New Eyes

Real, he is real He sits on my son’s bed He has a beak and wings His neck’s no longer firm His color’s dirty green He was brought to life by my child’s love And he will live forever Whether on his bed, or in his memory Bufflehead is real He is loved He is needed He listens and watches as life unfolds Nine years have gone by Yet at bed time My son still calls me to his side And I am so glad I belong in his bed too November 24, 2015

A smile Cooing Laughter Calling Eyes which shimmer even if there is no light in them A body which sways back and forth Excitement in my voice received with gladness He is here five years later He is here, and I am happy

Simeón y la esperanza Cuando se cumplieron los ocho días y fueron a circuncidarlo, lo llamaron Jesús, nombre que el ángel le había puesto antes de que fuera concebido. 22 Así mismo, cuando se cumplió el tiempo en que, según la ley de Moisés, ellos debían purificarse, José y María llevaron al niño a Jerusalén para presentarlo al Señor. 23 Así cumplieron con lo que en la ley del Señor está escrito: «Todo varón primogénito será consagrado al Señor». 24 También ofrecieron un sacrificio conforme a lo que la ley del Señor dice: «un par de tórtolas o dos pichones de paloma». 25 Ahora bien, en Jerusalén había un hombre llamado Simeón, que era justo y devoto, y aguardaba con esperanza la redención de Israel. El Espíritu Santo estaba con él 26 y le había revelado que no moriría sin antes ver al Cristo del Señor. 27 Movido por el Espíritu, fue al templo. Cuando al niño Jesús lo llevaron sus padres para cumplir con la costumbre establecida por la ley, 28 Simeón lo tomó en sus brazos y bendijo a

September 5, 2015 “Hi, cutie!” the woman with a prosthetic arm said with a smile. For some reason, as if people could not tell, I often feel compelled to clarify my son is not your typical boy. “He can’t talk.” “That’s OK,” was her reply. “How old is he?” “He is five, but he is extremely delayed.” “That’s OK,” she said again. She proceeded to tell me about her nephews and nieces as if my son were one of them, that is, just another child. Indeed, he is. But on days when my mood is down, and the sky is grey, when I long for what I don’t have nor ever will sadness takes over and clouds my view. Yet that woman brought a bit of sunshine to my morning. My explanations were unnecessary. She didn’t care. She appreciated my son for who he was. Perhaps her own share of trouble and heartache made her the person she is. Neither pity nor curiosity, just an acknowledgement of the presence of another human being.

Alear. (Del fr. ant. aleier, y este del lat. alligāre, atar). 1. tr. Producir una aleación, fundiendo sus componentes. Te miro y siento una mezcla de amor y dolor. Te miro y me maravillo. Te miro y me entristezco. Te miro y siento el vacío de todo lo que no fue ni será. Te miro y me siento agradecida por lo que es. Te miro y me pregunto qué pensaré, qué sentiré cuando crezcas. Te miro y me recuerdo que yo también cambiaré. Tu crecimiento y el mío están unidos, Fundidos como el amor y el dolor que siento cuando te miro.

During his first year of preschool, Caleb received an invitation to attend his friend and classmate Jace's birthday party. Because it fell on a Sunday, I was going to decline so I would not miss church. Going to church is pretty much non-negotiable in our home. This time I had second thoughts. "You know, Paul? This might be the only party Caleb is ever invited to by a healthy, 'normal' kid. I am taking him." Paul agreed. One of my husband’s greatest fears is for people to ignore our son, and this family was including Caleb. I felt grateful and honored, scared and nervous. I knew it would be strange and uncomfortable for me to be surrounded by healthy kids and their parents. We would be the "weird" ones, the ugly ducklings. I felt sad. I went in spite of my sense of inferiority and held Caleb in my arms as he napped while the other children played in the toy room. He woke up after a while, and I put him down on the floor. He began to balance on hi

My son Daniel likes to collect all sorts of “treasures” he finds in the street, in parking lots, etc. Over time, he has collected anything from candy wrappers to fruit labels on the refrigerator door to sticks to rocks to ordinary stuffed animals. Don’t you try to suggest it is time to give things away, or get rid of them! They are too close to his heart to let them go. Behind each there is a story --- the walk in the park, the nice-looking apple, the time I dropped him off at preschool and we found a tiny figurine, the trip to the zoo, or the trip to Duluth. I, for my part, used to collect the cards sold from time to time at the candy store next to my elementary school. I can’t even remember what those cards were about. Where they pictures of puppies? Disney characters? Who knows! But I had to get them all. So I kept buying them and trading those cards for which I had duplicates, until I filled the little book which came with them. I don’t keep a collection of things anymore,

A couple of months ago, I overhead my son, Daniel, and his friend, Bjorn, talk about a little boy from our church. The boy, who is almost 3, is full of energy and wants to imitate everything the older kids do. Just like them, he gets rough. The only difference is that he still doesn’t have impulse control, so he’ll bite and throw things at you. Daniel enjoys playing with him, but does complain about him being “annoying” sometimes. “If he were like Caleb, he would be perfect, right?” Bjorn said. Daniel agreed, of course. I couldn’t help but smile. It was not the first time I had heard Caleb being described as “perfect.” Caleb is my child with a severe disability called Trisomy 13. “Mami, why are Caleb’s muscles weak?” Daniel asked. “Because his body did not form properly,” I explained. “Mifis (Daniel’s nickname for Caleb) is perfect. Maybe not a perfect life, but a funny life. And I think his brain is smarter than we think because he is trying to crawl.” Caleb has been describ

June 20, 2015  "Jane" should be the name of a flower. Maybe there is a flower with that name. I don't know. If there is, I hope it is beautiful. Bright yellow with long petals, and a soothing aroma. The kind that will make you feel happy and grateful, like a sunny day. This is how I would describe the beautiful woman who has taken care of my kids, particularly Caleb, since he was just a fussy, skinny, Trisomy 13 baby. Beautiful. Bright. Loving. Kind. Caring. Soothing. Unforgettable. As I write, my eyes well up. This is a goodbye. Caleb is graduating from the home care program at Children's. This is very good news. He is doing so well that he does not need home care anymore. There is no reason to have a nurse come to our home to check on him even if it's only every two months. The only problem is that closing this chapter in Caleb's life also means losing Jane, who volunteers through the program. Paul and I knew the time had come. We were considerin

Casi no he escrito, pero no significa que no he relatado en mi memoria los eventos del día, las palabras oídas, habladas y calladas, así como aquello que algún día pienso escribir. He sentido, también: alegría, envidia, añoranza, inferioridad, agradecimiento, seguridad e incertidumbre. He disfrutado y admirado canciones, más que por sus ritmos por la letra de contrastes, porque así es la vida. "By His wounds, we are healed". He escrito en el aire con tinta invisible una carta a mis amigos de Facebook: que ahora entiendo, que no es jactancia, que han escogido retratar los buenos momentos de la vida y compartirlos, pero que a mí me parece injusto sonreír cuando otros lloran, mostrar los viajes que nos hemos regalado cuando otros no tienen ni para llevar a su familia a un parque y comprar a los niños un globo. Pienso en los niños que bolean zapatos o venden chicles en Iguala y miran desde un lado mientras mi hijo y mi sobrino saltan contentos en el brincolín. Y me remuerde l