21 Stories for WDSD – Embracing Eric

The Story Behind These WDSD Series of Posts
World Down Syndrome Day is March 21st. Starting today, for the next 21 days, The Down Syndrome Association of Delaware will be releasing a blog post each morning. You will have the chance to hear from parents, siblings, professionals and community partners who all have an experience to share. These stories will touch your heart and provide a wide range of perspectives. We hope you enjoy hearing from them, as they share their personal stories and pictures. Thank you in advance for following along each morning!

March 1st – Embracing Eric

This year, in a couple of months to be exact Eric will walk across a stage wearing a cap and gown graduating from high school. How did we get here?  Wow, time sure has flown by! I clearly remember his first day of kindergarten waiting for the school bus, and it seems as if it was just yesterday. Seventeen years have passed by, years full of so many emotions, changes, experiences and memories.

Seventeen years ago when I should have been the one to walk across a stage wearing a graduating cap and gown. I instead was wearing a hospital gown on my way to the most important role of my life “motherhood”. I was scared, nervous, happy, and very young. Eric was born on a sunny, warm Tuesday afternoon on May of 2000. After having an easy very healthy, normal pregnancy I was happy to finally hold him in my arms. He was so tiny, so fragile, he was just perfect. I could caress and stare at his beautiful face and tiny hands for hours. I remember the nurses taking him to the nursery for the night so I could get some rest, they could probably notice that young girl was in need of much needed rest. They were right, I felt so tired and exhausted by the end of the day.  Little did I know, I was actually recuperating strength for what was about to unfold.

The following morning the nurses brought him back to my room, my little boy was back in my arms. Soon after there was a knock on the door and a doctor peeking in. I welcomed him, he came into the room, and he was accompanied by another doctor and two other nurses. He asked to check the baby; he undressed the baby from head to toe just leaving him only on his diaper. The doctor silently, very silently checked his tiny feet, his tiny hands, his fingers, his face, his back, and his neck; he then wrapped him back up in his blanket and sat right in front of me. His next words would forever change my life, “we highly believe your son has Down syndrome” “we have to do some genetic testing to confirm”. Never did I imagined or was prepared to hear those words from the doctor, let alone have a child with Down syndrome, especially at such a young age. I felt as if someone had just punched the happiness out of my soul with no previous warning.  I felt a mix of emotions from confusion, to sadness, to anger, guilt and pity as much as I didn’t want to feel that way, I couldn’t help it. Could I have done something to my baby that could have caused him to have this diagnosis? I was scared, very scared. I was trying to hold back my tears as much as I could while feeling a big heavy gulp on my throat. I wanted to be strong, I needed to be strong.

The grieving process began for me right then and there. I remember being discharged from the hospital and arriving home and just sat on the corner of the bed holding my baby, crying, all by myself while no one was watching; even though my family has always been very supportive. I would wonder if he would ever speak, if he would ever take care of himself, if other kids would be mean to him, if he would be able to defend himself. I promised to never leave him alone as long as I lived and to help him in whatever possible way I could.

He started receiving physical therapy at just six weeks old!  Those weeks turned into months, months turned into years.  One goal and accomplishment led to the other with physical therapy, speech therapy, occupational therapy, doctor visits, hospital visits, IEP’S and so on. We cheer and we celebrate every single one of those accomplishments. It might take him a little longer but he gets those goals accomplished.

Eric has become a young handsome teenager who loves music, loves to sing and dance. He enjoys playing video games on his console as well as his Ipad. He enjoys going to school and DSA events. He looks forward to participating at the Special Olympics yearly and is very proud when he brings home a medal and sits it next to his collection of medals.  He’s a typical teenager who has chores, responsibilities, likes, dislikes and most importantly dreams and goals. He has now mentioned he would like to live on his own, work as an officer or maybe a chef and would like to get married someday.

The biggest challenge that I always find myself wondering at random times up until today is when the day comes that he is on this Earth without me.  I am preparing him to be as independent as possible. I don’t want him to feel (different) whatever that word exactly means. I keep fighting for inclusion and educating people whenever I get an opportunity.  I want him to know that he is capable of achieving his goals and I want people around him to know that too. Even though I know for a fact I may not always be able to change the minds of others, I will keep trying. It hasn’t been an easy road at times, but who on this planet has it easy all the time anyway? I don’t think anyone does.  I’m exhausted and stressed out sometimes, but it’s not because of my son with Down syndrome. In fact, he’s the one who sometimes offers to give me a shoulder massage. So, if you bump into me on the street and I look over-tired it’s because I also have an extremely energetic four year old, a teen girl, and an eight month old who still doesn’t sleep through the night and I work full time. I know I have a purpose in this life; actually I have four, each with different abilities and talents of their own.

About the author: Ari Rojas lives in New Castle County, with her husband Jesus and four energetic  kids; Eric 17, Karina 11, Giovanni  4, and Emiliano 8months.  Her priority is her family, including a son with Down syndrome, but she is also a wife, a sister, a daughter, a friend, a medical assistant currently working in the accounting field for the past ten years, and an avid family photographer who enjoys capturing beautiful pictures of her family.  She also is an advocate for Down syndrome, a volunteer at A.I DuPont Hospital, and is also part of the outreach committee with DSA. Ari speaks Spanish and works with all of our new Spanish-speaking families.