Carly's Voice

In the summer of 2010, I went to the Iowa Summer Writing Festival to take a memoir class from the incredible Hope Edelman. In that class was someone else incredible, Arthur Fleischmann. Arthur and I just "clicked" immediately. He was there working on the book he was co-writing with his daughter Carly, who has non-verbal autism but found her "voice" through an augmentative communication device. I'm happy to say they completed their book, Carly's Voice, and just this week it was published.

Arthur has the gift of being one of those super funny, gregarious, entertaining and delightful people that write just like they talk, and those gifts helped get him through the worst of times, and share joyously with all of us the best. I had the honor of reading an early version of the book, and look forward to my "real" copy arriving any day now. If I ever get Arthur to Portland I'll let you know, he'd be a delight to hear speak, and I promise you'd never forget his stories of what it's been like being Carly's father.

To learn more about the invincible Carly and to order their book, click here.

Wild

Cheryl Strayed does not need my help to sell her book, WILD. She has Vogue,  Reese Witherspoon and the New York Times all doing that very well without me, but I want to help anyway. That's the effect Cheryl has on people - she brings out the best. I was lucky enough to meet Cheryl in 2006, right when her first book, TORCH came out. I met her at a "salon" - an in-home reading, then shortly after that I hosted her at my house for a salon where the topic was mother loss.  I will never forget my very very first exchange with Cheryl - she came up to me and said, "Hi, I'm Cheryl." Might not sound memorable (or original), but it was. She was approachable, accessible, human, warm, kind and very very likable. She had just had her second baby and I wondered how on earth she was managing a book tour with two tiny children.

Cheryl and I struck up a friendship and enjoyed several more evenings out together talking about family, our very different histories, writing and life. The last time I saw Cheryl socially, she had written half of WILD and was about to go lock herself away in a cabin to crank out the other half.

I was lucky enough to read an advanced reader's copy of WILD several months ago. I loved it. It made it extra special because I knew the woman telling the story, but I was learning about a huge chapter of her her life I knew nothing about. I can honestly say, I couldn't have survived a day doing what she did for 100.

The physical challenges of hiking the Pacific Crest Trail alone are impressive, but what was even more so, was the psychological transformation Cheryl underwent, and beautifully captures in this book. To know Cheryl is a privilege - by reading WILD, you will experience that privilege.

To buy your copy of WILD, click here.

Changing

Even STM agrees, it's time to replace the slipcovers for our furniture in the "reading room," aka, the iPad/Flicka room. Since we don't dine, our "dining room" has a love seat, big chair and an ottoman in it, two little end tables and a plant. Smallest room in the house. We spend 90% of our family time in it. I spend 90% of my life in it, and have all the technology a girl could want, right at my fingertips: iPad, MacBook, cell phone, cordless landline phone, chargers and cords going every which way. I may never leave this room. The kitchen is just right there, every book I'm in even considering reading is stacked on the table, my reading glasses, calendar, pencil and coaster for my coffee - all right there. If I could just get STM to move the washer/dryer in here too, I'd really be set.

Back to the slipcovers. When we moved into the house before this one, almost fourteen years ago, we bought these pieces of furniture for the then family room. We washed the slipcovers that came with them so many times they were trashed in six months. We had them replaced with custom made denim ones, and they've been rock stars. But, two kids, a dog, misuse of Sharpies, years and years (and years) of diaper changes on the ottoman later, they are, well, let's just call a spade a spade, gross. They are faded. They are ill fitting. They are threadbare. They are stained. In places they even have holes. They are just like your favorite pair of jeans - they hold memories and meaning and if they could talk, well, the stories they could tell.

I convinced STM that this time the slipcovers would last as long as we want and need them to - for the rest of the life of the furniture. We've got one kid almost out the door, and another one that no longer needs his diaper changed, or writes with a Sharpie on furniture and walls (that reminds me, note to self: we need to repaint several walls, too). We are no longer the couple with two small kids that we were fourteen years ago. Our lives have changed. Our family has changed. The way we use our house has changed. And all you can do when everything is changing, is change along with it.

Starting with the slipcovers.

WHAT HAPPENS NEXT?

The day I wrote the post entitled, "What's Next?" I got an e-mail from someone helping to promote the book, WHAT HAPPENS NEXT? Raising a Son with Autism: A Father's Story, by Rick Schostek. The publicist was doing their homework, came across my blog, and wanted to know if I'd take a look at the book and feature it on my blog. I agreed. I'm glad I did.

