Sweet Dreams

Magic (by Shel Silverstein)

Sandra's seen a leprechaun,

Eddie touched a troll,

Laurie danced with witches once,

Charlie found some goblins' gold.

Donald heard a mermaid sing,

Susy spied an elf,

But all the magic I have known

I've had to make myself.

Abbie Needs Help...to Pay it Forward

Ok. We all know that Seek Geo sleeps with a copy of Abbie's magazine cover under his pillow and that she has a thing for anal rice. We know that she is a trash-picker and a leaf-raker and oftentimes confuses words like this: "When a man says bosom, it sounds like booze."
Abbie oozes charm:
I can’t believe that one year ago today, I underwent surgery to have a cochlear implant inserted just underneath the skin of my head. Ever since that day, my life has changed in ways that I never thought. I feel so enriched by the people I have met, the sounds I have heard and the experience of discovering what I have been missing all of these years.

Abbie's take-no-shit attitude can make an anxious man fearless:

David, a newly late-deafened adult over at Five String Guitar wrote this post that truly made my day.
Nine days from surgery. I am optimistic of course, as always. Failure of any sort, is not even considered an option, as is any medical mishaps.As my cochlear buddy Abbie told me back in April, on the eve of my first surgical implant when I blogged about my worries after the surgeon outlined the circumstances that can happen (paralysis, taste disorder and death) " Not on my watch, Sir".

Abbie typed in my comments in response to my fear of the worst case.That made me feel good. I believed her then and do now. I have good people in my life with positive thoughts, wonderful advice, and amazing spirit. I like it.Little things mean a lot? No sir, little things mean EVERYTHING. I have never forgotten those words that Abbie typed in my comments, because they took away a fear, and brought a calmness and determination in me that still serves me as I get ready for my third surgery in six months.



Abbie's Plea:

A person coming from my background – knowing nothing else but living with a hearing loss feels the need to branch out and see how others cope. I had a lifetime of adjusting my eyes to associate the lip formation with words with what auditory input I had. The reason why I would like to go to the ALDAcon is because I want to educate myself on the needs and how I can contribute to empowering those that began their struggle with communication later on in life. It is no surprise to many that I have mentored several people regarding cochlear implant and most of them are late deafened. This is the one group that leaves that just tugs at my heart because I see their struggles written across their face trying to figure out how to make sense of this new dimension of life with a hearing loss.



Progress Made Thanks to the Blogosphere:

Halfway mark reached for ALDA Convention!
I am SO stoked! As you know, I am trying to raise a $1,000 dollars in ten days to attend the Association of the Late-Deafened Convention in Chicago from October 29th to November 2nd because I want to learn and educate myself on the different needs of those that are late-deafened. This past Saturday, I posted a blog asking for help and many thanks to your support, you have helped me achieve over 50% of my goal. I am literally overwhelmed and so honored to have so many of you sponsor me! Thank you is not enough for all of you who pulled through and made a donation in these tough economic times to give me a chance to experience this.



PLEASE HELP ABBIE REACH HER GOAL!!!!!!!!!!!!!!!! Visit her blog here to see how.

When an Idea Becomes a Reality: Live*Love*Hear

Design created by Rachel Chaikof
Karen Feeser posted the following comment on the Pediatric Cochlear Implant Circle on October 1, 2007, right in the middle of our CI Awareness Campaign Discussions:

I was thinking, we have all of these walks, runs, fundraiser ideas
to raise awareness to breast cancer, leukemia, autism, muscular dystrophy....etc...why can we not have something started or maybe
there already is and I am oblivious to it a walk or run for cochlear
implant awareness.
Karen

One year and five days later, Karen left this comment:
Well...I don't even know where to begin with telling you how amazing yesterday was. The 5k event could not have turned out any better than it did...well i am sure it could, but I tell you what, it surpassed my wildest expectations. We had 118 people turn out for the walk and
the run. Awards were given to various age groups and top overall and 2nd overall. It was the most amazing day I could have ever hoped for. I am beyond excited for this event to take place next year. I have learned a few tricks and will be even more prepared to kick some butt next year.

