Sunday, June 30, 2013

Promise


This is the bookshelf that has been in Wil's room for the last 10 years, and had three shelves of books packed in it, plus more on top and on the sides.

He has not looked, voluntarily, at a book once. Not ever. For years and years I read to him at bed time and although he did enjoy a few (he loved the Robert Munsch books), after oh, say, fourteen years or so of that torture, I finally just stopped. He never asked about it - never said to me, "How come you don't read to me anymore?" Likewise, I never again suggested when he was bored, that he go read a book.

Yet, oddly enough, when I asked Wil if I could move the bookshelf out of his room when we painted and re-did his room, he said no. "You're not touching my bookshelf. Keep it right where it is. Don't move a thing." I gave it a couple of days and then I suggested I move it downstairs so we could paint, and if he wanted it back in his room after we painted, I'd put it back and load up all the books again. To that, he agreed. I put the books in totes and hauled them to the basement. I loaded up three grocery bags full of ones I never wanted to see again, and took them to Goodwill. I kept all the ones that had been mine, I'd used in teaching, or fondly remember reading to Woohoo - and that was a ton.

I could not believe how emotional the experience was of looking through the books -how many memories came flooding back - some from nearly 50 years ago. The next person to hear these stories will probably be my grandchild, and Lord willing, that will be a decade or more from now.

When Wil saw the bookshelf all cleaned off, empty, and in another room, he looked at it and said, "That's old. I don't want that old thing."

"That old thing" had been my dad's and came into my life almost exactly when Wil did. I am attached to "that old thing."

I saw a friend at church on Saturday night. She is the mother of an 18-year-old with special needs. "I read your blog about re-doing Wil's room. I understand about the books. Such promise," she said. And that was it exactly. That was the final layer of the emotional load that the books brought on. Not only all the assorted memories, but the promise I once held for a reader. For a boy that would learn to read and then read to learn. That would find solace in books. Company. Escape. New horizons. Adventures. Information. Pleasure.

And so I let the bookshelf sit in its temporary spot while we paint and re-decorate, and let some more time go by, some more healing, some more acceptance, some more touching with gentle awareness all that isn't and all that is.

And in the end, I predict I will fill the shelves with all of my own books that don't fit on any of our shelves, that lie in boxes and on top of other things, waiting for a true home of their own. I will place candles up on top and invite the light to shine, to warm, and to transcend.

Amen.

Saturday, June 29, 2013

A Bright (One Might Even Say, "Sparkly") Future

(Kara with her Down syndrome doll mentioned in her last guest blog post)

I asked our friend Kara to tell us what her thoughts are for the future. Here is her reply:

hi carrie my fuecher is I would like to go to new York and see some broadway shows  therie and see  every thing when I do get merryed someday in the fuecher I would like to have my fucher honeymoon  in newyork and see really cool sites and I would like to see where they made the movie annie in new York I would love to see where theymade annie in newyork because they made that movie annie in 1981 and that was the year I was born  this is my fucher someday I want to remember this moment


Wednesday, June 26, 2013

Big Boy Room



We moved into this house nearly ten years ago, when Wil had just started first grade. We decorated his room accordingly - sports posters, NBA duvet covers, red bunk bed (which were hand-me-downs), toys, trucks, stuffed animals, a bookshelf full of picture books, a tub full of musical instruments, one of costumes, and a third of sports equipment. About a year or so ago I finally got rid of most of the toys, some of the stuffed animals (you don't even want to know how many he had "living" on the top bunk), all of the costumes and musical instruments. I put a mini trampoline in their place on the floor, and other than that, there's been no updating.

