Sunday, October 6, 2013

"Ain't No Mountain High Enough"


I began writing this blog five years ago for two reasons: I wanted to share Jordan's hearing loss journey with other parents, and writing was a cathartic experience that enabled me to heal things I never knew needed healing.

Naomi Higgs, co-founder of the Pediatric Cochlear Implant Circle once wrote: "It's not a sprint, it's a marathon!" No truer words have ever been said in regard to raising a Deaf baby.

I remember when Jordan was about two years old and wore hearing aids. I took him out for some ice-cream in the center and we stumbled across a Rock band. He pointed his little finger at the musicians playing and indicated that he wanted to get out of his stroller. He stood there for about thirty seconds, then his little legs started moving and he did this funny squat dance to the beat of the song.
I started crying, my baby could hear music with his hearing aids.
We danced there for a good twenty minutes, then we went home.

I wrote about how his pre-school teachers told me not to send him to Elementary School because he was violent and could hurt other children. Jordan was extremely slow to learn new vocabulary, he had very poor comprehension and even poorer expressive language skills. I told those teachers that he was frustrated because he had difficulty communicating, but he could read and he was going to Elementary School.

Jordan got his Cochlear Implant when he was in 4th grade.

The CI gave him access to spontaneous language: he felt closer to his peers, his frustration decreased, he began learning to speak English. The picture above is of the first time Jordan spoke on the telephone and heard our voices. My Mother-in-Law captured the moment.

Jordan went to a Middle School specializing in Musical Education. He sang in a choir and learned to play the Classical Guitar.

When I ran into difficulty during the first two years of high school and was considering moving him to a more difficult educational setting, my CI Mom friend, Paula said, "NEVER set limitations on your son, ALWAYS strive for more. His hearing loss is only one part of him, he can do ANYTHING he sets his mind to achieving."  Jordan chose to change schools, conscious that he was choosing a more difficult academic path. And he is doing just fine.

Between Italy, the USA and Australia, I am part of a global Cochlear Implant Community. I use my experiences and network to help others at all points of the journey, just as I learn from families who are further ahead of us on the path.
This type of CI Community support is fundamental to ensure that our kids remain kids, as well as to safeguard our own well-being during the process.

I am proud and honored to say that Cochlear EMEA has recognized the importance of a Mother's Voice in the journey that so many of us travel, and they have offered me the opportunity to serve as a Consultant to Cochlear Europe, Middle East, Africa in regard to communications and relationship management with recipients and candidates and their parents and other relatives.

Three continents of families.
One family at a time.


 

Wednesday, August 21, 2013

Pierre...The Homeless Man at the Fountain of Trevi


My good friend works in a gourmet food store next to the Fountain of Trevi. He has bilateral cochlear implants and the heart of a Romantic Roman Gladiator. He wakes up at 5 am. every morning to go to work and every now and then sends me photos of a spectacular sunrise over Rome or some mouth-watering pasta dish.
The other day he told me a beautiful story...


I'd like to tell you the story of Pierre, a homeless man who walks the streets of Rome. I see him almost every day. He must be about 65 years old. He's thin, has bright eyes and has always sparked my interest, because I always see him reading really big books, while sitting on the steps of a church or theater. 

He always has a book in his hands.

Today I got to work early, so I sat on the steps of a nearby theater. A short time later, Pierre arrived, said hello and sat down.
I said, "Pierre, what are you reading?"
He told me to come closer and showed me a thick book in French.
I told him, "I don't know French, and you?"
He proudly replied, "I'm French."
I asked him "How did you end up in Rome, France is pretty far from here."
He looked at me with such sadness in his eyes, that I was immediately sorry to have asked the question.
He straightened himself up a bit, and in perfect Italian began telling me his story.
Pierre said, "Many years ago I was a professor at Sorbonne University. I fell in love with a student not much younger than myself. A few months later we became husband and wife. We were completely in love. We were so happy together, even though the only thing missing was a baby to complete our love. But I didn't need to have everything, I had her and her love. We were happy for twenty years.
Then, she got sick, with that horrifying disease, I can barely say it's name...cancer....they told us she had only a few months to live. Her dream was to travel around Europe. So, I decided to sell everything, every single thing we possessed and we began to travel. We visited France, Germany, Italy, Holland, all of the places that she dreamed of seeing.
But every day she got sicker and sicker and day by day I started losing her.
But she was happy, happy to have me by her side and to travel. In the meantime, our money was dwindling...I spent the last of it on a beautiful funeral worthy of the woman I loved.
Nothing was the same for me after she left me...she took me with her when she died.
I began wandering through Europe, and I ended up here. Reading helps me to feel less alone and to have her always with me."

My friend and Pierre have become friends, and he has begun bringing him books to read. 

Pierre is not his real name, but in the end..."What's in a name?"

 

Sunday, August 4, 2013

Simple


Last year at this time, I spent 15 days at sea drinking Dom Perignon and devouring lobster. I saw breathtaking sunsets over wild natural settings and watched fireworks while holding hands. I got up at sunrise to go jogging dirt paths surrounded by wildflowers and crystal blue waters until the heat motivated stepping right on into the sea to cool off. I lived Lifestyles of the Rich and Famous.

