Images of people on a wheelchair flashed instantly on my mind. What followed were nights with very little sleep, and the little sleep I did have, I would eventually wake up and think it was all just a bad dream, only to realize it was not. It was real. My perfect baby had cerebral palsy.
Turning tragedy into acts of love: Lessons from a child with cerebral palsy
Dedet De La Fuente (Philstar.com) - January 24, 2020 - 12:09pm

MANILA, Philippines — This is for Lauren, my firstborn who passed away 10 years ago today.

In 1997, my firstborn daughter, Lauren, was born. She had very long eyelashes like Betty Boop, cute and chubby, and weighed 8.3lbs at birth. She was everything I had hoped my firstborn to be.

Lauren was everything I had hoped my firstborn to be.

On her second month, I asked her pediatrician why Lauren had not been doing the usual milestones a baby her age should be doing. She replied that we should not worry and that some babies were simply delayed. 

Lauren with her grandparents. She was their first grandchild.

On her fourth month, she still had not done most of the milestones a two-month old baby should have done. So we went to the pediatrician again, but this time, she looked worried. She recommended that we consult with two specialists. 

The first doctor we went to was an ophthalmologist since Lauren’s eyes were not tracking. After the eye examination, the doctor quickly said her eyes were perfect. So we went to the second doctor, Dr. Pe Benito, a neurologist. After only a few seconds of looking at Lauren, he knew right away.

He gently told us, “There is no easy way to say this, but your baby has cerebral palsy.”

Images of people on a wheelchair flashed instantly on my mind. What followed were nights with very little sleep, and the little sleep I did have, I would eventually wake up and think it was all just a bad dream, only to realize it was not. It was real. My perfect baby had cerebral palsy.

We went to the United States to have a series of blood tests to check if her condition was because of a metabolic abnormality. After months of tests in the west coast, Dr. William Nyhan, a pioneer in metabolic studies, told us, “I am happy to let you know that Lauren’s condition is not due to a metabolic abnormality. So now, you can have more kids.” 

Those were the last words I remember Dr. Nyhan told me. In my heart, I wanted Lauren to have at least one sibling so that someone could take care of her in old age. Lauren was blessed to have not one, but two, younger sisters, Lileya and Liyora.

An unlikely sisterhood

Despite her condition, she was part of all the family activities. Her being on a wheelchair was never an obstacle for her to experience what her Lileya and Liyora did. The sound and the movements of the banca boat rides with her sisters whenever they visited Batangas would always make her laugh. 

She enjoyed going to Baguio especially the vegetable market. As her wheelchair was being pushed, the vendors who knew her would wave and talk to her. They were all very nice to her. Another activity she enjoyed was when we would go around Burnham Park on a pedicab as her sisters would call out her name each time they passed her with their bicycles. 

For Easter, during the egg hunt, Lileya and Liyora would give their first few eggs to Lauren before they would rush out to fill their own baskets. There were so many profound and moving memories that we will cherish forever.

Lessons from Lauren

Lauren had so much to teach us in her short 13 years. One important virtue she taught us is patience. Whenever we would travel by plane, we could not “race “ with the many others who stood up right away to leave the plane. It only meant we had more time holding hands with Lauren as we waited for all to get off the plane. She taught us how to slow down and be in the present moment.

She also taught us the value of being selfless for someone you love. We were at a friend’s house when, suddenly, the house help shouted “Rat!” Almost everyone ran out, but Lauren’s sister Lileya, instead of running away, stood on the sofa and stayed beside Lauren. Lileya hugged and told her, “Don’t worry ate (sister), I will not leave you.”

During children’s parties, Liyora would insist on getting two loot bags, and she would always say, “My ate can not walk or talk, but she is there and she needs a loot bag, too, so I am getting a lot bag for me and Ate Lauren.” She refused to leave the line until two loot bags were handed to her- one for her and one for her sister.

Lauren also reminded us about the value of finding happiness in the simplest of things - whenever we gave her bracelets, she would slowly lift her arm and smile appreciatively. And we would smile with her.