Thanks again to all those who supported me, cheered me on and just helped me turn the light on to organize this event. The Cochlear Implant Awareness Foundation will receive close to $1100 from this event and it was all thanks to those who were there for the cause and those who just love to run or walk. Thank you again- HUGS!!!

I SUPPOSE SHE IS *JUST* A MOM?

NO-

SHE IS A MOM...PERIOD.

And I am SO happy for you!

If you would like to make a donation please do so here. Thank you. Jodi

LOLA

Aaaaaaaaaaaaaaaaaaah! I need a mental release, been way too pent up, bent outta shape, stressed to the max and PMS, so the time has finally come to post about LOLA, my lunatic cat. First, I need to say that Jordan came home from the Mercatino Dei Ragazzi, a huge charity event in Grosseto where a million kids run around selling used toys for money-Spectacular, with 35 incense sticks. He's obsessed with the odor of incense and now my neighbors are convinced I smoke marijuana.

Anyway.

Three months ago while Luca and I were in the midst of our marital crisis and the world was all wrong, I saw my kids suffering. So, when this adorable little cat popped up on our doorstep only to belong to another child, causing my kids to cry in agony, I decided to hunt for a new kitten.

Along came LOLA.

Lola was miniscule when she arrived, and she used to sleep between my legs until she would wake up at about four in the morning to torture me by biting my toes. Then, I left for Dublin for fifteen days, during which time Luca returned home and remained. *smile*

Just like any other female, Lola is such a fickle little girl. She went from sleeping with me to sleeping with Luca. Such a hobag. There is only one problem, while with me she only purred, she is kind of attached to Luca in a different way.
She
licks...boxers.

Instead of the four in the morning toe bite, she begins licking and licking and licking...Luca.
Hmm.
You can only imagine the conversations Luca and I have about this, um, little fetish of Lola's.

You see, animals are excellent therapy tools. We have always had cats that have loved Jordan. When he was super frustrated, he would come home from school, fling Lucky over his shoulder, stalk into his bedroom and cuddle with the cat, who was I have no doubt sent by God. Lucky used to sleep on Jordan's head and sit on his notebook while we did homework together. Lola has that same kid-loving disposition.

There
is
only
one
minor
problem.

Yesterday, on the way to the Mercatino Dei Ragazzi, Jordan says, "Mom...ya know what Lola did last night???"

*JUST* A MOM?

For so many years when interacting with medical professionals, I considered myself "just" a Mom, humbled by their expertise and ability.
*I have since redefined myself*

I have been working on a project with my two favorite health professionals, my pediatrician and my cochlear implant surgeon. The project involves distributing a questionnaire based on the study:Primary Care Physicians' Knowledge, Attitudes, and Practices Related to Newborn Hearing Screening Mary Pat Moeller, PhD, Karl R. White, PhD and Lenore Shisler, MS. (Thank you to Karl White who generously granted us permission to adapt their questionnaire) I have been coordinating, convincing, placating, kissing ass and yes, even begging to ensure that this project comes to fruition. See, Italian pediatricians are lacking resources necessary to provide important information to parents of newly diagnosed deaf babies. The goal of the questionnaire would be to identify problematic areas to then provide the necessary information.

As I mentioned before in another post, my ci surgeon recently published guidelines for Newborn Hearing Screening in Tuscany based on the Year 2007 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs which is perfect timing for me to insert my little self right in the debate.
*Because*
Included within the Position Statement is the following:
“The EHDI system should be family centered with infant and family rights and privacy guaranteed through informed choice, shared decision-making, and parental consent in accordance with state and federal guidelines. Families should have access to information about all intervention and treatment options and counseling regarding hearing loss.”
And, in the meantime, based on this Position Statement...

The group formerly known as ICOP has become GPOD: Global Parent Coalition of Children who are Deaf or Hard of Hearing, and we are currently putting the finishing touches on a proposal for Ferdi for the Newborn Hearing Screening Conference 2010 with the following mission statement:

The GPOD provides communication-unbiased parent perspective and guidance to early identification and intervention systems, educational systems, and support services for families with children who are deaf or hard of hearing. GPOD is an international collaboration of parent groups dedicated to promoting improved systemic protocols and practices which encourage informed choice and the empowerment of families with a deaf child throughout the world.

