
AND RAISING THEIR VOICES: INSPIRATIONAL EXPERIENCES IN DEAFNESS
Sunday, January 31, 2010
Animal Instincts

Friday, January 29, 2010
The Widow and I
*Lovely*
I live in Mayberry.
Finally, he gives me the correct form and I sit down to fill it out. The eighty year old woman sitting next to me asks me if I think she needs to open a new account for television service since she's changed houses and her husband recently passed away. The bill had always been in his name and he had always taken care of the payment.
I look at this eighty year old adorable woman in a beret and think..."Whatta woman!" Learning to live alone after a fifty year marriage can't be easy. We were soulmates for a moment.
Then, she says to me, "You know, it's quite the fashion to get separated nowadays."
*The fashion meaning in-style"
I almost threw up.
I had to give her an education. Sometimes, I should just shut up, but to call getting separated with all the pain, suffering and torture we try-as-hard-as-we-can-to-avoid-but-can't-always-avoid...she needed to understand that it is not a decision taken lightly.
In any case, I watched admiringly as she went up to the counter to pay her bills.
What a woman.
Wednesday, January 27, 2010
Trust

Relationships are like glass. When all goes well they are transparent. We see through the glass right into the other person's eyes, no distortion. Sometimes the glass is colored rose and this color causes distortion, although the glass is smooth to the touch.
We drink wine from a glass bottle.
We look through glass to examine someone closely or from afar.
Glass has its limits.
We do not.
And sometimes the only thing to do is laugh back at that image laughing at us.
Saturday, January 23, 2010
Life For Rent
I'm feeling kind of philosophical at this precise moment in time.
We always dream of more. More money, more fun, more freedom and more LIFE. Because the life that the person next door is living is so much more exciting than ours. They have the bigger car, prettier clothes, whiter teeth.
Really?
Are they happier than we are?
Here I am a single mom struggling to find some semblance of a routine. I wash clothes and dry them five times a day, take out the trash which requires a half a mile walk in the flippin' freezing cold, deal with egotistical bastards every single day...but I go to sleep and kiss my beautiful kids goodnight.
Do you think anyone would want to rent my life for a week?
We always want so badly to live the lives of the millionaire who drives a Lamborghini or the millionaire's wife who shops at Prada. It's all relative, I mean the Prada shopper is just as miserable as the obsessive Target shopper who spends every Saturday at Target. The person who pigs out on filet mignon is the same woman shoving Chili's nachos down her throat to fill the void.
Taking control of a life is close to impossible. External factors prohibit total control. But when one too many egotistical bastards get in your face, we as women reach our limit and finally, finally after making choice after choice and battling struggle after struggle... snap.
And we learn to say,
Kiss
Off.
With a *Smile*
And just to savor that moment after so many moments of suffering, questioning, wondering, reflecting and debating, I am so sure that 99% of the women out there who have been made to feel like less than what they are, 99% would have rented my life to have lived that precise moment.
Wednesday, January 20, 2010
Life's Lessons Learned from Jordan
I remember learning of his diagnosis in a language that was not my own and I remember being made to feel ignorant because I did not understand the language.
I remember having to repeat a word at least and I am not kidding, 100 times before it would even think of entering Jordan's vocabulary.
I remember standing outside of his preschool bawling my eyes out as he bawled his eyes out from inside that school because I left him to a classroom of hearing kids and he was not able to communicate.
I remember when the preschool teachers told me to hold him back a year, because he was potentially dangerous.
I remember struggling to teach him to read when he was four years old so that he would be ahead before entering elementary school...in that way, he could compensate for his language skills.
I remember when my parents repeatedly asked me when he would learn to speak English as I was struggling to teach him Italian.
I remember when my mother-in-law told me I was going to destroy my son the precise moment I told her I was pregnant with Sofia Madyson.
I remember when Jordan threw a chair across the room in frustration because another child knocked his cochlear implant processor off his head and he got so scared, he didn't know what to do.
