Tuesday, September 29, 2009
Del Dottore house...
Sofia- Mamma, tell me a story...
Mamma- Once upon a time, there was a really curly little girl who was so beautiful that when she walked outside the sun hid behind the clouds and with such a generous heart that the flowers bowed their heads when she danced by. Then, one day, that little curly-haired girl was feeling blue. So, when she walked outside the sun shone as brightly as it possibly could and the flowers started emitting fragrances that Chanel could only dream of re-creating until that little girl with her first missing tooth smiled a smile so dazzling that the world began to breathe again.
Sofia- Moooooooooooooom....short story!!!
She grabbed her fairy doll, rolled over, smiled and thought of the tooth fairy until her stomach began rising and falling.
Jordan- Hey Ma, can you come lay down with me for a while?
Mamma- On my way.
Jordan- Mamma, is Dad taking me to school tomorrow.
(Me thinking to myself, how do I answer that if he can't hear me or read my lips in the dark? So I sit in silence and contemplate as I hold his hand)
Jordan- Ma, if the answer is yes, move your hand up and down like this!
Mamma- (moving hand up and down)
Mamma- (moving hand up and down)
Jordan- Do I have to take the bus tomorrow?
Mamma- (moving hand left to right)
Jordan- (Laughs) Are you taking Sofia to school?
Mamma- (moving hand up and down)
Jordan- What time?
Jordan- I'll hold your hand and count, stop me when it's the right time.
Mamma- (moving hand up and down eight times for eight o'clock)
Jordan- 8 o'clock?
Mamma- (moving hand up and down)
Sunday, September 27, 2009
This post is an act of desperation and self-motivation.
My stress level, I swear, has never been as high as it is in this very moment. I usually have no problem juggling 5000 different things, but when you start having emotional trauma, it gets a little difficult.
I have to hear things like "Think of your kids!" "Who's paying you for what you're doing and the time it's taking from the kids?" THINK OF YOUR KIDS!
I will say this: In every single thing I do, I think of my kids. I think that I DO NOT want them to grow up with a provincial mentality even though they live in a town with just that. I want them to know that God gave them intelligence and the possibility to live that intelligence with compassion. When you are able to combine intelligence with compassion, it your responsibility to do something to help the next. I want them to understand and appreciate the fact that wealth is not only to be calculated by what is in your bank account, but that each and every one of us, based on experiences lived, begins accumulating personal wealth...and sometimes that interior richness far outweighs the possibility of buying a hot dress to feel good about yourself for two hours.
There will come a time when my kids will grow and begin seeing me as an individual- not just as a mom. They will look at me and judge me. They will have many questions that I will answer- they will either like my answers or not. Maybe one day they'll read my blog and be shocked that the woman wiping their butts, cooking and cleaning actually had thoughts, dreams and ambitions of her own.
Who knows whether they will admire me or resent me. I only know that I will continue giving them a view of the world at 360°, so that they will have a greater possibility of choosing their direction...on whichever island they may land.
Friday, September 25, 2009
Quite possibly the heaviest material I've ever seen. I will comment on this video from a psychological perspective and not in regard to the issue of the "cochlear implant fix"...we've already over-debated the subject. The video gave me a profound sensitivity check in regard to how my blog may be viewed and perceived by members of the Deaf Community. I write to inform and provide resources through my experiences with my son. Having seen this, I can appreciate how the material I write can be offensive- the photo of the doctors with the thumbs up was horrifying. The picture of the surgery...disturbing.
Very thought-provoking video.
Thursday, September 24, 2009
My sister used to say to me, "You sound just like Mom!" or "That's something Dad would say!"..."Don't you know who you are, can't you say something that Jodi would say?" Used to piss me off, can't tell you how much. Because I would ask myself if it were really true that I had no self-identity. Was I really just a reproduction of those around me, did I really have no self-identity to call my own?
I spent eleven years taking care of my child, teaching him and giving him a voice. That was my only role. I got lost in a provincial town with provincial minds and limited vision. My small town places the family at the center of its soul and any deviation makes you an outsider or different. I put this town on the map in so many ways and in the end, this closed mentality could potentially destroy me...if I let it.
