Invasion of Privacy

To the person from California who hacked into my personal email by means of my widget, enjoy yourself while you can. If you need assistance translating my emails from Italian to English, you know where to find me.
Jodi

Choked Up

 A fifteen year old  girl considering the cochlear implant asks a 60 year old grandfather who chose the cochlear implant because he wanted to hear his granddaughter:

-Hi Corrado, I don't know if you remember me, but I wanted to ask you this question: What was it like to hear the horse's hooves hitting the ground again?

-Hi Clelia, of course I remember you....................we share the same passion....the sound of the horse hitting the asphalt is deafening, but on the sand, it's soft......................................

I Love the Smell of Coffee

The idea of starting a new book, of staring at that first blank page is oppressive.
Somehow, the short, blank blog page smiles at me when I come to put thoughts to air, and it heals.
But...I'm starting to get that write a book itch.
Rally Caps came at the conclusion of a life-phase, at the beginning of a deep breath called live again, directly related to Jordan's cochlear-implant inspired freedom.
I've just started to inhale after life-phase: separation. This inhale is totally independent of my children's well-being and is directly related to my own, personal hurricane-like need to break out of imaginary bars. Kind of like a self-created breathe freely sign. That I would like to share with anyone willing to listen.
It began on Sofa Bed Island.
Hit rock bottom on a can of soup a day.
Bounced up and down with each Dragon slayed and Lion tamed.
And hit the horizon when round 10 ended in a mutually agreed upon draw based on live, love and proceed.
So...now, if I could just put all of that down in words.

Words that would provoke a cathartic experience enabling the reader to actually see the eighty-five year old woman walking and struggling with the two three gallon jugs of laundry detergent...actually see her and gently relieve her of those heavy items for the remainder of the walk to her car;

or to hear the child - without tuning her out- whining in the backseat of the car because her shirt got caught in her seatbelt, so that she tragically couldn't reach her gameboy that had fallen on the floor;

or to actually, consciously feel that your son needs a hug, maybe just for the fact that your sensitive, independent son realizes that you need a hug, too.

Yesterday, Jordan and I went to eat a pizza together and then to see Harry Potter. Two and a half hours later, I couldn't resist, I HAD to go to the bathroom. Four and a half minutes later, I headed back to the theater to see everyone leaving. I peeked inside to find Jordan, but he had gone. I turned back around and he was pointing and laughing at me. He then proceeded to explain the last two minutes of HP. Something about a wand, a tomb and an explosion. And that it wasn't the official end, that we have to wait until July. He loved that I missed the end.
I kind of like the irony of sitting through a two and a half hour movie to miss seeing the end of the movie that was not the end.
Love that.
I already know how my book will end.

Happy Thanks-Giving...

Families come in all types of colors, shapes and sizes. Through the bitching, whining, crying, complaining and misunderstanding....take a minute to really look at each other. Smile. And enjoy:-)
We had sushi and cranberry tea for Thanksgiving dinner:-)
Shop it up for meeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!
And if you are with those loved ones who drive you up a wall.
Give
Thanks.

Man-Made

One year ago a mother contacted me and informed me that her son had the model of the first Clarion recall. Three times. Her son was implanted and explanted three times with the same recalled model.
So, when I read about the Voluntary Recall announced by Advanced Bionics, I placed the information on both the Italian blog and the American blog.

No one wins in this situation. I am thankful that Advanced Bionics takes their responsibilty to their ci recipients seriously and made the recall extremely public.

My first thought was to inform the families, so that they would be able to be pro-active in monitoring their children. I informed surgeons so that they could be pro-active in response to the needs of their patients. Then, I had a critical moment of self-doubt...
People have many reactions in moments of crisis.
A mother on the Italian forum wrote:

I'd like to introduce myself: I'm the mom of a little tigerette with a profound, bilateral hearing loss that appeared, cause unknown a year and a half ago. She wore hearing aids for six months and received a cochlear implant, model Advanced Bionics one week ago because we believed it to be the best model for her needs. We are anxiously awaiting activation and trying to handle this new situation considering the news...

Another mother immediately replied:

Hi and welcome!! My three and a half year old daughters each received a cochlear implant AB Harmony in June. The implants were activated in July and now when I ring the doorbell of my house, they open the door and greet me with an "Aaaaooo...mamma!" It takes time, but we are laying a solid foundation!! Good luck!!"

This mother who replied to the other mother had sent me an email 25 minutes earlier in panic over the news.

Yes, we have each selected a man-made device to offer more opportunities to our children, and this carries risks. Just as it is our choice to offer our children more opportunities, it is also our choice as to how to face eventual complications or even the mere threat of unforeseen complications.

The human spirit...the need to offer support to others...the human spirit...that too is man-made and extremely powerful.