My boy turns seventeen in a little over two weeks. I am driving STM, Woohoo, and poor, sweet Nancy crazy with my obsession of making over his room by that day. I don't know what it is about that number, but that coupled with the fact he'll be a junior in high school, I literally cannot take it any longer. I've spent hours upon hours shopping on line for a duvet cover that will say, if not "grown up," at least not "child." Having found one he and I both like, I then spent more hours finding the best price. I've selected a bed frame and dresser at IKEA, and have Nancy going to Costco multiple times to get me sheets, pillows, and yes, even a mattress. I want Wil to move up to a queen bed, now that he's 6 feet tall and going up. I am way too "frugal" to join Costco myself, so instead, I have Nancy on a wild goose chase, and she even has to look at multiple links I send her a day to weigh in on everything from paint colors to you-name-it, no detail too minute to bog her down with it!

Wil is going to live in his room, in our house, for many a year. That is fine. I am good with that, and in fact, am nowhere near ready to think of a day where that isn't the case. But as I walk by his room every day about a million times to go down or up the stairs, I want to see a room that says where he is and where he's going - not hold us in the past. Whether or not he is a typical young adult, he is growing older and he is out-growing little boy things, little boy looks, the little boy that moved into this house ten years ago. Making the room different won't make him different, but it will make me different.




Monday, June 24, 2013

Help, Thanks, Wow

Another one of my strengths over-used is frugality. On the flip-side, I am generous to a fault with others, but super stingy with myself. I have wanted to buy and read Anne Lamott's book, HELP THANKS WOW. I knew I would love it because I'd heard good things about it. I knew I would love it because I love books about the concept of thinking about what prayer is. I knew I would love it because I love Anne Lamott very, very much. Still. I would not buy the book for myself because it was $17 for a hardback and very short. This thinking stopped me any number of times from picking it up at bookstores in airports, in the neighborhood, and about town. I didn't just want to read it, I knew I wanted to own it, to mark up, to pass around, to hold onto, to come back to. But I just couldn't make myself do it. Ridiculous, I know, but very much "me."

My mom knew she wanted to buy it and read it and pass it along for all the same reasons, and without knowing it was short, expensive and only in hardback, she recklessly bought not one but two copies. One as a full-on gift, one for herself. I have just finished reading her copy but before I'd even finished, I purchased and sent the book to two people.

You're getting all this, right? This line of reasoning? Thought so.

Let me tell you, get your hands on that book. The library, a friend's, a used copy, a brand new one just for you - whatever. You're welcome.

Saturday, June 22, 2013

If You Only Had a Year To Live

My friend, Terry, texted me a couple of weeks ago, insistent that I start watching "The Big C." She said she was obsessed, and therefore, I should be, too. This made perfect sense to me, and so, I immediately set out to find and become obsessed with a show I'd never heard of. I am nothing, if not obedient. It was a little tricky, because the show is not on Netflix. I could pay $2.99/episode to stream it, but I am WAY too cheap for that. At 13 episodes a season, and only 26 minute episodes, that was not going to fly with me. I decided to order the DVDs online at a bargain rate, and the day Season One arrived, I set to work. In case you are unfamiliar, Laura Linney knows in the pilot episode, that she has stage 4 melanoma. She will not survive it.

I watched three episodes within the first 24-hours, and felt like the A student. I watched one episode from Disk 3 before carelessly leaving it lying about, and it got stepped on and cracked right in half. Not to worry, I got right back on Amazon and ordered an even less expensive Season One again, and patiently awaited its arrival. I just finished the season Friday morning at the crack of dawn over my 5:30 AM before-Wil-wakes-up coffee, then texted Terry to tell her I'd finished. Shortly after I texted her she called, and I actually picked up the phone and we had a short, but satisfying dissection of the series thus far. "Do you think you could trick yourself into living as though you only had a year to live? Do you think it's possible?" she asked.

"You could pull off some facsimile," I said, "but you couldn't be reckless. You couldn't cash out your IRA."

"But could you act out?" she asked.

"Within reason," I said.

Acting out has never been something I've been prone to do, and even if I had only a year to live, it would not be top of my list of priorities.

"For me," I said, "it would be more of a question of priorities. What would I do with my time, my money, my energy? How would I spend it? If I knew I only had a year to live, would I spend another second with certain people?"

Terry and I have three seasons more to go and exponentially more conversations about this, to be sure, but I think in the end we might challenge each other to a year of living intentionally, mindfully,

Perhaps even a little teeny tiny bit recklessly.

