one year ago, terrified in a sparkling silence
[Originally Published on 12/27/2015 on www.atlasoflight.com, the blog that preceded atlasartpress.com]
The day after Christmas one year ago, I laid our dear little 4-month-old baby, Alexandria, down on the CT scan bed at Children's Hospital. Three weeks earlier we were told she was 100% deaf in her left ear. But on this day, we still did not know what was causing it. She failed her newborn hearing screening in her left ear at birth. Most may not remember their baby's newborn hearing screening in the hospital because most babies pass it. We were told that it was most likely due to amniotic fluid in her ear, but they would re-test in a month. She failed the re-test and needed an ABR to see how much hearing loss she had. We still thought that if she was hard of hearing it wouldn't be much. The audiologist [rightly so] did not lead us to believe anything until they knew the facts. Neither of us had any family hearing loss history and she was healthy. Here is an email excerpt that I sent the day before the ABR:
...Alexandra's big hearing ABR (auditory brainstem response) test is tomorrow at 8am. Please pray Alexandria sleeps for it so they can get the information they need. I'm also praying - if it is God's will - the test reveals a miracle has occurred and her ear is perfect...we have been anxiously awaiting it to determine the extent of the hearing loss. She must be sleeping for the entire test (2 hrs!) in order for it to work...
The next morning, we tried to wear our daughter out, get her up early, whatever we thought would allow her to fall into a deep sleep for the ABR. Every staff person we encountered at the hospital was clearly a master of the art-of-dealing-with-nervous-parents-of-young-children. After the test, the audiologist gently and kindly said Alexandria had no response to sound whatsoever in her left ear.
She was 100% deaf in her left ear and was not a candidate for hearing aids because there was nothing to "aid".
My eyes welled up with tears and my husband just stared. She assured us that she knew this was hard for us to hear, but they will be with us every step of the way. I emailed friends and family this:
...We made it through Alexandria's test yesterday morning. She woke up a few times, but we were able to coax her back to sleep - lots of wires that she kept grabbing, but all in all they were able to get the information needed for the test. There were three electrodes on her head and then ear phones in her ears. She was a trooper throughout all of that plus Brad's stomach growling and me clenching my jaws in anticipation while trying to be incredibly silent!
We were glad to hear the results immediately after the test from the audiologist, although we are very sad to share that she has full hearing loss in her left ear. It is called Unilateral Hearing Loss - this means she is not a candidate for a hearing aid as there is no hearing.
The next step is to work with with the physicians at The Hearing Center at Children's Hospital to do a medical evaluation and CT scan to see the anatomy of her inner ear and possibly determine the cause. There are many causes - one of which is genetic - which is what we are hoping for. Especially since she had the hearing loss present at her newborn test the day she was born. They may also need to do an MRI depending on what they see in the CT results.
We spied little blessings peeking out like wildflowers:
The first and foremost blessing is that she has been gifted a perfectly healthy right ear...we have access to some of the top medical facilities for children...we have a family member whom is an audiologist here in Pittsburgh...it is a huge blessing that we caught this so early...as long as we monitor hearing in her right ear (the good ear), we'll be right on track...
The CT scan will most likely be in January because of the holidays...We pray that they do not find anything that throws up any red flags and we can proceed with our little baby girl's life...Alexandria so far is perfectly on track with all of the developmental milestones for a 4 month old! (she'll be 4 months on 12/14!). We also believe Vivienne will be such a wonderful support for Alexandria as they grow up together!
I seem really positive, right? I wasn't really. I was trying to be positive in the way that I SHOULD be as the "perfect mother and wife", but I was terrified of that sneaky, infamous Mr. Unknown. You know that guy called "Unknown" that keeps us up at night, distracts us, and makes us incessantly want dark chocolate and red wine. "Unknown" nags us and pokes us over and over and over saying "What if_____. What if _____. What if _____." Then you say patiently "Please be quiet, Mr. Unknown. I will not allow you to infuse your worry-worry-vibes into my life. Yes, when I was younger I thrived on your spontaneous excitement, Mr. Unknown. But now, this is my child and you are killing me." My husband and I really tried to be patient with Mr. Unknown and stay off the internet to try to find answers to why she might be not hearing in her left ear. Buuuutttt...we may have snuck a few questions into the wise old Google Shaman.
