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Having A Child With Down Syndrome 'Felt Like I Failed My Husband'February is Down Syndrome Consciousness Month in the Philippines.
The year was 1996. Agnes and Elmer Lapena were excited to have their first boy. He would be the first to carry the family name in their clan. Elmer prepared a box of cigars for the big day.
Like all parents, they had dreams for him, maybe an engineer like his dad or a doctor — they wanted him to be athletic. In the course of her pregnancy, the baby inside Agnes’ tummy got excited every time she watched basketball.
Then Jeremy was born. And their world was never the same.
Elmer suspected there was something different with their son by his facial features. He asked his brother, who is a doctor, if he noted anything different. His brother thought so, too, but could not confirm it yet. A day after Jeremy was born, Dr. Carmencita Padilla, a geneticist, came to visit.
Doctors look for physical signs or features to assess if the infant has Down syndrome (DS). Slant, eyes, epicanthal folds on the eyes, broad neck, flat face, tongue that tends to stick out, poor muscle tone, and low set ears — Jeremy had all of it.ADVERTISEMENT - CONTINUE READING BELOW
A confirmatory test called the karyotype was done to determines the type of DS, and Jeremy had the most common type, Trisomy 21.
The couple was devastated, and it pained Agnes to see her husband cry.
“I felt like I failed him,” she quipped. “He kept the box of cigars. We were facing the unknown. Many questions were asked, various emotions felt. I asked if this was a punishment from God.”
Raising a child with Down syndrome
Events like this in a couple’s life can easily break the marriage. But the couple’s resilience is admirable — they have turned this seemingly unfortunate situation to a greater good.
The first thing Agnes and Elmer did was to talk to their two older daughters, Sarah and Patricia. They told the girls their love for Jeremy will help him become the best he could. Being special just meant he needed extra care, such as more visits to the doctors and tests and therapy sessions at the centers or with everyone at home.ADVERTISEMENT - CONTINUE READING BELOW
“We knew Jeremy had limitations, but that didn’t stop us from exploring possibilities. He went to school, joined us everywhere we went, got disciplined when he was wrong and was just one of us.”
The parents then joined the Down Syndrome Association of the Philippines, Inc. (DSAPI), and it was the start of an advocacy that blossomed many decades later. It gave way for this wonderful couple to touch more lives, not only of parents who have children with DS but to the society to be more sensitive and accepting of people with DS.ADVERTISEMENT - CONTINUE READING BELOW
Having a child with Down syndrome was a lesson
“The challenges never stop. In the beginning, it was finding ways to help Jeremy, now 23, develop — what doctors to see, making appointments, all sorts of therapy. Then we had to deal with people who were insensitive. We had to be reminded that we were also ignorant of disabilities.”
Having a child with DS was humbling for Agnes and Elmer. “We were given Jeremy, who gave us a purpose in life, which was to reach out to families who also didn’t know what to do.”ADVERTISEMENT - CONTINUE READING BELOW
“It made us more accepting of people and their shortcomings. Jeremy taught us the true meaning of unconditional love, and we became witnesses of God’s faithfulness,” Agnes shared.
“As I often say, when God gave us Jeremy, he came in a box loaded with angels. These angels came from everywhere — family, old and new friends, strangers who came to support us and DSAPI — and fell in love with our kids with DS. It opened a whole new world for us.”
Agnes has a heartfelt message to parents of children with disabilities. “There is hope. As a renowned geneticist, Dr. Jerome Lejeune once said, 'Look at the child as a child first and his disability second, love the child unconditionally, and the child will bloom.'”
She also encouraged them to seek comfort and support with other parents who are going through the same ordeal. DSAPI connected us with parent members. It will be a journey of struggles and milestones. Still, we always celebrate the simple achievements we would normally take for granted.”ADVERTISEMENT - CONTINUE READING BELOW
Balot Del Rosario is a NAHA-registered, certified level 2 professional aromatherapist. She is also the author of the book, Lost but Found (available here), and the mom-of-two behind the blog Chronicles of The Happy APAS Mama (www.callmebalot.com).
There are many people with Down Syndrome that has captured our hearts. Get to know them here.