Thursday, June 20, 2013

More From Your Favorite Guest Blogger and Mine...

I asked Kara if she'd do an another guest blog post and she came up with the idea of what it was like for her as a teenager. Here is her response:



when i was a teenager i remember lots of stuff i looked up  downsyndrome  dolls at psu with my teacher victor commings  i found  a verry special doll  i really liked   then when  i got home i order it on line  affter i order the doll i was so exsited  to get my doll when that day came i was so exsited to open it when i open the big box i took the doll out and took it up stairs  i put the doll on my bed sometimes i brush my doll hair a lot i brush her hair carefully  other things i liked is  and to remember when i watched full house and the brady brunch   and  i want to remember thoes tv show  so i can remember the shows now im playing a teenager in a play called bye bye birdie and i will always remember when i was a teenager here is my story for your blog  your friend kara


Kara will be performing this weekend, if you're interested in more information on PHAME, click here.

Wednesday, June 19, 2013

Trying New Things

Wil is back to talking quite a bit about what life will be like when he gets married and has his kids. He has the lucky lady all picked out, and let me tell you, he does know how to pick 'em. Yesterday he informed me that when he is married and has kids, he will get a poodle, and there will simply be nothing I can do about it. "When I am married to my girlfriend and have kids, I am going to get a poodle. You can't decide what dog I get because I will be married and have my kids. When I am married to my girlfriend I might get five poodles."

I have never voiced an anti-poodle sentiment, so I'm not sure quite why the vehemence.

Today I asked him if he'd like to sit up front with me when we drove over to Grandma's to fix her TV (which wasn't broken, but her remotes weren't cooperating, and Wil is a genius when it comes to remotes). He typically prefers to sit in the backseat with Flicka, rendering me a chauffeur, but I am fine with that. My purse sits besides me and never, ever plays with my radio. So, today he did sit beside me, and he did play incessantly with the radio, and he did prattle (one of his favorite words) on and on about his future with his girlfriend that will be his wife, and his kids. When he is married to his girlfriend then she will drive the car, and he will introduce the kids to various types of music. "If my kids tell me they don't like that type of music, I will be strict with them, I will tell them they have to try it before they can tell me they don't like it. I will play country and oldies and classic rock for them. I will make them try new music before they tell me they don't like it. My wife will drive and I will play music for my kids and make them try new things."

I guess his kids will be getting the do-as-I-say-not-as-I-do lesson, very early on.


Tuesday, June 18, 2013

Friday, June 14, 2013

The Experience


Wednesday night one of my favorite people, Susan, and I went to "experience" Theresa Caputo live, and let me tell you, it was an experience I will not soon forget (and I forget darn near everything). If you love her on TV, you will go crazy seeing her live. She is everything she is on TV and then some. "Uncut." She swears, she laughs at herself, she knows what she knows and doesn't apologize for not knowing what she doesn't know (someone said they owned a hobby farm, and she said, "Yea, I don't know what that is.") She is so good with herself it is refreshing. On TV it seems like everything she channels instantly "clicks" with the people she's reading, but I'm sure there are all kinds of bits and pieces cut to make it fit into a tidy half hour. Live, she sometimes says something that gets a "no," but she persists. "I may not be explaining the symbols I'm seeing in a way you understand at first, but your loved one insists..." and she will work and work until the "click" happens. And it always happens. And more than once the "click" was for the person next to the person she was reading. She'd say something, and then the person right there would say, "I understand about the potatoes," (which was how the hobby farm came up).

She told one man his father had learned many lessons on the other side and had grown. She explained that there are levels on the other side - the lower the level, the more lessons yet to learn. I've always "thought" that, too. Thought not being the right word - I actually had a visitation 25-years-ago from a loved one that had committed suicide. He "explained" to me in my "dream" that there are levels - if you don't finish your work here in the physical world, you go on working on finishing it on the other side, and move up the levels there.

