On the second day at the hospital, already quite angry I asked the presence of a neurologist to assess Stella, and an ophthalmologist. At this point, the air in the room was already quite heavy, I knew there was something else wrong with my daughter but did not know what it was nor the extension of it.
Early in the morning the next day, the nurse took Stella for an ophthalmologic evaluation, and I followed all the procedure through the room monitor TV.
The mood in the room was getting pretty tense. Fabio and I did not know what to expect from results. In a routine visit to our room the pediatrician spoke about Charge Syndrome, or Charge Sequence. We ran to the internet and also asked Bruno's opinion, and he disagreed with that suspicion and later Charge was dismissed.
To save the boys from all the tension, sometimes my parents took them for a walk around town, sometimes while they were in the room, Fabio and I would go around the aisles. How many tears, sighs and hugs those corridors witnessed!
Already in the evening, Dr. Sergio Cavalheiro, pediatric neurosurgeon, came to me after evaluating my daughter. In short, spoke about the ACC and how it might or might not affect her life and gave me his card, to give continuity to our treatment with him. He said that at first she would need to make a Magnetic Resonance Imaging (MRI) to make sure liquid inside her brain was not increasing in volume to the point of increase pressure on the brain.
After the neuroped's visit, Fabio had to return home to take the kids to sleep. The day for them at the hospital was quite tiring, there wasn't many activities around for them. Now I was looking forward to the visit of ophthalmologist, but he was taking forever to give us a heads up. When the nurse came into the room to fetch Stella bathing, I asked her if Dr. would not talk to me, after all, the day had passed without him giving me feedback on the evaluation of my little baby. And that gentle nurse, always very caring, was willing to talk with him about it. My mother was with me, she slept with me in the hospital every day, while Fabio slept with children at home, that was the way we found for them not to feel somewhat misplaced.
As I advance in writing, I need to pause and breathe, because it is not easy to remember it all over again...
Anyway, enter the room a serious man, tall and thin, with dark hair, sad eyes, crestfallen. He introduced himself as our responsible ophthalmologist. My mother was sitting on the couch, which was next to my bed. He in front of me, a slender figure. I remember thinking that I would remain strong, no matter what he said, I didn't want to cry. My heart was hopeful, but it did not last long. With a quiet voice he told me... there was not much to talk about: Stella had serious problems in her little eyes, she would not see well and probably would see nothing at all. The left eye presented besides microphthalmia, retinal detachment and the optic nerve was malformed. The right eye was also affected in the optic nerve. He spoke some technical terms. I did not understand anything. I held back tears as I could. But then they escaped. My strength faded. He left the room without even giving me his card. My pain was like a needle in my heart, aching more with each pulsation.
My mother tried to say something, I interrupted and asked her for that moment just let me cry. And she cried with me.
As I remember, tears come all over again...
I got out of bed, went to the bathroom to wash my face. While in there, I tried to start a prayer. But words would not come. I could not form even a sentence. I could not ask for anything, I could not think anything, say anything. I was numb with an overwhelming feeling of emptiness.
I went back to my bed and cried. I wept copiously, cried painfully, pain ripped, a torn in my chest, pain that I had never imagined existed. While the thoughts in my head were trampled, I ask my mother between sobs: "So I'll never be able to take my daughter to a zoo, because she will not even get to see the giraffe?", "She will not be able to see the setting of the sun, the beautiful things God has created?","She will not be able to see herself in the mirror?"',"She will not be able to see me, will not look me in the eyes?"
I knew her left little eye was smaller, but in my ignorance and perhaps insistent hope, I really thought she would see normally. It was only minor, just a cosmetic concern, but she could see, because it was functional. Not even crossed my mind it could be something that would harm either! And the right eye was of normal size, so for me it was completely perfect.
Aaaahh!! It was a blow too hard to endure!
You start thinking that somehow you are to blame for all that, after all, she was inside me. I was the one who carried her during pregnancy, I thought I should have done something that would have harmed her that way.You feel small and helpless, and all that preparation I thought I had now is useless.
I wondered: "How could I have raised a child with so many problems, and such serious problems, if I had already generated two completely normal?", "What I should have done or failed to do to prevent all this?" "At what moment did it happened inside of me? What did I do?" It's maddening! It's devastating! From the first time that something wrong had been seen back there in my pregnancy, so far, indeed, this was the worst thing I experienced. It was the most painful of all pain. I felt nothing. Crushed. Shattered. Impotent. Hopeless.
A breath of life: When He came to me
After departure of the ophthalmologist, it was time for the geneticist. When she saw me crying, she asked what was happening. I said that everyone who came into my room was just to give me bad news.
She sat in front of me, notoriously compassionate, and calmly talked with me about Stella's case from a genetic standpoint.
Stella would make a karyotype test, even though she already had one when still in my belly, but Dr. thought it would be better to repeat the exam. She spoke about some possible syndromes, including Aicardi. But they were only assumptions and we have many missing pieces in this puzzle. To begin with, she was already very happy because Stellinha was suckling very well. Glory be to our God!
When she left the room, my mother and I were talking about everything. I called Fabio, who had just arrived home and realized that he was quite shaken. Like me, he also had many hopes and expectations, and when those are lost we lose ground.
After a quite long time, that nurse who had come to fetch Stella bath returned, and she was bringing my little clean-pleasant-smelly baby, so beautiful! She asked if the ophthalmologist had come to see me, I said yes and asked: "Did you know what he said?" She replied negatively and then I started to tell her about Stella's diagnosis.
I remember that figure standing in front of the door, white uniform, ready to leave the room, listening to me intently. When I finished talking, lying on my bed, she kept looking at me firmly and said with authority and slowly: "This is the word of man, but the final Word does not come from men, the final Word comes from God. And if you believe, and pray, and trust, the Lord will change the history of Stellinha. He is the Lord of life. "She asked: "Do you believe? Because I believe!"
Oh, God ... When I could no longer hear the gentle voice of the Lord while my pain screamed, when I could no longer bend my knees and pray to my God, when I felt alone, helpless, when I lost my ground, when God seemed so, so far I could not reach, or when I could no longer look him in the midst of all this torment, He then came into my room like in a very deep personal way, and spoke to me.
That night, His Glory and His presence filled my room. His care and zeal became evident to me: "See? Understand? You're not alone. You are not alone. I'm here. I see you. You could no longer hear my voice, you could not remember everything I always told you. I teach you so long about me, but today you did not remember who I AM, so I came here to make you hear my voice. I came so you know I am guiding all this, I am the Lord of your story. I came tonight so you never forget it. Do not be afraid."
And the guilt was gone, I understood at that moment that nothing depended on me. There was a purpose. There was my Lord commanding nearly every detail. And whatever it was, hurting like it hurt, He was with me and nothing deviated from his plans, because none of His plans are thwarted. God makes no mistakes. Hallelujah! This is the God whom I serve. A God so close to us!
"All this I have spoken while still with you.
But the Advocate, the Holy Spirit, whom the Father will send in my name,
will teach you all things and will remind you of everything I have said to you.
Peace I leave with you; my peace I give you. I do not give to you as the
world gives. Do not let your hearts be troubled and do not be
afraid."
John 14:25-27
