago, and a night at the liz's). When we went through the line of the Behaviorist, she noted that this was an awfully big deal, and asked what would comfort him if he got anxious. He said, "swimming," (that's a whole post for another time right there). Since swimming isn't really reasonable I suggested time with Elmo. Ruby said, "Oh, my son loves Elmo!" I forgive you for pointing out that your BABY loves Elmo, because I know you are still learning, Ruby, and you mean well, and you want my son to be happy, safe and comfortable, and that is all that really matters. But still.

We finished the long check-in process, answered questions the Speech Path had (he's giving Rojo a printed schedule each day so he will know what's going on), and the nurse, we unloaded all his stuff, found him a bunk, and said our goodbyes. He was being brave when we left but I could tell he was processing a lot.

I was processing more. STM and I drove straight to the closest pub for a beer and a burger before climbing back down the mountain. After checking my cell phone for the umpteenth time to make sure it would both vibrate and ring should they call, I looked up and there was a sign in someone's yard that simply said, "God provides."

Amen.

Life-Giving

Had a really short, but great conversation with a (much younger) friend of mine yesterday. She mentioned that she wanted to point something out to her husband, but that it would not be "life-giving," so she didn't. Quickly forgot the term but remembered the gist and couldn't shake it from my mind, so this morning I texted her to ask her what the term was, so I could burn it in my memory.

She said that in Engagement Encounter they learned many things, but two that have been most helpful is that everything you do/say in a marriage should be life-giving, and you should hold hands when having a disagreement. She said it's very hard to stay angry when you're holding hands. I feel that I'd be  up to the challenge, personally, but I do like the life-giving part.

Today STM and I hung the art that I picked up from being framed two-and-a-half weeks ago. I no longer have the brain capacity to calculate where to nail a hole if I want two paintings to hang side-by-side, and still remain exactly centered over the couch. WAY over my head. Side note: in our basement I once upon a time managed to hang SIX pieces of art, perfectly level and with equal distances between them, AND centered on a wall. I marvel at my former self every time I walk by them. Alas, that was many ice-cream-truck-talking-about summers ago.

Turns out STM had a bit of a struggle with it, too. You don't even want to know how many tries it took us to get it right, and how many holes are behind the paintings. We at one point really over shot our capacities by trying to find studs and nailing two holes per painting, and have it all match up. Not possible by these humans.

I will say this about that - throughout the challenge we were able to stay "life-giving" with one another. Who cares that we have one extra hook next to the paintings? Who needs perfection? Marriage is not perfect. Our house certainly isn't perfect, but we can have the goal of perfect love.

Say it With Me...

So, I told you how on Rojo's birthday we got the letter in the mail saying he qualified for disability services. What with it being his birthday and all, and really not in the mood to deal with it just then, I skimmed the letter, saw the part where he doesn't need to be re-evaluated again until age 22, and then put it away. I didn't read down at the bottom to see who the case manager was that was assigned to him.

Tuesday night I was out with Woohoo meeting her new roommate, and a call came in. "Restricted Number." I do not answer those. No sir, I do not. Tell me who you are if you want me to talk to you (and even then I probably wouldn't answer your call, what with the phone phobia and all). Got home and there was a message on my home voice mail. Finally listened to my cell message, and they were the same message - our case worker was calling and wanted to set up a time to come meet with Rojo.

Her name rang a bell, but I didn't recognize the voice really, so I thought, must just be someone with the same name - pretty common first and last name, it surely can't be her. Called her back the next morning and she said, "We know each other. I am the cantor at church. I know you come to 5:30 Saturday Mass and you sit on the right in the back. I am SO excited to have Rojo on my case load! I will walk you through the whole thing, tell you what to do and not do, etc."

Rojo ADORES this woman (although until last night we'd never actually met her, just worshipped her from afar). He sings for days whichever songs she leads each week at church. He mimics her gestures to perfection. He thinks she's all that and a little bit more.

We could NOT have been given a better case worker if we'd asked specifically for one. In fact, if I'd known at all that that's what she does, I would have killed myself trying to get her.

But I didn't know.

But Someone did.

No accidents.

I'm Not the Only One...

Just saying! To order your copy of this unbelievable book, go here.

College Angst

I think I'm nothing but excited for Woohoo and the fact she's about to leave for college in, gulp, a month from Saturday. My nightmares say otherwise. Night after night I'm in college. I'm in huge, rambling, weird and wrong dorm rooms. I'm 49 and living in a sorority with 60 teenagers. I can't find my classes, forgot to study for the final, forgot to go to class in the first place, etc.

I do, in the light of day, realize she is the one going to college, and this is not about me.

