LOVE My Live

Ok, I'm stepping up to my sister's challenge, let the MBA begin! :)

Phoebe had been discouraged because Christopher didn't return her silly/gruff "I Love You" as readily as he had returned mine, but I told her that it took me three days (a slight exaggeration), and that seemed to bolster her determination. Finally last night Christopher did tell Phoebe "I Yuv U 2" and it put a big smile on her face. I long for genuine Phoebe/Christopher sibling interaction almost as much as I longed to hear Christopher's sweet little voice, it warms my heart to see the early signs of that developing relationship. :)

Well, actually, it was "I Yuv U!" :) I noticed recently that I get his attention quickly and easily when I use my super-silly scrunched-faced gruff voice, and that it encourages him to repeat what I've said, so on Friday I started with that silly/snuggly/gruff talk, and in short order he replied back w/his equally-silly scrunched-faced gruff "I Yuv U!" I am one happy Momma!

Art News (Italy) - April 2011

My dear sister has finished her first degree and is going straight into her master's program. It's inspiring. She's actually got me considering an advanced degree for myself too. Going to school might actually be easier than keeping up w/my student loan! Plus, I never intended to go this long without continuing my education. Hm...

I've signed up for my first Autism-related activity, a 5k run/walk on Sat 10/22. I'd be honored if people walked with me. I'd be happy if people donated in support of my efforts.

Christopher is adding new words to his vocabulary so fast I can barely keep up! :) Many of his words are difficult to understand, but some of them are clear as day despite his mispronunciations. His most adorable recent addition is "Oops!" which he started after very deliberate "accidental" falls - he'll run run run, then sit down quickly and say Oops! Or he'll walk up to you with a big grin, turn around and back into you and say Oops. Or very deliberately knock something over and say Oops. He leaves out the 'p' tho, so he's saying Ooo's, which sounds like Ooots. He's the cutest thing ever. ♥

Gabriel Toso
He Who Loves – He Is One of Us
London, September 2011

[more texts about Franko B can be found at www.franko-b.com/text.htm]

I still remember the first time I saw Franko B. It was in a book illustrated with photos taken during one of his live performances. Franko was naked, covered with bodily fluids. Jaded, ready to drop. Towering next to him like an amused crane was a girl dressed as a nurse; or as a patient. The caption that accompanied the image was taken from Eroticism by the once described “metaphysician of evil”, Georges Bataille “Man must be aware of the things which repel him most violently – those things….are part of our nature”. I was 19 years old and confused. But inquisitive too….

That first visual encounter with the artist is still vivid in my mind, but the reason for it took a while to decipher. It was not the disturbing elements of the image, no, but rather the tender gaze, the amorous gestures and the fragile body. A mass of gentle emotions wrapping my mind, like a caress.

And now, fifteen year later, I know the man behind that photo and that gentleness is still present and alive. Indeed, having peeped inside the world of Franko B, I am wondering how can it be described as ‘disturbing’ - unless we find disturbing our own feelings. Franko’s work is a reflection of our emotional states. And yet, we find it initially difficult to relate to it. It employs the same alphabet but the language appears different. But is it really? Art critics, art journalists and the public at large have the tendency to think of artists as something different. Messianic and godlike or evil and immoral. Or just plain different. They are different than us, right? And then it hit me. Franko B, the visual artist and performer, is not a special entity or a frightening creature of dark fairy tales. Franko B is a man. He is made of flesh and bones, and has a heart and a soul. He sleeps and breathes, he eats and drinks, he walks and speaks, he pisses and shits, he cries and laughs, he fucks, he loves. Franko B is like me, like us. Franko B is one of us.

I remember Franko recently taking part in a conversation with a renowned art historian/book writer, a kind of vicious ferret. The guy was more interested in his own work (and Ego) than Franko’s. At the end he reluctantly asked: “Your canvases, your sculptures, your performances…..your work and life…..why? What is all about?” Silence. And then Franko, with a serious smile, “It is all about relationships”. That hit me again. His words resonated and expanded embracing and wrapping together with a gentle cuddle all of us in the audience. Travelling further, to the rest of the world. Relationships….

