Back from Colorado

We left last Saturday for our trip to Colorado. We were more than ready to escape the Texas heat and we were not disappointed. In fact, we were welcomed by snowfall as we drove over the mountain towards Winter Park.

We got settled into the Rocky Mountain Inn and Hostel and awoke the next morning to a very cold rain and gray skies. Undaunted, we headed up to the western side of Rocky Mountain National Park. The Trail Ridge Road, which follows a stunning path along the ridge of the Continental Divide to the eastern side of the park, was closed due to icy conditions. So we explored the western side. We ate a picnic lunch and then walked to the nearby historic cabin, built by a would-be farmer in 1903.

We did some hiking.

This was Tevis' first time to see mountains and he thought they were pretty cool!

We were on the lookout for wildlife and were thrilled to see moose grazing in a thicket near the Colorado River.

The next day we drove the LOOOOOONG way around to the east side of the park, not realizing that the Trail Ridge Road had been opened at noon. But there was some spectacular scenery on the long detour route.

We stopped in Estes Park for a late lunch. I was surprised that it was such a tourist trap...I much prefer sleepy little Winter Park!

And then we began the drive along the Trail Ridge Road. Since I don't like heights, I missed a lot of the spectacular views, since my heart leapt up in my throat when I looked off in the direction of the precipice. We stopped at several of the scenic turnouts.

But sometimes a still photo can't do justice to a spectacular vista.

The last day of our stay dawned with brilliant sunshine...perfect weather for the guys' rafting trip, organized by the National Sports Center for the Disabled. They took off for a great adventure, while I returned to the national park. (Sure wish I had photos of the rafting trip, but of course everyone was too busy paddling to worry about a camera.) I did some more hiking and took some photos in the sunshine. First, Grand Lake was on the way.

I hiked along the beginning of the Colorado River.

The elk seemed to be enjoying the sunshine as well.

And then it was time to return to Texas and 95 degree weather...sigh.

St. Louis---WOW!

This week Jesse and I went on a road trip to check out St. Louis. I had been there once before, at a professional continuing education course, but on that trip, I spent all day in the course, and tried out my luck at the riverboat casinos at night. So I didn't really see much of the city on that trip. So we spent a couple of days trying to see as much as we could. I wish I had taken more pictures of neighborhoods and street scenes, but, given our mobility problems, we weren't able to do much walking.

We went to Forest Park, which has SO many free and interesting attractions. We toured the Missouri History Museum, which had a fascinating exhibit about Charles Lindbergh.

A unique attraction in the park is the Jewel Box, a lovely Art Deco greenhouse built by the WPA in 1936.




Jesse, of course, wanted to pose on the spiral staircase of the Jewel Box.




We took the Metrolink to the famous Arch of St. Louis. I would have liked to take some photos of the stations and platforms, but, of course, that's a big security no-no.



And, lest we forget...



Jesse took the ride to the top of the Arch, but, with my fear of heights, I was quite satisfied to explore the exhibits at the base.



As it turned out, nature provided its own impressive arch after a thunderstorm late in the day.



We took a look at some houses. St. Louis has wonderful, historical houses, with a great variety of architectural styles. Unfortunately many homes have decayed and many have been razed in some neighborhoods, but quite a few have been rehabbed. I really liked this duplex!

I'm looking forward to a return trip in the near future.

My mobile garden

Last summer I was standing in line in the garden center of Walmart, when I struck up a conversation with the woman behind me. I was admiring her flowers and she started explaining that they were an addition to her "Square Foot Garden." "Have you heard of square foot gardening?" she asked. When I indicated that I hadn't, she began explaining the main tenets of SFG, with the ardent passion of a true believer.

I kept meaning to look into it, but only got around to it this spring. I checked out the SFG website and ordered the SFG book from Amazon. I got all fired up and ready to go, but there was one BIG problem. The typical square foot garden is built 9 to 16 square feet...a small space, right? But I literally do not have 9 square feet that get sufficient sunshine all day, much less all summer. With about 25 trees on my lot, and given the ever-changing position of the sun, every promising spot eventually winds up in total shade.

Spurred on by the thought of eating a homegrown tomato, I began to consider possible solutions. Maybe I could make it smaller, maybe I could make it portable...voila, the Mobile Square Foot Garden!

As the Beatles sang, "I'll follow the sun." As the sun moves north and then south during the summer, I can relocate my garden as necessary to try to keep it in as much sunshine as possible.

So I managed to make two squares for tomatoes and one for green beans.