I'm glad she is going to college really close to home (really, really close). It helps, psychologically, to know that I'm right here if she needs anything. If anything, I'm afraid I've under-prepared her for life on her "own." In some ways, as a special needs sibling, she's had to fend for herself in ways her peers have not. In other ways, because I have to do everything for Rojo - literally, do his thinking for him, it's hard not to carry that over to Woohoo - doing for her things she could, and should, do for herself.

STM reminded me of something I know, but choose to forget: if I never let her fall, she'll never know how to get back up. She'll never know how to rely on herself. She'll never know that making mistakes, changing course, righting the ship, is all part of life - actually, it is life.

And so, in a few short weeks, she will be living life - ready or not, here she comes.

Come see me at Hopeful Parents today! Thanks!

And Happy it Was

Rojo had a really happy birthday. All his favorite people came to see him, and they gave him all his favorite things: money for the the ice cream truck, gift cards to frozen yogurt, junk food and college T-shirts. One family even made him a T-shirt (can't even imagine doing such a thing) with an ironed on letter on the front for his first name, and a "16" on the back. The shirt is florescent yellow and super cool. He wore it for two days straight and slept in it.

Somehow he got it in his head that now that he's 16, he can, and indeed should, say no to everything I ask him to do. He told me in no uncertain terms, "Now that I am 16 I can do whatever I want. I will say no to everything you ask me to do. I quickly cleared up the confusion. "Okay, when I'm 22 I will do whatever I want to do and say no to everything you ask me to do."

We'll cross that bridge when we come to it. It's funny, though, because this is the third time his 22nd birthday has come up in 24 hours. The first time was on his birthday when he went to get the mail to see if he had any birthday cards (he had two), and in there was also a letter from the Disability Services notifying him he qualifies (happy birthday!) until he's 22, and then he'll need to be re-evaluated. Apparently there is some government agency that believes it's possible in six years for him to suddenly be a fully independent adult.

Then today we took Rojo's friend to yogurt, and the friend said, "I'm going to take Rojo out drinking on his 21-er." I reminded the friend that he would still be 20 when Rojo turns 21. "Not a problem," he said, "I'll get fake ID for the night."

"I do not want to go out for a 21-er" Rojo piped in (he has no idea what a 21-er is) "I will go out for a 22-er."

There you have it.

Sweet Sixteen

My boy turns sixteen tomorrow, and no where on the planet is someone sweeter. This cute little thing has taken up so much of my heart and soul, I had to do a big remodel to make more room - fully outgrew the old set.

Before there was Elmo, there was Big Bird. Both were originally Woohoo's. Both became his and there was nothing you could do about it. Nothing at all, so we didn't even try.

Woohoo is about to go to college and just learned who her roommate will be. They have a lot in common and one big thing not in common. The roommate is an only child. Woohoo might as well be in the middle of 10. They'll get along great.

Woohoo is the first to say, "Just when you're about ready to kill him, he goes and says something so sweet you can't help but forgive him."

This boy came here to teach. He came here to teach patience. He came here to teach compassion. He came here to teach the shedding of the ego. He came here to teach life re-prioritization. He came here to teach love period.

And he's done so, sweetly.

Happy birthday, Rojo!

A Long Couple of Days

I would hardly call it a crisis, but the same day that blood showed up in Flicka's poop, Rojo lost his watch. Flicka will be fine, thanks to our friend and neighbor Greg, that did a house call, hauled her "sample" into work with him and had two prescriptions ready for me to pick up before 9:30 AM yesterday.

The watch, however, is a goner.

Rojo doesn't just like to wear a watch, he likes a very certain kind of watch. For years these were available at Target for $9.99, and there wasn't a problem. Only a couple of months ago his strap wore so threadbare it broke. Woohoo and her boyfriend were kind enough to alter their plans for the evening, and immediately high tailed it to Target before bedlam ensued.

No luck.

They came home with a watch, but not the watch.

Rojo wouldn't have anything to do with it. The next day after school we went from store to store to store, finally finding one at Walmart, making that my pilgrimage trip there, and basically a convert for no other reason than they put me out of my misery.

Last night the new watch broke in a different place - beyond repair. Woohoo AGAIN left the house in search of a watch. She went to Target, Walmart, Fred Meyers. Nothing. She was willing to give him her OWN watch, but he wouldn't take it.

I tried to be firm. I tried to strike deals. I tried to make him swear on a stack of Bibles that if we couldn't find the watch today, he'd agree to wear the one Woohoo bought him last time. The perfectly good one sitting in our kitchen drawer for just such emergencies.

He swore. And honest to God, I think he meant it. Nonetheless, we spent all afternoon looking at DIFFERENT Targets, Walmarts and the like, and still, no watch.

He is now convinced that we'll just keep trying, and in the mean time, he'll walk around with a big tan mark where the old watch used to be.