Theresa said we do have a destiny, but also free will. We can control our destiny with our choices, and others can change our destiny, too, but if that happens, then we are fulfill that destiny on the other side. When we make "bad"choices, we just have more to do "later," but it gets done.

There were 3,000 people in attendance (I'd say 2/3 women), and she probably read 30 people. Some she read briefly, some she really lingered with. There was one young man sitting in the very front row that she just quickly said, "Your loved ones want you to know that some people are just mean. Ignore them. Don't let mean people keep you from doing what you want and need to do - SCREW 'EM! Does that make sense to you?" Through tears in his eyes, he nodded "yes."

She asked one woman if she had a medallion of the Blessed Mother hidden - maybe in her bra? The woman about lost it and said, "It JUST broke! I had it around my neck and it JUST fell off and ended up in my bra! And it was WELDED together!"

There were lots of tears and lots of laughter. There were wild shouts when Larry (her colorful husband) showed up down near the stage and waved to all of us. There was hilarity when Theresa stopped a reading to tell a woman seated nearby, "I LOVE your hair!" Naturally, the woman's hair bore a striking resemblance to Theresa's. Speaking of Theresa's hair - one woman getting a reading with her boyfriend,  gave a gift to Theresa at the end. The woman said she was a hairdresser and Theresa pulled from the bag a can of hairspray and immediately gave herself a good dousing, and it was obvious she could do this maneuver in her sleep.

Theresa opened by pointing out her shoes and saying, "If nothing else tonight, we can talk about my SHOES!" They were Louboutins with crystals embedded all over them. They were perfect and so her. I couldn't take my eyes off of them. I couldn't take my eyes off of her. I couldn't take my eyes off all the people having a shared experience. And there was no denying that Spirit was alive and present in a very, very big way.








Thursday, June 13, 2013

The Big Leap

I am going to talk about a book I have not read, and know very little about. Don't you love it?  The Big Leap. During my most recent self-improvement kick, I partook in the Hay House World Summit 2013. I should put the word "partook" in quotation marks, because I really just dabbled - 20-30 minutes a day of one of the ten speakers-of-the-day, before Wil woke up and my day went from zen to business-as-usual.

Gay Hendricks was one of the speakers, and he spoke about many things, including the four zones, which he outlines in his book, The Big Leap. They are the zones of competence, incompetence, excellence and genius. Most of us spend a lot of time in the first two zones, doing what we do, over and over again, and spending way too much time and effort doing things we really aren't cut out for. The goal is to spend the majority of your time in the zone of genius - doing what you came here to do, doing what fills you up, what you do better than anyone else, what is uniquely your skill set, what sets you and the world it touches, on fire.

I can't stop thinking about this, because I definitely spend way too much time competently taking care of the day-to-day tasks and chores, and way too much time feeling guilty for not doing things at which I am incompetent, but tell myself I not only should be doing, but should be doing well! Insanity. I occasionally spend time in the zone of excellence, and have touched the bliss of the genius zone. It's bliss for a reason - it's right and good and lines up with our higher purpose. It's not that our ego is being stroked and that's why it feels good, it's that we were born to do that. We are on track. We are in alignment.

Even if we can't take a big leap straight from competence/incompetence to excellence and genius, we can baby step it. We can bring this idea into our awareness. We can notice when we are in alignment and when we aren't. We can touch each of those moments with gentle awareness. We can put out the intention into the Universe.

And then we can wait expectantly for the Universe to compassionately and swiftly bring forth more opportunities to practice.

Amen.

Tuesday, June 11, 2013

Stress Hardiness

I listened to an interesting interview with Joan Borysenko recently. Actually, it was a 60-minute interview and I probably listened to 20 minutes of it before my "little friend," as STM calls him, woke up and started barking orders for the day.

