Monday, March 20, 2017

Casi siete años

Casi siete años. Siete años de descubrimientos, siete años de darte cuenta de que no sabes nada, de que el amor es más fuerte que la pena, de que las fuerzas salen del vacío, de que se acaban, pero sale el sol al otro día.


Casi siete años. Siete años de conocerte mejor a ti misma, tus prejuicios y tus luchas, lo bueno mezclado con lo malo, que los sueños rotos se reparan, que es posible el regocijo por las cosas simples.


Casi siete años. Siete años de fallas, siete años de remordimientos y añoranzas, siete años de tristezas y desvelos, siete años de reiterar que vale la pena aunque otros no lo crean.


Casi siete años. Siete años de verte en el suelo de la sala, feliz en tu rincón del mundo; siete años de sonrisas, silencios, miradas perdidas; siete años de cargarte, mi bebé para siempre; siete años de sentir que mi amor te toca, aun si no puedes decir nada; siete años de saber que tu vida es frágil, que algún día caerá la bomba.


Celebro estos siete años; doy gracias por ellos; doy gracias por tus amigos, doy gracias por tus maestros, doy gracias por la gente que te quiere. Doy gracias porque Daniel no está solo, porque tiene un hermano; sí, diferente, ¿pero qué importa?



Sunday, December 25, 2016

Desconocidos

Me preguntas con bondad si mi hijo está enfermito. Te respondo que nació con un problema cromosómico.

--¿Pero se puede curar?

--No, lo que tiene no se quita.

No recuerdo qué contestas, pero sí recuerdo tu expresión de tristeza. Deseabas que mi hijo sanara y te lo agradezco de corazón. Por siempre recordaré ese día cuando pasábamos por revisión en el aeropuerto de la Cd. de México. Quizá te estoy imaginando, pero creo que recuerdo tu rostro porque has tocado mi alma.


Notaste a mi hijo en un parque donde abundaban los niños, pero tu corazón ya estaba predispuesto. Tengo entendido que alguien cercano a ti también tiene una discapacidad, por eso pensaste en mi hijo. Me cuentan que te acercaste con un plato de trozos de sandía para él. No sabías que mi hijo solo se alimenta por sonda, pero lo que importa es el detalle.

Muchas son las personas que notan a mi hijo, pero contadas las que se acercan o le hablan. Es difícil. No saben qué hacer. Pero tú no solo te acercaste: quisiste traerle un regalo de lo mejor del verano.

Solo te vi de espaldas cuando me contaron lo que habías hecho. Debí haberme acercado de inmediato, pero esperé y cuando quise ya te ibas. Me tardé demasiado y ahora solo puedo darte gracias en esta página. Gracias, muchas gracias.


Saludas a mi hijo cuando nos ves entrar.

--Hola, guapo.

--No puede hablar.

--No importa. ¿Cuántos años tiene?

--Tiene 5, pero está muy atrasado en su desarrollo.

--No importa.

Comienzas a contarme de tus sobrinos como si mi hijo fuera como ellos, un niño más. Y lo es, pero a la vez es tan distinto que, aunque es obvio, siento la necesidad de aclarar que no habla, que es como un bebé, que no es normal.

Tu mirada y tu voz no comunican curiosidad ni lástima. Platicas conmigo y con mi hijo como sin duda lo harías con alguien más. Tu gesto me levanta el ánimo esa mañana nublada en la que mi corazón se sentía tan triste como el día.

No sé cuántos desconocidos más algún día se acercarán a mi hijo con ternura, con regalos, con un saludo afable. Ojalá sean muchos, sobre todo cuando deje de verse como un niño.

Tuesday, November 29, 2016

Meeting Jesus in my son's disability

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." Pastor Hudson's reflection has helped me see this ordinance as an invitation to come near Jesus, to have a personal encounter right there and then with him as I eat the bread and drink the wine in remembrance of him.


The second address where Jesus meets us is in the friendship of others, particularly those we may consider soul-friends. "Through them, Christ's risen presence meets us. As such, those friendships represent a Gospel address we need to visit as often as we can." (p. 78) A soul-friend is someone with whom I can reflect on my friendship with God.


The third address, and the reason for this essay, is the least of these.


Hudson reminds us that Jesus spent most of his time with people who were struggling in one way or another. "He reaches out to the lonely. He includes the excluded. He feeds the hungry. He heals the sick. He brings peace to the chaotic. He comforts the grieving." (p. 79) And as Matthew 25:31-40 states, whatever we do for the least of these brothers and sisters of Jesus, we do for him. "Every act of mercy done for someone who suffers is therefore also a direct kindness to Christ..." (p. 79) We thus meet Jesus in the least of these.


My second son is among the least of these. Being born with a chromosomal abnormality as severe as trisomy 13 changed the course of his life. The normal path and goals we come to expect have been distorted to the point that they cannot be followed nor pursued. In a society that values achievements and worships beauty, my son and others like him are at the bottom, and they will never amount to much. Success for them is not in the cards. Some may view them as a burden to society.