I don't want to keep trying. I want him to put on the flippin' watch and give it a rest already. If I have to hear one more word about the watch, in between questions about when the ice cream truck is coming, or what flavors of frozen yogurt they currently have in each different yogurt store in the metropolitan area (including Sherwood), I will lose what little is left of my mind.

Too

So I wrote a book. Not a book, actually, a bunch of pieces pre-blog. Didn't get very far with it, but now looking back, am surprised I even got one single publisher to consider it (before rejecting it). Wrote another book. This time landed me an agent. Love her. She loves me. She loved the book, and away we went - sure I was headed straight to Oprah's yellow couch and the New York Times Bestseller list.

Not so much.

Wrote another book - third time's the charm, right?

Agent went to town again. Lots of nice feedback. Loved the book. Loved me. Loved Rojo. Loved our story. Too spiritual. We exhausted mainstream presses and went to Plan B - spiritual imprints. Too Catholic for the Protestants. Too Christian for the Buddhists. Too something for everyone. Got so far as to have one editor love it, take it to he "pub board" and really fight for it, but in the end, it was just "too" for them.

Here's the deal. If I had written a work of fiction (and we considered at one point fictionalizing this), I could keep reinventing the story to be less "too" and more whatever it is that we thought might sell. But this is a true story. It's our story. To the best of my knowledge, ability and integrity, the story happened exactly as I write about it. There isn't a lot of wiggle room and I don't want to turn it inside out to make it anything other that what it is - a book of love.

After much soul searching we (my agent and I) have decided to self-publish it. She is going to help me, because she is that awesome, and believes in the story that much. I have lost all hopes and desires of being famous. I have dropped expectations that everyone I know will read it, help promote it, and it will   sell enough copies to ever recoup what I've put into it. I do, however, want to finish what I started, and put it out there for whomever "needs" to read it. When it's ready to go, you'll be the first to know.

Art

My dear and holy friend, Candace Primack is among other things, a fine artist. I recently bought four of her incredible pieces, two sets of companion pieces. The two above are "Love Your Neighbor" and "Do Unto Others." The two below are "Love Is" and "Blue Benediction." You can't see it here, but there is writing on the paintings, cool, powerful, spiritual words that bathe me when I read them.

You can't tell by looking, but the frames are really big. Candace helped me decide on mats, frames, size and where to hang them in my house. Goodbye framed posters with Target frames. Hello, ART. Dragged Nancy with me Monday to go pick up the finished pieces. "Welcome to adulthood," she said. At least three of them are going to go into the "sitting (on your *&^) room," with the recently re-slip-covered furniture. When everything is done in there I will take pictures and show you. I know you're dying to see where it all goes down.

Candace is a theologian who uses art to express what she believes about God. She prays over her pieces and lets the Divine come through. These photos don't do them justice. The Good pops from behind the UV protectant glass and museum matting. No telling what all is going to come from my future "can" time.

Keeping Your Marbles

When I was in college learning to be a teacher, one strategy for classroom management involved a glass jar on the teacher's desk, and when the class was being good, the teacher put a marble in the jar. When the class was acting up, the teacher silently removed a marble. When the jar got full, the class got a party.

Lately I've been thinking a lot about the term "losing your marbles" and my opinion that if you can only have one thing in this world, it sure as hell better be your mental health. I believe hell and heaven are states of mind, and that we are always moving along the continuum between one and the other, "happy" when we are at least in the middle, and at times experiencing both the pits of hell and the ecstasy of heaven.

I'm already driving STM and my dearest friends crazy with constant reminders to "put a marble in your jar" - make the choice that fills your mental health jar, not the one that takes a marble away. This is really just another expression for self care, but self care I'm afraid has a "selfish" connotation, even though we've come to know better than that, haven't we?

Kathleen and I had an interesting breakthrough recently when we discovered we had too narrowly defined self care. We thought it it wasn't manicures, pedicures, massages, doing a crossword puzzle, sitting in an over-sized chair with an iPad, etc., it wasn't self care. We had not deeply considered what would put the most marbles in our very individual jars.

We are each super programmed to save money at all costs - including the cost of our wellness. To break that "cheaper is better" thinking is a challenge, but we start by adding tiny marbles every time we choose "yes" to the online shipping choice that guarantees what we need will be here when we need it, rather than saving $5 and freaking out it won't.

Because I am a proud gold card carrying member of Starbucks, after 15 drinks they send me a card in the mail for a free one - any drink at all. I carried the last card in my purse for over a month, visiting Starbucks many times along the way, refusing to use it because I had it in my head that because the drink would be free, it needed to be fancy. I didn't once consider my usual tall cappuccino "enough." I finally realized how ridiculous I was being and sipped my free drink of choice with great delight.

What will you do today to help fill your marble jar?