Hoping for a bountiful harvest!

Mother's Day 2010

"The bitterest tears shed over graves are for words left unsaid and deeds left undone."

Harriet Beecher Stowe

This is my first Mother's Day without you, Mother. And I have shed many bitter tears in the last two months. As painful as your last weeks and days were, I was grateful for the opportunity to tell you much that was in my heart. Yet every day, I think of something I wish I had told you, something I wish I had done.

Thank you for the countless things you did for me: sewing all my clothes, leading my Scout troop, sending me to camp, saving to send me to college, etc. There are literally too many things to list, but I remember something different every day.

Thank you for all you taught me: right and wrong, responsibility, to have high expectations for myself and to do my best, to be considerate of others, to think for myself. You can rest assured that if Debbie stuck her head in a hot oven, I wouldn't do it, too.

I wish I had appreciated much earlier in my life how much you had overcome, how much you had sacrificed, how strong you were. You occasionally referred to "during the Depression" or "during the War" or "when I was away at school," but it was only in the last months of your life that I learned of some of the hardships you endured. After Dad died, in spite of your visual impairment, and even after your stroke, you fought to stay independent.

And lastly I wish I had made all of those other Mother's Days more special for you. I know that you didn't care a bit about presents. What you enjoyed most of all was my company. I wish I hadn't been so concerned whether my own children would honor or insult me on that day, and had focused on honoring you.

So today, dear Mother, you may not be here in body, but you are always with me.

“All that I am, or hope to be, I owe to my angel mother.”

Abraham Lincoln

Housing crisis hits home, new direction, etc.

Well, the housing crisis has finally hit home here. A few weeks ago I got a check for about $1000 from my mortgage company, refunding overpayment into myescrow account. I was so pleased at this unexpected windfall, I didn't think about the ramifications of the overpayment. When I got my statement from the county tax assessor this week, I realized that this was not a cause for celebration. The valuation of my house declined about $40,000 in the past year! Now it was over-valued in the past, considering all the rehab and repairs it needs, but this was quite a shocker. It is now valued at the price I paid for it...in 1993.

I finally took the first step on my path to a new career yesterday by signing up for an online course in psychosocial rehabilitation. I plan on taking three courses offered by Boston University, and another two offered by St Lawrence College in Canada. Hopefully I will then be able to pass the exam to become a Certified Psychiatric Rehabilitation Practioner, and by the time the training and certification is complete, I will have had some effective treatment to relieve my spinal problems enough so that I can work at least part-time.

We're looking forward to our trip to Colorado in June, but I have to say that so far, our weather here has been fairly mild. And this is that wonderful time of year when I walk out my back door and the air is fragrant with the heavy sweet smell of honeysuckle, and I walk out the front door and am greeted with the heavenly aroma of jasmine. Texas at its best, in a very brief window of time.

Another year

Friday we celebrated Gabriel's 24th birthday. We went to Texas Roadhouse for dinner and then yesterday we had red velvet cake from our favorite bakery (the same cake we had on most of Gabriel's birthdays---see above) and the presents. In recent years, Gabriel has asked for clothes and he always comments on the irony that, when he was a kid, he never thought he'd be asking for clothes on birthdays and Christmas! For me, the biggest reason to celebrate this year was that it has been a whole year since Gabriel and I have made a trip to the ER.

My bodyguards

Grief, despair, and guilt...

They fill me up and surround me,

Like hulking bodyguards,

They keep others at bay.

"Always so serious,"

"Everything's depressing,"

"Just can't take a joke,"

"I want to run away."

Well, this is how I am,

Take it or leave it,

And if you leave, just know

I know how to be alone...

Alone through great sorrow,

Alone in solitary vigil,

Alone in darkest despair

When not a single light shone.

I just wish I could sleep,

But when I lay in bed,

Images of pain and death

Play and repeat in my brain.

If someone would listen

And put an arm of comfort

Around my weighted shoulders,

Perhaps that would ease the pain.

Violets

I brought you two pots of violets

To brighten up your room.

One was laden with pure white flowers,

But the other had yet to bloom.

I put them on the window sill,

Where they caught the winter light.

You smiled and said, "That's good,"

Pleased by the homey sight.

We considered the barren plant:

What color would the violets be?

"I don't know," I told you softly,

"I guess we'll just wait and see."

Simple words, yet carefully chosen,

I wanted us to share expectation,

To look to a future, to hold out hope,

To banish death from consideration.

