My life with Alejandrito
By: Silka M. Santiago*
How beautiful my baby! He weighed 8½ pounds and 21 inches, his hair: black and thick. He was the heaviest baby in the hospital's neonatal unit. A nurse approached me and whispered in a loving tone: “Mom, hasn't the pediatrician talked to you?"The doctor, upon meeting with me, congratulated me and highlighted how beautiful, big and healthy my baby looked and told me: “You know mom, your baby was born with “Down Syndrome”. My immediate reaction: “What do you tell me?"…So? Yes, my son was born with “Down Syndrome”.
Whatever they say, priorities change completely when you have a child, and even more so when that child is born with a condition. I reflect and realize that what was important before is no longer important. Along with the full acceptance of my beloved Alejandrito (as we affectionately call him), I saw the need to grow and face the maturity of an unexpected life. I experienced changes in my perception of beauty and perfection and even the basic needs that I once believed I had as a human being. They were mixed feelings, sadness, joy. The road was arduous and exhausting, full of great emotions and satisfaction as I saw little by little how my son developed. There were many hospitalizations, morning breaks, inconsolable crying and frustrations. At the same time, I received the support of my family, school staff, co-workers, and those angels who assisted me with their care at home so that I could support the home.
While some mothers celebrate because their children were already racing their bicycles at the age of 3, I celebrated with excitement and hope that at that same age Alejandrito was taking his first steps. Appreciating each achievement, each progress, was a source of joy and gave me the strength to move forward. Alejandrito, could express his affection and happiness in different ways even though I never had the privilege of hearing his voice. I was that single mother, head of a family with two children. For many years my routine was to get up at 5:00 in the morning, prepare breakfast, bathe Alejandrito, give him medication, get Emmanuel, his brother, up and ready, and take them to their schools. In the afternoon, when he left work he looked for his little brother, then he looked for Alejandrito in care around 6 in the afternoon and returned home at night. While many other families were already in their homes, we were still in traffic.
Another great challenge was inserting ourselves into the community in daily activities such as going to the supermarket, the pharmacy, and even visiting friends or family when we thought that Alejandrito could become aggressive and we could not control him. Uncertainty and fear always accompanied me because there are people who lack the sensitivity to understand the behavior of my son and other young people with cognitive impediments like his.
I learned to assume multiple roles: mother, nurse, therapist, teacher, among many others. To not dedicate time for myself and even for my other son. Do without those things that we liked. I know that in all these roles I did my best and never lost faith. One day I asked my youngest son “How do you feel about having a brother with Down Syndrome?” “Mommy, I feel more sensitive, more mature. I feel that I am a child with the mentality of a man, but sometimes it makes me sad because I think that I should do much more for Alejandrito.” Words that penetrated deeply into my heart because he was my right hand.
There came a time when I had to pause my work to have more time to take care of what couldn't wait. But everything had a purpose, some time later Alejandrito suffered an aneurysm in the aorta vein and, although physically he has not been with us for three years, I had the privilege of having him for twenty-two years with the great satisfaction that he was a happy young man.
We all have a mission in our lives no matter what our individual circumstances are. I guess mine was to show that it can be done. And I'm not complaining because I was actually able to find balance in my life. I know that there are many Alejandritos and many mothers like me who are living this unique and unparalleled experience. But I want you to know that you are not alone. There are organizations like APNI where mothers like me, who have walked in those shoes, are willing and available to serve as support and hope on this journey.
* Trainer of the Training and Information Center for Parents of Children with Disabilities, a project of APNI, Inc. July 2016