Letter from Advanced Bionics re: Voluntary Recall

Advanced Bionics website - November 23, 2010

---------------**** Recall Notification****



Advanced Bionics HiRes 90K Cochlear Implant

Dear Cochlear Implant Recipient or Parent,
Our mission at Advanced Bionics is to improve the lives of the hearing
impaired, and the safety and well-being of our recipients is our first priority. Because we are committed to ensuring that our products are as safe as possible, we are voluntarily informing you that we have become aware of an issue with the HiRes 90K cochlear implant.

The issue can result in pain, overly loud sounds, and/or sudden shock sensation in the implanted ear while the implant is receiving power. Thus far, our investigation shows that of the more than 28,000 implanted HiRes 90K devices, only two explanted devices have been confirmed to have this issue. There are 9 other patients with similar symptoms which our investigations have not yet ruled out as related to this issue. For the two confirmed cases, there were no symptoms upon initial activation of device.

However, the patients experienced symptoms after 8-10 days of use. Both recipients were re-implanted with HiRes 90K devices and their clinicians report that they are progressing well.

We are conducting an extensive investigation of this issue using an
independent scientific research organization. Their current analysis suggests that, if present, the issue will first occur within 90 days of device use. However, the onset of symptoms may be delayed after initial activation, and they may continue to occur intermittently.

In the unlikely event that this symptom occurs, continued device use may lead to
damage to the inner ear and/or the auditory nerve. If you or your child experience
pain related to implant use, remove the external equipment immediately and contact your cochlear implant clinician to schedule an appointment. If the evaluation of your device identifies this problem, device replacement is advised.

It is important to note that it is not unusual for cochlear implant recipients to experience overly loud sounds. Most of these cases can be resolved with standard
troubleshooting, such as the replacement of external equipment. The vast majority of these cases are not signs of the issue described above and do not require explant of the device.

We will notify you again as more information from our investigation becomes
available.

We sincerely regret any concern this notification may cause. Advanced
Bionics assures you that we will correct this issue and continue to improve our product reliability.

If you have any questions regarding this letter, please contact an Advanced
Bionics representative at 877-577-4628 (telephone) Monday - Friday 5:00 a.m. - 7:00
p.m. PST

or www.advancedbionics.com (live chat) Monday - Friday 5:00 a.m. - 7:00 p.m.
PST.

In order to assure the effectiveness of this communication, please complete
the enclosed acknowledgment form and return it to us at your earliest
convenience by using one of the following options:

E-mail: confirm@advancedbionics.com


Fax: 661-362-7621

Mail: Self-Addressed stamped envelope

Voluntary Recall of Advanced Bionics HiRes90K Implant

Cliccate Qui

Press release, Sonova - November 23, 2010
23.11.2010


Advanced Bionics (AB), a global leader in developing advanced cochlear implant systems, announced today that it has notified the US Food & Drug Administration (FDA) that it will voluntarily recall its HiRes 90K cochlear implant device worldwide. The device will be removed from the market as a precaution while the company works with the US Food & Drug Administration to address the issue.

This action is being taken in response to two instances thus far where the product experienced a rare malfunction requiring explantation. These recipients experienced severe pain, overly loud sounds and/or shocking sensations, at 8-10 days after initial activation of their device. AB is working closely with the FDA to identify the problem and institute changes to the product to ensure that the HiRes 90K has the highest quality for patients who use the device. This voluntary action is being taken as a precaution and the risk of adverse medical events is remote at present. A notification letter from the company to cochlear implant professionals and recipients is forthcoming...

Madonna (Mia)

She's finally asleep.

Sofia decided she wanted, needed, must have lasagna last night, so I went to the store and bought all of the pre-made ingredients. Obviously, I had her lay out the lasagna noodles and I did the rest. After her second helping, she commented, "Mommy, this lasagna is exquisite!"

This morning she decided she MUST have pancakes. I added water to Aunt Jemima and voilà, pancakes.

At about 5 o'clock she yawned and said, "I miss my Dad." She actually looked at me as she was dialing and said, "Ready Mommy? I'm going to use my sad voice."

Luca flew over with a box of chocolate.

I'm doomed.

*Smile*

The Sound of Music

Kim wrote: "Seems like you have become deeply philosophical in your Jack Benny year. 39. It's a great year. Life is good eternally, even in sadness. Sometimes that is when it's at its best-- looking back. Weird to say that I think, and some people will wonder what I mean but I think you know".

And Debbie wrote: "...Perspective really is everything. Sometimes when I have to do the things to Amelia that no mother should have to do to her child (suction her throat with a catheter that sometimes gags her and other times gives her hiccups for a long, long time or put in a new g-tube, or cauterize her g-tube site, or pushing her through physical challenges -- like crawling 10 feet -- while she cries and howls at me, etc), I cry. It's unfair that a child, who looks to her parents for safety, has to endure any of it..."