Now you're gone, the white blooms have withered,

But now pink violets have burst from the other.

Their beauty brings me bittersweet pleasure,

If only you could see them, too, Mother.

My mother's hands

Her hands are gnarled and deeply veined,
Their trembling now is still.
At unaccustomed rest they lie,
From work at last released.

Childish hands in younger days
Knew the toil of country life:
Feeding chickens, toting water,
Planting, picking, shelling, shucking.

Shell shocked soldier and Great Depression
Conspired to send her off to school.
Her hands not only wrote her lessons,
But also worked for room and board.

Independent, self-reliant,
With the inner strength her mother taught her,
With determined hands she pushed
The confining limits placed on women.

A mother's hands worked ceaselessly,
Keeping the house, keeping the books,
Sewing thousands of straight, true stitches,
Guiding her children with a straight, true heart.

In later years, her weary hands
Of necessity took over other tasks,
As touch replaced her fading vision,
And gestures augmented her jumbled speech.

Through her pain and through my sorrow,
Our hearts spoke all they had to say.
Her hands grasped mine with newfound strength,
At once both gaining and giving comfort.

And then those precious hands grow cold,
As we look into each other's eyes.
And yet, even now, I feel their warmth
As Mother's strong hands guide me home.

Esther Adams Gregory 1918-2010

The eulogy, a group effort by the family:

Esther was a Christian who believed and taught her children that religion was a private matter and that one witnessed one’s faith by practicing the Golden Rule. Her code phrase was “Don’t hurt anyone’s feelings.” She was born and raised her children during segregation, but neither expressed nor instilled in her children racial prejudice. Her mother told her always vote for the Democrat. After marrying a federal civil servant from a staunchly Republican family, she rarely expressed her political views until Ronald Reagan’s policies toward retired federal employees had transformed her husband Newell into a Democrat as well. After surgery in early 2001, she told every healthcare worker that she was counting on them to see that she recovered because she needed to live to vote again in 2004.

Esther graduated from high school and entered junior college at age sixteen. It was there that she met the love of her life Newell. Each was walking to vespers with others from their respective men’s and women’s dormitories. When the groups met, they paired off into couples. When he and Esther were the only ones left, Newell remarked that it appeared that it was the two of them. Esther thought he was being a bit presumptuous but reluctantly agreed to walk with him. Telling this story, Newell always added that Esther was the only woman who would have him. Esther and Newell honored her mother’s request that since they were so young, they wait one year to marry. They were married for sixty-nine years. On Valentine’s Day, they would go to the buffet restaurant that they frequented. That day lunch was free for couples married at least fifty years. It was not the free lunch, but the opportunity to announce how long they had been married that drew Newell there.

Esther knew adversity and hardship early in life and overcame it through independence and self- reliance. She and Newell raised their children to be equally independent. After years of being Newell’s ears and he her eyes, Esther returned to independence and self-reliance upon his death. More than anything else, she wanted not to burden her children. Next most importantly, though legally blind, she counted on the continuing judgment of her ophthalmologist from his very first diagnosis of her macular degeneration that she would never be completely without vision and require a full-time attendant.

After her marriage, her children, grandchildren and great-grandchildren, Esther perhaps found the advancement of women during her lifetime most gratifying. As a young woman, her mother had returned to Oklahoma from a properly chaperoned trip to visit relatives in New York City to announce an intent to move there and support herself as a secretary. Esther’s grandfather had forbidden her mother from doing so, declaring that no daughter of his would ever be any man’s secretary. Esther’s mother subsequently taught bookkeeping to men attending business college but could not obtain bookkeeping work herself because she was a woman. By her death, Esther had watched her and Newell’s daughter, granddaughters, nieces and great-nieces pursue whatever careers they chose. In 1984, considering it historic for women, she stood for hours at a rally to hear Geraldine Ferraro campaign as Mondale’s vice-presidential candidate. In 2008 she watched Hillary Clinton compete for the presidential nomination. She transitioned from signing as Mrs. N.W. Gregory to signing her own name and from being “et ux” to being one of the named owners of real estate. When advised that contrary to the apparent custom, her first name had been inscribed on the left side and Newell’s on the right of the plaque marking their couple’s tomb, she responded that if her name was indeed first, it was for the first time ever.

While gratified by the opportunities that opened for women, Esther herself wanted to be a full-time wife and mother. She stretched Newell’s income by employing the home economics which she had studied in junior college and by carefully managing their finances. Her brother-in-law told everyone he knew that if Esther’s sister Jimmye had managed money as well as Esther, he would have been able to retire as a very young man. At one point, Esther studied for and earned a real estate license. Upon realizing that the prime hours for showing properties would be after school, she decided that her family needed her more than whatever income she might earn.