I just spent the past four days with my friend Rosy. We got up every morning at 7 am to be on the baseball field by 8 am. as she had to score the baseball games of an International Baseball Tournament. I stood for the Italian National Anthem and watched them play ball. We hung out on a campsite dedicated to the 60 teams and drank cold beer to wash down the dirt hanging in the humidity. We ate Mexican food on plastic plates and made room for sweaty mothers pushing hungry babies through the small spaces between the wooden picnic tables.

Whether you're in Jimmy Choos or Crocs, own your shoes.
And smile as you walk that mile.

Saturday, July 27, 2013

The Giving Tree and the 5 Magic Plums


 

I closed the door and locked it.

I took off on my morning jog and entered the running deep thoughts phase.

Some people sit behind a desk from 9 to 5, five days a week, collect a paycheck, go to Happy Hour on Fridays, wash their cars on Saturdays and mow the lawn on Sunday mornings for a lifetime.
Other people work four unstable jobs, travel from country to country and call home a knapsack with a loaf of bread and a bottle of still water.
The drama comes when the person behind the desk has the soul of the wanderer.
The drama comes when the 9 to 5 lifestyle contributes to the inner dying process of a soul that no longer dreams.

While on my road, I heard a voice calling me. I turned around and a man on a ladder was waving to me to approach. I went up to the fence and he handed me some freshly picked plums from his tree. He smiled.
I smiled.
I proceeded to eat the five most delicious plums of my life.
I got somewhat choked up.
I didn't even know the man, and he proudly shared his plums.

I grew up with the terror of eating any fruit straight from the tree.
Don't eat those berries, you could DIE!!!
I grew up with fruit-from-tree-fear.
Living in Tuscany has changed that, I now eat plums from trees.
And as the sweet juice leaves my fingers sticky, I breathe and smile.

He gave me five plums.
And I ate them.
Afterwards, the next 15 hours went something like this...

I  received an email notifying me that my abstract had been accepted for a Congress in September.
Another beyond incredible telephone call gave me the confirmation of something huge,  that I will blog about when it happens

Then, this happened...

Once upon a time on this blog, I told the story of a friend I met on facebook. Let's say about three years ago. He lives in New York and has a private jet. He fueled up the jet, called for his woman and flew her to Maine for a fresh lobster lunch. They were back in New York for dinner.

I received a group message from this man in the evening. The group message went out to 28 people, including myself.

This man wrote:
Everyone is guessing' why I'm doing this ok........let 's face realty......each and everyone of us has gone through a lot this past year....some with major issues while others with less. including ME.........whatever it is .......and I know each and everyone of your past hardships ..........and we've honestly always stuck with each other........we've been friends for years I say..........and all wanting to get together meet......enjoy etc.....so I thought what better way than to take an opportunity with a Gala and a cruise...........Luckily I have the opportunity to offer this ..... and I want to share it with everyone........I care for ....we are friends...we are family........we must enjoy the benefits of being a family........ laughter.....joy.......love...........MY THANK YOU GIFT...
He is flying everyone, from different parts of the world, to New York City, and then he's taking us on a 7 day cruise to the Bahamas on Carnival Cruiseline.
Reading that message, I went through a series of emotions, one of them being similar to fruit-from-tree-fear.
Then, I thought of a 9 to 5 job behind a desk and reminded myself that I have the soul of an adventurer.
I believe.
I don't know if I will go, it depends on my job, my kids...many things.
But for the past couple of days, I have been drifting in and out of la-la-land.
I went running again today, with a smile on my face and dreamy thoughts of lying on the beach in the Bahamas in my head.
That voice called to me again as I was running my road. 
This time he handed me an enormous bag of plums.
He smiled.
I smiled.
And I took those plums home to share with my kids.
They love plums-fresh-from-the-tree.
 

Hmmm...Who's the one with the bilaterale Cis?

Tuesday, July 23, 2013

From the mouth of a ten year old

We were lying in bed, cuddling.
My little girl
and
I,
holding hands and suffering from jetlag.
I tried scratching her back, but she couldn't fall asleep.
We tried just sitting in silence, but the fan's monotonous blow blew on, along with the trucks slamming the bump in the street outside our terrace.
It was impossible to close the windows and unthinkable to switch off the fan.
So there we cuddled in silence.
At a certain point, her little Sofia voice cut through the darkness with an,
"I love you, Mom. Family power. Love power. Amen."
She closed her eyes and fell asleep.
I laid there listening to the whirling fan, the slamming trucks and my daughter breathing.
Home is where the heart beats the loudest....