Anyway. In those 20 minutes I did get a few great tidbits. Joan spoke of what she calls "stress hardiness," and what it is that makes some people hardy against stress, and some not so much. She says the three things people that are stress hardy all have in common is the three C's:

1) Challenge - when a situation arises, they see it as a challenge, and one they are up to

2) Commitment - they persevere until they solve the problem

3) Control - they realize and accept that which they have control over, and that which they don't

Conversely, the three hallmarks of a pessimist are the three P's:

1) Pervasive - your negative thoughts seep and spread rampantly - one negative thought takes off in 10 directions - not that I'd happen to know anything about this

2) Permanent - you believe whatever it is that's the problem, is not only a problem, but a permanent one

3) Personal  - it's all about you

I can think of so many people that are optimists and so many that are pessimists, but like with anything, it's a continuum, we are all somewhere along that continuum, some just on one end or the other in an obvious way. Lots of us lean one way or another but can dance around on that continuum back and forth, depending on the day, the situation, the triggers, the baggage, and about a million other variables.





Monday, June 10, 2013

Endings


This feels like a goodbye post, which it really isn't. There is just something so line-in-the-sand about the last week of school, and by "week" I mean three almost-half days and one hour-and-a-half day.

I go to a Starbucks by Wil's school about once or twice a month after I drop him off, get myself a tall cappuccino for "here" and sit in a cozy chair to collect myself. If I'm getting ready for an author event, then I read through my notes, practice what I'm going to read, and generally psyche myself up while simultaneously calming myself down. You get it. Today I did the same thing.

I sat there and sipped, plugging into my own Pandora station on my phone, and reflecting on the year it's been - a good one, all the great people that are leaving, a lot, and all the wonderful ones that are staying - even more. I can't believe in two short years we will walk out those doors for the last time and it will be the... last time.

Another thing my cousin and I talked about at our breakfast last week, was endings - deaths, really. There is the death we think about in terms of death, but we die many deaths in a lifetime, we mourn, we lose, we are born, we live, over and over again. June always feels like a death to me, followed by a rebirth in September.

So as I finished that last swallow of coffee-flavored foam, I said goodbye to another year. A good year. A very good year.

Thursday at 10:00 AM it will be time to say hello to summer, and all that that brings, its challenges, long days, and too short of nights, its very summery-ness. And inevitably, it's hidden gifts.

Thursday, June 6, 2013

To a Fault


I had breakfast this morning with one of my favorite cousins. I am blessed to have MANY favorite cousins, but this is the one I go to for matters of the soul. We spoke of the Celtic Sacred Art of Living and Dying, of mindfulness practices, of touching with gentle awareness our own repetitive reactions to the same old %#@*, and how we've both come to embrace the concept that our weaknesses are our strengths overused.

All day as I tended to the repetitive, never-ending, mindless-yet-good-for-mindfulness activities AKA  housework (think: company coming), I worked on that notion, until I finally had a lightbulb moment when I realized that's what the expression, "... to a fault" means. "He's nice to a fault." "She's generous to a fault." "He's humble to a fault." You get the idea. We are all "to a fault" something(s), and the "fault" part is what bites us in the you-know-what.

I told my cousin that one of my strengths was efficiency, but conversely, when overused, it was a definite weakness. Efficiency, "to a fault" doesn't allow for meandering, it doesn't allow for discovery, it doesn't allow for others with a different speed and approach to collaborate very easily, it doesn't allow for rest, it simply doesn't allow.

Another of my strengths/weaknesses is thoughtfulness. I think of others "to a fault."

I have plenty of other strengths and plenty of other over-used strengths/weaknesses/faults/shadow sides, whatever you want to call them. All we can really do is try to take a step back and watch ourselves, touch with gentle awareness our imperfect selves doing our imperfect best, and offer up for healing that which isn't in balance.

Wednesday, June 5, 2013

A Guest Post



hi carrie its kara and i want to tellyou thank you for doing that for me and  i know im famous i ,love being famous and i love to write a lot when i write i like to write down the hoel would and i live to write  i love it alot  mabe you can put this on your blog again i like being on your blog so people can read what i have to say its my thing i love to write and i love to type a lot on my labtop  so this is going out to you now im going to be 32 in the fall in  november 20th im a fall baby  and i love being born in 1981 so i can write down my memberies and i can write it down in a note book  i lve to write your writer kara romanaggi

A Cure for All that Ails You

Sometimes you just have to say Flicka Link three times really fast, and call it a day.