After Newell was drafted, Esther and Scotty spent part of the war living with her mother and sister. Newell’s sisters and sisters-in-law were similarly gathered in Muskogee. The bonds and friendship among them all were forever strengthened as they assisted and supported each other.

Her children thought she authored phrases like “Don’t run with that – you’ll put your eye out.” “Eat your _________. There are children starving somewhere in the world.” “Of course you can’t have a BB gun. You’d put someone’s eye out.” Somewhere in the ozone there is a trove of water guns, pea shooters, Spud Guns, bean flips, sling shots and such. They all disappeared at her hands. Why? Well, of course, they could put someone’s eye out! If one dared use the argument that “Johnny is doing it,” the response would be, “Well, I’m not Johnny’s mother.” Or “If Johnny put his head in a hot oven, would you put yours in too?”

Her daughter-in-law of almost fifty years says that had she looked the world over, she would never have found either a mother-in-law or father-in-law who could have treated her any better or accepted and loved her anymore.

Setting opinions about fashion aside, her grandchildren remember her love, acceptance, support and belief in them. Within her own family, she was truly able to judge a person not by the color of his skin...or his disability or his sexual orientation...but by the content of his character. And, after so many years of being on the receiving end of Grandma's kindness, some of them learned the satisfaction of giving back, by helping her in many small ways after Granddad's death.

Her great-grandchildren remember their and their Grandma Essie’s mutual love but maybe not her exclaiming that they were trying to jump out of their skin or her thinking that Gramps was buying them too many toys. She was proud of their accomplishments, such as earning their Eagle Scout award, and loved to be included in discussions of their college plans.

Newell’s nieces and nephews recall her as tough but kind and dear.

All of her family loved Esther and will miss her so very much.

Advocate for Medicare therapy services

Today my mother's physical therapist informed me that my mother will be discharged from PT this Friday. This was frustrating to hear, since this is the first week my mother has really felt well enough to benefit from therapy, and after 6 weeks basically spent in bed, she definitely needs therapy to increase her strength and endurance for walking and independence. So why is she being discharged? Because of the Medicare Therapy Cap:

Medicare Therapy Caps to Return in 2010 Without Exceptions (At Least Temporarily)
The Medicare therapy caps will return on January 1, 2010, although the policy will likely be in place for only one month as both health care reform bills that were passed by the House and Senate contain provisions to extend the exceptions process. These bills are being merged together for a final vote which congressional leaders have said they would like to have completed prior to President Obama's State of the Union address in late January.

Until that time, the Centers for Medicare and Medicaid Services (CMS) have reported that speech-language pathology and physical therapy will continue to share a combined cap of $1,860, with a separate cap of $1,860 for occupational therapy. As before, the cap does not extend to services provided in hospitals. Settings impacted by the therapy caps include private practice, rehabilitation agencies, skilled nursing facilities, comprehensive outpatient rehabilitation facilities, physician offices, and Part B home health agency services

Please, friends, contact your representatives and Senators to encourage them to pass the "extension to the exceptions process for Medicare therapy caps."

Colorado Bob is fundraising for Shelterbox - JustGiving

Colorado Bob is fundraising for Shelterbox - JustGiving


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As the end approaches

My mother has been in the hospital for several weeks now. She had surgery, and after a few days, was sent to a skilled nursing facility for rehab, to regain her strength and her mobility. Her plan was to be home in 7 days (she's a tough little lady!). But after a few days there, she seemed to be declining. I called her on New Years Day, and I didn't even recognize her voice at first, she sounded so frail. I rushed over to the SNF, and, after spending a few minutes with her, listening to her cough and laborious breathing, I told them to send her to the ER. She was admitted to the hospital with a heartbeat that was way too high and irregular, plus a mild case of pneumonia.

On Sunday, she seemed to take a turn for the worse. It was so alarming to me and so dramatic, that I sent a message to my brother, telling him that it would be good if family members could call her that day. I really thought the end might be approaching.

When my dad died three years ago, it was sudden and unexpected. He went about his business that day: gassing up the car, checking his email, calling his sister. That evening, he died in his recliner, watching TV. We knew this was how he would have wanted to go...no hospitals, no lingering. My mother remarked many times that it would have eased his mind so to know that this was how the end would come. But, because his death came unexpectedly, I felt a lot of regret that I had never told him the things I wanted to say.