Funny thing about taking on your husband's name, it takes away all that you created pre-marriage. Names are so important. In Italy, women do not take on the name of their husbands, so I changed the name for nothing. I was so excited to be married and be a part of Luca that I sprinted to the records office to become Mrs. Del Dottore. In a snap, I was a new woman. I went from being the Jodi who mimicked mom and dad to Luca's wife and Jordan's mom...blink of an eye and I MADE THAT CHOICE.
I have not one regret.
I only know that somewhere along the line, I found out who Jodi was and suddenly all my names came together. I'm proud that my last name is Del Dottore- that name stands for thirteen years of sunflowers, audiological visits, labor pains, grilled chicken salads, bed and breakfasts, fighting with doctors, asserting myself as a mother, late night asthma attacks, guitar recitals, curls, tira mi su, frustration, faith, commitment and love and sofa-bed island. All of the shared experiences helped me discover the me I am and when I look in the mirror...
Although depending on the moment...I may even cry.
Wednesday, September 23, 2009
My eyeballs are falling out of my head from smashing my face in the computer screen the past four days. I can't sleep because I keep going over things in my brain- every once in a while I laugh at myself..totally normal.
Today, Jordan came home from school and told me there's a boy bullying him...the same pain in the ass who has trouble in school and acts like a total delinquent. In the past, Jordan's classmates helped defend him, now I think he has that edge of maturity to defend himself. But he's obviously annoyed. I'm meeting with his support teacher on Friday...we'll discuss how to work on this. Having a support teacher in the classroom is not only extremely helpful for Jordan as she understands his needs in the classroom better than he does, but she is my direct line of communication to what goes on in the classroom. And to think there are parents who are too embarrassed to request assistance for their kids. Middle school is a touchy situation. Unfortunately, I can't just run in to save the day, because then he'll be made fun of for calling his mommy. Finding the right balance between letting him know I'm there, without actually being THERE is the goal.
Aside from the drama, the past four days there have been a minimum of six kids in my house and if you don't have Wii, I highly recommend it just so you can have the surreal experience of walking in on four kids smacking at the air with the remote controls.
Happy air-smackin' kids, productive Mamma.
Tuesday, September 22, 2009
I posted a Note on Facebook called "Be Honest" that another mom tagged me in...and my friend left a comment ((((((JODI)))))), so I was like, "God, what did I write!!!??? So, I went back and read it again and got all teary-eyed. Unbeknownst to me, I was raw. I am like a living open wound..which got me to thinking.
I found out Jordan was deaf and put up a wall. Actually there was kind of a built in protective wall because everyone around me spoke Italian and I didn't know a lick of it. Not being able to speak to the people around me about my child isolated us from the rest of the world and let me deal with my emotions alone as those around me dealt with theirs. Every now and then, the playground scene with the little kid pointing at Jordan's hearing aids immediately followed by the mom saying, "Shhhhh!, Don't say anything.." would poke a hole in my finely constructed igloo.
I'm not like that now..I'm kind of barriers down, smash me if you want. But that's okay. I feel a lot more and live a lot more honestly with myself and my kids. Everyone handles things differently at different points in their lives. We all get colds, but there's the person who stays home from work, the person who over-medicates, and the person who works overtime.
Sofia steals my lipgloss and jewelry all the time, so that I can NEVER find ANYTHING I need. Today, I went downstairs to do homework with her and in her hand was the coolest shade of lipstick I've ever seen. She gave it to me and we applied. It was like receiving an unexpected gift in the mail- same emotion. No idea where it came from, it wasn't mine-I only do lipgloss...
After homework, she ran across the street- after looking both ways *smile* to see if her friend could play. She couldn't, so Sofia ran back home...*after looking both ways* and sat down next to me. There happened to be a blue piece of chalk on the sidewalk next to us- one that my dog from hell didn't eat- so she smashed it up and started rubbing it into the cement so that both of her hands were blue. She then proceeded to rub me. SOFIAAAAAAAAAAAAAAAA!!!! "Mommy, I want to play 'blue hands'"!
*Give me strength*
We have been taught since youth to always look both ways. I have spent so much energy looking both ways before crossing that street that I almost missed what was right in front of me.