Monday, July 22, 2013

Taking the Word "NO" for an Answer



When I was a little girl, more often than "Yes", I heard the word "No".
Can I get an Atari??? Please, please, I know it costs a lot, but I study hard, I do well in school, can I please have an Atari?
"No, if you want an Atari, you'll have to pay for it yourself. I work hard to support you and your sister, and I don't have spare money lying around to pay for extras." My mom said.
I really wanted that damn Atari.
Everyone played Pac-man, Caterpillar, Frogger and Asteroids and I was the only one without an Atari.
So, at the age of 13 I started working for that Atari.
I babysat for the neighbors across the street. I saved my birthday money and slowly I reached a total of 80 dollars.
My stepfather took me to the store. While we were there, he asked me if I wanted to buy my stepbrother's used Atari, it was just as good as a new one for half the price, but I said No. I wanted a new Atari. I had worked hard to earn it, and I wanted it to be my own.
I bought the Atari and fell in love with Frogger.
Six months later these really cool sweaters were in style and everyone in my school had one. I babysat every weekend and earned enough money to buy one.
When I was sixteen, my father agreed to buy me a new car if I paid for the insurance every six months. I said, "Thank you so much, ok!"
I got myself a job at a fast food restaurant in the mall, continued babysitting and made those insurance payments every six months.
The only way to protect yourself from a "NO", is to put yourself to work to make it a "YES."
I just started reading a book that talks about how the new generation entering the workforce lived a color-coated existence. Their parents gave them so much positive reinforcement and so many "Good Trys" that they believe themselves to be infallible; when the reality of failure and the word "NO" hits them in their perfect faces and touches their perfect lives, they go into depression. There are egomaniacs running around and they quickly turn into depressed individuals.

I heard "You CAN'T teach English to your son."
I heard "Your son is NOT a candidate for a cochlear implant."
I heard "I give you six months in Italy and then you'll be home."
I heard "You will NEVER survive without my help."
I actually even heard, "You are HELPLESS without me."

Thank you to my Mom, my Dad, my Stepfather, my Grandparents and any other person who told me "NO" as I was growing up.
I learned the value of creating my own strong, "YES".

Sunday, July 21, 2013

My Pop's Boxer Shorts

I wasn't at my Pop's funeral, he died on the May 9th just after Jordan's CI surgery the previous December.  I was having panic attacks during that time, because it was the calm after the storm that was Jordan's surgery and activation. Jordan had finally taken off in his new hearing journey and just when I could finally relax, the weight crashed down as it so often does when you are strong for too long. Jordan was able to talk on the phone and hear my Pop before he passed away, thanks to that ci. When I came back home that summer, I rummaged through my Pop's things and took his sweatshirt with his grandkids' names on it and five pairs of his boxer shorts.
My fondest memories of my Pop, aside from when he used to take me to Dunkin' Donuts for a hot chocolate and a chocolate chip muffin with melted butter every Saturday before my Wally Saunders Ballet lessons, were of him sitting on the blue velvet couch, eating a tub of Cookies and Cream ice-cream with a spoon, watching golf on tv, while wearing his boxers.

I sleep in those boxers during the hot Tuscan summer nights.
They don't exactly fit, but they're really comfortable.

My Pop taught me right from wrong. He taught me to respect my Mother even when we fought. He never said a bad word about my father during my parents' divorce, and made a damn good tunafish salad.
He used to make his arm muscles go up and down to show us how strong he was, and always gave me his stubbly cheek when I went to kiss him goodnight on the weekly Friday night that we slept over his house.
Every softball game I played, he cheered in the crowd with pride.
Sometimes when growing up certain people are larger than life to your little girl eyes, the miracle comes when they remain larger than life even when you see them through adult eyes.
When I made mistakes, he told me.
When I did something good, he told me.
He loved my children and all of us unconditionally.
He told me, "Jodi, your family will always be there for you. When you have a problem, ask your family for help."

My Pop taught me strength.
And I returned to my family, to find some of that strength I had lost.
The thing about taking- yourself- back family strength, as opposed to seeking-for-temporary-strength in other random people is that the process requires real love.
And it is love that truly makes us strong in those moments where you feel empty and drained.
I'm back in Tuscany, just a little stronger than when I left.
And I'm wearing my Pop's boxers.


Tuesday, July 9, 2013

Making the Call in the Clutch

 
Last Sunday my motorcycle broke down, and stranded, I was forced to call Emergency Roadside Assistance. For a minute, I had thought to ask for help from another pedestrian in the area, but that time, I decided to try to do it on my own. Throughout my life as a Deaf individual I had always had phone fear- when the phone rang, I froze; thoughts tormented me like "What if I don't understand what they're saying, what do I do?", "I won't recognize the voice", "What if he/she speaks too quickly?", "I don't want to make a fool out of myself!" 

So there I was in an emergency situation and I kicked all of those negative thoughts straight to the curb. I mustered up some courage and dialed the number. I was ready to make that emergency call by myself: to ask the person on the other line to please speak more slowly without becoming agitated. And as you are speaking on the phone, you realize that-

... They ask you what happened... 
...They ask you for your name and surname... 
...They ask you for the license plate number of the motorcycle...
... They ask you the warranty number...
... And they inform you that the pick-up truck will arrive in 45 minutes...

From then on, without having foreseen the outcome of that call, you understand that you have just done something enormous...something that up until a couple of years ago would have been impossible for you. These are the incredible satisfactions in life, and they must be appreciated for all of the hard work and effort, physically and psychologically that contributed to finally achieving them!!! 
I would like to preface that before becoming confident with my cell phone, I had to wait at least 3 years after my ci surgery, and it required a great amount of willpower and motivation to find the courage to respond to and make telephone calls. 
One step at a time....making a phone call in an emergency situation...who would have ever thought I'd overcome that obstacle!!! 
Eng. Nicola Battista

Tuesday, June 25, 2013

After 17 years....I can hear underwater!


