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From scraps

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This little piece was born out of a "scrap"—two words written in a notebook about something my son Daniel did a long, long time ago. It was the result of a writing exercise during a creative nonfiction workshop titled, "This is not (just) a sad story" conducted by Nora Borealis. Someday I may rework it into a longer piece, but for now here it is the way it came into the world.






We all look for solutions, even 4 year-olds. Doctors have said my son will die. For the past 48 hours he has had one apnea event after another. I am tired. I feel I should get home, take a shower, and rest a little, but "What if he dies?" I ask my husband. "He won't die," answers Daniel in that nasal voice he uses even now when wanting to emphasize something. To tell you the truth, it sounded like, "Don't be silly, mom."

Attached to the wall are the post-it-notes the nurse put on display for Caleb as a sweet gift from his older brother. Each one contains …

She asks

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She asks if my son is happy.

"Well, he has been irritable for the past couple of days... but when he is home on our living room floor he is happy, rolling back and forth, vocalizing."

Why do I feel the need to quickly add this? I am afraid she is going to link my answer to her conclusion on whether or not he has good quality of life.

She asks if my son recognizes me.

"Oh, yes... and he knows dad, and brother, and Mari, his caregiver. And I am pretty sure he knows his teachers and classmates."

My son recognizes me, but does he know I am his mother? Does he love me? Does he want my attention more than he wants Mari's?




 She asks if he uses any signing, if he reaches for toys.

"No, not at all. He is very delayed... even compared to other trisomy 13 kids... but I don't mind."

I want her to know, even though she most likely knows, that not all trisomy 13 children are the same. He is not it. He is just one from a wide spectrum.

She hears me say that I do…

Explanation

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I know you noticed I got upset. I saw it on your face. So many years without any issues, but now this.
I totally understand, and under different circumstances, my reaction would have been different, too.

But yesterday was not just another day. It was the first day of school, and first days are always hard.

I stood in the hallway watching the children walking by with their teachers, aware of the lump in my throat.

Perhaps it was the fact that I had been up before 4 a.m. to tend to him and was unable to sleep much after that.

Perhaps it was the fact that instead of preparing a lunch box, I prepared three bags filled with medical supplies, extra clothes, and diapers.

Perhaps it was the fact that my first visit to the school involved a stop by the nurse's office to talk about epilepsy medications.

Or, was it the smiling faces of children on their first day of school on Facebook, reminiscent of a "perfect life"?






Silly, I know. There is no such a thing. Yet I felt envy, but my…

What can I say about you?

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What can I say about you? That your pain is often forgotten That we take precedence and we often ignore you That we may think you insensitive, but you grieve differently That your dreams are also shattered
What can I say about you? That the load would be much heavier were you not beside me That some days the only remedy for anxiety is your embrace That working together lessens the tediousness of the tasks
Yes, you and your kind are often forgotten We think about a mother’s pain, but have trouble imagining yours Perhaps only a man knows how deeply a man feels You don’t share much But you love, and you care, and you hurt just like us

El amor de madre

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----Esto necesita Caleb---- me dijo Daniel mientras señalaba una de las citas de la agenda que había comprado ese día en la tienda de cosas usadas.


"El amor de madre es el combustible que hace que un simple ser humano pueda lograr lo imposible."

---- ¿Y qué es lo imposible para Caleb?

---- Caminar, hablar, ver.

Al igual que mi hijo, a primera vista yo también pensé que la cita daba a entender que mi amor podía lograr que su hermano hiciera lo imposible, como si por arte de magia, pudiera transformarme en un Jesús y hacerlo andar, hablar y ver. 

Obviamente, esto no es lo que la autora, Marion C. Barretty, quiso decir cuando escribió estas palabras, pero Daniel no se equivocó del todo: el amor de madre es poderoso. 

El amor de madre nos da poder a las madres. Es a nosotras a quienes ayuda a lograr lo imposible. En el diario vivir de una madre, lo aparentemente imposible podría ser tener la fuerza para levantarse por tercera vez a atender a un hijo a media noche. El amor de madre nos…

Mother love

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"This is what Caleb needs," my son Daniel said as he pointed to a quote from the little notebook he bought at a thrift store that day a few years ago:

"Mother love is the fuel that enables a normal human being to do the impossible."
"And what is the impossible for Caleb?" I asked.
"Walk, talk, see."
Just as my son, at first sight I took this to mean that my love could help his disabled brother do the impossible, as if by magic, it could suddenly transform me into a modern-day Jesus who could make his brother walk, talk, and see. 
That is not, obviously, what Marion C. Garretty meant when she wrote these words, but Daniel got something right---Mother love is powerful.
Mother love empowers mothers. It enables us to do what is seemingly impossible, which in a mother's day-to-day could simply mean getting up for the third time in the middle of the night. Mother love helps mothers with the simple things of life, but it also sustains us and makes …

Casi siete años

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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 grac…