Friday, September 18, 2009
In 5 minutes I can:
- fill my gas tank
- brush my teeth, wash my face, put in my contact lenses, throw my hair in a ponytail and apply lipgloss
- jam to Bob Marley on my ipod
- order a six-piece Chicken Nugget Happy Meal, pay and pick it up
- send an email to my best friend Julie
- walk my dog
- have a cappuccino
- pay a bill at the post office on a good day
- have a crepe with nutella
- reach one million children by speaking before 800 pediatricians.
*What would YOU say?*
Thursday, September 17, 2009
Sofia is ticklish under her neck. Jordan the same. They get that from me. My friend Mara used to piss me off because she would stick her finger under my neck at the most absurd moments...drove me crazy.
So, I'm thinking...
I will be speaking before 800 pediatricians and three Italian ministers about our experience while struggling to get my message across in Italian as I sweat and shake through the speech I still have to write.
I imagine they're ticklish too - just have to find the right spot.
Btw, this man may be speaking after me...(he may not make it to the podium)
Tuesday, September 15, 2009
"Each choice is only an appearance of such. Each relationship has already been pre-determined. Each event occurs in the way and for the purpose for which it was planned...this is destiny!" - An eighteen year old future medical school student.
So what about all of the suffering in between?
*Enriching material used to help us grow so that we may make it through the next phase of desperation*
Today, a woman, who would like to call herself my friend said to me, "You are thirty-eight years old with two children, one of which has a disability...who's gonna want you?" Ouch.
Hmm. What if I don't want to be wanted and I'm happy being the Independent mother of two children full of abilities and life? What if there are more important things at certain times of your life than relationships with men?
A year ago, I was driving down the street in my own lane, when a man driving a motor-scooter took a curve on the wide side and slammed into the side of my car. I was impotent...couldn't do anything- just watched as he hit me. Sometimes, in life we have limited choices whether on the road or in a relationship, but as long as I have the power to choose...
- To read my book on the train. So surreal the situation I saw earlier today: The train stopped and a grandma with a really bad dark dye job got on, slammed down the window and began waving to her grandkids who were waving back. The thing was, I couldn't see the grandkids, but I knew it was grandkids she was waving to by the intensity of her wave, the smile on her face and the excited, yet sad look in her eyes- as if she were trying to mix up the sweet with the bitterness of saying goodbye. That woman kept pounding that wave until her hand worked no longer. Then, she sat down. Her grandkids will always have the memory of saying goodbye to their grandmother as she heads off by train, and I will have a memory of their memory- like watching a film only it's live by train.
- To combat surrealism by buying a pair of new boots to keep me grounded *smile*
- To write to share what I'm living so that it will help the next.
- To call myself Independent instead of Single, because Single sounds like a hit record and not a woman who lives...which brings me to the last of the list:
...and to give it up to destiny.
Monday, September 14, 2009
I've been in a rut called Life. Then, two days ago something happened. I put on my favorite pair of jeans and a green t-shirt that says, "A wise man once said, 'If you don't know, ask a girl'" and sat down outside to enjoy the day. Suddenly, the phone rang and I stood up to go into the house to answer it. However...big however...the button on the ass of my jeans got stuck in the hole of the outdoor plastic chair and slammed me back down seated- couldn't move.
There I was- alone, phone ringing, children screaming and I couldn't budge. I shook my ass to the left and right, but that damn button wouldn't come undone. I tried taking my pants off, but the button was so stuck that I couldn't exactly do that. Luckily I have long arms, so I wrapped my right arm under the chair and started fiddling with that stubborn button until...
It's the little things...
Saturday, September 12, 2009
We are lightyears behind in regard to closed captioning here in Italy, but with the new bill: H.R. 3101, The Twenty-first Century Communications and Video Accessibility Act of 2009 - the USofA is kicking ass.
*H.R. 3101 would ensure that individuals with disabilities have access to emerging Internet Protocol-based communication and video programming technologies in the 21st Century*
I've been researching the Bill to try to provide as much information as possible to motivate you to contact your Representatives, and I found that this blog gives the lowdown the best (Note: Jamie Berke is championing this cause on facebook):
...(This is an important topic. All of us, including the tireless Louise who has done a number of transcripts, know it's important for the hearing-impaired to have them, but it's also essential in making videos much more effective to include them. It helps them go viral. Unfortunately, unless provided, it's very time-consuming to do them as a blogger and very expensive if you pay to have them done. When it's original video (as in shot by one of us), we often post the video first and add the transcript later when we have time. It's always a balance of timeliness versus accessibility. - promoted by Pam Spaulding)
There's a way you can help. H.R. 3101 is a law requiring that some media online be made accessible - usually television or corporate produced media, but it's a huge step in the right direction and your voice on this issue could help turn this bill into the Americans with Disabilities Act of the 21st Century. Considering that education is moving to the internet (how many computer classes are based almost solely on video tutorials?), however, it's only a step. Right now it's in the Energy and Commerce committee, and has some support. Please contact your reps and ask them not only to support the bill but make it as wide-ranging as possible. It covers yesterday's needs, but not the needs of today or tomorrow.
