I will begin by describing this disease as a link to love, to knowledge, to learning, to innocence to life.
Before telling my personal story, I explain that according to
(fuente) Kernicterus, nuclear jaundice, or neonatal bilirubin encephalopathy is a serious neurological complication caused by the elevation of normal bilirubin levels in the neonate's blood. It is due to the direct action of free indirect bilirubin on the central nervous system, inhibiting several very important biochemical processes, such as oxidative phosphorylation of mitochondria and protein synthesis "
When the doctors approached my room on April 11, 2002 to tell me that my 7-day-old son had just done a "KERNICTERUS" look at them, thinking, is it a new flu? I did not know what I was really facing, what I was saying, I remember clearly that day, I kept quiet and after a sigh I asked, "Is my son okay? His response was: NOT accompanied by a "Surgically emergency intervention" what I felt ?, fear, desire to mourn, fear, in short many mixed feelings, but my hopes placed on God. My son was operated twice, what do they do? They change the blood, they cover him like a mummy from head to foot with gauze and they leave him a double duct by the navel where while on the one hand the blood is taken out by the other he is being admitted with new blood. I will not tell you what I felt those hours in which my son was in the operating room, from there he went to intensive care. They were difficult days, eternal hours, unforgettable moments, my son was given two breaths and almost I could not visit him because he did not stop crying and that did not do him any good. It is true the connection that exists between mother and son, I could verify in all that time that my son was there. After a few days, a doctor came and told me that if I wanted to take my son home, I thought and I said to myself "I could not stand" but I will enjoy it as long as God decides, I only answered him I must do? And she told me when I had a month to take you to a neurologist, you know what I felt HOPE, FAITH, and so I took my son to my house. I was not afraid, despite my young age of 21, I was not afraid, to the unknown, I decided to wait and fight and keep fighting.
While waiting for the month of birth, so many things happened, he did not sleep (he suffered from cerebral irritability), he did not want to eat, it was months of anguish, I even thought about committing suicide if my son could not stand it, there are many things that happen to us the mother by the mind. My expected month arrived and I went to the neurologist, they want to know how I left that consultation, disappointed, sad, I shouted, I wanted to die, the diagnosis of the doctor; my son was not going to see, he would not talk, he would not walk, he had to give him liquified food because he could not tolerate food, so I said why did I go to the doctor? I came out really worse, how cruel can the doctors be at the time of giving a diagnosis ?, but they know that I never lost faith and hope and I kept looking for more neurologists, not neurologists that gave me a positive diagnosis, I wanted one that would give me A hope.
And so it was, I met Dr. Nancy a neuro pediatrician, who did not give me hope gave me thousands and keeps giving them to me. The first thing he said to me "I am not God, I do not know if your son walked, he will listen and all those things that they have told you, I will tell you ENJOY YOUR CHILD, LEARN FROM HIM. Those words made me think that only GOD knows what may happen in the morning, meanwhile I enjoy my son and I learn from him.
Before arriving at all this, I want to tell you that what happened to my son was MEDICAL NEGLIGENCE, they almost let my son die, they let him raise the bilirubin to the level of doing a "kernicterus" he got 40 total bilirubin and I almost lost it.
I have learned many things from my son, to see him laugh, to look them in the eyes, to touch him, to hold him in my arms, to fill me, I am proud of him, of everything he has taught me, he taught me to be a mother, he taught me to feed him, clean it, to know it, to speak in the language of eyes as they tell us.
I LOVE MY SON.
My son was not given 2 years of life, because my friend told them that my son today is 15 years old and close to turning 16, he is a child diagnosed with "Mixed Cerebral Palsy", motor deficiency, (he does not walk) but he speaks for the elbows, he looks at me from afar, near, he listens to me, he pays attention to me and much, much more. GOD CAN EVERYTHING, and as long as I have faith and hope I will see my son reach wherever GOD wants him to arrive.
I do not want to say goodbye without telling him that God and life have been generous with me, because I have two beautiful angels, two more sons who support me and take care of their brother and despite their young age, they are children of 8 and 4 years old. : we are a SPECIAL family.
"WE ARE SPECIAL, ALL! IN ANY WAY, EVERYONE WITH HIS WAY OF BEING"
I AM A SPECIALLY PROUD MOTHER
I present my son. The love of my life José Leonardo. MY WARRIOR.