For the past seventeen years, Jordan has experienced water in silence. He's been swimming since our first Mommy and Me swim class when he was six months old, and he has never heard the sounds of underwater. We live twelve minutes from the beach in Tuscany and for the past seventeen years he has read my screaming lips to not go too far out in the sea, or to stop splashing his sister.
Today, for the first time in his life, thanks to the Cochlear Acqua Accessory, he could wear his processor underwater.
He wanted me to tell everyone, "I heard the silence of the sea..."

Monday, May 13, 2013

When You Open Doors...You Open Minds


Saturday, May 11th in Rome, we had our first National Meeting of my forum "Let's Face Deaf Together".
Jordan and I left Grosseto for Rome on Friday afternoon. He slept the entire ride and when we arrived in at our Bed and Breakfast he requested pizza and tv. I was dying for The Vatican and the Fountain of Trevi, but I decided to make him happy. Two episodes of Smallville and ten pieces of pizza later, we headed for the Colosseum and had a quality mother-son moment.

We then walked to the Fountain of Trevi to meet the Organizing Committee for our pre-scheduled dinner. And a good time was had by all:-)





The next morning we woke up and headed to the Goethe Institut where we found people streaming in the door. We were greeted by smiles, hugs, cochlear implants, hearing aids, sign language users...members of the forum- presidents of different associations throughout Italy, etc. I had asked the surgeon (Professor Stefano Berrettini) who performed Jordan's CI to moderate a round table discussion entitled: From Newborn Hearing Screening to the Cochlear Implant with three Professors from the three clinics in Rome. Berrettini had just held a two day conference in Pisa in collaboration with the Karolinski Institute, that I attended, yet despite his exhaustion, he still woke up at 6 in the morning to be present in Rome for our Meeting. (Amazing!!!)

I had somewhat of a crisis because the computer would not read my powerpoint, so I lost about 40 minutes trying to figure it out- thank goodness another speaker had one of my past powerpoints on his usb pendrive, so I had to wing it, which left Jordan's slides out of the program.

The meeting began. We had two sign language interpreters and a woman responsible for Respeaking during the entire event to render it accessible to all. Three of the organizing committee members started the meeting by honoring a prominent Italian Professor (Edoardo Arslan) who had just passed away, not with a moment of silence, but by requesting that the entire room stand up and applaud as this great man was responsible for transforming silence into sound for so many deaf individuals.

Then, the organizing committee called me up to the podium and gave me a plaque and flowers honoring me for having created the forum. I cried. Totally unexpected, it was one of those moments where it all hit me and there was Jordan seated in front of me watching everything.

Finally, the meeting began. There were emotional moments like when a father showed a video of his daughter who uses both sign and speech that discussed all of the difficult decisions he had to make as a parent lost in a world of doctors - he choked me up when his eyes got teary as he thanked his wife for always being by his side; a speech therapist discussed the importance of communication and not just how many words a child learns- she showed videos clearly defining good communication including wait time and turn-taking in a before and after video of a mom interacting with her deaf baby; a deaf woman with a cochlear implant explained the importance of horizontal interaction between siblings in the family and how deaf children have difficulty understanding idioms; I spoke about what we face every day as parents and how we need to remember to be husband and wife and not just mom and dad.

Then Jordan spoke.

He talked about a moment in his life when he had to make a difficult choice. Last year he was having difficulty in school and made the choice to change schools- to move from an easy situation academically where he was suffering socially to a more difficult situation academically in the hope of finding a better situation socially. He talked about how he loves his new school and that he is currently working on creating sculptures for a life size chess board. His message to the public was: We can choose which road we take and while it may not always be the easy road, never give up.

When my deaf child with a cochlear implant finished speaking before 250 people, I got up and hugged him. There was a moment during his speech that he couldn't find the words to say what he was trying to say, and for the first time in my life, I did not try to help him. I knew he would find the words.
And he did.

We invited Terenzio Traisci who travels around Italy giving a speech related to the "Yoga of Laughter" because we wanted to remind all present the importance of laughing during the process.

The afternoon session was dedicated to adults and the problems deaf individuals face on a daily basis. Speakers gave examples of issues discussed on the forum and offered possible solutions that we will present to the entity responsible in Italy, which did send a National representative to listen to our Meeting. An adult implanted at the age of 65 years old talked about the fact that he went bilateral to hear his granddaughter tell him stories. Another adult implanted spoke about the importance of socialization and not just communication in rehabilitating deaf adults. A gentleman spoke of his experience in a Deaf Institute growing up and how times have changed.

Throughout the applause of all individuals in the audience and the tears, both the young and old found themselves and their experiences in the presentations of the speakers. It was a tremendous success.

The only problem was that we ran out of time and had to end the Meeting without offering the public a chance to speak at the end.

A President of an association representing deaf individuals using sign language came up to me after the meeting and aggressively accused me of not having let her Deaf individuals speak and that it was unacceptable that they were not given the chance to intervene. I apologized for the fact that we ran out of time, but she continued verbally assaulting me. Luckily, someone rescued me because we really had to get out of the venue.

