Projects, plans, sewing, gardening and mulling stuff over

Dr Boucher's blog carnival

2009-09-16T09:03:00.001-07:00

"WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHH"

“What’s that noise”

Madame, it’s the baby. We have just taken him out of your belly. He is crying.

“Nooooh!!! – you are kidding me aren’t you??!”

The anesthetist looks at me with an accusing “you’ve-been-overdoing-the-happy-drug-button-on-the-epidural” expression on her face.

“Non, Madame”

A screaming bundle of blankets was nudged up against my chin … and as my voice addressed it in sheer disbelief, the noise stopped …. He was listening to my voice! My voice comforted him! I saw the face …. the joy! My first child! A son! Oh my!

I spent that entire night staring at his crib in … incredulity. What was this feeling that was taking me over? Sheer joy? Love? It was so commanding! It was as if I had been struck by something so powerful I couldn’t control, yet the electricity racing through me was so pleasurable. Oh I love you William …. A thousand times the words declared themselves in my head …

Not for one second had I ever anticipated that I would love my child. My own mother had always made me feel that motherhood was a tireless, thankless bear, and that love wasn’t part of our relationship. In good Pavlov style, I had just assumed that I would get on with the motherhood thing without enjoying it much either. Never had I presumed that this little bundle of smells would take possession of my very will to live.

In the form of my new son, the Universe gave me a powerful message. Motherhood is love. Love is your children. Life is your children. The message stays with me every minute of the day. Particularly as I now watch William dashing off to secondary school on his little scooter, mobile phone in pocket.... where did that little bundle of blankets that I could sooth with just my voice disappear to? Sigh ….

“WAAAAAAAAAAAAAAAAAAAAHHHH”

I recognized the sound this time. I smiled dopily at the (same) anesthetist, knowing what was about to happen. His face would be plopped next to mine and just like William had done, the sound of my voice would sooth Nathan and he would stop.

(louder) “WAAAAAAAAAAAAAAAAAAAAHHHH WAAAAAAAAAAAAHHHHHHHH WAAAAAAAAHHHHHH AAAAAAAAAAAAAAAAAAAAHHHH “WAAAAAAAAAAAAAAAAAAAAHHHH”

Hmmm …. Not the veteran Mother I thought I was …. Does this mean he doesn’t love me? Hey, Nathan, its Mama …..

(louder again ) “WAAAAAAAAAAAAAAAAAAAAHHHH WAAAAAAAAAAAAHHHHHHHH WAAAAAAAAHHHHHH AAAAAAAAAAAAAAAAAAAAHHHH “WAAAAAAAAAAAAAAAAAAAAHHHH”

The Universe was giving me its second message which I am still hearing today : my children – just like people around me - are all very, very different. Never expect or anticipate their behavior. They will make their choices. They will want to make their choices. Where William is noisy and boisterous, Nathan is poised and calm. Where William is the (often obnoxious) kid at the back of the class sticking chewing gum under the radiator and not listening to a word, Nathan is sat at the front taking in every detail with ease and getting straight ‘A’s. Where William is charismatic and gets noticed everywhere for his charm and good looks, Nathan will often go unnoticed at first but will seal a true and loyal friendship with his chosen ones.

The Universe has sent me powerful messages about what’s important in life..

Message 1: As a Mother, you were born with William.

Message 2: As a person who understands how important “difference” is to a balanced world, you were born with Nathan.

Message 3 : As Alison, you were born with Abigail. You now know what life is about. (I am a technical dunce, and have no clue how to do hyperlinks, but if you want to know more, go read http://alisonmullsitallover.blogspot.com/2008/09/her-delicate-face-was-plunked-before-my.html)

These three messages have taught me that life is beautiful. Each one propels me forward each day, and gives me the strong desire to take a firm grasp of everything life offers me. No stone goes unturned today – I want it all! Thank you, Universe, for sending me your Morse code ….

In conclusion, let me tell you about French number plates. Yes, I am a terrible bore. I am fascinated by number plates in general. Because I live in France, French number plates are my foremost predilection. I often get swallowed up by traffic jams in the morning, and my brain – with or without the rest of me – will scan each and every number plate and stick a word to every letter. Let me explain what I mean:

This is what a typical French number plate looks like :

The standard pattern is : Numbers – Letters – numbers

Those letters in the middle of every number plate inextricably draw me to them every morning, and my brain proceeds to interpret them. Take this one this morning for example :

"WC"! The French word for ‘toilets’ - "Water Closet"

"AEK" – Audrey Ellen Keene – my paternal and favorite grandmother, RIP, who I still love very very much and talk to regularly.

Get the pattern? Well let me tell you something … intriguing ….

When I was pregnant with Abigail (August 2005 – May 2006) I would regularly – as in like once or twice a day – find myself behind a car which would have the “XX” letters in the middle.