So on Sunday, I sat there next to my mother's hospital bed, as she coughed and gasped for breath and moaned, fearing that death might be near. But I couldn't bring myself to start THAT conversation, because I feared that she would think I had given up hope. But obviously she was thinking the same thing, because she opened the door for me by telling me that she wanted me to have her car. Once she said that, the tears welled up, and I began to tell her so many of the things I wanted to say....as did she. It was a conversation I will never forget.

Fortunately she turned the corner the next day and has continued to improve. She is supposed to be discharged back to the SNF today. I'm hoping that she is able to return home, and that when the end does come, it will be sudden...no lingering, no hospitals. But this time, I won't be left with the regret of things unsaid.

The ghosts of Christmas: past, present, future

OK, I admit it...I'm a melancholy sort of person (otherwise known as clinically depressed). So as Christmas approached, I found myself focusing on all our Christmas traditions that have fallen by the wayside as many of my kids cut me out of their lives. Of course, with so many children, the excitement was palpable, and it looked like Santa had left a whole sleighful of presents under our tree. I made such a conscious effort when they were younger to build our traditions, thinking that, as adults, they would return home for the holiday or at least would continue some of those traditions themselves. But as we dealt with all the turmoil and tribulation of the teen years, the traditions were painfully stripped away, piece by piece. Attachment disordered teens often did their best to ruin the holiday. When we hung stockings, the numbers dwindled, as troubled teenagers ran away or refused to come home from residential placements, and young adults left and never looked back. Fewer and fewer decorations and lights were put up. There were some Christmases in recent years when my depression made the thought of putting up a tree or cooking a big dinner seem overwhelming, especially the year my dad passed away in December and Gabriel was in the hospital for 7 months, or last year when my mother had had a stroke and Gabriel was actively psychotic. This year my mother has been in the hospital and was transferred to a skilled nursing facility a few days before Christmas, so I really gave little thought to Christmas until I suddenly realized I had two days to shop and plan a dinner.

So I've been in a very "humbug" mood, until yesterday, Christmas Eve day. I had heard rumors earlier in the week about the possibility of snow, but, like most cynical Texans, I've heard too many dire warnings about impending winter weather events, only to be disappointed (or relieved) when they totally fizzled out. So I was flabbergasted when it began to snow...and snow...and snow. It snowed for a solid seven hours. And with winds gusting up to 40 mph, it qualified as a real, honest-to-goodness BLIZZARD! The weather folks assured us that there wouldn't be any accumulation, since it had been almost 80 degrees on the 23rd, so the ground would be too warm. WRONG! With such an uncommon snowfall on Christmas Eve, I began to feel quite festive! And this morning I awoke to my first real White Christmas! The last white Christmas on record in Fort Worth was in 1926!

So we had our quiet little Christmas. The gifts were modest, but the boys were pleased. The house was cluttered, but there was no one to criticize me for that. For so many years, I tried to teach my kids that there was more to life than material possessions, but the culture and their peers taught a different lesson. I like this Christmas Present, stripped of the excess, the frantic feeling, the emptiness that can never be filled. The one thing missing was my mother's presence.

As for the Ghost of Christmas Yet-to-come...I don't want to look at what that spirit has to show me. The empty chair today was enough to make my eyes turn away from that vision. For now, so much better to live in the present!

Forever Young...a blessing for my family

I just finished a little project I've been wanting to put together: a slide show of my family, to Bob Dylan's "Forever Young." I love this song...it's such a powerful blessing to bestow on anyone. So I've been going through my huge box of photos that never got put in albums. It was hard to narrow down the selection and laborious to scan them at Walgreens.

I have to admit it was a bittersweet experience to go through all these pictures. After all the severe behavioral and emotional problems many of the kids had during their teen years, and which many continue to have in young adulthood, sometimes it's hard to remember all the good times. But the pictures don't lie...there were moments of great joy, adventure, fun, and love. I was determined that all my kids, despite their disabilities, would have a normal childhood, including not only the fun parts, but the responsibilities, too.

Five of my children no longer keep in touch with me. I've tried to include at least one picture of each kiddo, but my focus was on the ones who remain part of our family life...the ones who learned some of the values expressed in the song.

Craving conversation

Human speech is like a cracked kettle on which we tap crude rhythms for bears to dance to, while we long to make music that will melt the stars. Gustave Flaubert

There are times when I would give anything for a normal, free-flowing conversation. I spend most of my time with my family members who have some type of language disorder.

