New Eyes

   First you find a good recipe. Then you purchase the ingredients. Once you have all you need, you get to work, and after a couple of hours, you are able to enjoy some delicious cookies, chewy or crunchy...just the way you like them. Don't we all wish that life happened this way? Everything as planned. There are some people who make sure their dreams and plans happen as closely as possible to their desired time frame and specifications. I once had a co-worker so detailed and organized that even menial things were written down in her planner, for example, when to take out the trash. I am pretty sure the birth of her children exactly two years apart was not by chance. There are others, like me, who say they will do something, without really striving to accomplish anything. So you have those obsessed with planning and details, and those more laid-back. I am not a goal setter and my “dreams” have never been well-defined, but there are some things I have obsessed abou

Tears. Why do they come easily to the eyes of some and not others? “My husband tells me I shouldn’t cry just like that, but I can’t help it. I start crying the moment I learn my daughter has another problem.” I tried to acknowledge this mother’s pain. After all, I am also the mother of a special needs child, but I fell short. I didn’t want to say too much and step out of line. I was there in my role of interpreter. This woman knows about my son. She knows I understand somewhat. And I do; yet I don’t, because tears don’t come quickly to my eyes. I have felt that strange feeling in the pit of my stomach, a mixture of sadness, fear, and numbness. But tears... tears don’t come quickly to my eyes. I have felt like crying many times. I have wished I could just will myself into sobbing until my sadness washed away. Am I holding back the tears? Will there ever come a point when those held-back tears will spill over or through as if a dam could no longer contain them or gave in t

This was my first attempt at writing an essay about my experience. I wrote it in April 2012. “The preliminary results show a problem with chromosome 13. This is very serious...,” the doctor said with a grave expression. “That’s the one which is incompatible with life, right?” “It can be.” The doctor and I were referring to trisomy 13, and that’s how our story begins. My second son, Caleb, was born on March 25, 2010, three weeks ahead of time. We knew there was a chance that something might be wrong since a couple of soft markers had been detected during my first level 2 ultrasound. However, after a re-check a month later, we had been reassured by an optimistic perinatologist that there was a 95% chance that everything was normal. After all, if they did imaging tests on each of us, we would all find out we are somewhat different. Caleb was so much a surprise to us as he was to the doctors. You see, Caleb has very few of the common physical traits seen in trisomy 13. He is

Caleb Arturo Morley, 25 de marzo del 2010 Así que eras tú quien en mí crecía Tú, pequeño de ojos redondos y hermosos Tú, pequeño de manitas raras que se asen de la vida y de mi blusa. Así que eras tú quien en mí dormía y despertaba como ahora, a tiempo y fuera de tiempo, cuando mamá está cansada. Así que eras tú quien daba maromas  y pateaba y a veces saltaba por el hipo y me hacía sonreír. Sí, eras tú. ¡Vaya sorpresa! No eres como te esperaba. Pero no importa. Lo que importa es que estás conmigo y que desde que estabas en mi vientre ya te amaba. Y te amo y te quiero, niño sorpresa. Te quiero a mi lado para siempre. Creciendo, durmiendo, Saltando... de ser posible. Y si no, aun así te querré y saltaré por ti. Haré por ti lo que tú no puedas Y seguiré atesorando tu vida.

I wrote a draft of this piece for an inspirational writing class. I don't think it is very inspirational. In fact, it's an "angry" piece, but it tells the story of my heart. I was given several sheets with information about trisomy 13. They listed the physical abnormalities, common health problems, life expectancy, and the mental retardation. “They are able to recognize other family members,” one paper said. I felt my heart sink. “Are you telling me that this is the depth of their cognitive skills? Big deal!” I did not want to learn more. It was too painful, yet I kept looking for information, stories, pictures. I found one of a boy in his teens. “Our Graduate,” read the caption underneath. “What a joke! This boy must have the cognitive skills of a two year-old.” I read about a woman who feared her daughter would be so malformed that she did not want her husband to be present in the delivery room for her birth. I knew exactly how she felt. I too was ashamed of

My son Caleb has cortical blindness. His brain does not process well the information captured by his eyes. How I wish he could see! He is missing so much! Yet I confess I want him to see for self-centered reasons. I want him to see me , to see his brother, to see his dad. I am sure he knows he is loved. He can feel it in our gentle touch and the rough play of his brother. He can feel it through the thousand kisses that have left an imprint on his forehead and his cheeks. Still I wish that he could see our love for him. I wish he could see our smiles and lit-up eyes. I wish he had the sense of sight. Caleb does not eat by mouth. I wonder what months of feeding via the unnatural route of a gastrostomy tube have done to his sense of taste. He does not seem to have developed oral aversions, yet he does not either seem pleasantly surprised by the tangy sweetness of apple sauce. “What do you think, Caleb? One thumb up, one thumb down? ¿Sabe más o menos?” I wonder if Caleb ca

John 9:1-4 1 As he went along, he saw a man blind from birth. 2 His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"   3 "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. 4 As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work. 5 While I am in the world, I am the light of the world." 20 weeks into my pregnancy with our second son, Caleb Arturo, my husband and I learned that something might be wrong with our little boy. As frightening and disappointing as this news was, I did not want having a healthy child to be the focus of my prayers. In my work as a medical interpreter in a pediatric hospital, I am often surrounded by extremely ill children and their struggling families. How could I request not to be one of them? As the years go by, I am more convinced that a proper reply to

I looked at the ultrasound screen in the radiology room. It read Morley ^Caleb^ Arturo. Seeing his name on the screen took me back to the time when I was searching for a name for my son. I knew I wanted "Arturo" to be part of his name. "Arturo" is my brother's name. Arturo is tall and handsome, bright and intense. I've always said he's the smartest of all five of us. So when I learned my son may be born with a chromosomal abnormality that would render him less than "perfect," I second guessed my name choice. I looked for biblical names, names that would remind me that God was with us. Such a name would be appropriate, even necessary to help us face and embrace whatever was coming our way. But "Arturo"? Could I name a child who would most likely be mentally retarded and have abnormal features "Arturo"? It didn't seem to be a good match. I felt ashamed. In the end, we chose to name our future baby boy "Caleb Art

"Escribo porque necesito recordar y superar. Es a partir de la memoria y un sentimiento de pérdida que la pasión de crear surge." Isabel Allende.  Tomado de su página de internet. Reflexiones/Por qué escribo. Cuando leí estas palabras de Isabel Allende, me identifiqué de inmediato con ellas. Yo siento lo mismo. La historia de dolor y belleza de mi hijo Caleb me mueve a escribir. Lo que aprendo a través de esta experiencia impacta cada aspecto de mi vida y, por consiguiente, a cada persona que cruza mi camino. Espero me convierta en una mejor persona, que sepa amar a todos por igual. Perla