Even more recently I was conversing with Franko over dinner. The subject focused on Existentialism. The Big Questions. The condition of human existence and the meaning or purpose of life. At some point Franko B with clarity and conviction announced “ Because of love, that’s why we are here”. Silence. And then it hit me again. Franko B, the man and the artist, loves. All his work is about love. No the kind of spiritual love lost in remote deserts or the physical sensual love consumed in cities but Love as the pure generative universal energy that creates, preserves and destroys everything. It’s the love from one human being to another. And to the rest of the World. It’s the love that encompasses everything. As the arrival of Spring awakes in us the instinctive realisation of the passing of time and the returning swallow announces its love for the season and the land, so Franko’s work is a constant reminder of the eternal truth of Love. And Franko B loves. The words of Thomas à Kempis come to mind “Love flies, runs, and rejoices; it is free and nothing can hold it back….

Gabriel Toso

I typically discard the Scholastic Book Club flyers that Phoebe brings home, but I thought maybe I'd share Phoebe's reading interests in case anyone would prefer to buy books instead of toys for future gift-giving occassions. Sign up at www.scholastic.com/bookclubs and click "Register" in the "First Time Here?" section. Register for your own user name and password. When prompted, enter the one-time class activation code "DVVD6" to ensure orders are sent to Phoebe's teacher. Every online order (except eBooks) earns a free book for the classroom.

She brought home both "Lucky" (Grades 2 & 3) and "Arrow" (Grades 4, 5, & 6) flyers, in which she circled the "Dork Diaries" series, "Scratch It! Jewels", an "Owls Stationery Box", the "Rainbow Magic Night Fairies Boxed Set" and a matching "Paint Your Own Night Fairies Kit". I told her I preferred that she circle actual books, but that others might be willing to buy the crafty/toy-type items, but I would not. September's orders are due by the 23rd.

The party Saturday was a raging success! We had eleven little guests, we started with an impromptu Wii Fit Plus Obstacle Course Challenge, we played Pin the Bow on the Skull (it was a "Monster High" party), we were going to bob for apples (but it was too chilly, the kids snacked up a third of the apples, Christopher bit into each of another third, and we didn't have a suitable bobbing tub), we had a spaghetti dinner, the kids played outside for a few minutes, we opened gifts, we sang happy birthday and had a grocery store sheet cake upon which I had iced a Monster High skull, and then the grande finale - the kids THOROUGHLY enjoyed strawberries and Dianne's chocolate fountain!

Then six of the eleven spent the night, we had a second round of spaghetti dinner, played with all the birthday presents, played Wii Just Dance 2, probably did hundreds of cartwheels, rough-housed a bit (wait til you see the blurred action shots!), negotiated the sleeping arrangements, setup the sleeping area, and put on the Disney Channel. The younger girls were asleep by 0045, and the older ones probably feel asleep after I set the TV timer to go off at 0130. The younger girls were awake by 0730, played by themselves until they woke me at 0830, the remaining girls woke at 0930, we had a chocolate chip pancake and sausage breakfast, and played more Wii Just Dance until parents picked everybody up at noon. Except Rachel whom we took with us to Aunt Banana's for another cake and another Orbeez present (Yay!), we had to make the girls stop watching TV to play with AJ, had a yummy cheeseburger and tater-tot dinner, and headed home at 1900.  Phoebe showered, Christopher bathed, then we slept. It was an awesome all-Phoebe weekend. :)

I woke up to my cell phone ringing loud and clear on the other end of the phone was my Friend. As we talked I still laid in bed trying to fully compose myself from my slumber. The words that resounded loudly after we had our phone conversation was "Wake Up".