WHAT HAPPENS NEXT is a sweet book, and quickly moves through the years of raising a son with autism, and wraps up the book with some very helpful and concrete information about just that: what happens next. What do you do when your child "ages out" of the system? What do you do when you need to make hard choices about guardianship, SSI, Medicaid, Special Needs Trusts, housing, employment? All of those fun things that haunt my every moment.

I know I'm not the only one that feels the responsibility, constantly, and I do mean constantly, of having  a child that will forever be a child, long after they are an "adult." The whole thing totally overwhelms me and drives me straight to the chair-and-a-half with Flicka and the iPad. I would prefer to lose myself in Solitaire, than delve into all of this, but I know it's right around the corner for us. Rojo will be 16 in July, a lot of this needs to be handled before he turns 18. We all know just how slow and bureaucratic "the system" can be.

The book was helpful to me on many levels - it's comforting to know there is a roadmap and to have it shown to me. It's comforting to know that for at least one family, it was navigable. It's comforting to know that I am not the first and I won't be the last - in fact, the numbers coming up behind us are exponentially higher than those that have gone before.

We are not alone.

To read more about, or to order your copy of WHAT HAPPENS NEXT? click here.

The Best Laid Plans

My plan was for us to do all our college visits Woohoo's junior year, narrow it down, apply to 3-4 schools  immediately in the fall, get all her applications in by Halloween, have the answers by Thanksgiving, and then just relax the rest of the year knowing (smugly) that "our" plans were all in place for college.

I dragged her to the college visits. I held a gun to her head to apply to the colleges. The acceptances came. Now here we are with just a little over a month left until the drop dead date colleges impose (May 1st) to get in or get out, and she still hasn't decided.

This indecision was doing nothing for our relationship. This indecision was doing nothing for my digestive system. This indecision was doing nothing for my marriage. Still, I continued to make this my problem to the point that I was absolutely in a complete dither pretty much 24/7.

Until I remembered everything I learned about cord cutting. I realized we were totally bound up in this energetic pathway to no where, and in fact, I was holding all the responsibility so she didn't have to. I had to do something to give her back her power, and regain some of mine. Every day for a couple weeks now I've visualized cutting the cords that bind me to her decision and keep the onus on me, I visualize the unhealthy cords being burned in a healing fire. I visualize her energy and power returning, and me getting back on my life, and out of the driver's seat of hers.

I'm sure all my we-have-done-private-education-all-the-way stuff is in there. I'm sure my we-only-have-one-kid-going-to-college-so-it-better-be-good stuff is in there. I'm sure my everyone-else's-kid-is ________ stuff is in there. Basically, a lot of stuff that didn't need to be in this decision of hers was in there.

The cord cutting has helped. It has helped me. I feel my energy returning. I feel she's moving from the back seat to the front, even into the driver's seat. I feel like whatever choice she makes will be the right one for her. I feel like the colleges have imposed a deadline on her decision that makes it so I don't have to.

I feel like her turning 18 in May can, and will, be a gift to both of us. A gift we'll both be ready to receive.


Photo from: http://www.byregion.net

Ambrosia

I was mulling over just what it was I was trying to articulate for today's post, and while processing, I read this by my friend, Kario. That's what I'm trying to say: few things are harder, or more rewarding, than sitting in silence with yourself.

Look around, we're all numbing ourselves with food, alcohol, work, gambling, shopping, Facebook, busyness, you-name-it. So few people know how to just "be." When you come across one of them it's noteworthy. I'm working on being one of those people - the be-ers of this world, after 49 years of being a major do-er.

It is hard. But it's getting easier. Not there yet. Not even close to there yet. But I've tasted the nectar of the stillness gods, and it is sweet.


 * Photo from http://www.thebridgemaker.com

Room

I am probably the last person on the planet to read ROOM, but if not, if you still haven't read it. Do it. Immediately. But carve out a full day where you do nothing but turn pages (or sleep because you were up all night reading). Usually I am NOT one of those people that stays up too late reading - reading makes me sleepy at night, and I'm lucky if I get five pages in before nodding off. Not ROOM. Started the book on Thursday, stayed up reading and reading and reading, and couldn't wait to get all my pesky chores done on Friday so I could curl up and finish it.

While you're scheduling, add in at least 2-3 days of "after thought" and grieving. You will not stop thinking about this book, and to pick up a new one too quickly, feels like a betrayal. You're not ready. The book must be properly grieved.

Also, warn all your friends and family that you'll be able to speak of NOTHING else while said reading and grieving are taking place. You will be CONSUMED by this book. If you are a writer you'll be tempted to throw your computer out the window, you'll think and I call myself a writer.


