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.

Friday, April 29, 2016

Imagining

"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 different. You would not want to lose who he is. I don't have to imagine that the cliché everybody says when expecting---"as long as the baby is healthy"----is just that, a cliché. Truth is you love them just the same and want them just the same.

Caleb turned 6 years-old recently. It is hard to believe we almost lost our son to apnea when he was only 3 weeks-old. Back then, we couldn't imagine what we have today. We cannot take credit for anything. Caleb is not a warrior, nor are we the most diligent parents. We are simply fortunate, blessed, with good health and resources.

One of the "perks" of our journey is that it opened the door to this whole different world for us as a family. I feel ashamed to say this, but I doubt I would have felt compelled to include children with disabilities at my son's birthday party had he been born healthy.



I had never imagined a party where two girls with Down syndrome would hug and kiss my boy while he slept. I never imagined hearing one of them say, "Caleb, you are so cute." I never imagined a group of typical and disabled children holding the strings of a piñata, forming the petals of a beautiful flower. Truly beauty can come from ashes.

Saturday, January 9, 2016

The Good, the Bad, and The Ugly of Being Part of an Online Support Group


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 had it---no tracheostomy, no frequent hospitalizations, a healthy immune system, and seizures under good control. On the other hand, I have felt a mixture of disillusion and guilt when seeing children doing much better developmentally than my son. I wish, for instance, that my son would reach for my face like many others do.

Disillusion disappears the moment I look at Caleb. Truth is, I not only love him, but adore him the way he is, and he does not need to be able to do anything more for disillusion to be replaced by gratitude and contentment. Guilt, on the contrary, lingers. It tells me there is always something more that I should do, or that I did not do. It is my fault. I haven’t been diligent enough.

In our group, families whose children are doing well share their progress and victories to encourage and push back the negativity and prejudice permeating the medical community in the world of trisomy 13 and 18, particularly full trisomy. The goal is to send a message loud and clear which is in sharp contrast with the doom and gloom often forecasted by doctors because of the severity of the health problems and the developmental delays which accompany both diagnoses.


This message is absolutely necessary as many parents have been told there is either nothing to do or nothing worth doing to save their children when, in fact, often there is. Many, therefore, have been encouraged, even pressured, to terminate their pregnancies. Many have been assured their children won’t have “quality of life” when, actually, a parent’s definition of “quality” often times differs greatly from that of a doctor's. The unspoken or straightforward question seems to be, “Is a life like that of our children worth living?” and for those in the group the answer is a resounding yes!

If doctors could look at our pictures and our videos, but more than anything, if they could read our posts, they would see that we cherish our children’s lives no matter how short and how limited. They’d be surprised to see quite a few kids doing remarkably well developmentally, beyond many doctors’ imaginations---kids sitting, crawling, starting to walk, and saying a few words. Yes, reaching these milestones is a big deal for a trisomy 13 or 18 child!

To be fair and honest, I do believe that every now and then we get carried away in our attempt to offer hope and to counterbalance the doom and gloom message. We can swing to the other extreme. We can start to ignore the spectrum. We can start generalizing and painting all doctors with the same brush making it hard to expect anything good from them, making us suspicious of their motives. Unintentionally, the message seems to become “because our child can or did, so can yours,” as if it were a matter of sheer determination.

Our group is formed of people whose children are long-term survivors and of people whose kids died in utero, shortly after birth, or a long time ago. Many women turn to our group after a prenatal diagnosis, and I can say with all confidence that we become a lifeline for them. I know they would have been for me, had I found out prenatally that my son had full trisomy 13. Yet this is not without risk.

Parents starting on the road of bitter-sweet assume those in the group understand, and we do because many of us have been in their shoes. So they open up their lives and invite us into their prenatal journeys asking for advice and looking for hope, perhaps never fearing that we will question their decisions afterwards, until it happens, and people get hurt. Both the seeker and the giver of advice walk a fine line. We are always taking a chance when we expose our lives.

I used to think Facebook was not for me. People looked too happy and pretty, always smiling against beautiful backgrounds, having fun surrounded by friends, while I felt lonely, anxious, and exhausted. Being part of an online support group has allowed me to meet others, whose lives look more like mine. Even though the experience isn’t always safe, and we have our moments when opinions clash, I am grateful for the opportunity to grieve and celebrate with others; I am grateful for the opportunity to learn and to be challenged by the example of perseverance and determination of many parents who always expect more for their children. And believe it or not, it has eased my entrance into the world of ‘mainstream’ Facebook too.

Sunday, December 27, 2015

To Daniel


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

To Caleb


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