So many of us are sleeping and are not conscious of what has taken place around us. We are walking in a lifeless state as if we were zombies, no brains just cobwebs occupying the space between our ears. I begin to think of songs orchestrated by musicians like Teddy Pendergrass with Melvin and the Blue Notes "Wake Up Everybody", it sirs something in my soul. The soul needs to be awaken with the consciousness of knowing we are dying and the world around us is becoming mutilated. We live in a dying world where in reality no one wants to hear the truth so we feed ourselves and our offspring deceptive lies. We refuse to take ownership for the state of what our life has become. We are too busy being intoxicated by the schemes and scams that has detoured our soul...Money, Status, Haterism, and other non significant things or people that add to the nonsense. Every color and race seems to suffer from this state of "ignorance". Black American , White American, Latinos and more have not become conscious of what has plagued us as the world turns on its axis. Some cultures are beginning to rise up from their sleep and joining the Insomnia Movement. However other races, such as African Americans still play into stereotypes, as we have enslaved ourselves to become the slave of all races. The truth shall be televised but has been sugar coated and water down to feed it to the people who cannot handle the truth. When will the revolution begin in our minds? When will we understand the damage that has been done to the world around us? When will we see how much our children are suffering from the lack of discpline in the home and uncivilized structure in the home? Single parents we got to join the insomnia movement, we can no longer act like the man and still think like a woman. We have to act like the lady and be the feminine sista God created us to be but then we wonder why homosexuality runs rapid in our community. The truth is no one is teaching the little boys how to be men and little girls how to be women. Homosexuality is not a contagious outbreak but a disease that has killed the hope and dream of brothers and sisters of all races who want a chance in life. Homosexuality has caused many sistas and brothas to be bashed and set apart from the world around them. If truth be told we need to ask them where did this parasite root begin and not bible beat but love them. God created us all equal but it is okay to not to agree or accept the lifestyle due to spiritual beliefs or personal beliefs but is never okay to hate, kill or murder someone for the choice they have made in their sexuality. What if God condemned us for being fornicators, smokers etc.? The God we serve is a God of love and he gives us the law of free will. The best thing to do is pray for those who may be lost.

If love is contagious then we need to spread more of it and up root the seed that has caused damnation to our next generation...Black people, white people, brown people, and may more races "WE ARE CHALLENGED TODAY AND EVERYDAY TO....WAKE UP"!!!

WE CANNOT SLEEP UNTIL WE WAKE UP. ~Stylicia A. Bowden~

We also had a neurological evaluation this morning at CNMC. Their assessment, basically, is that his hand thing is most likely not neurological, but more likely typical autistic self-stimulation. If he were entering some altered state of consciousness during the tremor, or if it was exclusively one side, or if it was whole-body, then perhaps they would be more inclined to suspect seizure activity. But because it's so focused, and because his schedule has changed a lot lately with the new school year, they are inclined to think it is just self-soothing. The tremors also seem to be subsiding as suddenly as they onset, which also contributes to the theory that it's not neurological. They started Saturday, maxed Wednesday, and we haven't seen any yet today. We will continue to watch him closely ourselves, and are scheduled for a two-month neuro follow-up, at which time we might schedule an EEG if he continues to have any worrisome symptoms. Phew.

We saw nutritional biochemist Dr. Laura Power yesterday. She was amazing. I was impressed with both her knowledge of and passion for the science of nutritional biochemistry. It was mostly an observational evaluation, because Christopher has never had any blood work done which she could review. She did order extensive blood work, a complex urinalysis, and a mineral hair analysis - all of which will take a few weeks after we have his blood drawn and collect the urine and hair samples and send those all off to the labs. She seemed confidently optimistic that we would see improvements in Christopher once we identified any deficiencies and started a supplement program.

Here is a short video in which Christopher's hand is just spasming away.

I noticed Saturday that Christopher's hand was flinching. His right hand was open, but fingers curled, it was kind of an open-fisted spasm. I noticed it several times Saturday and Sunday. When I mentioned it to JR Sunday he said that he had seen it, but thought it was a sign of frustration, we didn't speak specifically about when we had each first observed it. I did email his Pediatric Developmental Specialist, Dr. Pratt, to report the onset of a new symptom and to request a neurological evaluation. When I got home yesterday I observed that it was already obviously more often and more intense - a triple-flinch vice a single-flinch - and I saw it in both hands. I spoke with JR to get clarification on how long ago he had noticed it, and he too had only seen it this past weekend, and we are both alarmed with its apparent quick onset. I emailed Dr. Pratt again this morning to relay my sense of urgency, and she said to tell the neurology department that she said it was an urgent matter so that we could be seen sooner than later. Well the neurology department said their first availability wasn't until Dec 21st! So I am waiting now to hear back from Dr. Pratt to see if she can't get us in sooner than that - more like immediately. If she can't, we will seek a neuro consult elsewhere.



I often speak to Christopher as if he perfectly well understands me. He might. Probably not, but maybe. I told him yesterday that we can deal with whatever he decides to throw our way, but he's not allowed to get worse -  only better. Hopefully he's onboard with that plan.

I must be getting old.



