Making the Best of It

"That is a very positive attitude" said the home care pharmacist almost congratulating me. Had this woman been in front of me, she would have seen me holding back the tears.

"We'll have to make the best of it" had been my reply to her question about whether adding two more hours of TPN a day would create a problem for us. She knew that at 18 hours a day we would have to disconnect Caleb's central line sometime in the middle of the night. We will indeed have to make the best of it.

There is a story about Piglet inviting his friends for a snack of haycorn muffins. With so much work ahead of him, he opens his cookbook, flips through the pages, and carefully reads the list of ingredients. But, alas, when he checks his cupboard there is "No flour, no honey, and worst of all, no haycorns!"

With a basket over his arm, Piglet sets out to gather what he needs. As he finishes filling his basket with haycorns, along comes Tigger and bounces all the haycorns…

The song keeps changing

Daniel's first months and years of life were filled with songs. The moment he was born, Paul and I sang the Spanish hymn that had become our prayer for him throughout my pregnancy—"May God bless you and protect you. May his grace be your strength at all times. May his angel watch over you, giving you shelter always, everywhere."* This hymn and Sandy Patty's "Cradle Song" became my constant prayer, and the songs from my childhood, sung so sweetly and playfully to me and my two younger brothers, became my repertoire at bed time and throughout the day. Songs offered a means to convey a love which I felt could not be expressed with a simple "I love you." To this day, I will sometimes sing to Daniel a string of songs that are both a declaration of love and a prayer.
... I stare in awe and wonder at such a mystery. How God can touch the love of a man and wife, And blossom it into the breath of life. Just look at this life.
(Cradle Song by Sandy Patty)…

La oveja perdida

Algo que me gusta mucho de la música del cantautor español Marcos Vidal es su uso de imágenes, de historias, para contar una verdad y hacernos reflexionar. Lo mejor de todo es que no tiene que sacárselas de la manga: las parábolas de Jesús son la base de muchas de sus canciones y una de ellas es "La oveja perdida", que interpreta al lado de su hijo menor, Joel. No soy crítica de música, pero en mi opinión, esta pieza es una de las más bellas que ha escrito.

Escuché esta canción por primera vez hace apenas unos días en un momento crítico de mi vida personal, cuando la salud de mi hijo se deteriora y me golpea la realidad de que su vida es frágil y de que será corta.

Sin duda, yo he sido la oveja perdida ya más de una vez a lo largo de mi caminar con Jesús. Sería tonto, y resultado del orgullo, imaginar lo contrario. Pero no solo he sido una oveja perdida; también he sido una oveja que en ocasiones se ha resistido a entrar al redil y, actualmente, soy una oveja que a veces si…

From scraps

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

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…


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?

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