Terry recommended this book to me over a year ago, and it took me that long to decide I could "handle it." It's the story of a woman and her son who are held captive in an 11x11 foot room. If the book had been told from her perspective it would have been too much to bear, but it's told through the eyes of her five-year-old son, Jack. Jack is loved and cherished and has what every child wants: a devoted mother, all to himself. He thinks life inside the room is great.

If you are a parent that would do anything for your child, this is the book for you. If you like a thriller, this is the book for you. If you want to forget all your problems and become obsessed with someone else's for the time being, this is the book for you.

For more information on ROOM, click here.

Please click on over and join me at Hopeful Parents today. Thanks!

Happy St. Patrick's Day!

"I take for my sureties:

The power of God to guide me,
The might of God to uphold me,
The wisdom of God to teach me,
The eye of God to watch over me,
The ear of God to hear me,
The word of God to give me speech,
The hand of God to protect me,
The way of God to go before me,
The shield of God to shelter me...

Christ be with me, Christ before me,
Christ behind me, Christ within me,
Christ beneath me, Christ above me,
Christ at my right, Christ at my left,
Christ in the heart of every man who thinks of me,
Christ in the mouth of every man who speaks to me,
Christ in every eye that sees me,
Christ in every ear that hears me."

               - St. Patrick

Two Great Reads

Really hard to sleep while I've been "tired," since all I do is blow my nose and cough. But, here's the good news: I'm on Season 5 of "Brothers and Sisters," have become EXPERT at Solitaire, and have read two of the best books.

THE SCHOOL OF ESSENTIAL INGREDIENTS is one my mom lent me, all she said was, "You'll love it." I did. Even though it talks a LOT about food and that is about 1001 on my list of things I'm interested in reading/talking about. It's one of those sweet books you can read quickly, but long after the characters float around in your brain in a happy way.

Then another friend recommended HEFT. She said it was un-put-down-able. I found that to be true. I read half the first day, half the second, and I am NOT a fast reader. I don't even want to tell you too much about it, it would spoil it. Just get the book and enjoy great writing and again, wonderful characters.

Happy reading! Hope you all keep from getting "tired!"

Funny

So, turns out I caught Rojo's "tiredness." He came down with it Friday, and it hit me on Saturday. We spent the weekend mutually miserable. He kept telling me on Sunday, "I am 68% percent better. I will be 100% better tomorrow. I will go to school tomorrow." Since he hasn't missed a day of school in years, I believed him.

Monday morning came and I looked through my watery eyes and croaked through my up-all-night coughing voice, "How are you feeling?" I could tell by the look in his eyes he wasn't his promised 100%, but I also thought his desire to go to school would be so strong he'd tell me he was fine.

Sure enough, "Fine," is what he said.

"Do you want to stay home with me one more day?" I asked, again, believing he'd never go for it.

"Yea," he said. "I'm still pretty 'tired.'"

"Okay, I will call the school and let them know you won't be here." Relief flooded his face.

We then spent the day in self-imposed quarantine, trying to contain our constant sneezing, coughing, blowing, to two rooms of the house - him in the TV room, me in my room just down the hall so as to minimize the chance of Woohoo and STM catching whatever it is we have. (And if you think I was going to spend the day in the TV room with him watching "Zach and Cody" you've got another think coming.)

I'd offered over the weekend to go get frozen yogurt and bring it to him, but he'd declined. On Monday he  e-mailed me from his iPad in his room, to my computer in mine. "Did you want to get frozen yogurt today? Two bowls. Regular flavors. Graham cracker, Oreo and 2 gummy worms on top." Of course I was jumping up and down to leave the warmth of my house, bundle up and face the elements, drive to get yogurt looking and feeling like you-know-what.

When I got home with the yogurt he came downstairs and sat at the breakfast bar to eat it. He grinned from ear-to-ear, and at one point started to laugh. "What's so funny?" I asked.

"Heaven!" he said pointing skyward, as if that was the most logical answer in the whole entire world.

And who am I to disagree?

Sick Day

Knew something was amiss the minute I picked Rojo up from school yesterday, and he declined my offer to take him for frozen yogurt, AND didn't want to go to the school to play with the dogs and see all his friends. "I just want to go home and have quiet time." Although there are plenty of hours in the day when Rojo is doing his thing, he is never, ever, ever quiet.


He was. Like a stone. "Are you sick?" I asked.

His face got red and tears sprang to his eyes. "You know that hurts my feelings when you say that. Don't say I am sick! I am not sick!"

"Should I say you're just tired?"

"Yes! Just say I am tired! I am not sick!"

"I know you're not sick, but I'm going to give you Motrin - it will help you not feel so 'tired.'"

"Okay," he said without a fuss.