She reminded us that miracles can happen any day. Every night, as I put the the girls to sleep, we would always pray and then I would kiss Lauren and tell her, “God loves you. Mama Mary loves you. Mommy loves you. I know you love mommy, too.” 

Lauren, at this point, had never spoken a sentence all her life. Then one evening, when she was around eight, after our nightly prayers, she slowly opened up her lips and said, “Ahhh Lahh Ooh Mah Ee.” 

I heard it and the world stopped turning. I asked her yaya if she heard what Lauren just said, and she also could not believe what she heard. I asked Lauren if she could repeat what she said. Then she repeated the words, “Ahhh Lahh Ooh Muh Ee.” It was clear as day: “I love you, mommy.” 

This was the only time Lauren spoke a sentence in her life. And it was to let me know she loved me, too. And hearing it once is enough to last me a lifetime.

Despite her condition, Lauren lived and loved to the fullest.

Lauren taught us about an infinite number of lessons. Most of all, she taught us about love, hope and faith.

I sometimes wonder what was more difficult to bear- the moment she passed on, or the moment I found out she had cerebral palsy and would be wheelchair-bound all her life.
As in most journeys through life, the beginning is always the hardest. It was difficult knowing she would never become what I had hoped my firstborn to be-- will she ever stand or walk? 

Will she ever speak and tell us what she wants and what she feels? Nothing was certain... all I had was hope. 

The biggest challenge was making sure that Lauren would experience all that her
younger sisters were experiencing. When Lileya and Liyora became flower girls in my cousin’s wedding, Lauren was one, too. She was in a wheelchair, but she was part of the entourage. To me, it was about making sure that Lauren had a life that was as normal as possible, and a life not different from ours.

In her last minutes with us, as I was holding her hand, all I could tell her was this: “Remember that Jesus loves you. Mama Mary loves you. When you see them, it’s okay to go with them. Mommy will understand if you have to go. Remember we love you forever.”

It was here that I learned, that in life, it’s about love and hope. In death, it’s about love and faith.

This was how Project Wheelchair was born. While it was borne out of a dark moment in time for our family, it brings light and continues to thrive out of hope, and as Lauren would say, out of love.

Nine years ago, Lauren’s younger sisters, Lileya and Liyora, joined the Best Food Forward event, an annual food festival. Lileya made her signature butter beer while Liyora sold her sweet concoction she called “Chocolate Happiness.” 

From the proceeds that weekend, the two sisters were able to purchase two secondhand wheelchairs. By the next year, they were able to donate four brand-new wheelchairs as well as walkers and crutches. 

By the third and fourth years, we moved the fundraising to our home and organized a sit-down twelve-course dinner, where the successful turnout provided wheelchairs to people who need them the most in Manila and also in key areas such as Tacloban.

For the next five years, we held Project Wheelchair Fundraising Dinner in The Champagne Room of Manila Hotel, and each year, it was a sold-out dinner. Because of this, Project Wheelchair has given wheelchairs to so many people with handicaps around the Philippines, from Baguio to Marawi. 

Project Wheelchair is a fundraising program for charity that donates wheelchairs to marginalized communities throughout the country. Now on its ninth year, Project Wheelchair was borne out of a sister- and mother-daughter love story.

The author with her daughters; Lauren celebrating her birthday with sisters Lileya and Liyora.

We do this dinner to honor the life of Lauren. Even after she has passed on, her life’s purpose continues to unfold. Love, I have since learned, is also about letting go. It is about having faith and trust that letting go does not mean goodbye. 

Instead, letting go is about letting go of the grief from tragedy, and being able to transform the grief into something good. 

To us, Lauren’s light lives on. She is in every person that Project Wheelchair is able to touch. She is in the laughter of our family, the work that we do every day. Lauren’s love continues to shine brightly, and I will always be grateful for the beauty that light brings.

CEREBRAL PALSY
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