OUR NEW LIFE

by Kortney Calvillo (Arkansas)
May 2017


Santiago, wearing glasses with blue frames, tilts his head and smilesMy name is Kortney Calvillo. My introduction into “special needs” felt like someone was taking a wrecking ball to a newly built home.

On June 3, 2012, my husband and I welcomed a very healthy 8 lb., 9 oz., 21 in. long bouncing baby boy named Omar “Santiago” Calvillo. Little did I know that we were about to embark on the biggest journey of our lives.

On August 18, 2012, at just a little bit under three months old, my sweet-hearted boy developed an uncontrollable fever. What I had hoped would be a quick fix turned out to be a life-changing disease. HSV type 1 encephalitis, meningitis, supraventricular tachycardia (SVT), epilepsy, seizure disorder, etc., etc., etc.…

These were all new words, new labels…our new life. When we were given these diagnoses, we were told that there was a lot they didn’t know, but here’s a list of things that they did know:

  • He will be severely delayed,
  • His life will be a struggle,
  • He will probably never walk or show emotions,
  • And quite frankly, based on the extensive global damage, we expect your child to have a low quality of life.

As I sat there hearing some of the most traumatizing words I would ever hear, I remember my world fading away. The voices speaking to me became softer, then nonexistent, and before I knew it, I was horrifyingly numb. A numbness that to some degree has never gone away.

Santiago crawls toward the cameraHowever, today is May 11, 2017, and four years and nine months have passed since our journey began. Today we embrace every day for what it is and welcome the unknown, knowing it’s formidable with or without our acceptance. Omar “Santiago” Calvillo is now a thriving almost-five-year-old little boy whose laugh could bring a smile to the saddest person’s face. A little boy who can crawl any and everywhere but would crawl to the sound and signs of his daddy in a crowded room. A little boy who will one day walk with the power of an entire army in every step. A sweet-hearted, hazel-eyed boy who speaks to your soul without ever having said a single word. The little boy who can laugh, roar, and show an array of emotions just like the fighting little lion he is. My little boy, God-given and God-guided.

Santiago kneels on the floor, smilingSo though our journey has only begun, I feel like the one thing I’ve fully grasped is it’s okay to feel alone. It’s okay every time you hear the saying “you’re not alone” to sort of laugh, knowing it’s a joke. Because you are alone. You’re alone in your heartbreak, you’re alone in your own trials, and you’re alone in your own emotions. It’s okay to feel alone. I think feeling alone is one of the few things that we all aren’t actually alone in!

And while I feel like I’m leaving the stage in the middle of a song, my story doesn’t have an end. Our journey is never-ending, and that means every day is a new one. I just want to thank God for allowing me to take this journey with our wonderful miracle of a little boy.

expand your family network

From November 1 through December 31, 2019, NFADB is offering a 25% discount to celebrate our 25th anniversary!

We hope you take advantage of this offer!

become a member of nfadb



Our Partners


Helen Keller National Center

National Center on Deaf-Blindness

Perkins School for the Blind


support NFADB



Our work is supported by organizations and individuals like you.  Support our work


OUR MISSION

NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs.

PHONE OR FAX

Phone: 800.255.0411
Fax: 516.883.9060

MAILING ADDRESS

PO Box 1667
Sands Point, NY 11050

Powered by Wild Apricot Membership Software