In the process of trying to get the word out to the Deaf community about this bill, I created a very quick video blog (below) in American Sign Language and English in conjunction with SignCasts, a Deaf community journalism website, explaining some of the issues as clearly as possible and giving some idea of the numbers of captioned media online. I include it here out of interest.
Since making the video, I've heard CNN and PBS actually do have some captioned media online - but can't find it. I'm particularly concerned about news and educational programming; as a teacher, it's hard to find media accessible to everyone in the classroom. I remember vividly working with friends to subtitle Martin Luther King Jr's "I Have A Dream" speech; we were unable to find a subtitled copy. (The irony is that the same banner carried by MLK was subsequently used in a paradigm-changing protest at Gallaudet University.)
Thank you for your time. I hope you are able to help get the message out and that I have made my case clearly. Visibility is another thing my two communities have in common: we're invisible unless we speak up.
*Ditto what he said! Do something, please*
For Action Alerts click here.
Copy and Paste:
Use https://writerep.house.gov/writerep/welcome.shtml to write your Representative (request cosponsoring HR3101), and http://www.senate.gov/general/contact_information/senators_cfm.cfm to write your Senator (ask for similar bill).
Friday, September 11, 2009
I was obsessed with the Wizard of Oz as a child. I couldn't wait til that day, once a year, that the film came on television. It was usually televised on a night that I slept at my grandparents', so after a penny poker tournament we would all gather together to watch. I was terrified of the Wicked Witch of the West, but fascinated by her at the same time. Sofia Madyson has the same reaction, and she always screams for me to sit with her when she appears.
One thing really annoyed me about that film- the character of the Cowardly Lion. Totally an oxymoron, lions are not supposed to be cowardly, they must be kings and roar. I can't remember..what exactly was the Lion's excuse for being cowardly-there's always an excuse? If anything it should have been that ridiculous curly 'do and red bow at the end to make him weak. Instead it made him stronger.
Actually, I could use a new 'do and a red bow right about now. One person who is not at all cowardly is my friend Debbie who wrote a seriously touching post the other day and I haven't stopped thinking about it since I read it. She wrote:
Nestor left this morning to shoot in Puerto Rico for the week. It's always stressful the night before and I usually don't sleep well. He had a car pick him up at 6:30am. Around 6:25am he came into the bedroom, gave me a kiss and hug goodbye, then gave Amelia a kiss and slipped out the front door. It's only a few days, but I always have very mixed emotions about his leaving.
He's going to work and that's always priority around here...it's the leaving. As Mom, I don't get to leave. I'm here...ALWAYS. Day in and day out, that's what I do. It gets to me, because I don't even know how I could separate myself to leave Amelia. Nobody knows her sounds or coughs like I do. Amelia can't tell us when she's not feeling well...but even in my sleep, I can hear her breathing change and I know I need to wake up and give her a breathing treatment.
The thing is, I know for most of my friends and family, who have kids, that this is a temporary setup. There will come a day when you won't need to listen for your baby's breathing patterns, they'll call out to you or get out of bed, walk to your bedside and get you. I pray for the day that this happens with Amelia.
Which leads me to my teary afternoon. Whenever Nestor leaves town, I take a little opportunity to watch a chick flick that I know he would forbade me to even play on our TV. Today it was "Mama Mia" (I live in NYC and am the last person on earth who hasn't seen the B'way version). I was happily watching this flick when it got to the end, where Meryl Streep is singing to her daughter about all the cherished memories she holds as snapshots in her mind. It is here that my floodgates opened up and whoosh...I couldn't stop crying. I tend to not think too much about "what will be" because to be honest, with a special needs kid, you just don't know. The greatest things could be just around the corner for Amelia, but as I watched this mother get her daughter dressed for her wedding I couldn't help being sad. I don't know what lies ahead for my little girl and I want her to know every joy life holds.