I digested the situation and twenty minutes later as everyone was congregating outside, because no one wanted to leave, I approached her as she was signing with a couple of the men who were part of her group. I asked, "Could you please translate for me?"
She glared at me and said, "Okay."
I said, "I apologize for the fact that we had to abruptly end the meeting, I would love to hear what you wanted to say."
One of the men, so sweetly, smiled at me and said, "Thank you for the Meeting, I learned a lot about cochlear implants. I realize that deaf people with a cochlear implant are able to communicate with the hearing world better than we are able to do with only sign language. However, there are also aspects of my life as a Deaf individual that I can share with you, and I hope that we can work together in the future."
I smiled and said, "That was the purpose of the meeting, we are here to collaborate."
He thanked me profusely.
The other signing man turned to Jordan and said, "Your mom is very sensitive with a lot of heart. She is a strong woman."
I gave him a hug, thanked him and looked at Jordan.
He wasn't convinced:-)

We still have a lot of work to do, but we are building bridges- we are transforming the virtual world of facebook into memories lived together- face to face.
And as we know...Rome was not built in a day.

Sunday, May 5, 2013

Cinderella, Prince Charming and the Fairy Godmother


I'm learning that once upon a time can happen more than once in a lifetime.
Unfortunately, the Prince, may not be charming forever.
At a certain point, Cinderella has to grow up, shed her rags and step into her big-girl dress.
And they both live happily ever after...just not together.

Maybe at 41, I see things through more discriminating eyes.

We lived Paris in love, caught a huge fish in Miami, played ping pong on the beach, walked the dog together, travelled Italy, took the kids to amusement parks, played cards every night and held hands all day.

I inhaled and exhaled magic.

And as suddenly as it all began, it ended.
Like abracadabra, Bye.

I believe in carpe diem.
I have made peace with impermanence.
I have no regrets, only pain and suffering.

I've come to the realization that with all of the suffering in the world, it's okay to suffer for love.

And my personal Fairy Godmother...my Mom, is saving my life one day at a time.





Thursday, May 2, 2013

Proud


Four years after creating my Italian blog, three years after having created a facebook forum called "Let's Face Deaf Together!- Cochlear Implant Forum, we are holding our first National Meeting in Rome on May 11th entitled "Look Who's Talking!"
Participants include cochlear implant recipients, hearing aid wearers and deaf adults and children who use sign language without amplification. I believe it could be the first Meeting ever where the speakers are just about all Deaf Individuals ready to share their experiences to enrich the lives of others. Medical professionals are attending to "hear" what we the families of Deaf children and Deaf adults have to say about the system.
The facebook forum is a place where associations from all over Italy can share their projects, ideas and goals to improve the system as a whole and offer resources to all. The Presidents of these associations will be attending this meeting.
There is a battle going on in Italy right now over whether or not to recognize LIS as a minority language, but that battle has no place in our Meeting. Our meeting is pro-family, pro-support, pro-strength, pro-community that encompasses all perspectives.
We are all co-existing on one forum. Miraculous:-)
I have always believed in choice and that each and every choice must be respected.
There are 250 seats in the Meeting and we are now at standing room only with 270 participants.
I believe that if you build it...
they will come.
Jordan and I will be speaking together:-)

Tuesday, April 23, 2013

I Turn Off My Hearing When I CHOOSE to Not Hear

Sometimes the choice is not ours.
But all choices must be respected.
All endings bring new beginnings.
It is our past that gives us the strength to forge forward into the future.
Never let a person underestimate your strength.
And never underestimate your future.

I just got back from a Meeting in Milan. The president of the parents' association invited me to speak to a group of parents. While I was there I had the chance to meet a mom and little boy I have been following since his first newborn hearing screening refer. They started their journey in Pisa and now they're in Zurich. Amazing experience to hug the mom and hear the little boy say Ciao:-)
 





On the forum, one of the adults posted this: Describe your cochlear implant experience in 5 words...
Here are a couple of comments people wrote (in Italian they were five words each, in English I don't have the energy to translate in five words:-):

-My life has totally changed for the better
-My daughter talks non-stop
-To hear everything- simply Amazing!
-Adorable voices of my children (a Deaf Mom wrote this one..)
-Everyone hears in his own way
-The story of a rebirth
-To hear is to live in color

And mine for Jordan:

I turn off my hearing when I CHOOSE.

My son was born deaf, he had no choice in the matter.
Thanks to the cochlear implant, he can hear.
And now, he is the one who chooses to turn it off.
That for me is the greatest miracle of all.
 Photo: In gita all'Elba




Tuesday, April 16, 2013

Boston


I try to go running every morning.
This morning I ran and thought of Boston.
I believe in marathons, stamina, perseverance and challenges.
I trust people.
If a cashier gives me too much change, I tell her.
I have had a person run up to me, because she saw me leave my cell phone on the counter.
While walking down the street I smile at people and they smile back.
I work more than I probably should to achieve goals that oftentimes seem unreachable.
It doesn't matter how long it takes to reach those goals..
I just need to cross the finish line and glance back a stronger person.

