Thursday, December 27, 2007


I'm about to get deep here, hold onto your pants...The Holiday season brings gifts, hustle-bustle chaos, exasperatingly nauseating lovey-dovey couples and serious depression. The holidays are a time to celebrate family, reminisce, review the past year and suffer for those who have lost loved ones and dreams. As we go through the motions of our daily lives, we don't have time to sit back and ponder our failures and successes nor do we take the time to tell our loved ones how much they really mean to us. The holidays give us a pause just long enough for it all to come crashing down on us...especially for the mom of a newly diagnosed deaf child. The relatives sitting around that table look at her and her baby with...PITY. THERE WAS NOTHING THAT PISSED ME OFF MORE THAN WHEN PEOPLE LOOKED AT MY CHILD AND SAID, "POOR LITTLE BOY, HOW DID HE BECOME DEAF - WAS HE BORN THAT WAY?"
A 26 year old mother of a child diagnosed with bilateral sensorineural deafness just posted the most desperate cry for help I have ever read on these groups. She is in serious difficulty financially and emotionally and is drowning. The most blinding aspect of her letter was how much she was in love with her son and didn't know how to help him because the system kept slamming doors in her face. She was denied three times by her insurance carrier for a cochlear implant. Here's your son's future just a four hour surgery away, but I'm sorry, he can't have the surgery. How does a mother deal with something so damn frustrating? How do you manage the overwhelming feeling of impotence in not being able to help your child no matter what you do, where you go, with everyone saying my least favorite word "NO, NO, NO, NO" in your face. How do you think she is passing her Christmas?
I wrote her a long letter and told her to begin signing. What an amazing opportunity to take control back, to feel like she is doing something productive in a time period
where she feels completely out of control. Take action. Give yourself and your son a method of communication that will then serve as a bridge to better communication when he receives the cochlear implant.
Jordan received his cochlear implant three years ago during this time. We were sitting in the hospital room in the SANTA CHIARA HOSPITAL in Pisa, watching the devastating Tsunami that hit Thailand during his ci surgery. We spent six days in the hospital and the most beautiful woman named Josephine shared the moment with us. She had had rhinoplasty and there we were Jodi, Jordan and Jo, the three JOs lined up in a row (something impossible in Italy, no one has a name with a J). They had given Jordan an iv for his antibiotic and the last bag was taking forever, so I had Jordan in my lap and JO jumped up on a chair to hold the bag in the air to make it drip faster because the line was ripping out of Jordan's arm and he was in pain. She stood and held that bag for thirty minutes, the longest bag of antibiotic ever, she was just an amazing person, a total stranger, and we managed to get through one of the most difficult periods of my life together.
After the cochlear implant surgery and Jordan's tragic mapping experience I went into a major depression. When I saw that Jordan could hear and repeat sentences two weeks after his activation and my speech therapist for the first time in our eight year journey, smiled, my walls crashed and so did I. I began having panic attacks while driving, didn't want to get out of bed, didn't want to leave the house and suffered. I went to my doctor to ask for help when I started fearing for my kids because I was after all the chauffer. He told me about a new wave medication for depression called ciprolex that had NO SIDE EFFECTS, I think that was the name, I can't remember and I said "bring it on." I said bring it on, but the idea of taking a drug terrified me. My life has not been as difficult as most, but it certainly hasn't been easy and I couldn't understand why at that moment when everything FINALLY was on the upswing, I was crashing. And yet, I did understand. No one needed me to be strong anymore, I could be weak and I was. I took the medication for one year and it saved me. It rendered me just numb enough to work through all of what had set me off.
Why do I love these yahoo groups so much? Because I have been where these new mothers are now and I understand their suffering, so maybe just maybe my experiences will help the next. This season brings so much suffering and pain but it also brings unexpected gifts from people we don't even know. Look around at all the people we love and who love us, really look at them and tell them how important they are to you. I guarantee that for one brief moment, all that is difficult, stressful and tragic will pass. I have music back in my life after I had gone a long time without it, and it sounds so good.