Monday, June 3, 2013

The Girl Likes to Sparkle

If we're ever going to change the way people think about those with different abilities, it has to start with the way those with different abilities, think about themselves. It ripples from there. I just had to share with you something my friend, Susan, shared with me, that her daughter, Kara, wrote. Kara is not only "ok" with her differences, she is grateful for them. Without further ado, I bring you Kara:

im not ateenager any more now im now adult now and im 31 now so  thisis from my heart and i love you alot mom  i want you to know that  because you are the best mom  love kara your first daughter im so lucky you hade me and you gave me down syndrome beacause you made me verry verry special and that is why  you gave me dowsyhdrome  becacuse i mean alot to you  im you first daughter with down syndrome and  you gave me something special and that was freedom  and now im taking  trimet now and i love it alot i love my feedom  and i love you  and i have lots of people watching over me and i love it alot and you will always be part of my life your my mom and i love you alot love kara your daughter

If you can't get enough of Kara, and who can? here's a short YouTube video that will only take your smile from big to gigantic:

Saturday, June 1, 2013

Great Expectations

I spent all day Thursday at a special-needs conference entitled, "Great Expectations." It was meant to be a shot-in-the-arm, there was an explanation of codes and services, what we can expect during the 18-21 transitional years, and ultimately, beyond that. The crux of it was that even though the statistics are depressing: 80% of people with disabilities are unemployed, work is possible for everyone. We spoke of such things as Person Centered Planning, thinking outside the box, perseverance and tenacity. Hard to believe there was a parent in the room that wasn't all too familiar with perseverance and tenacity, but the target hit the mark, and I think most of us left with a renewed sense of it's going to be ok, and I can do this.

We heard two remarkable stories of young men "experiencing" disability. That was the term-of-the-day and while I appreciate what they were going for with that one, I am going to stick with "having" a disability, because that does not exclude the fact that all people "with" disabilities are much more than their disabilities, and regardless of how impacted they are, they have gifts, strengths, interests and abilities, too. Speaking of which, one of the men, now 32, was not born with a a disability. He nearly drowned at age two, was in a coma for seven weeks and in the hospital for two-and-a-half years. He has a traumatic brain injury (TBI) and acquired cerebral palsy. He is non-verbal, and virtually quadriplegic. He has some movement of his arms but it is involuntary. He can move his head and indicates yes by looking at his right knee, and no, by looking at his left. He uses computerized communication devices and is quite adept at letting his wishes be known. At seventeen he told his mom he wanted a summer job, just like his three siblings. Her internal response was, what could you possibly do? She now works tirelessly with other families helping them shift this paradigm and get their family member employed. Her son eventually went to work for Powells.com. He works five days a week, four hours a day, at a competitive wage (which I think is actually minimum wage, but not sub-minimum wage like many people with disabilities). He has held the job for FOURTEEN YEARS. He has an assistant with him that is paid through state funding, but Powells pays this man. With special computer technology, he scans books that are going to be shipped from Powells to online buyers, and gets the scanned information into a computer system, all by turning his head left or right, accordingly.

He loves his job, but it wasn't enough. He wanted to give back to his community. He started a Free Little Library with the help of his father, and two afternoons a week he goes into his local public grade school and early readers read to him to practice their reading.

The other young man is twenty and has Down Syndrome. His is a twin, and his brother was going to leave home and go to college, and he wanted to, too. With some support, but a lot of his own initiative and again, tenacity, he is now living 100 miles from home, in student housing (a Christian, college-age youth center and co-op). He got the ball rolling with a transitional IEP in his new town, and is receiving transitional services while he works to prepare to enter the local community college. He took the entrance exam and missed qualifying by one point. Not to be discouraged, he is studying so he can take it again. The boy wants a post-secondary experience.

Ain't nothing going to stop him from having one.