Once upon a time I was strictly a heels 'n hose girl, I wouldn't even wear shoes that made that awful flip flap sound, much less a pair of actual flip flops. Then I went to the shipyard and gave up on hose, but still avoided shoes that went flip flap - except one favorite pair of heels that was dressy enough to overlook that most unprofessional sound. Then I returned to DC and somehow lost my last shred of femenine professionalism, and spent this ENTIRE SUMMER - work included - in a pair of black gemmed flip flop thongs. Which has resulted in an uncomfortable case of plantar fascitis (self-diagnosed).



The Spondylothesis was medically diagnosed, over a year ago, with some arthritis and a bone spur to go with it, but I don't do the exercises I'm supposed to do to strengthen my core, so it's not improving.



Nothing like back pain to make a girl feel old! And the plantar fascitis makes me hobble around in the morning, feeling weak and unstable. My caffeine and nicotine breakfast habit doesn't help much either. I really need to invest in myself - the time, energy, and smart decision-making to make me FEEL better.

I didn't spend much time today thinking about 9/11/2001. I let myself stay busy with the kids instead, and even took a nap with Christopher. But that beautiful Tuesday morning will never fade from my memory. I was on a shuttle bus from the Pentagon to Rosslyn when we heard about the 2nd plane hitting the Towers. An Air Force guy on the bus expressed his hope that it was a flying accident. I remember thinking how optimistically naive that was, and wondering if he really believed that. I was supporting the Dual Use Science & Technology (DUS&T) Program, an OSD program under the Director, Defense Research & Engineering (DDR&E), whose offices were temporarily located in Rosslyn due to ongoing Pentagon renovations. I don't remember the details of my day, but I do remember my friend and colleague, Jan Wilson, who was pregnant with her first child, asking "What kind of world am I bringing this child into?!" Then the plane hit the Pentagon. That was much closer to home than the Twin Towers. We were scared. Were we safe? How many other attacks would there be? Would it last all day? all week? What was happening to our lives? Many people headed straight home. Those of us without our cars stayed at work. We all huddled into the little lobby-level cafe, silently glued to the small television, with slack or quivering jaws and tear-filled eyes. We watched the towers come down, first one, then the other. We could only imagine how many people might still be inside. We couldn't fathom the losses. We had no words. I don't remember how I got home (to very nearby Lloyd Apartments, on Tennessee Ave). I remember talking to JR, he was at AIT and had had difficulty reaching me. I don't remember talking to Dianne, but I think I did. I spent the rest of the day crying and watching the news. I VHS recorded many hours of it, I think I still have that tape somewhere. Planes were grounded, the busy skies grew immediately and eerily silent. Washington National is a VERY busy, one plane per minute airport, the noise of which I had never considered until it fell silent. The only noise from our skies was the occassional military aircraft, deploying to God knows where for God knows what mission. No news choppers. No commercial flights. No cargo flights. Then, when flights did resume, several days later I think, I remember looking up every time I heard a plane, wondering if I would ever see/hear planes the same again (I do, now). I don't remember the rest of that week, surely we didn't return to work, did we? But then eventually we did. We hung our flags. We mourned our dead. We resumed our flights. We went back to work. But it was different. We donated blood. We spoke kindly to strangers. We looked one another in the eye. We embraced our freedoms, thankful to be Americans. Some of us grew angry. Some of us gave up hope. Some children turned into men that week and joined the Armed Services. I wasn't a mother yet then, but I can only imagine the collective motherhood cringed with grief and fear of what was happening to our children. How do our babies, whom I believe are born innocent and pure, turn into the monsters we have among us today.

Christopher recently started adding something that sounds like "Wull Dun" to the end of many of his many ABCs or 123s, I was delighted to learn from JR that he is telling himself "Well Done!" :) It's the cutest darn thing. And lately he's added "Good Job" so it's "Wull Dun Good Job!"

I napped with Christopher both Friday and Saturday - a rare and delightful luxury. When we woke up Friday afternoon, he said "two" which I figured meant we were going to count to ten for the forty-millionth time. With Christopher, in order to proceed from one letter to the next, or from one number to the next, it requires we repeat everything he says. So I said my "two" and was expecting three, but to my utter delight and astonishment, he instead counted by two's all the way to 26! without hesitation! He rattled it off as if he'd been doing it for weeks. I wonder how much else is in there, all ready, just waiting to come out.



And then, even better, in my excitement about that, I asked for a kiss, which has previously always meant he presents his little cheek for ME to kiss, and instead he gave me an actual kiss on the lips! I was so delighted! ♥