Gave him Motrin, got him cozy in the TV room with Flicka and some show aimed at the preschool set, and he stared silently at it.

I suggested we "start the process" for bed early - an hour early - and again, he didn't protest. He obligingly let me brush his teeth, smear his head with Clearasil and tuck him into bed.

When he got up at 5:50 he went straight to the Motrin and asked for another dose. "I don't think I can do what we were going to do today - I'm still... 'tired,' but I will feel better tomorrow."

I cancelled our plans (an all day event for his upcoming Confirmation) got out the sleeping bag, made him a proper bed in the TV room and got him situated with water, snacks, Kleenex, a waste basket and Flicka. I've checked on him a million times, and he's eating and drinking, perking up by the hour and was even YouTubing ice cream songs a little bit ago - complete with humming and thumping of his foot.

It's a guilty pleasure, but when ADHD takes a sick day, it's kind of nice.

Tired

Took Rojo to the eye doctor yesterday morning for his yearly exam. Used to go every three months. Used to put drops in the good eye every single day of a squirming, screaming, little boy since he wouldn't tolerate a patch, and his bad eye was bad, and we were all about strengthening the bad eye before the window of opportunity closed. Used to be the appointments were pure torture, he'd have to get dilated, it would take three of us to hold him down for that. Used to take two hours for the appointment what with all the waiting room, dilation, waiting room, exam by the assistant, exam by the doctor, etc. Brutal.

Now we whisk in, sit briefly in the waiting room amongst all the other parents at the beginning of this journey, holding their small children on their laps, and bracing themselves for what's to come. And come. And come.

We were at the doctor's less than 30 minutes total yesterday - no dilation, he can accurately tell you what he can and cannot see, and we're out of there - usually with a new Rx that's slightly but not significantly different. "Normal change in vision."

The doctor looked through Rojo's big, fat file and said, "Wow, I've been seeing Rojo for 10 years, and he's been coming to this office for thirteen (his first doctor retired) hard to believe," she said.

"Not for me," I said. "When he first came here he didn't know his letters, the doctor gave me pictures of things like a birthday cake, a ball, and an airplane. She wanted me to practice with him at home, so he could give them a better idea of what he was seeing. I blew up the pictures, mounted them on card stock and then laminated them. They were giant flash cards I used to drill him with so he could come and take his eye exam."

When STM asked about Rojo's eye doctor appointment, I told him the whole story about how much used to go into each visit, how often we had to go, how far we've come. "No wonder we're tired," he said.

"No wonder," I said.

A Good Egg

When I'm not "busy" playing solitaire, I'm making my way through five seasons of "Brothers and Sisters." I can proudly say I'm on Season 4. One of the story lines involves brother Kevin and his partner selecting an egg donor for the child they hope to have together.

This is pushing all my buttons, and not the ones you might think. No, the big button getting pushed is the whole idea that there are good eggs and bad eggs, and one can select the good by scrolling through an Internet data base, and avoid the bad ones all together.

When a woman well into her 40's gets pregnant, we all know the chances for a "good egg" are slim. "Infinitesimal" one might say. Then we all have our opinions about what one should do knowing she's passed on a "bad egg." I'm not here to debate the right to life. I'm not here to sway anyone to one side or the other on any of those hot topics. No. I'm here to ask us to reconsider what we consider "good."

Had I been an egg donor in my early 20's, I may very well have been chosen. I would have looked mighty good on "paper" (and come to think of it, that's all we had in my 20's). What would the couple have done if after carefully selecting me, they came to have a Rojo? Wanted their money back?

I don't think that Rojo is the result of a "bad" egg (or sperm). I don't think there's anything bad about him or his conception, or the life he leads and the ones he touches.

* Photo from http://www.women-health-info.com

Solitaire Wisdom Pt. 2

I've come to the convenient conclusion that playing solitaire on the iPad, while snuggling Flicka in the chair-and-a-half, is about the best possible use of my time. Somehow the tap, tap, tapping and moving the "cards" around opens up places in my mind that I did not previously have access to.

Plus, there's a "hint" button.

I've set the game so that it only deals winning hands. That means, it is possible to win each game. Doesn't mean I always do. There are all kinds of ways to screw up, or simply guess wrong, when faced with two seemingly similar choices. The beauty is when you don't know what to do, you simply click "hint" and it shows you what you can do. Then, if you still screw up, there's the ever-helpful "undo" button. As a last resort, you play the game, get stuck, can't win, know it's possible to win, you just click "replay game" and you take everything you learned from your previous attempt(s) and go at it again.

I do think life is a game of solitaire. We have all kinds of hints, undos, and even re-plays with the winning hand we're dealt. It's just a matter of using them.