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I have an 11-year old son named Harold Dave. At home, we usually call him “Debdeb” but he prefers to be called “Demdem” because he can’t utter “Debdeb.” When Harold Dave was born, we did not think that he was a special child until a geneticist saw him who suggested to do a chromosomal study of Harold Dave. After the study, we found out that Harold has Trisomy 21 or Down Syndrome. Upon knowing the result, I was very depressed and my whole family was in sadness. We knew nothing about rearing a baby or child with Down Syndrome. However, we thought that we could not help Harold Dave if we did not accept his condition. This allowed me to wholeheartedly accept my child’s condition. I sought medical help from my friends. I studied what Down Syndrome was all about. I stayed at the bookstore for so many hours to do research and buy books about Down Syndrome. I became a full-time mother for Harold Dave. I had no other work but do a day-today check-up with his medical procedures and his medications, immunizations, and subsequent referrals for his early intervention therapy. Time came when we decided to bring him to an institution for physical, occupational, and speech therapies. During his therapy sessions, Harold Dave’s fingers were trained how to hold small and big objects. With prayers, dedication, and patience, my son’s muscles were toned and became firm. He was taught how to balance and, at the age of one year and five months, he learned to walk independently. Even if Harold Dave showed great progress in his mobility, he still needed more interventions and medications to address his medical needs. These things did not hinder me from doing everything for my son. I prayed wholeheartedly and I told God, “Kung mudako lang gyud ning bataa Lord, I’ll be the best mother in the world.” (If this child grows up, I’ll be the best mother in the world)
With God’s mercy, Harold Dave reached the age of two and at this age, he learned to eat with us at the table using spoon and fork and a table napkin, too. When we visited our relatives in Cagayan de Oro, we were very happy when one of my cousins told me that Daveis is capable of learning quickly. That statement boosted my confidence and inspired me in many ways. I always believed in the abilities of my son. Even if he had limitations, I always made sure that his talents were honed. I always encouraged him to do his best at all times. I never surrendered in bringing him to the hospital for therapy. I never gave up even if my husband said, “Hanggang kailan ba matatapos ang panggagastos ni Dave?” (Until when do we have to stop financing for Dave’s therapy sessions?) I answered, “Hangga’t buhay ang bata.” (Until our son still lives)
Another phase in our family life came. We moved to another city and decided to live there. Harold Dave’s therapy sessions still continued in one medical center. However, his occupational therapist left the Philippines to work abroad. Thus his occupational therapy interventions were stopped. To educate my son, I decided to enroll him in a special education class. However, for several years, he could not complete one whole school year because of some problems. One day, I heard from my friends that a non-government organization was accepting children-beneficiaries. I applied but Harold Dave was not accepted because according to the therapists, Harold Dave already had the necessary skills in going to school. I didn’t surrender. I prayed fervently until I received a call from the organization on January 23, 2008 that Harold Dave was accepted. It was three years after my application. I was very happy because at last, my son’s therapy sessions will be continued. Harold Dave continues to show great progress not only physically but also intellectually. He can now write his name. He can now participate in the different arts and sports activities for children. Many people usually call him “Atty. Subesa” because he acts as if he is a lawyer. I have been very thankful to the organization and its people for the help and inspiration. Without them, Harold Dave will not become who he is now. My son really helps me grow as a person. He teaches me many things and inspires me in a lot of ways. It is Harold Dave who lets me experience the “real” life. It is my son who has allowed me to meet people from prestigious institutions or organizations working specifically with and for children with Down Syndrome. If not for him, I could not have gone to a city hall to ask for free medicines and discounts. Yes, he has taught me to be fearless and confident yet humble. Most importantly, Harold Dave has taught, and continues to teach me, that everything is possible if you have the strength, determination, and most of all faith in God. Because of him, I have now become a mother who will fearlessly fight for the rights of all children with disabilities because I know that, just like him, they too have the right to live a decent life. Be happy and proud that you have a child with disability. We need to let him or her enjoy the things that every other child enjoys because in the eyes of Almighty Creator, we are equal. We are so blessed to have Harold Dave in our family. As what my fellow parent said, “You have a special child because you are a special parent and you should be proud of it.” Thank you, my son.
[Head picture: © Nick Kenrick]
Nely Subesa is a full time mother and a parent advocate of a child with Down syndrome. Currently, she serves as one of the officers of the Differently-Abled Children’s Parents Association (DACPA), a group of parents advocating for the rights of children with disabilities to education and habilitation or rehabilitation in Negros Oriental, Philippines.