On Facebook, Nicholas Kristoff wrote:
 Most inspiring glimpse here of the Boston marathon: runners who reportedly finished the 26 miles and then ran over to Mass General Hospital to donate blood.

Americans run marathons literally and figuratively every single day.

We always cross the finish line and immediately turn our eyes towards the next hurdle to overcome.



Sunday, April 14, 2013

Just Stop...and Taste the Ice-Cream!


Our lives revolve around hustling and bustling, so when do we actually put down our smartphones and look our kids in the eyes?
The daily grind stimulates, activates and motivates, but when do we STOP, look around and breathe?
Just do it.
Just stop, collect your kids, turn off your cellphone, turn off the car radio, drive to the ice-cream parlor of your choice
and
taste
the
ice-cream.

This is the cover of my Forum's first National Meeting: Look Who's Talking!!! (More details coming soon!!!)
This is what the Program cover says:
 "Help your child to always take only one step forward. Then, give her the time to look back and realize the progress she has made. Let her know that, you too, are happy with her, so that when she turns back around and looks to the future, she will confidently take that next step forward".

Friday, April 12, 2013

Does Anyone Know Jordan- the Boy on Youtube?

Does anyone know Jordan, the boy on Youtube?
That was the question a new entry posted on my forum.
For a minute I wasn't even sure she was talking about my son...but she was definitely talking about  Jordan.
She wrote, "The first time I saw him on youtube, I cried. He was my first approach to the cochlear implant, he gave me hope."
Then, another member of the forum posted this: "It's true...when we found out about Chiara's deafness, they immediately talked to us about the cochlear implant. We had never heard of a cochlear implant, so we started to do some research. When we inserted the key words on youtube, we found a beautiful child with glasses who said, 'My name is Jordan Del Dottore' and we realized that anything is possible. Today, after almost one year since my daughter received her cochlear implant, when she says, 'Papa' my love, I love you", we're totally convinced about our choice".
Yesterday was an emotional experience on the Forum.
And here he is....Jordan...a couple of years ago:-) 

Tuesday, April 9, 2013

From Mother to Daughter: Any Regrets?

 
Posted by one of the moms of the Italian forum...
 MOM
At least once in our lives, we have found ourselves eye to eye with one of those stuffed animals dropped on our table at a restaurant by a Deaf individual with a sign language card and a piece of paper that says: "I am Deaf, please buy this stuffed animal. Thank you."
When this would happen to me with my Deaf baby Alice sitting by my side at that table, my heart would break and my thoughts would drift towards her future leaving me with doubts and uncertainties regarding the choices I had made and would still have to make. I thought, fortunately, the cochlear implant exists and my child will not grow up isolated from a world filled with sounds...
Then, however, I would think to myself: and if one day she hates me for having made that difficult choice to go forward with a cochlear implant that has enabled her to hear through a lot of hard work....and if she hates me because her entire life will be an uphill battle?  
Last night at the restaurant I relived that same scene from many years ago..........yet this time, sitting in front of me was my grown up daughter. She was watching me and said,
DAUGHTER
"What's the matter Mom? You just got really sad..."
I explained to her my feelings and fears that I still have for her and her future. She looked me straight in the eyes and said: 
"What daughter could hate a mother who chose to give her wings so that she could fly higher?????"
I posted this here to try to reassure all of the mothers of newly diagnosed babies who find themselves in the delicate position of having to make difficult decisions for the future of their babies....
-M.M. Rossi

Monday, April 8, 2013

Second Printing of RALLY CAPS....With Jordan's Letter Inside! The book and where it went from there...




THE “SECOND PRINTING” ALSO INCLUDES INTERIOR TEXT ADDITIONS: “ABOUT RALLY CAPS” AND “JORDAN’S LETTER” IN THE FRONT
AND “BASEBALL GREAT’S BIOS,” “A GLOSSARY OF BASEBALL TERMS,” AND “THE RIPKEN WAY,” NEW CHAPTERS 24, 25, AND 26.

While this is happening in the USA, my forum in Italy that came about following the printing of RALLY CAPS in Italy is about to hold its first National Meeting in Rome.
It has been an intense, busy and satsifying six years.
Above all, Jordan and Sofia have been by my side the entire journey.

My Dad recently created a blog on Wordpress where he posted my first public speech from NHS 2008 in Cernobbio- Thank you again to Prof. Ferdinando Grandori who has become a dear friend. My first time speaking and there were 1100 leaders in the field of Audiology in that room. One week ago I received an acceptance letter to speak at a Congress in Istanbul regarding the work that we have been doing since that day in 2008. Here is the speech:-) Thanks Dad!!