“XX”

I wanted a girl. And more importantly, I did NOT want another boy! I never found myself behind an “XY” car. Always an XX.

For the longest time, nobody would believe me. Then I would start pointing it out to people when I was sharing car space. And they too started noticing. And then as the habit took on – everyone I knew would start pointing out “XX” cars to me.

I don’t exaggerate when I say that I saw an ‘XX’ car every day of my pregnancy.

“Mme Bernard, je l’avez votre fille”

I’m at the five month scan. Dr Guetat is telling me I am expecting a girl ..

“Dr Guetat I LOVE you if you weren’t my gynecologist and obstetrician I would jump over this examination chair and kiss you all over” (fortunately, Guetat is impossible to ruffle and never shows any obvious signs of possessing human emotion) (its also fortunate that in France, there are far fewer sexual harassment cases than in other parts of the world or I would probably be behind bars).

As I drove home that afternoon, I lost count of the number of XX cars I drove past. The next day, I parked next to a colleague who had just purchased a brand new car. Guess what her number plate was!

Five months later, this was written on a piece of scrap paper by my newborn baby’s hematologist : “46.XX.del(11)(q2?3)”

All I could see was the XX. The number plates…. had they been trying to warn me? Had the Universe been trying to tell me, all along, that chromosomes were going to play a fundamental part in my little girls life? Although the diagnostic was painful to me at the time, had they been trying to announce the wonderful, exceptional person my daughter would be because of her tailored chromosomes?

This, I will never, really know. But if they did, I know they are right!

Oh - and if you don't believe me - look at the car which overtook me during this morning's traffic jam, as I was mulling over what I was going to write for Dr Boucher's blog carnival - go on, double click on the photo and think about what you see:

Couldn't see it?
Let me zoom in on the number plate for you:

Eerie, isn't it?

Healing

2008-09-29T23:39:00.000-07:00

Her delicate visage was plunked before my sweaty head.
Wrapped gracefully in white paper, the nurse allowed me to touch her with my face and take in her newborn smell. The profile I saw was one of pure perfection.
She was so poised. So calm. So lovely. I was stunned at her petite perfection. Never had I ever seen anything so beautiful.

I was smitten. In mili-seconds.

Cesarean-needs took over and she was whisked away to be bathed as I was poked and prodded a bit more, then stitched up. The big scar that had just been opened for the third – and last – time, was stapled back into place, and left to heal with the help of some antiseptics. A nurse would come by twice a day for the next month to inject stuff into the scar to stop .. um … can’t remember what it was supposed to stop, but it was apparently part of the medical healing process.

Abigail was perfect. She didn’t cry. She never called for food. She would wait until I went to pick her up. So unassuming. So quiet. So peaceful. She was my Princess.

The sky came tumbling down, thudding onto my shoulders at her first pediatrics visit. She lay there quietly, barely moving, as I undressed her. I couldn’t believe how lucky I was to have such a good little girl. Her two older brothers were such bulldozers!

I was sent to the children’s hospital because she had not put on a gramme in her first four weeks. No-body could tell me what was wrong. But there was a strong medical intuition that something was up. It had not dawned on me for one second that there was anything wrong with my perfect, gracious, gentle Princess.

There was a whole lot wrong.

Rushed to hospital, we were taken to Abigail’s room in Hematology. Her brothers couldn’t join us because Abigail was in the child chemotherapy ward and William and Nathan could have infected the other young patients fragile health.

I was frightened this meant Abigail had blood cancer.

Nurses took a blood sample.

Her platelets were so low they didn’t understand how she could still be alive.

She was plugged into some tubes and a blood transfusion brought her platelet levels up. I watched as life began to seep into my little girls face.
It wasn't until that moment that I realized that my daughter wasn't ok.
She had been snow white for the first month I had spent with her.
I had never seen color in her face before. Philippe cried too.

The doctors made it clear that Abigail was very sick. They didn’t know what was wrong.
We were told not to be too optimistic.

I started to have panic attacks. I had never had panic attacks before. Nothing ever phases me. Ever. Except when the Haagen Dacz Macedamia Nut Brittle runs out. A natural optimist, ‘everything is going to be just fine’ is my motto.

Yet I was in a permanent state of panic. All day, day after day. Every time I saw a doctor … my heart would race and my body would burn. Fear took over.
I didn’t understand what was happening to me.
I didn’t understand what was happening to my perfect little girl.

They took a good look at her chromosomes.
We waited ten days for the results.

Abigail’s hematologist was washing her hands as she announced ‘they had found something’.

My heart started panic-pounding throughout my chest. I could barely stand up. Philippe didn’t know what to do. He could tell I needed help. But he also knows I’m too proud to let anyone do that.