There's Marcus, who suffered a severe traumatic brain injury at the age of 2. The left hemisphere of his brain was so damaged that now, according to his last CAT scan, there is very little brain tissue left on that side and it has been replaced by cerebrospinal fluid. So I guess it's a testament to the plasticity of a young brain that his right hemisphere took over the language responsibilities. He is able to understand a great deal of what he hears on the news, especially with the extra visual input of the video, and sometimes he surprises me by some fairly sophisticated vocabulary he uses. But his ability to pronounce words is impaired, as is his grammar. He has difficulty with memory and often fails to understand something simple I'm trying to tell him. He also has a habit of using a very repetitive, circular type of conversation, in which he basically says the same thing in about a dozen slightly different ways...a habit that really tests my patience at times.

Gabriel, as I have mentioned before, tends to obsess on certain topics like the Mafia, the Queen of England, rappers and gangsters, etc. His hebephrenic schizophrenia also causes him to be on the silly side, so he'll make really silly jokes over and over again. For example, he says, "Coolie (the dog) was making gang signs," and he thinks this is hilarious. He jumps from topic to topic, in a schizophrenic stream of consciousness. His memory skills are very poor, so he asks the same questions he asked yesterday, or even earlier in the day, because he has literally forgotten the answer or that he even asked the question before. I try to engage him in more normal conversation, but often my efforts are met with a total lack of affect and/or interest. When he's quoting someone, for some reason he assumes a very high pitched voice, and has taken to flapping his hands when he's talking as well.

Tevis, who spends most weekends with us, is a different challenge. He has the WORST stutter/disfluency I've ever heard, repeating the beginning sound or word or phrase up to a dozen times. He has a certain amount of apraxia and a very nasal quality to his speech, so he is pretty hard for most strangers to understand. He also asks questions repetitively, ones he has asked a hundred times and knows the answers to. (I personally think special education teachers inadvertently reinforce this, as they are constantly asking their students questions to test their skills and knowledge, rather than simply conversing with them.) And he thinks he has to be talking about 55 minutes out of every 60! But, to Tevis' credit, although he has a measured IQ of about 40, he has a lot of common sense, is very observant, is tuned into other people's feelings, and has picked up a lot of information he's heard. For example, when I told him that we might move to St. Louis, and they have more snow up there. "You need to get a car with 4 wheel drive, in case we get stuck in the snow," he opined. In some ways, he's more functional than Gabriel, which makes me very sad.

And then there's my mother. I remember the days, when the kids were young, that I used to call her every day, just to talk, blow off steam, get advice. As she got older and a little more cranky, I called less often, as I wanted to avoid her complaints. What wouldn't I give now to have a normal conversation with her, complaints and all? Her stroke last year left her with Wernicke's Aphasia. She understands what is said to her, and knows what she wants to say, but much of what she says comes out as gobbledy-gook or the Jabberwocky of Lewis Carroll. I call her and ask how she's doing. She can now answer automatically, "Oh, pretty good." But then she continues, "I was just lasting here frankly on the clasp. The man was spelling the sepler today, and it was something, but we got it done." Somehow I understand that she is sitting on the couch and that her personal care aide came and did the laundry, which there was a lot of. I often think of that scene in "Saving Private Ryan," in which the young medic, sitting in a darkened, deserted ruin of a church, talked about how his mother would come home from the late shift and would want to talk with him. "She'd stand in the doorway looking at me... and I'd just keep my eyes shut. And I knew she just wanted to find out about my day - that she came home early... just to talk to me. And I still wouldn't move... I'd still pretend to just be asleep. I don't know why I did that," the young soldier says quietly, with pain and regret in his voice.

Even when my other kids lived at home, it wasn't any better. I had the "cocktail party" speech that is a feature of Non-verbal Learning Disability and hydrocephalus/spina bifida. I listened to the circular reasoning of Fetal Alcohol Effect. I tried to tune out the insults of a sociopath. I was bombarded with the emotional abuse and the narcissistic monologues of a borderline personality. And I had to use intense concentration to understand the language of severe spastic/athetoid cerebral palsy.

