Ethan's Story Part 2

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.

It was the touch of the Master's Hand

I have been recovering from a spinal tap since Tuesday.  In some cases it has been a small party on my bed.  Blessed with friends and family, who have been around me enough to know that not only is my front door always open, but if I am in bed, you are welcome to cozy up and chit chat. Elliot and Emily have made me laugh as they have made several facebook video's from my bed in the past 12 hours.  So where to begin?

Has a dear friend every shared something so personal with you, with the freedom to share with others, but for some reason you want to hang onto it for a while and ponder all that it means before sharing?

I have walked through some of the most heart wrenches moments in the past weeks.  In each moment looking to the Word of God, singing praises to the Lord and knowing that He is going to carry me in all my fears of what the future may hold.

This past Sunday the pastors and elders of our church gathered with some friends, my parents, and my older children to pray for healing over my body.  I have said that this was not just a time of healing, but a time of bonding the Holy Spirit deeper into each of our hearts.  I left knowing that in my obedience to God (James 5) healing would come on many different levels. Perhaps not in my body, but in other ways.  I had already experienced some healing in my past, and in my own heart.

David and I went to our Tuesday appointment.  Pressure of spinal fluid was to determine treatment which was to start right away.  Friends calling to step in and help where needed.  Even a dear friend letting me know she would be at my house every single day to help with kids and get Ethan to school when I couldn't. Meals in the freezer frozen for whatever treatment would come.  The results of the spinal tap resulted in slightly elevated pressure.  Not that of the psuedotumor cerebri.  We were immediately scheduled to see the neural opthamologist who said my tests were all normal.  This makes no sense to the doctors and additional spinal fluid was sent out for testing.  When the Doctor said that she would be writing into the report that tests were normal I was speechless.  I had no words. No shouting from the mountain tops.  A sense of quiet that does not come naturally for me.

When David and I got to the elevator he asked if I was okay. I could only say "why me"?  Why me, the touch of the Master's Hand?  As I lay here two days into recovering from a spinal tap I have had the joy of sharing what God has done in my life, and to my body.  There are some very deep things that God has revealed to me.  Things that I am not ready to share.  There has not only been healing in my body, but in my heart that will unfold and I will share in later blogs.

We have a God that can breath on us, He is here with each one of us, and this week this Great Physician touched me.  I am dealing with migraines from this spinal tap, so I am not yet able to do cart wheels, but I am praising our Lord and Savior and look forward to my time of shouting from the Mountain top.

Happy Thanksgiving to all and bless each one of you who have prayed and encouraged me.

Miracle Monday

It is once again time for Miracle Monday hosted by our wonderful friend Beth at this sight. http://beth-amomslife.blogspot.com/ . I know, I need to figure out Mr. Linky, but this is the best I can do in the moment.

God continues to impress upon my heart that each day is full us His glorious wonder. Miracles are around us. Today my heart was heavy with a situationt that had really started last fall. God has moved our family into a greater place of knowing Him and getting that there will be storms to pass through. We passed through a big one last fall. As our hearts have been working on forgiveness and healing in this matter I am continually blessed with little things that remind me that God is watching over my hearts concerning this matter.

An incident came up this past week that brought back some of the emotion of last fall. I know it's not of God, and thus the confusion over our hearts. My husband and I have prayed over this and I have such a sense of knowing He is really caring for my heart. This morning I woke up thinking over things. It's not something I can just pick up the phone and yack away with a friend over. Yet, being the kind of woman who likes to process outward I am feeling a little locked up inside my head. So I just prayed this morning that God would prevent my flesh from speaking ill will about anyone circling this situaiton and that my life would simply continue to walk in His spirit. The wieghts of my heart have lifted and I realized that I would not give the enemy any more room in my brain.

Then the phone rings and it's a women who years earlier walked through a simular storm. I have maybe once spoke with her on the phone, maybe not even once. But she called for a completely unrelated matter, but our hearts connected and the love, care, and encouragement she shared was what I needed. I needed it today, not last fall, not yesterday, but today. I think this is how God works his miracles. He knows the timing of when our hearts are ready to accept His divine interventions. He knows the miracle for the moment and if our hearts are open to receieve He does give and bless us.

I believe this to be one of His many miracles, and this is just something blessed me so much today. How can this not be a miracle. Someone calls me out of the blue just at the moment I am praying over the need to process outward. Thanks God!!!

Is it really a miracle...?