Note: this group is formed of "just" parents, as well. *smile*

Working with health professionals is an extremely political process, and I am slowly learning. *FTS* There is nothing "slow" about me. I will say this, in this cut-throat political situation, I will assert myself....because
i
am
not
"JUST"
a
mom...
I AM A MOM!

Just like Tammy is a MOM:

WOW! I'm a little taken aback, as Aiden's mom, right now. Let me first say, thank you to everyone for sharing their opinion - isn't it great to live in a democracy where this is allowed? Where freedom of choice is allowed? I try very hard to not place judgement, it's not my job.

Anon. - I think it's wonderful you don't have cochlear implants, if that's what you've chosen! I respect that decision and would love to hear your stories on what it's like to be Deaf. I can only imagine and would love to walk in Aiden's shoes EVERYDAY, just to KNOW, just to have some clue. I can never take away Aiden's deafness, he is who he is, and I wouldn't change him for the life of me. But I do have the opportunity to provide my baby to hear, and as his parents, it's what we choose to do; he can't make this choice, he's six months old!

I provide my daughter glasses to help her see and my son medication to help him breathe. I am so very thankful for the great minds who invented such wonderful technologies to help us along in the world today! You are right, Aiden does not have that choice RIGHT NOW whether he gets a CI or not, but neither does my daughter to wear glasses. It is my right, as his parent, to choose this for him. Aiden can choose once he's older, to not wear his CI. But think of the opposite. Think of me not providing him that choice for later on in life. Think of him being mad at me for letting that opportune time pass for him not to have the chance to learn to hear and speak. At least the day will come where he does have a choice.

Jen - You are so right - I am one lucky person to have such a beautiful and HEALTHY little boy. I've said that myself, since day one. Especially after we confirmed him being deaf. In fact, I always felt guilty grieving for his hearing loss, which, grieving for this, by the way, is very natural. Aiden has two hearing parents with no experience WHAT-SO-EVER to the Deaf world. How could we not be upset?! We were terrified when we found out about Aiden's deafness. Who isn't scared of the unknown? I never looked at it as a TRAGEDY though, never thought my world was crumbling down.

Hell, what you don't know is I had just buried my 55 yr old father 3 mths earlier after taking care of him for 2 years with dementia ... so for you to say I take things for granted?!?! You don't know me or my life, or what I've been through, so this struck me hard, very hard. I had a healthy beautiful boy with a lot of spunk, and no matter what, I felt blessed! Did I pray for a miracle -you bet. I prayed everyday that he could hear, that the dr's were wrong. But when they weren't, we were ready. I read and I researched and I still learn something new about the deaf world everyday! In fact, 6mths later, I am helping other families with this.

I am starting a support group, to let other moms know, IT'S OKAY, everything is going to be okay, no matter what route you take! I take nothing in my life for granted. NOTHING! I live day by day and thank God EVERYDAY for all that I have!!Val, Jodi & Naomi, Thank you for your continued support. It is mom's like you who have helped me in a way I hope to help others one day.

Abbie - ( BTW, Abbie is requesting assistance, click her name to see why!) You are right ... Ryan is your typical male, at 12! I have to say though, as much as he tries not to be, he's still such a mama's boy and I eat it up every chance I get!!!

You Go, Girl!

Six Month Old CI Baby and his Hearing Siblings

Aiden's Mom Tammy writes a blog that chronicles her journey with six month old Aiden:
OUR JOURNEY
Our precious baby boy, Aiden, was diagnosed with profound hearing loss in both ears; he was born deaf. This site is to help me journal my feelings, keep family and friends updated on our son's journey, but more than anything, I hope our story can help ease another family's worries as so many other families have eased mine. Another chapter in our life opens ... this is our journey to and beyond cochlear implants ... our journey to let Aiden hear.

This was her letter to me regarding hearing siblings of deaf children:

Jodi:
Okay ... I sat down with my munchkins, and here's their answers to the questions (Ryan is my very laid back 12 y.o. & Kailyn is my "oh so dramatic" 8 y.o.):

Question 1 - What do you tell your friends about Aiden's deafness?