When I was working, I used to have the opportunity for normal conversation sometimes. Now, I didn't get much of that from my co-workers; the "Me-generation" doesn't engage in much give-and-take with anyone twice their age, it seems. I did enjoy conversation with some of the parents of my patients, especially those who were closer to my age. But we were under instruction from the agency to refrain from conversation about our personal lives, so I felt some restraint in my interactions. Some parents....well, let's just say there wasn't much to talk about with them, like the mother who complained when I dared to take a whole week off when my dad died. But now that I'm not working, my interaction with others outside my family has been limited. OK, I admit it, I'm something of a hermit, though not entiredly by choice!

To my readers who have children who are non-verbal, you might be thinking, "What is she belly-aching about? At least her kids are able to talk!" I know that I am very lucky that all of my children, even the ones who have very significant disabilities, are verbal. It's just that sometimes a little normal conversation would "melt the stars."

Poem for World AIDS Day 2009

For all the sons and brothers,

For all the sisters and daughters,

For all the friends and partners,

For all the lives touched by AIDS,

We remember.

For all the unknown homeless,

For all the famous celebrities,

For all those surrounded by family,

For all those who suffer alone,

We remember.

For all the poetry unwritten,

For all the songs unheard,

For all the voices silenced,

For all the work unfinished,

We remember.

For an end to prejudice,

For healthcare for all,

For compassionate support,

For a real cure at last,

We hope and pray.

The dark cloud to the silver lining

For the last couple of days, we've had the pleasure of Gabriel's company during our normal waking hours. Usually he wakes up after midnight, stays up for only 6 or 8 hours, and goes back to bed in the morning. Needless to say, this is not a very good schedule for him, as it limits his socialization with the family, his activities, his exercise, and his regulation of his diabetes. But it has been a very difficult pattern to break. But since he got up for an early Thanksgiving lunch at my mother's and stayed up the rest of the day, he actually managed to stay on a more normal schedule for two days. I was feeling pretty good about this, and tried to give him some positive feedback ("great to spend some time with you, do you like getting out more since you're up during the day, etc").

But last night I realized that this might not be as positive a development as I had thought. We went out to eat and Gabriel was fairly morose and withdrawn. During the day he spent most of the time with his headphones in his ears, with his Walkman radio blasting. And in the evening, as I watched TV and worked on the computer in my room, he came in and hung around, talkative at first (more gangster and Queen of England talk, along with other topics). But then i realized that he was sitting silently on the daybed in the room, staring at a fixed point on the floor, then sitting miserably with his head in his hands. I asked if he was OK and he said yes. But then I got more specific and asked if he was seeing things or hearing voices: affirmative on the former, negative on the latter. Questioned further, he said they weren't scaring him or threatening him. But he stayed up until 3 or 4 AM, and that wakefulness often indicates a certain amount of agitation or fear of being by himself. I went to bed with that familiar knot of apprehension tightening in my chest.

Strong foundation

Well, well...it's been quite a week. When I posted a simple statement on the Oak Cliff Bicycle Company site, expressing my opinion that the poster and theme for the Kennedy Assassination Bike Race was in poor taste, and followed it with a blog entry on my own personal blog, I never expected such a furor. Many folks have expressed agreement that the poster was offensive, and a poll conducted on the CBS 11 News site found that 76% of those participating thought that the poster was "A bad idea-It's offensive."

But there has been a vocal minority, mostly young cyclists, who have defended the poster and theme, many leveling personal attacks at me. Most have accused me of wanting censorship, though I never asked that the poster be removed. I have been called a "nosy old busybody." (I guess that means I'm interested in history, current events, and what goes on in my society and community.) Another person characterized me as "a humorless bore." (My friends actually consider me fairly witty, but I don't see anything humorous in assassination, violence, or intentionally causing people pain.) I have been compared to Sarah Palin (scratching head)!?!? My spinal condition and my weight have been fodder for snide remarks, and one person stated, "Her son is a schizophreniac (sic)," as if that were the punchline of a joke.

The most amusing comments were those that suggested that I find something more constructive to do with my time. One such comment read:

Surely, in this day and age, you can find plenty of other things to spend your energy on changing or speaking out against. There’s all sorts of injustices in the world and in our home state. Might I suggest volunteering at the local animal shelter, feeding the homeless on Thanksgiving, visiting the elderly at a local nursing home or something else equally noble to get you away from your computer?

Once I stopped chuckling, I informed this helpful young lady that I had adopted 10 kids with disabilities, raised them as a single parent, provided therapy to disabled kids for 30 years, help take care of my 91 year old blind disabled mother, and have rescued 5 animals from shelters. To both of the people who suggested that I do something to better the world, I asked what exactly THEY had done to contribute to the common good. Strangely, neither responded. It is SO typical of that generation to think they are superior and qualified to lecture someone more than twice their age about how to live their life!