BLOG: Monday, June 23, 2008

Newborn Hearing Screening Conference June, 2008 – My Speech

Here’s my speech! I will say this – at a certain point, I started shaking, like a physiological reaction or something. I began fairly calmly and suddenly, I got the shakes. Luckily, I started the PowerPoint presentation at that moment, so I managed to pull it back together, but it got a little sticky there for a minute. I don’t know that I followed it word for word, but the jist was this:
INTRO:
Good Morning. My name is Jodi Cutler. I am an American Mom living in
Tuscany. My 11 year old son Jordan was born profoundly deaf, wore hearing aids for eight years and three years ago was implanted in Pisa by Prof. Stefano Berrettini with Cochlear’s Nucleus 24. His first processor was an Esprit 3G, and he currently wears a Freedom. All of our expenses have been covered by the Italian National Healthcare Service.
The cochlear implant changed our lives. From the moment of activation, Jordan flew, grew and found his voice. Because he found his voice, I was able to raise mine regarding our experience. My father and I wrote the book RALLY CAPS, and incorporated a strong deaf character with a cochlear implant just like my son, because every child has the right to find himself in literature. RALLY CAPS has been endorsed by Cal Ripken Jr., Brooks Robinson, and Curtis Pride, the only Deaf Major League Baseball baseball player. It was published in the United States and has just recently been published in Italy. At the book presentation two weeks ago, I invited the Medical Professionals involved in helping our child, each and every one of them not only attended the presentation, but they spoke.
The following is the dedication in the Italian Version of Rally Caps to all of the medical professionals and teachers who have assisted us in raising Jordan’s voice:
Placing your child in the hands of other people and having to trust these people with your child is the most difficult thing for a mother. When life requires that you ask for the help and support of persons outside of the family, you suddenly find yourself in an extremely vulnerable position. Finding professionals willing to offer all of their efforts and competencies, who moreover demonstrate the ability to love your child in such a way as to contribute to his growth is…extremely rare.
*Slideshow*
I traveled ten hours, changed trains four times and sweated my way to a hole in the wall of a hotel room with a bathroom in the hall to provide you with this message: There is NO greater ally in making your job a success than the Mother of the Deaf Child you are assisting. I am here today, based on my experience here in
Italy, to provide you with a Mother’s perspective.
PEDIATRICIANS:Jordan was born in Baltimore and was extremely alert and obviously intelligent. There was no newborn hearing screening program at that time. Because Jordan was so intelligent, we questioned our pediatrician numerous times regarding his lack of language expression, he wasn’t babbling at all. Each and every time, my pediatrician called me neurotic… Motherly piece of advice number 1: LISTEN TO A MOTHER’S OPINION, THERE IS NO ONE WHO KNOWS HER CHILD BETTER.
As an American Mom thrilled to be living in Tuscany, I jumped off the airplane with ten month old Jordan slung over my shoulder ready to dive into some Chianti and pecorino cheese. One month after we settled into our new small town
Grosseto lifestyle, we took Jordan for his first check up with our new pediatrician. Dr. Giovanni Lenzi performed a standard Boel test which involved distracting Jordan with one hand and ringing bells with the other- to which Jordan had no reaction. We were sent to Florence where they performed an ABR that indicated Jordan’s profound bilateral sensory-neural hearing loss. However, try to imagine the scene in that office…
AUDIOLOGISTS
When this audiologist came to speak at my book presentation a week ago, she commented on how different I was compared to that first day that I met her. I was a 25 year old American Mamma wearing cut-off jeans shorts, very broken in tennis shoes who didn’t speak a lick of Italian. What I didn’t tell her, because the most important thing in our relationship was the fact that she loved Jordan, was how angry she made me the day she gave me that news of my son’s deafness. She looked right through me…and spoke to my mother in law. And when I intervened by means of my husband and said, you need to talk to me, I AM THE MOTHER, she began calling me “dear.”
Motherly words of wisdom number 2: When you give a parent news of their child’s hearing loss, look them directly in the eye and never look at them with pity. If that mother is Hispanic or deaf, make arrangements for an interpreter to be present because the news you give that mother will change the rest of her life.

SPEECH AND LANGUAGE PATHOLOGISTS
Armed and dangerous with hearing aids, next stop Auditory-Verbal Therapy four times a week. Advice Point 3: This one’s for the Speech and language Pathologists, and Auditory-Verbal Therapists: Encourage that Mom who now assumes a new role as Mom/Teacher, focus on the positive progress made.
Imagine your typical playground scene, it is natural for a mother to teach her son right from wrong, how not to climb up the sliding board or not to push the child in front of him…it is not natural to have to shove language down your son’s throat “Oh, look, there’s a toy train, can you say Toot Toot? Oh, look that little girl has a toy car, Brrrrrooom, brrrrooom!” This dual role of teacher/mother blew me away, I am a teacher, but I have Never had a student as stubborn as my son. My speech therapist explained that my son’s temper tantrums were due to his frustrations regarding his inadequacy in expressing himself; he threw a lot of temper tantrums, so he must have been extremely frustrated.
It was my son’s frustration and the fact that he was falling behind socially that led us to choose the cochlear implant.
COCHLEAR IMPLANT TEAM
After a couple of opinions and research we found Santa Chiara Hospital in
Pisa where Dr. Francesca Forli answered every single one of my fifty questions calmly, objectively and sincerely. I had found my implant team. Prof. Stefano Berrettini performed the Implant Surgery leaving Jordan’s residual hearing intact. He provided me with his personal cell phone in case of emergency and called a couple of times to check on Jordan’s progress, note Jordan’s operation was the day before Christmas. I am not asking you to give up your personal lives for your patients, however it might be a sort of a human touch to delegate a phone call to a member of the implant team to find out how that child is doing…and how that mom is doing. A calm mother means a calm child.
Motherly request number 4: Go above and beyond the call of duty every now and then, it goes a long way in establishing a collaborative effort with the mother of that child, which will only make your work more successful.