I did not work for twelve years aside from teaching some English lessons here and there after having worked since I was thirteen, so that I could give Jordan a voice. On the other hand, I worked like I had never before worked in my life staying home with Jordan.

And he is independent.

Ironically, at the moment in which he reached his independence, my dependence smacked me straight in the face.

I learned that respect began with me.

And it was thanks to my son and what he taught me through his battle for that independence that I have finally achieved my own.

So, to Debbie, I say that there is no other person in the world who offers such a level of safety and security to Amelia as you. And as you know, no other greater life teacher than Amelia for you.

And to Kim, I reply...It's a particular moment filled with particular thoughts about minute particulars. And somehow even throughout the difficulties, I feel particularly fine.

Angles

Today...
there was a story about an 11 year old boy who commited suicide;
my friend received word that she would be operated on for the second time in a month and a half the day after Christmas, I was sitting next to her when she received the phone call;
Luca called to tell me that the first audiologist who ever visited Jordan died of a brain tumor...

As we sat in the cafe, two teenagers were holding hands at the table across from us;
Jordan came home from school with more good grades and a smile;
Sofia has a friend over and they're playing fairy tale video games- the usual Snow White and Cinderella stuff;
I'm still smiling about the fb love from my birthday (thank you:-).

I am soaking in the rays...I don't need that big ball of sunshine every single day...one ray can do the job to push me through the day- I just have to have enough faith to find it.

Sushi for One

I'll be 39 in two days. Avoid the f word please.
I don't know why, but I'm having an attack of nostalgia, I miss my Pop and my family.
Could be because I'm totally alone in this wonderful Tuscany, but I don't think so. I'm learning to fill the void with myself, so that I can overflow for my kids.
I would want to talk to him about impermanence, about how people evolve and choose different paths than the ones they thought they would follow for always.
And I would want him to know that I have learned to take NO for an answer. I've never been a big believer in NO, but sometimes it is the only option.
I would tell him that when you spend money you do in fact diminish in wealth, but that when you give with heart, you become richer and richer to such a level that emptiness does not exist.
I am the luckiest.

Someday My Prince Will Come...Not Now.

I'll be 39 in less than a week, so I did my nails with glitter red tips to distract myself. I painted my bedroom wall red, found two night table lamps with hanging crystals and sheer black lampshades and threw a leopard patterned comforter on my bed. Very French bordello. I'm sure it's a phase.

I guess I needed to make my bedroom my own. I needed to create a sanctuary where I can read, and think in peace. I moved the tv from downstairs into Jordan's room and rendered my sanctuary off-limits to all smelly adolescents. This may mean that I never see Jordan again, but I'm willing to take that risk to re-claim my bedroom from the hoards of smellers that have been frequenting it for the past 13 years.

Yesterday, Sofia Madyson made a comment. She said, "Mom, Snow White would have been more intelligent and not eaten that apple if she hadn't been thinking about that dumb old Prince Charming!"

Absolutely NO Prince Charmings in my bedroom.

Now is the time to be intelligent.

Sur-reality

Last Thursday I took the bus from Grosseto to Florence and the train from Florence to Bologna to speak at 4:00 pm at the Lions International Europe Forum.
I escaped from Grosseto to live another Italian town, share the work I love and learn from others' perspectives. The Lions Club is internationally active in providing assistance to families- and families needing hearing aids, for example, are often referred to programs sponsored by Lions Clubs by the American on-line support groups. It was an honor for me to speak at this Forum.
Here are some pix. The slides I posted, I chose because they reminded me of people who have commented this blog. (Kim, I often thought of you). Adult hearing screening was performed during the event.

Writing blogs and monitoring a forum provides you with a chance to help people who you may really touch, but never meet. This type of interaction is totally surreal, and I oftentimes feel totally disconnected and kind of hanging in the air. Because while you may read the heartfelt comments of a person and know that you make a difference, you can't physically reach out and touch them.

Sometimes surreal relationships are more powerful than reality. Has to do with the power of the mind, creativity and imagination. Empathy is a powerful connection, powerful enough to create international networks via computer. Powerful enough to transmit enough strength to motivate a person to make a decision that a family member you can reach out and touch was not able to inspire.

In Bologna, I shook hands, kissed cheeks, ate tagliata di Angus, and drank Morellino di Scansano with real people in front of me, real conversations, real interaction. I need a little of that every now and then.

Next stop Rome - International Cochlear Implant Congress with the participation of Parent Associations and many parents from the Italian Forum that I will finally meet face to face.
*Smile*