“Having a child with special needs is priceless. Each day, you are faced with a challenge on how to manage her behavior, what strategy would best improve her skills, or what new word she will be able to say next.”
When my husband Edgar broke to me the news that my new-born child has Down syndrome, I was shocked for about a minute. Tears rolled down my cheeks as I pondered my daughter’s future. I remembered having told friends, “I don’t mind if I have another girl or a boy this time – as long as my child is normal.” I was a bit concerned about my pregnancy because I was near 40.
My husband sat by my side at the hospital bed and said, “We asked God for a child and He sent us a special child. My sister is a geneticist, my other sister is a psychologist, my mom, a sister of yours, and you are teachers – what could be a better environment to raise a special child?” Next, the words I often uttered to my own staff at my tutorial center came back to mind,” I hope God would give special children to mothers like us, because as teachers, we are always ready to give love and care these children deserve.” At that moment, I told myself that God must have given me this child for a purpose.
The first eight months changed our lives. Our family activities revolved around Sandra. My husband and I gave up a lot of social obligations, for trips to Sandra’s doctors and therapists. She required regular check-up of her eyes, ears, and neurological responses. We also had two household helpers to assist us at home and during Sandra’s therapy sessions.
Another initial struggle was to handle people’s varied reactions. One good friend even told me I should have checked first through an amniocentesis. “What for?” I asked. “To abort my baby upon knowing that she has Down syndrome?” I told her the idea never crossed my mind, and I resented her for even thinking about it. In public places, I often observe people whispering to each other upon seeing Sandra. This does not affect me because these people are not significant in my life. Relatives are also concerned about Sandra’s life expectancy, as have heard that people with Down syndrome do not live very long. However, I take all these in stride.
Breaking the news to our older daughter, Danielle, was another hurdle to overcome. When I first told her that Sandra is different from other babies and that she’ll grow up to be a little different from her, she bombarded me with so many questions.”You mean we’re not alike? Can’t she go to my school? We don’t have the same features?” I broke into tears feeling she will not be able to accept her baby sister. But I manage to compose myself and showed her photos of children with Down syndrome. At times, I read to her stories told by siblings of children with Down syndrome. Now, she takes great care of her baby sister and has become a great storyteller to her as well.
Perhaps this is why Sandra grew up to love storytelling. She loves to anticipate what comes next in the sequence of events in the story. Besides that, Sandra also finds immense joy in singing and dancing. Once you start singing a nursery rhyme, you have to be prepared to sing it for another 15 minutes, if not Sandra will start to ask for more. While viewing her Montessori sing along video, she follows the actions and gives it all her might to move and jive with the music. Our friends and relatives are amazed by Sandra’s charm and enthusiasm. Performing in front of an audience is something she would willingly do. Often, she would smile and shake hands with any stranger in front of her. This has made her well liked by most people we meet on the bus or train.
Despite all the obstacles my family I initially had to go through, there were positive outcomes from it as well. We actually spend more quality time together as a family. My husband comes home earlier from his trips abroad, and I find myself rushing home from work every afternoon to spend some play time with my two daughters. As they grow up, I find every achievement in their lives, big or small, a great blessing from God. If there is one significant lesson that Sandra has taught us, it is the virtue of patience.
To express everything I feel about having Sandra in my life, I have written this poem:
On January 7, 2004
A gift from above was sent to me
2 weeks ahead of time she came
An adorable baby girl, Sandra is the name.
They say she has Down syndrome
And when they handed her to me
My heart was so fast beating
They have to be mistaken
For she was like an angel from heaven.
Her eyes have an upward slant
The eye slit is narrow and short
There is a single crease across the palm
But as for me, I’m the proud Mom.
Sandra is such a blessing
For she has made us better people
Nothing will keep us apart
‘Cause she’s what I asked for
from the very start.
Note: Children with Down Syndrome are born with hypotonia (low-muscle tone), weak legs, arms, back, and jaw which make them sit, walk, and talk at a later stage. In order for them to develop to their fullest, they require early intervention, with help from occupational, physical, and speech therapists.
By Obelia Lacanilao-Cutiongco
The writer has been a teacher for more than a decade, but her full-time profession is a Domestic Engineer. Her greatest passion is community work. This article was written 8 months after the writer gave birth to Sandra, her second child in 2004, to serve as an inspiration to parents/families with children with special needs.