We found out about various causes for hearing loss including head trauma (which we knew wasn't the cause), simply anatomical structure, genetic reasons, and finally an acoustic neuroma (a type of brain tumor). This last one was of course, the one I dwelled on. But the CT scan was not until January, so how does anyone expect us to wait that long to find out???
I thought "this could be Alexandria's first and last Christmas" like any mother would, right? My husband called our baby girl's pediatrician to see if he could talk to the ENT doctors to try to move up the CT scan date because we couldn't sleep and were very anxious. God bless them, they listened and sympathized and figured out how to get us in the day after Christmas.
It was during THESE WEEKS--following December 3 that I told Mr. Unknown to leave me the hell alone and I called upon God more desperately than any other time in my life. It was the night after the ABR news, while cradling our sleeping Alexandria in the dark, in the middle of the night in her nursery, IN SILENCE that I just sat and screamed in my mind:
"God, God, God, talk to me! I have tried my hardest to believe [this is called FAITH, friends] that you, God are with me RIGHT NOW, always. I have been strong. I have been praying. I have seen you come through in many areas of my life after hardships. Yes, I know that someday I will see a reason for all this, but right now I NEED to know IF YOU ARE WITH ME. Can you please just reveal yourself in some way!?"
It got quieter in that room--I can't really explain this as it was already quiet--but it got quieter. SILENT. AS SILENT AS IT MAY FEEL IN A DEAF EAR. I listened and listened and listened. I heard silence in the physical world, but I listened inside myself with the deepest longing in my heart. Then I heard a voice as crystal clear as the most tropical, blue oceanic waters come out of the silence.
I HEARD amid the SILENCE. Breaking through the silence, the voice said:
"Alexandria will be fine. She will live, My Love, My Child. I have given this to you, so that you will come to me. So that you will stop and listen, and give your most precious time to Me."
I STOPPED and LISTENED. SELAH. I finally stopped and listened. I called upon God with my whole heart in silence and heard his voice. (John 10:27)
Her CT scan on December 26 of last year revealed that it was not an acoustic neuroma, but a Narrowed Cochlear Aperture in her ear that holds the acoustic nerve. We also found out later that acoustic neuromas are very rare in infants. Her hearing loss was permanent, there is nothing they can do about it, and they actually did not even see an acoustic nerve at all. But we were praising God that it was anatomical and we could move forward with learning about how to care for a child with hearing loss.
You do not need to be able to HEAR in the earthly, physical sense to hear God.
My little Alexandria can HEAR HIM THROUGH HER DEAF EAR loud and clear when she comes to him (Isaiah 35:5, Matthew 11:5). He will whisper softly, but clearly to his Alexandria Rita:
"You are perfect, my baby. You are exactly the way I wanted you to be. In fact, every little intricacy about you, I hand-crafted for a greater purpose. Stay close to me and you'll see."
We all can HEAR HIM or FEEL HIS PRESENCE or SEE HIS GRACE when we just SELAH. These are DIAMONDS made of God's goodness and love start REFLECTING HIS LIGHT when we become silent and seek him. Talk to him. Cry out. Reveal your anger if you're angry. Share deep concerns and desires. Go ahead and spill your guts to a God who is bigger and full of more pure love than we can fathom.
I am well aware that God does not always answer our prayers in the way we want or expect, but at this time, he kept Alexandria on earth with us and gave me a sparkling diamond (his loving voice) that one night in the nursery. That moment in silence with God is how Atlas of Light all started.