I hope that these folks aren't representative of an entire generation. I see people who are self-absorbed, hedonistic, and amoral. They don't build anything up; they only tear things down. Everything is a joke, and the more insulting or degrading, the better. They don't have respect for anyone or anything. They have the attitude that "anything goes," at least anything THEY want to do. Their mantra is "whatever." To me, they are pathetic: empty, lost souls with no moral compass.

But, I didn't intend for this to be a rant. I must admit, I'm not feeling very charitable towards these folks after all their comments this week. I was sending some mental arrows their way: I hope you have freezing rain for your race, I hope a construction truck drops a case of nails on your route, I hope you get a bad case of hemorrhoids. (Actually I have read one report that the race may have to be cancelled because the organizers did not get a permit for use of the park.)

But, rather than cursing their moral retardation, I'll send them a blessing. This is what I wish for them (in the words of Bob Dylan):

May God bless and keep you always,

May your wishes all come true,

May you always do for others

And let others do for you.

May you build a ladder to the stars

And climb on every rung,

And may you stay forever young,

Forever young, forever young,

May you stay forever young.

May you grow up to be righteous,

May you grow up to be true,

May you always know the truth

And see the light surrounding you.

May you always be courageous,

Stand upright and be strong,

And may you stay forever young,

Forever young, forever young,

May you stay forever young.

May your hands always be busy,

May your feet always be swift,

May you have a strong foundation

When the winds of changes shift.

May your heart always be joyful,

May your song always be sung,

And may you stay forever young,

Forever young, forever young,

May you stay forever young.

Disgusted

Recently I've been pining for the vintage vehicle of my college youth...a 3-speed bike. I see no need for 24 speeds, and every bike I ever bought my kids constantly had problems with the derailleur. So I've been browsing online to check out 3-speed commuter bikes (not easy to find!). My search took me to the site of the Oak Cliff Bicycle Company where I was horrified to find the following flyer for a local bicycle race next weekend.

This flyer is so repulsive to me on so many levels, I don't know where to start. First, I left a comment on the bike shop's site, telling them how offensive I found the poster...and the very concept of the race. I added that I assume that the folks behind the race and poster did not live through that terrible time. The site owner responded: "No they did not. We’re sorry, we honestly do not want to offend anyone but I’m also not going to censor their Flyer."

In my mind, this poster is a symbol of so much that is wrong with our society. It is a reflection of how so many people, especially those of Gens X and Y, have become numb to images of graphic violence. From video games to movies, these young people have seen hundreds, if not thousands, of scenes of exploding brains, steaming entrails, and other gratuitous gore. It also expresses that desire to shock people's sensibilities, just for the sake of being shocking.

In this age of the 24 hour news cycle, when cable news devotes a whole afternoon to live coverage of the Balloon Boy hoax, these folks can't imagine the depth of a nation's despair during the week of November 22, 1963. I remember that, after the assassination and into my high school years, when that ominous voice broke into a TV program and intoned, "We interrupt this program to bring you a special announcement," my heart leapt into my throat, and I braced myself for some bit of devastating news. I was in sixth grade in 1963, and to me the assassination marked the end of innocence, the end of childhood as I knew it. I watched as the caisson moved down Pennsylvania Avenue, and the drumbeat and the clopping of the horses' hooves was the soundtrack of grief. After seeing the widow in the blood-stained pink dress, or watching a little boy on his third birthday saluting his father's coffin, it is impossible to understand how anyone could make that poster for the JFK Assassination Bike Race.

Maybe I should give them the benefit of the doubt. Maybe the people behind this race and poster aren't cruel or sadistic. Maybe they are just ignorant. Maybe all they know about the JFK assassination is what they learned in high school history class, which probably amounted to answering a couple of multiple choice questions about the presidency of Pres. Kennedy. Perhaps this video will give them an inkling, just an inkling, of the scope of the nation's grief.

UPDATE:

The race went on as scheduled, even though the organizers did not have a permit. When interviewed by Channel 11 news, Race organizer, Alain Warchilde, stated: "It's not my art work. It's a cover from the 1978 single for the Misfits; something I felt tied in with to the theme of the race. That's the reason it was used, not to offend anybody… not to upset anyone."

What an absolutely specious argument! The Misfit single Warchilde is referring to is an obscene, even more offensive, song about the assassination. If it tied in with the theme of the race, then the whole thing was obviously intended to offend and upset people!