On the other hand, being the glutton I am, I am also reading a novel written by one of my all-time favorite authors, Kathryn Harrison (read Poison if you want a really fantastic intro to her writing), called Envy. I haven't read much yet, but it's about a married Psychoanalyst, who is a sex addict and a father of two healthy children(boy & girl), in which the little boy drowned. It's the unthinkable to lose a child. So here I am on the other side of the spectrum, crying while I read my book, thanking my lucky stars for the gift I have, Amelia.
In other words, my child may never live the life that I imagined for my child when I was carrying her in my belly. I don't know if Amelia will walk, talk, eat, go to college, fall in love and get married, have children...but she will live the fullest life we can give her. The roller coaster that is Amelia, is the most exciting, fearful, tearful, exhausting, ecstatic and blessed ride I have ever been on. Ahhh, parenthood...I guess none of us ever get to actually leave it...EVER!!!!!
My experience with Jordan completely wiped out anything remotely cowardly that may have been left over from my childhood days of being terrified by the Wicked Witch of the West- don't mess with me, I'll rip you apart.
However, no matter how many battles we fight and win, or how many professionals we convince and sway...there's always a little bit of insecurity in all of us. And we always run into cowards. See, "coward" is a totally different ballpark. Coward is knowing that you are a lion-the strongest of the entire jungle, who instead of admitting to insecurities and rendering them strengths, abuses others to hide the insecurities.
As moms, it's totally the opposite. We don't realize we're kings of the jungle until we've battled every cough, sore throat, asthma attack, night at the emergency room, science project and peon who messes with our kid's cochlear implant processor. We turn our insecurities and fears into strengths and we make the world a better place for our kids. At least we try.
How do you deal with a coward? You can't because they just run and hide.
How do you deal with the Wicked Witch of the West? Give her an Advil.
And in life...it takes more than a badge that says "courage" to make one courageous, it takes being a mother.
Wednesday, September 9, 2009
Without a doubt, I get the air-headed mom award. It took me eight days to get batteries for my camera when my parents were here and after finally taking pix, I can't find the wire to download them. So, I will have to tell the tale pixless.
Well, my parents stayed at that famous hotel on the beach where Jordan took a jellyfish in the face and for the last two nights transferred to my air conditionless house. I thought they would pass out- literally the two hottest days the entire summer: my mom walked around with a pack of frozen peas in her bra screaming, "How the hell does my daughter from Pikesville live LIKE THIS!!!!???"
I'm highly adaptable.
We left for the Siena synagogue at 7:00 am, all six of us in my fit-five-person car, slammed in...really enjoyed that warm, cozy family feeling as Sofia Madyson's elbow jammed into my chin. Jordan looked handsome in a white button-down shirt and a pair of khakis with a kipa that I believe my step-father gave us before we moved to Italy.
My mom had prepared to wear a very pretty sleeveless black dress with black hose and heels, but when I saw it, I said, "Mom, this is an orthodox synagogue in ITALY and to arrive requires a mile and a half hike on cobblestone medieval streets...DO SOMETHING!!!"
The end result- she threw on a pair of black leggings and gold sandals and a spanish-looking shawl to cover her shoulders- God I'm sorry I don't have that downloading thingamajig. LMAO
I wore a long black skirt, black short-sleeved shirt and my grandmothers gold locket.
Just in case anyone was curious.
Okay. We arrived, still don't know how we did it, because my stepfather can't walk, at 9:00 am. The rabbi greeted us, kissed Jordan's cheeks, exchanged mazel tovs and started the Shabbat Service. There was another Bar Mitzvah the same service, adorable boy, and until about 10:30 we were the only ones in the service. People arrived fashionably late.
Allow me to say this: we have cochlear implant radar. Obviously, my mom, Sofia and I were sitting on the opposite side of the synagogue from Luca, Eddie and Jordan, so every now and then we would send signals to communicate. I will say that Jordan can still read my lips like a champ, because I managed to scream at him a couple of times for being restless...wordlessly from across the synagogue. At a certain point, I see Jordan frantically trying to get my attention because an elderly man wearing a hearing aid and a cochlear implant entered the synagogue. I spent ten minutes screaming silently for him to walk over to the man to show him his- yes, in the middle of the service, because everyone seemed to feel free to say hi to everyone else within the service, but Jordan was too shy.