My whole body steamed with fear, it was raging through me, as we followed the doctor down that somber corridor to her office.
Slow motion … words were uttered... they floated nonchalently around the room … cascading boldly onto the desk before bouncing off my face into the unknown. Philippe's face echoed my thoughts.
I was scared.
So, so scared.

I didn’t want to hear something was wrong.
But I knew I was going to.

Jacobsens Syndrome.
Chromosome 11.
Deletion of the long arm.
Very rare genetic disease.
1 in 100,000 births.
Not lives. Births.

As the furnace of terror raced through my veins, my heart screamed ‘NO”.
My daughter was going to be different.
I negociated with God. She could have all the health issues, the heart defects, the blood disorder, the funny toes and jaw … but not the mental stuff.

She was mentally normal.

SHE WAS MENTALLY NORMAL.

Dammit.

Rejection walked hand-in-hand with fear, panic, refusal and pain. I sat in that hallway outside the hematology ward, overlooking the expanse of city, and I cried. I cried I cried I cried. And I hoped.
I hoped it was all wrong.
I prayed it was all wrong.

Just over two years down the track, I now know I couldn’t get better until I had faced up to all this. And accepted it. With my heart. With my soul.

The healing process was long. It took medication. It took hospitalization. It took psychiatry. It took psychology. It took time. Six very long weeks.

But most of all, it took the magic of Abigail.
Abigail is my healing.
Abigail’s unconditional love nurtured me back to life.
Abigail’s federation of the family as one, bringing us all closer together than we had ever, ever been before, bonded us in love and hope.
Abigail’s resonant smile reminds us every day that life is precious.
Her gleaming life reminds us that she is our miracle.

Abigail’s condition means that, had she been born in a less wealthy country, she could have been left in a corner, a social reject. And she would have become such a different little girl. A lifeless, forgotten entity abandoned to some dark room with 'others of her kind'.

I know without a moment of hesitation that Abigail’s incredible achievements today, were won through the love she is immersed in.
Abigail knows she is loved.
She knows she is important.
She knows she generates happiness around her.
The love she lives in helped the huge hole in her heart to grow over.
The love she bathes in every day encouraged epilepsy to give up and leave.
The love she is immersed in every day gave her the confidence to walk, talk, learn and contradict every negative diagnosis that has come her way.

Love healed Abigail.
And Abigail's amazing love nurtures and heals us every day.

Thank you Abigail.
Thank you Love.
And Thank you Philippe. Without you, I doubt I would be here today. Life meant nothing to me until you gently nuzzled me back into the world of Mothering. You helped me believe that I was capable of looking after our little girl, and that my abilities were far greater than her disabilities. Philippe, you are forever my hero of a husband.

What a bunch of healers the Bernard Bunch is!!!!

Oh - and isn’t it funny that the only part of me which never healed is the Cesarian scar! All the medicines in the world, and that scar is still there, a reminder of how far we have all come!

Tropic Thunder

2008-08-28T12:41:00.000-07:00

This film bothers me so much.
It really really does.
So much so, that it has driven me to create a place where me, Alison, can scream and shout and proffer debate willy nilly.
I am reading more and more stuff on internet about "Tropic Thunder"
I must confess : I have not seen the film.
And like suspects, I suppose a film should be considered innocent until proven guilty.

I do not feel compelled to watch a film where disability is used gratuitously as a vehicle for poking fun. Humour is essential, and mockery to a certain extent has to be tolerated. Yet... are there no limits to how minorities can be ridiculed by mass media?

Well, DreamWorks has done it. Made a film all about mental disability. It probably doesn't help matters much that people like me bitch and fuss so much about the film that we are probably generating a 'lets see what the fuss is all about' syndrome and potentially strengthening the market for what I am told is an otherwise mediocre film.

Google tells me that Tropic Thunder is a big-budget, R-rated summer “comedy” made by DreamWorks/Paramount, Directed, Co-written and starring Ben Stiller. The movie plot centers around a group of pampered actors who are lost in the jungle while making a war movie. Stiller’s character, Tugg Speedman, is presented as a fading action hero who earlier failed in his bid for Oscar glory while portraying Simple Jack, a character with an intellectual disability.
Studio executives have said the film is a comic satire intended to josh actors and the entertainment industry, not people with disabilities. They say the film plays broadly for laughs, offers equal offense to all groups, and is intended only as entertainment without a deeper subtext.
Stiller’s performance as Simple Jack provides a critical plot point needed to advance the film to its conclusion. In character, Stiller speaks in a stilted, stuttering, adenoidal fashion, and wears overalls, bad false teeth and a classic institutional bowl haircut.

Read through this extract of Tropic Thunder and tell me there's nothing wrong. Am I really over-reacting when I say my hair stands on end each time I read it (and I have substantially long hair, so its quite a feat).

