Dear Cristina, Today I read your email and today, I am praying for your mama heart. I wrote this for Ethan, so have a record of those first moments of being implanted. Now I pass along to you.
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This is part 2 of a journal entry I made back in 2005.
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One Sunday evening in October I lost it. I mean sobbing, on the floor crying out to God kind of losing it. I was bitter, I was angry. I could not forgive the "system" that had failed Ethan. Had Ethan been diagnosed correctly, had we not been told to keep waiting yet another six months Ethan's life would have been so much easier. Our lives would have been so much easier. I was angry and bitter towards my husband. He got away every single day from the craziness of home. He had 45 minutes in the morning and another 45 minutes in the evening in his car commuting. I was angry over the fact that he could have quiet, he did not have to deal with the day in and day out struggles. I begged him to take days off for a break and was angry that he didn't. Why God, why me? I lay on the floor in a heap of smeared tears. I opened my Bible and read Job 1:22...through all of this Job did not sin nor did he blame God...
I sat on the floor and pondered this knowing the story of Job, this did bring me some comfort. That night I prayed like I never had and surrendered Ethan completely. I knew it would not change his diagnosis, nor would tomorrow be any different. Perhaps adopting a different mentality would keep me from signing up for anxiety drugs, or depression drugs..because I would say often that I am one drink away from being an alcoholic. I truly was no longer able to cope.
The next morning I had an early flight out of Portland to Los Angeles. I was meeting with a client from 9:00am-11:00am. I asked David to schedule me on the first flight out of Portland and return on the last flight out of LA. I planned to wander over to Beverly Hills to shop and take a days break from the realities of home.
After my meeting this woman asked if she could take me to lunch. I was caught between my own time in Beverly Hills to feeling that I should accept her invitation. I chose to accept her invitation. During our lunch she asked me about my children and like a proud mama I spoke of Elliot, Emily, and Eric. (Emerson was not born at this time). I shared with her that I cry when I speak of Ethan and having such a raw heart from the night before the tears just spilled over my chicken salad. As I spoke she pulled out her cell phone and dialed. I thought, at first, it was just a quick calls he needed to make and I paused. She handed me the phone and said you need to speak with this person. She told me that her husband was one of the founders of the Hearing Institute of UCLA. WHAT!!!! Am I sitting here with an angel. If I go back to her office will it even exist.
The man on the other end spoke with a beautiful South African accent. One that was only familiar to having been around an old family friends over 20 years ago. It turned out that he knew this gal well. (Allison that is you if you are reading this).
He shared with me the option of Cochlear Implants. An option? What? Why had I not been informed of these before. After our conversation I looked at this woman who brought hope into my life with one lunch, I was reluctant to attend, and then one phone call. God was working all along. This moment in my life changed the future of Ethan for ever. I was able to forgive and let go of the anger, the bitterness and move forward. When I returned home I was able to share with David this experience. He could not believe it. The UCLA guy told me exactly who to speak with in Oregon. It turns out that this person would be at OHSU where my husband works.
On November 9, 2004 I left a message with the person we now call Dr. Don. At first I was a little scared and intimidated to learn that his title was about 14 bigger than life words long. I had decided that as the mama bear protects her young I would let this man know how HIS system had failed Ethan. Bring it on buster. Truly that was my mindful thoughts.
On November 12, 2004 I received a call from Dr. Don. Within five minutes of our conversation Ethan's world had new hope again. Dr. Don was able to pull up Ethan's records and reviewed his history with me right there on the phone. He boldly shared his concerns over Ethan's lack of care and even never having been informed of Early Intervention care until almost three years old. He apologized over and over again that our son had slipped through his system. As he reviewed Ethan's records, he kept saying that I can not believe how this could have happened. In that very first conversation he said that Ethan would be taken out of protocol process for a Cochlear Implant. A process that typically took 8-12 months at that time.
On November 22, 2004 Ethan went in for a MRI and CT scan. It was discovered that Ethan had a rare disorder called Enlarged Vestibular Aqueduct with complete deafness being the prognosis. We learned that had these tests been done in his infancy he would have and could have been implanted by 12 months of age with little or no delays in language. All over again I had to grieve and work through anger, bitterness, and resentment.
I chose that day NOT ever to look back but to look ahead and work with where we were at. It would serve no one for me to walk with bitterness, anger, and grief. I just said out loud in my car with Ethan screaming in his car seat which was typical. I said God, your are real in my life and I can not forgive on my own. Please take the grief, the bitterness, and the anger from my heart today. I realized that in that moment it was not one's intentions to have Ethan fall through the cracks. He just did and our lives were miserable, and God had offered hope and it was going to be my job to embrace that hope with confidence, joy, and a renewed spirit.
On January 26, 2005 Ethan underwent surgery for a Cochlear Implant. He would then have to wait four weeks to have the initial stimulation of sounds turned on, so his incision could heal.
On February 22, 2005 My almost three year old played at a table in Dr. Don's office. Dr. Don turned on Ethan's device and said "ba-ba-ba-ba" "Ethan-ba-ba-ba-ba". Being implanted is not a guarantee, but the hope is that his head, ears, cochlear would respond. With the first sound Ethan stopped looked around at all of in the room, our entire family and a family friend. Out of his mouth came the following.."ba-ba-ba-ba". I cry as I type this. He heard, word perfect and repeated back exactly those first sounds. There was a light in Ethan's eyes that we had never seen before. The surgery was a success. Ethan could hear. It was a technological miracle that day. The video camera was rolling and we have recorded those first sounds and many more that came for Ethan.
That was six days ago, to the date of this journal entry. I thought when Ethan could hear the tears would stop, but they are only more. A day does not pass that I have cried tears of complete joy. The car ride home from Dr. Don's office was so precious. His brother Elliot looked at Ethan and said "hi", and Ethan said "hi" back. The two said hi back and forth the entire car ride home. Within less than a week Ethan is able to say "mommy come here" in a very young baby kind of way. But he can say it, and like an baby and young toddler learning to talk Ethan now understand what it means to use his voice. Ethan has learned that baby brother Eric makes noise when he cries, that there is a dog on the other side of the fence and that planes are loud. He points to his ear all the time to tell me that he heard something, looks with this questionable look and then I explain or show him what it is.
Ethan walks from one room to the next tapping on everything. Chairs, tables, walls and asks me if I can hear dat? It is six days into Ethan hearing. I was holding him, singing a song and I said Ethan I love you. And he said back to me "mama I love youooooooo".
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Today as I remember back I am amazed even now with what Ethan has accomplished in all the catching up he has had to do. He is a drummer. Not just banging on walls and tables he is amazing on the drums. He is smart and twice this year in first grade has received Honor Roll. He has the same first grade teacher Emily had almost 14 years ago. He is blessed to be in a private school that does not pay him any special attention. He is expected to achieve just like any normal hearing kid and he does. He will talk your ears off. No kidding!!! Being locked up inside for almost three years he's got lots to say. It has now been over four years, six months after his first Cochlear Implant he received his second.
Ethan just turned seven this week and he is the delight of our lives. He is hilariously funny, fun, and can build "any age" Lego set. He is kind of proud of his Lego building skills. Thanks for reading. I wanted to share this in the week of Ethan's seventh year. Be blessed.