Ryan - "I don't. I don't think it's a big deal to announce it because it's just who he is."

Kailyn - "This is my baby brother, his name is Aiden and he has "earing" aids so he can hear. He keeps getting new ear molds and he has two hats so he can't grab his "earing" aids out."

Question 2 - What's the weirdest question you've ever been asked about Aiden being deaf?

Ryan - "My friends will ask if he's deaf, I tell them yep and that he's getting cochlear implants, which will help him hear, and they don't really say anything else."

Kailyn - "Friends ask me if he can hear with those things in his ears."

Question 3 - If you could change one think about your brother, or his deafness, what would it be?

Ryan - "His chubbiness." (I told him babies are supposed to be chubby) "Not like that fat little man." (I asked him if he'd change him being deaf) - "Yeah, I guess. I wish he could hear, but I know he will with cochlear implants. It doesn't bother me he's deaf."

Kailyn - "I like him the way he is, but not getting "earing" aids. They bug me with all that noise and I just don't want him to have them anymore. I wish he could hear without his "earing" aids."

I also asked them if there is anything about his deafness that bothers them (we talk about all this often):

Ryan - "It's just an inconvenience" (I got a little worried at this point and asked why) "because it's harder to mess with him and tell him I love him." (not so worried anymore) ; )
Kailyn was done at this point ...

I have to share too, the one thing Ryan was constantly worried about in the beginning was our finances. How much are the HAs, how much are the CIs, how much are all of his appts? This is part of what I'm going to talk about in my write up on my blog, because I learned that preteens worry if they're going to be taken care of. At first we thought Ryan was just curious, but after talking more and more about it, found out he was actually scared we were going to run out of money!

And now...
*Meet Aiden!!*

Make video montages at www.OneTrueMedia.com

CONGRATULATIONS VAL!!!! INTRO: I'M ALL EARS!

Look out Jenny McCarthy! If there is one person, one "Mother Warrior" who has always encouraged me, provided me with necessary info and links, offered her experience and assistance unconditionally - with great love and passion...that would be VAL BLAKELY! And so, it is with great emotion and pride that I share with everyone who doesn't already know, that VAL has written a new book entitled I'M ALL EARS together with her beloved Speech Therapist Tamara Harrison. We have all seen the incredible Blakely children, a true testimony to the professionalism of Tamara.

I've had the book for about three months...*smile* (can't believe I managed to keep my big trap shut) and feel privileged to have been asked to review this inspirational project that not only tells Val's story with Gage and Brook, but which provides extremely useful information for families raising Deaf children. This was what I wrote:

I'M ALL EARS shares a family's journey in deafness- cochlear implant style and provides readers with a very personal account of difficult decisions, daily struggles and lifestyle changes. This insightful and informative book demonstrates how the cochlear implant combined with a strong family support system and creative and stimulating Auditory-Verbal Therapy has enabled the Blakely childrne to conquer a predominantly hearing world and its many challenges with glowing, yet determined smiles on their faces.

The most beautiful part of the book aside from obviously Gage and Brook is that Val and Tamara have created an important resource for parents of Deaf children by defining difficult terms, offering suggestions for quality Auditory-Verbal Therapy and providing access to support groups. I am honored that she included RALLY CAPS in that list of resources.

Click here to purchase I'M ALL EARS.

Click here to read her official blog announcement. Here is an excerpt from her blog:

I've been asked in the past to please give tissue warnings in some of my blog posts so for those of you who know us personally, this might touch your heart in the beginning so I do give a slight tissue warning for the first half of the book. I will note however that there are stories in there to make you laugh also! It's not intended to be a sad book, just a book of my travel from ignorance to advocacy on this road my children have led me on. It's been hard, it's been amazing, and it's taught me so much! I planned a perfect picnic but didn't consider the weather. Sometimes, it's just better to have your picnic despite the weather and I hope that this book will serve it's purpose...to help some family somewhere, know that they are not alone.

To view this video with closed-captioning, click here.

CONGRATULATIONS VAL AND FAMILY!!!!!!!!!