New Eyes

In his book, Beyond Loneliness. The Gift of God's Friendship, pastor Trevor Hudson states that from scripture we know that "the unpredictable God can surprise us in all things, in all places, and in all situations... His risen and ascended presence, as the writer to the Ephesians puts it, fills the entire universe." (Eph. 4:10) Nonetheless, he proceeds, "there are some special Gospel addresses where our Divine Friend promises to meet us." (p 74) According to Hudson, the first of these addresses, or places, is Communion. "Indeed, in Holy Communion, Jesus Christ tells us he wants our friendship." (p. 75) While some churches believe the bread and wine in Communion literally become Jesus' body and blood, my church tradition sees them only as symbols pointing to his death, resurrection, and second coming. Therefore I used to approach Communion, or the Lord's Supper as we call it, simply as something we do "in remembrance of him." Pasto...

I would like to give thanks... To the doctor who eased my worries after my second level 2 ultrasound. For even though he was wrong, I was able to enjoy the rest of my pregnancy. To the doctor who told me the truth---Trisomy 13 CAN BE incompatible with life, but not necessarily. To the doctor/colleague who came to visit me at the hospital after hearing of my son's diagnosis. To the doctor who offered a home visit in case I wanted to avoid coming to the clinic during a difficult time. To the doctor who acknowledged she had assumed my son would die. To the doctor who shed a tear and said she hoped to contribute to his quality of life. To the doctor who always spoke using the future tense, "When Caleb turns 3, 5, 30..." To the same doctor who said not to be surprised if my son needed a kidney transplant by the time he was 15 and then added, "Because when one of my kids needs something, I make sure they get it." To the doctor who has not seen my c...

Hace unos meses, escuché a mi hijo Daniel y a su amigo Bjorn hablar de uno de los niños de la iglesia. Este niño de casi tres años está lleno de energía y siempre quiere imitar lo que hacen los más grandes. Al igual que ellos, juega pesado. La única diferencia es que todavía no mide las consecuencias, así que a veces muerde y avienta cosas. A Daniel le gusta jugar con él, pero a veces se queja y dice que “le choca”. ---Si fuera como Caleb, sería perfecto, ¿verdad?--- comentó Bjorn. Daniel, por supuesto, le dio la razón. No es la primera vez que alguien describe a Caleb de esta manera. ---Mami, ¿por qué están débiles los músculos de Caleb? ---Porque su cuerpo no se formó bien. ---Mifis es perfecto. A lo mejor no es una vida perfecta, pero sí divertida. Y yo creo que su cerebro es más inteligente de lo que creemos porque está tratando de gatear. Son varias las palabras que se han usado para describir a mi segundo hijo. Algunas de ellas son frías e impersonales. Sindrómico ,...

For a moment, just for a moment I feel the pain of what could have been I watch you in your chair during circle time You are not like the others Are you out of place? No, you belong there You belong You belong in that classroom as much as you belong in my life.

Last year, I attended my son Daniel's Pops Concert, the 4th- and 5th-grade annual music program. Daniel's 4th-grade class danced to the tune of "On Top of the World," and I felt on top of the world watching my son dance along with his friends. Yet the real magical moment for me came when two fifth-graders took to the floor. These two boys are in my son Caleb's Special Education class: one has Down syndrome, and the other some other kind of developmental delay. As these two boys danced, tears rolled down my face. I cried out of joy and out of gratitude that they had not only been included like everybody else, but that they had also been given prominent roles. The people in the auditorium did not know, but their clapping and cheering when these two boys danced spoke to me of acceptance. When they clapped, I felt they were also clapping for my son.

"Mom, how old is my cousin Erick?" "He is six." "Now I can imagine Caleb better... I can imagine him liking Pokemon. I can imagine him drawing. Mom, which do you think would be Caleb's favorite color?" I can imagine my second son, too. I have imagined him hiding behind me at the doctor's office. I have imagined him getting on my lap and asking me to read him a book. I have imagined him holding my hand as we walk. Here I am in a world I had indeed imagined as if looking in a dim mirror. After all, I have seen my reality play out in other families' lives for years in my role of medical interpreter at a children's hospital. Yet you have to live it to really, really know. And in our case, it turns out this world is also beautiful. Now I don't have to imagine how much a child with profound mental retardation can alter your world and shake up your ego. I don't have to imagine how, in spite of it all, you would not want him to be...

I honestly did not feel the need to seek a support group, let alone a support group on Facebook, when I received an invitation to join first one group and then another. Soon I was hooked. I can easily now spend an hour reading and replying to posts about children with needs similar to my son’s. For the first time, I was looking at pictures of families like mine. I saw posts about challenging moments, illness, and death. I saw honesty and vulnerability, pain and sadness, and I liked that because to me that is reality--- I see that where I work very frequently. I have cried over children lost and I’ve been filled with fear for what might come our way. I have also rejoiced for the happy moments and the recoveries. There is a time to cry and a time to laugh. Being part of an online support group showed me as well what’s going better and worse for others. For someone like me, who often falls prey to social comparison, this is a double-edged sword. On one hand, I’ve seen how good we’ve ...