I have been thinking about Miracle Monday all day. You can find out more at Beth's sight. http://beth-amomslife.blogspot.com/

I was trying to figure out in everyday life all that God brings to me that I may miss. Is He walking by and I have my head somewhere else. Did he just place His hand on me and simply bless me. Did I drive two slow for the guy behind me, only to miss catastrophe in front of me?

As I have shared I have a deaf child. Many circumstances brought him into a hearing world. That was my first Miracle Monday testimony. You can scroll back and find. I ask myself if Emerson was a reminder to trust in God. Very few people know this about Emerson. He could not hear within a couple of weeks of bringing him home. I could not admit it to myself or say it out loud for so long.

Emerson was born a normal healthy baby. He pasted his newborn hearing test. Ethan has a condition called Enlarged Vestibular Aqueducts. Hearing is lost at a rapid rate, so even a positive screening was no indication of what could be…with Emerson. I prayed that Emerson would be fine. However all was not fine. It was the same pattern as Ethan. At first I chose not to pray. This may sound very strange from a passionate praying woman, but I thought okay God here we go again. What is the point of praying?

From the time Emerson was three weeks old, he came along with me on several business trips with an assistant. The same kinds of comments came with Emerson, as they did with Ethan. “Wow, he can sleep through anything.” “He does not even startle at loud noises.” “This baby is sure quiet and easy.” And then Vena, my assistant said it out loud while we were in San Francisco. She had been with me for about six weeks and her job was to care for Emerson while I was working with a client. So she knew Emerson well. She asked me if I feared that he may be deaf too. Emerson was about ten weeks at this time.

I told her that all my babies were easy going and Emerson was no different. I came home and told David what Vena had said. He said he was already thinking the same and I knew I was thinking it. For me, it was like this; if I don’t talk to God about this, maybe “this” is not really happening. We did all the pots and pans banging, purposely slammed door with him close by, and he failed all our home tests. One of the first indications with Ethan was car trips. He would fuss and the sound of my voice produced zero changes in his crying. The radio did not quiet him to listen, nothing. This was the case with Emerson too.

We scheduled a visit to the doctor. A week before his visit, I just started praying that he NOT be deaf. I told God that my heart, my marriage, my family…ME could not handle this. I begged Him through tears. I woke up everyday and through out the day would pray over Emerson. When he was nursing I would look into those precious eyes and tell him it will be okay. God is going to touch your ears.

The night before his appointment our family prayed over Emerson’s sleeping little body. My heart was aching, but during the prayer, I felt a hand on my shoulder. I felt such a peace. I felt that Emerson was healed in that moment. When we were done praying I thanked my husband for putting his hand on my shoulder as he was a comfort. He said he did not put his hand on me. It was then I knew Emerson was healed.

The next morning at his appointment he had perfect hearing. All the sounds of home would startle him and the most amazing thing was when he fussed in the car and I spoke. He stopped fussing and was quiet.

I realize that day and even today it was God teaching me to keep myself close to Him. The outcome is not what is important it’s who we are from one day to the next. He is always watching out for us. Are we taking notice? Are we aware of how His breath is breathing on us? He is that close. I felt for the first time in my life God answered my prayer in a heartbeat and already knew that I could not handle another deaf child. Thanks for reading, elizabeth

Monday Miracle

Here is my Miracle for today:

There are many times in my life, when I blink and realize that God intervened at just the right moment. Ten seconds earlier, or ten seconds later a completely different outcome would have occurred. But God has placed people where he wanted them at just the right time. The placement of these people changed the outcome of my future.

When I was four years old, I decided that I was old enough to walk to the store. I was told to wait for everyone else, but even then I was an impatient person. It was about six blocks to the neighborhood shopping area. When I was there, I remember looking into the windows of a store. A car full of men called me over to their car. I walked over. They told me that my mom was sick and they needed to take me home. My mom was at work and Miss Elizabeth (our sitter) was at home, so I was not buying it. They offered me candy and I said no. But then they offered me a quarter. Twenty-five cents is a lot of money to a four year old. As I reached for the coin, I was then pulled by the man sitting in the middle into the car. In a split second my legs were pulled. A woman had pulled me out of the car and the car sped away.

This woman was the mother of a girl who had babysat for our family but once. She came to our home to meet our family of four little girls. She was in our home for five minutes. It was a month later that she was walking down this street and was able to size up the situation. Ten seconds later or ten seconds earlier the outcome could have been different. I often wondered where I would be today if this angel had not passed by.

These are the kinds of miracles that are in play every single day. Look for them and ask yourself how the outcome would have been. God is so watching out for us. There are times when it does not seem like it, but I know from one day to the next he is. It was evident, that summer day over 37 years ago.