The cochlear implant enabled my son to become independent. Our journey has not been easy, but it has been extremely rewarding.
SUPPORT NETWORK
After spending ten years without support, I found the Pediatric Cochlear Implant Circle a community of over one thousand parents at various stages of the cochlear implant journey. Some parents use ASL as a bridge or in conjunction with spoken English…other parents strictly use the Auditory-Verbal approach. We exchange information regarding the latest technology and offer psychological support having been there and done that. I then joined the blogging community, which has led to a productive dialogue with the Deaf Community. Hearing mothers of Deaf babies with CIs are making a difference in opening minds within the Deaf Community.
Mom’s Final Request: Provide that Mother with resources to help her through the lifelong journey with her deaf child.
I would like to share a little poem by Shel Silverstein entitled
Listen to the Mustn’ts
Listen to the Mustn’ts, child,
Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.
We are an example that Anything is possible. Empower that mother by validating her concerns, looking her directly in the eyes when you speak to her and providing her with resources that offer support and guidance… and you will save that child.








Wednesday, February 27, 2013

Shutters


Okay.
I am waiting.
But while I wait I am involved in a thousand things so that the limbo becomes a juggling act of my patience vs. my moving forward with ideas.
The dream is there hovering.
In the meantime, life has been throwing some eggs.
Little tests that I'm not sure I'm passing, but I'm trying.
Two weeks ago in Rome, I put a politician in his place.
I gave him the stare-down when he tried to answer a phone call during my presentation.
I put the entire room on pause.
I felt like Leeanne Seaver.
He paid attention the rest of the time.
At the end of my presentation on what it is we do as parents of children with hearing loss and why we are so important to the process, I apologized for not letting him go before me as he had requested and thanked him extra-kindly for waiting through my presentation.


Yesterday I had a moment.
Sofia's father forwarded me an email from a boy who asked Sofia via email if she could come over his house and play.
I remember when a boy asked me to come over his house and play...she's not going:-)
I had a my-kids-are-growing-up-moment.
So, this morning I spent 8 minutes suffering through Sofia's morning breath to snuggle her up and bite her cheeks.
It's going too fast...




Wednesday, January 30, 2013

Jordan's first IEP meeting...



We had Jordan's bi-annual IEP meeting yesterday and for the first time since he started school at age 3, he participated.
After asking the CI Circle parents their experiences regarding allowing their children to participate in the meetings, I realized that in the USA it's common for children to participate; however, after asking a group of speech therapists at a course where I spoke in Pisa last Saturday, I realized that in Italy, it just doesn't happen.
Yesterday in Grosseto, it happened.
At an IEP meeting the parents, teachers and child psychiatrist are present. We've known the child psychiatrist since Jordan was three and he has been a fundamental part of our journey.
He smiled the entire meeting.
The teachers smiled the entire meeting.
Jordan talked about how he thought school was going.
The teachers asked him questions about what they could do to help and what his concerns were.
They told me that he participated regularly in class and followed the lessons attentively.
Everything went really well, except for the fact that he's failing English.
Smile.

Monday, January 28, 2013

Adrenaline

Some people jump from an airplane and feel the rush at the moment they tug the cord of the parachute.
Some people step in front of a podium, microphone in hand.
Some girls put on a tutu while others run the bases until they touch home plate.
When you're a sixteen year old guy, it can be the girls putting on makeup at the back of the classroom or the smell of perfume.
It can be that moment where you find the courage to speak, when you are unsure of exactly what may come out of your mouth.

It comes in all shapes and forms at any age.
If you aren't sweating, you aren't living.
Sometimes we are standing on the edge of "right" or ""wrong", "up" or "down", "do" or "don't".
And if you've gone as far as that edge, don't look back.
Just jump.



Friday, January 25, 2013

Bye Mishka:-)


"Last week i took down my blog down for good. It's been inactive for some time, but now it's gone. I've saved all the posts. some day I will donate them to a deaf studies program. blogging had been an enriching experience. I've gained invaluable information and formed countless friendships. while looking at posts since 2006, I can safely say that my perspectives on certain issues have changed since I began blogging.

...I'm not ruling out the possibility of resuming blogging and deaf advocacy again later on."



The end of an era.
I totally understand.
Mishka's blog taught me a great deal and gave me many opportunities to reflect on the choices I made as a Mom during that time period. She gave me an education that I am still using today...actually the other day on the Italian forum I spoke about my experience blogging on Deafread and how our constructive dialogue led to an evolution in attitudes.

Five years ago I began blogging, I was married, in crisis and alone. It's incredible how writing and putting your heart out there for everyone to read can help you understand yourself and help you work through making choices. It's amazing how many people are living what you are living, or something similar at that precise moment and how many people you can touch just by sharing some pain. 

I have learned that the more you give, the more you grow.
We're still here growing in Tuscany.
I'll be back soon.