Then the man left the room to walk outside and Jordan got up his courage to go and talk to him...keep in mind, this is his Bar Mitzvah- very laidback atmosphere and friendly. He spoke to the man, who received his implant from Prof. Martini in Ferrara and returned smiling from ear to ear. Cochlear implant moment.
Then....................................................................the Rabbi motioned for Jordan to come up to the Bima and my stepfather followed. As I told everyone in other posts, this was a symbolic Bar Mitzvah, reading from the Torah was not possible as Jordan had never studied Hebrew, so he was responsible for reading the prayer before and after the Torah reading. Read 'em like a champ!
It's just one of those moments where you sit back and think...I never ever in a million years thought my deaf son would be able to speak at his Bar Mitzvah, then the flashbacks slam you and the whole thing becomes overwhelming. Combine that with thoughts of my Pop and I had no chance. At one point the Rabbi from Florence, which is the head synagogue site of Tuscany, covered Jordan with his Tallis to bless him. I looked at my mom, she looked at me and I started digging for the kleenex.
We didn't understand a word of the entire ceremony, it was all in Hebrew. But there was a lot of love and faith in that room and some things go above and beyond language.
After an incredible kiddush...Jordan had fries at McDonalds.
Wednesday, September 2, 2009
Drama on the beach. To ask for and receive a relaxing vacation for my poor mother and stepfather would just be too much, we must have an incident or a true vacation Italian style it would not be. Yesterday morning, I drove Sofia and Jordan to the hotel on the beach with the beautiful calm sea five steps away, sent Jordan to swim and hauled Sofia upstairs to drop off some bags with a change of clothes and my flatiron. As I smilingly walked out to the beach, I was greeted with my mom running to the sea and the sound of Jordan wailing in pain.
I still had my car key in hand, threw it to my mom who threw me a towel and booked into the sea fully-clothed to meet Jordan who was shaking and screaming with a hand covering his face.
*Jellyfish on the eye*
I covered his eye with the towel and took him to the shower to wash it off. Wrong move. When bitten by a jellyfish, you should continue bathing the burn with sea-water. The lifeguard brought us ice and sent me to the pharmacy, which was across the street to get some cortizone cream. My mom couldn't understand a word of Italian, Jordan was still moaning and could only see out of one eye. Obviously he couldn't hear because he can't wear his processor on the beach, so I had to literally pry open his one good eye so he could read my lips for each new unfolding event.
I ran to the pharmacy- closed. (of course)
Luckily, the the beach emergency room was within walking distance, so we started heading there on the boiling black asphalt- I looked down and noticed that Jordan didn't have his sandals on, so obviously I gave him mine and burnt my feet on the way there. A mom's gotta be a mom.
After walking back and forth from the Ambulance station to the emergency small room, we finally managed to find a doctor, who was too beautiful to be a doctor- I mean this woman was like Baywatch Doctor-blonde, cleavage and huge blue eyes. She assumed control of the situation, laid Jordan on the table and broke out huge chunks of salt on gauze. Well, Jordan dealt with that for about two and a half minutes before I had to rip it off his eye. We washed it off, amidst screaming and desperation and applied a type of cold cream to soothe the burns.
I had my mom asking what the doctor was saying, the doctor continuing to try to talk to Jordan even after I explained that he couldn't hear her- so I was translating for my mom, prying open Jordan's eye to explain to him and then...all of a sudden Sofia Madyson was starving, thirsty and ready to die.
I don't think I've ever sweat so much in my life- it was dripping, I don't even know where it was coming from but I didn't have the energy to wipe it off, so it stayed.
To make a long story short, the jellyfish were out in force yesterday, to the point where people were bucketting them in the morning- of course I didn't know that. Jordan swam out to the buoy and got stung so hard it threw him back in the water. According to his version, he ripped it off his eye and squeezed it to death, so that he has now become a jellyfish killer-in one version I just heard as he told the version to his friends, he even looked it in the eye as it died.
All's well that ends well- no more sun or beach for Jordan for at least a week. His Bar Mitzvah is Saturday morning...would be nice to get him there in one piece in peace. We shall see.