Unconditional love

Yesterday being Valentine’s Day, my mind was on love the unconditional kind.

The thoughts were inspired by our talk last Friday with Elmer Lapeña and his wife Agnes on OneNews’ “The Chiefs.” Their son Jeremy has Down Syndrome.

February, the month of love, also happens to be Down Syndrome Consciousness Month. The condition, attributed to an extra chromosome, is present in over 100,000 households in our country. That figure was mentioned back in 2014, when the Down Syndrome Association of the Philippines Inc. (DSAPI) reported that every year, an average of 1,875 babies are born in our country with Down Syndrome, so there are now surely more than 100,000 households with at least one member living with the condition.

An article in February last year, from Smart Parenting, described Jeremy’s arrival in the Lapenas’ life. Excerpts:

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.

Looking at the baby, Elmer quickly felt something was wrong. Tests confirmed that their boy has Down Syndrome. The article continues:

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.”

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The Lapeñas, however, soon came to see Jeremy as a blessing. And this is the message they want to impart, especially to new parents of children with Down Syndrome.

“It’s very different when the doctor tells you that your child has Down Syndrome. It’s very different when a parent tells you, ‘I’ve been there and I know what you’re feeling, I know what you’re going through, and believe us, we know that things will still get better and you will be happy later on,’ ” Elmer told us on The Chiefs.

“The trauma is just for a moment and you know, you will actually have a lifetime of joy together with your child,” he added. “So that’s our message to all new parents… love your child, and your child will bloom.”

It’s best, he said, to reach out to such parents as early as possible, “to change their mind in a more positive way.”

The Lapeñas tell people that God gave them Jeremy in a box loaded with angels – friends and others who have given them support. Their two elder daughters Sarah and Patricia have also been supportive.

Last year the couple told SmartParenting: “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.”

Agnes said, “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.”

The Lapeñas told us about the joy that they have found in their advocacy, particularly the long-term bonds of friendship they have formed with other parents.

“This is something like a blessing to many of us, and it is something we’re actually thankful for,” Elmer told us. “You know, there are so many positive things about having a child with Down Syndrome that we are so happy for, and we wish all parents the same thing.”

They are pleased that both the government and the private sector are providing support to empower persons with Down Syndrome, allowing them to get formal education and employment opportunities.

SM Supermalls, cited as the most PWD-friendly mall in the country, has been particularly supportive through its corporate social arm, SM Cares. SM’s Hans Sy personally joins the regular “Happy Walk for Down Syndrome” with DSAPI.

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Surely with unconditional love, several people with Down Syndrome have gained global prominence.

Among them are Isabella Springmuhl Tejada of Guatemala, a fashion designer who has showcased her work at the London Fashion Week and in Rome, and Australian fashion model Madeline Stuart, who has been on the catwalks of the Fashion Weeks in Paris, New York and London. Stuart has also completed the Special Olympics triathlon three times.

Athlete Karen Gaffney of Oregon has not only bagged two golds in swimming in the Special Olympics but has also completed the English Channel relay race and swam across San Francisco Bay and the Boston Harbor, among others.

Sujeet Desai graduated from the Berkshire Hills Musical Academy in Massachusetts and can play the piano, violin, saxophone, trumpet, bass clarinet, Bb clarinet and drums. He received a standing ovation when he performed at Carnegie Hall.

Spaniard Pablo Pineda obtained a BA degree in Educational Psychology plus a diploma in teaching, and he is also an actor. And speaking of actors, fans of the hit TV series “American Horror Story” are familiar with Jamie Brewer, who has also walked the red carpet at New York Fashion Week. There are also American actor / folk singer Chris Burke and British actress Paula Sage.

Still in entertainment, there’s award-winning Norwegian playwright and disability activist Marte Wexelsen Goksoyr.

Persons with Down Syndrome are in politics and business as well. In the Spanish city of Valladolid, Angela Bachiller is a member of the city council. Collette Divitto of Boston, facing a string of job rejections after finishing a three-year cooking course, developed an “Amazing Cookie” and founded Collettey’s Cookies, which now has a partnership with Lay’s Potato Chips.

Someone who didn’t get her family’s love was the late American sculptor and fiber artist Judith Scott, who was also deaf. Her works are on permanent exhibit in 12 museums in six countries. Shunned by her parents from childhood, Judith was sent to a care home, where decades later, a guest who taught fiber art ushered her into her life’s calling. Judith’s life would make a terrific movie.

Who knows what greater heights Judith Scott might have achieved, if her family had given her unconditional love?

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Those who want to discuss Down Syndrome can find DSAPI, which now has 23,000 members, on Facebook. The group can be reached in Metro Manila at 8895-96-42. It also has offices in Cebu and Davao.