I remember when...
he sang for the first time in a choir
he played his guitar in front of an audience of fifty
he spoke about what it means to be Deaf before 200 people
he won honorable mention for an essay on what it means to be Deaf
he helped another parent of a Deaf child
he asked me to help him get a girlfriend
he played hide-and-go-seek and heard the person counting say, "Ready or not here I come"
he said to me, "Mom, can you answer me...what are you Deaf?"
Tuscan Regional Pediatric Courses in Newborn Hearing Screening and Deafness have been approved and I will be teaching 500 pediatricians about Parental Support in Deafness...
Let
Me
At
Them.
Tuesday, January 19, 2010
Seven Minutes in Heaven
I sat down next to Sofia and we glued glitter on our masks and rolled colored tissue paper into teeny tiny balls. Sofia looked at me and said, "Wow Mommy, you are really good at rolling balls!" I kissed her...one of the finest compliments I've ever received in my life:-)Then, all of the sudden, Sofia Madyson dropped the "F" bomb when I made a tissue ball too big. I almost passed out. Good thing the little Italian children don't know the "F" bomb. She saw me turn white and immediately said, "Oh sorry, Mommy," then she burst out laughing.
My house is a disaster, I'm constantly at war for work and personal life...every single day Jordan comes home from school dying to find the Wii game he ordered from Ebay that NEVER FREAKIN' COMES, so he complains, moans and bitches driving me up a freakin' wall....although...and this is a big although...he learned the introduction to "Smoke on the Water" on his electric guitar today and that was H*O*T!
I want to go back to second grade, roll tissue balls and play Barbies - No Ken Doll Allowed...the Barbie Convertible a must.
Sunday, January 17, 2010
Haiti...
Yesterday we had a BYOB: Bring your own Barbie party for Sofia Madyson's seventh birthday. And a good time was had by all...singing, dancing and dressing up those Barbie dolls.Two days ago I assisted another family in Pisa. I observed another series of testing to determine whether a twenty-two year old Deaf University student is a potential cochlear implant candidate. I observed as she continuously said, "Oh, I'm not good" after every single exam on her ears. On her ears. To translate ear testing into a general statement of "I'm not good" is the best example of how hearing loss affects a person that I could possibly give. Because her ears don't work well, she doesn't work well?
Quite the contrary. This girl is so intelligent that she is able to combine speechreading skills, with what little hearing her hearing aids supply together with her intelligence so that despite any loss of hearing, she has managed to achieve all that she has achieved today. Yet, when she tests those ears...she isn't good. How do you reprogram a person to understand that it's not HER who's being tested, it's those damn ears?
One of the most painful things to watch again and again. She is a candidate for the ci, but she's scared and righfully so, but if one hearing aid provides absolutely no gain- and you have nothing to lose...you bet on yourself to give yourself more opportunities.
Is it more difficult to decide for your child..or more difficult to watch your child have to decide for herself to have the ci surgery?
Hmm.
Ann Porter of Aussie Deaf Kids sent this message to the GPOD (Global Coalition of Parents of Children who are Deaf or Hard of Hearing:
I thought I should update you on my research in Bali. I found an Australian group who are working with deaf kids in Bali called Bikabele - http://www.bikabele.com.au/. Last Thursday, my friend and I went and met the audiologist for their program Narno Supangat. He works at a clinic in Denpasar and does newborn hearing screening at one of the hospitals in Bali (Sanglah which I think is the largest public hospital there). He works with an ENT there – Prof Wayan Suardana and they do OAEs on Day 1. The screening is free but, unfortunately, if the family can’t pay for the aids and habilitation things become difficult. Bikabele assists Narno and the Prof with Bikabele Swara-Swari Institute to provide habilitation to disadvantaged pre-school kids. 50% of the kids who go through their program are able to go to mainstream schooling. I was so impressed with what these guys are achieving on next to nothing. I am trying to find out more about what support they provide families but the language is a bit of an issue. Anyway, our family will work with Bikabele to help the family we met in Kuta.
The incidence of hearing loss in Indonesia is 5 per 1000! It is mainly due to infections – rubella and CMV.
*All of my love and support to the families of Haiti*
Sofia just walked up to me to show me her Barbies: "Mommy, look how I dressed them..aren't they beautiful?"