My son is mentally retarded. He drools and wears diapers. He is 6 years old, and he cannot sit, let alone walk. When Caleb was born, Jesus met me, and he gently exposed my prejudices. Mixed with my love, I felt shame. I felt disappointment and anger. My son would not meet the expectations of society---my own expectations. Jesus helped me face the ugliness of my thoughts without condemnation. He understood because he knows our hearts. But more than anything, he revealed his profound love for Caleb and others like him. He told me he loved him as he loved Martha, Maria, and their brother Lazarus. He showed me that while others may reject the lame and the sick and the nobodies, he never did and he never would. He was not afraid to touch the leper nor was he disgusted. He is not afraid to touch my son and would gladly wipe his mouth and change his diapers.


Jesus told me he grieved with me. He said he saw my pain, and that it hurt him, just like when he saw the woman cry over her only son. He is sorry that our society does not understand--- "Forgive them, for they do not know what they are doing." He also told me this had not been his will. The brokenness of this world is not what he intended for us--- "An enemy has done this." He said he would be with me--- "In this world you will have affliction, but I am with you always." He told me this is not how it all ends--- "Never again will there be in it an infant who lives but a few days...

These realizations carried me during some of the darkest moments of my life---When I feared my son would die... When I feared the unknown world of disability... When I feared what people might say... When I became angry at the well-intended words of consolation which painted a picture that did not substantiate the fragile faith I had recently found... When people resorted to clichés that put the blame on God---"surely it was his plan, surely there is a reason, surely God will not give you more than you can bear."

I confess that over the years I began to question these realizations. The state of the world seems to contradict the idea of a God near us and for us. But once again it helps to look at Jesus and his words and, more than anything, his actions to know what God is like. God is not found in those clichés. God is found in Jesus, and Jesus reveals his heart, among other ways, in the tender compassion he displays for the least of these.















Tuesday, November 22, 2016

Thank you, doctor.

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 it is 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 child in years, but still remembers him and checks in with me.

To the resident doctor who spoke to me with excitement about meeting a trisomy 13 child who was 4 at the time and doing well.

To the same resident doctor for asking many questions unrelated to my son's hospitalization because it revealed his surprise and desire to learn.

To the doctor who gave me the chance to tell his residents anything I wanted them to know about caring for a child with trisomy 13.

To the doctor who used my visit as an opportunity for his medical student to learn this important lesson--"You treat the individual, not the label."

To the doctor who has said my son is a great teacher.

To the doctor who told me we had to challenge my son.

To the specialists who take care of him currently.

To his primary for caring for him and being part of our story.

Thank you, doctor.





Friday, June 10, 2016

Palabras



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, displástico, atípico no son palabras bellas, pero no me molestan. Los términos médicos son necesarios; te brindan datos; describen lo que se ve.

No obstante, prefiero las palabras que salen del corazón de Daniel y de muchos otros. Su perspectiva es distinta; es del interior: perfecto, gracioso, tierno, feliz, amado, bendecido, hermano, hijo. Todas estas palabras también describen lo que es cierto en la vida de Caleb.

Han pasado más de cinco años desde que iniciamos este recorrido y mucho ha cambiado. Las palabras que al principio nos describían han sido borradas o acalladas por otras. Conmoción y vergüenza han sido substituidas por aceptación y orgullo. Yo soy la mamá de Caleb. El dolor ha sido atenuado por la alegría.

Unas cuantas semanas antes de la conversación de Daniel y su amigo, le recordé a mi esposo de la vez que lo encontré llorando.

--- Estabas sentado en el sillón cerca de las escaleras y en el fondo se veía Caleb en la alfombra de la sala moviéndose de una manera torpe, casi robótica; su cuerpo, flaco y débil.

--- Sí. Me acuerdo que pensé: “esto no fue lo que pedí”.

Los dos volteamos a ver a Caleb: en el mismo lugar, sonriendo y balanceándose en la alfombra, cinco años después. La alegría hizo presa de nosotros y ese triste recuerdo es ciertamente cosa del pasado.




Caleb acaba de cumplir cinco años y, según la comunidad médica, este es un gran logro. Fuera de lo normal, a decir verdad. De acuerdo con las estadísticas, la mayoría de los niños que nacen con trisomía 13 mueren antes del año. Caleb es atípico. Pero más que nada, es un niño amado y es parte de una familia sumamente agradecida de poder llamarlo hijo y hermano.


Wednesday, June 8, 2016

You belong

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.


Wednesday, May 4, 2016

Dancing

Last year, I attended my son Daniel's Pops Concert, the 4th- and 5th-graders' annual music program from his school. 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 I watched two fifth-graders dance. These two boys are in my son Caleb's Special Education class. One has Down syndrome; 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 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.