This is the bit where Robert Downey Jr. advises Ben Stiller how to play a character with an intellectual disability.

Stiller: There were times when I was doing Jack when I actually felt retarded. Like really retarded.
Downey: Oh yeah. Damn.
Stiller: In a weird way, I had to sort of just free myself up to believe that it was okay to be stupid or dumb.
Downey: To be a moron.
Stiller: Yeah.
Downey: To be moronical.
Stiller: Exactly.
Downey: An imbecile.
Stiller: Yeah. When I was playing a character.
Downey: When you was a character.
Stiller: Yeah, I mean, as Jack. Definitely.
Downey: It’s like working with mercury. It’s how science makes art form.
Stiller: Yeah.
Downey: You an artist.
Stiller: It’s what we do, right?
Downey: Everybody knows you never do a full retard.
Stiller: What do you mean?
Downey: Check it out. Dustin Hoffman, Rainman, look retarded, act retarded, not retarded. Count toothpicks to your cards. Autistic. Sure. Not retarded.
You know Tom Hanks, Forrest Gump. Slow, yes. Retarded, maybe. Braces on his legs. But he charmed the pants off Nixon and he won a ping-pong competition? That ain’t retarded.
You went full retard, man. Never go full retard.

Never go full retard

Poetic, eh?
Apparently this phrase has sparked off an international debate. Its called "Never go full retard".

An Underserved and Neglected Population?
According to the World Health Organization, 193 million people, or 3 percent of the world’s population, are individuals with intellectual disabilities (ID) – the largest of all disability groups. The occurrence of intellectual disabilities knows no boundaries; it cuts across lines of race, ethnicity, education level, social class, and economic background. In addition, there are millions of family members and friends touched by a person with intellectual disability.
Although the population of people with intellectual disabilities exists in every community, it is nearly invisible and is considered one of the most neglected segments of society worldwide. People with intellectual disabilities are routinely abused, neglected, insulted, and institutionalized, and even killed around the world. Their parents are told to give up—that their children are worthless. Schools in vast numbers turn them away. They are bullied 50 percent more often than any other group. Doctors in vast numbers refuse to treat them. Employers in vast numbers refuse to offer them jobs.

Persistent Negative Stereotypes and Marginalization?
Despite changes in the laws to protect people with intellectual disabilities, they remain on the fringe – marginalized and segregated from the whole of society. Negative perceptions and stereotypes still prevail and the value and worth of people with intellectual disabilities to overall society is not recognized resulting in millions of lives that are shown little dignity or respect.
And yet, these stereotypes do not reflect the true talents and capabilities of people with intellectual disabilities. Like, Florence Nabayinda, who abandoned at birth and discarded as trash, is now an accomplished marathoner, employee and valued and contributing member of her community. Like, Troy Daniels who graduated from his local community high school and speaks of the importance of friendship and acceptance. Like David Egan, who is a valued-coworker and employee where he works at Booz Allen. Like Loretta Claiborne, who lives independently, is an ESPY award-winner, and self advocates for all people with intellectual disabilities on Capitol Hill. The negative stereotype the r-word conveys is inaccurate and destructive.

Is the R-word’s gaining popularity?
Historically, we have seen the elimination of other negative stigmatizing words through awareness and education campaigns and societal pressure. We no longer tolerate calling blacks, Jews, Chinese, physically handicapped, homosexuals, or Hispanics by the words nigger, kike, chink, crip, faggot, and spic, respectively.
The r-word, “retard”, has become commonplace in society. Retarded has even spawned new words: celebutard, a famous stupid person; debutard, a rich stupid person; e-tard, a stupid Internet user -- stupid being the common denominator and "tard" a suffix and a word in itself. ("Tard: Adjective used to describe one so retarded, they do not deserve the 're' " -- Urban Dictionary.)
The r-word has gone mainstream, beyond the core population of its origins and primary meaning. Young and old people alike use the word. In the majority of its usage the word conveys a negative message. Although many people may not understand the hurtful impact, the truth is, it hurts, even when people do not mean it that way. No matter the usage, the discriminatory impact on those people who are the target use of the word is significant.
It is time to eliminate the use of this word. It is time for ALL people to speak up and let others know that they will not tolerate the use of the word. It is time to recognize the worth and value of people with intellectual disabilities and welcome them into a society that can only benefit from their inclusion and acceptance.

Please take a look at http://www.specialolympics.org/ , which I used as a major source of information for the text above (some may call some paragraphs plagiarism!). Special Olympics is working to eliminate the pejorative use of the word retard (or comparable word in different cultures) from use in everyday language, and more importantly create a world of dignity, acceptance and inclusion for people with disability. Special Olympics is reaching out to educate and build awareness of the destructive power of the word through schools, parents, and young people.