Marisol’s Purpose

Marisol Liliana O’Brien

Was born in Guatemala on April 30, 2000, and she came home to our family on December 12th, just before Christmas, of that same year. She was the youngest in our family behind Lucas, who was then 5, Nina, who was then 3, and Tomas, who was then 20 months old. We had four children who were all under the age of 5. Our house was crazy-noisy and non-stop fun.

From the start, Marisol refused to sleep at any time of the day or night. Maybe she just did not want to miss anything that might happen when her eyes were closed, or maybe she and her disease knew more than we did at that time. She was a bundle of constantly moving, smiling, laughing, active energy. She was strong, determined and willful. She loved music and dancing, particularly if the music was turned up almost as loud as it could possibly go. For her favorite songs, when the song was over, she would always say the same thing: “Again”.

She loved being with her family. Lucas, she called you “Luca”. You made her smile by entertaining her with your stories and plays. You were always caring and tender with her. Nina, she called you “Nana”. You always hugged her and read to her. She loved cuddling with you in your matching pajamas. Tomas, she called you “Mas”. You could always make her laugh, and you never stopped hugging her. Marisol was so blessed to have you three as her brothers and sister.

Our world came crashing down in March of 2003 when Marisol was diagnosed with Leukodystrophy. This cruel disease robbed our beautiful girl of her ability to walk, talk and even eat a bowl of ice cream. But, right up until just a few weeks ago, she could still smile and laugh – a wonderful giggly laugh that came straight from her belly. Please understand that while sadness enveloped us as we watched her rapid decline in health, Marisol’s outlook never changed. She was always happy and loving, and she would seek out others in order to make a glorious connection. For the nurse who might be about to draw her blood, Marisol would say “I like you”. For the doctor examining her two dislocated hips, she would say “I love you”. And for us, when we had to give her so much medicine by mouth before her feeding tube was placed, she would swallow the medicine without issue. She would only say, “Oh, that’s spicy, Mommy.”

Marisol taught us how to love unconditionally. She taught us humility. When her difficulty was great and we were sad, she would never allow us to cry. She would always say the same thing, “No ‘rying Mommy. I’m ok”, or “You’re a nice boy Daddy”.

Tricia and I together with Lucas, Nina and Tomas have been on an amazing journey with Marisol, and with God’s help, our journey has not yet ended. How is it that Jesus led us to Colombia, Guatemala, Ecuador and back to Guatemala to form our family? Why did he lead us to Lexington, to this wonderful parish, to places of miraculous healing in Medjugore, Lourdes and Marinassa Springs? We prayed so hard for Marisol’s healing. We continually prayed for just one more summer with her, one more Christmas. Well, we did not enjoy fifty Christmas’s with her, but we did have a few great ones. What then is Jesus’ purpose with Marisol’s life, her suffering and her death?

The Bible tells us that “no one can know the mind of God”. Even as Jesus was preparing to die his preordained death, he fervently prayed that His Father might change course. But then, Jesus said, “not My will but Yours be done”. We too prayed that Jesus might change the course of Marisol’s illness, but we have come to understand that Jesus’ Will was different than our will. Jesus’ Will can be found in all of you. You have been the answer to all of our prayers. Jesus heard us and he sent us you.

Jesus sent us an amazing medical team: people with compassion, tenaciousness and an excellent grasp of the science of her disorder. Jesus sent us so many wonderful nurses who have been part of our family for almost 6 years. You have all loved Marisol as much as we. Particularly those of you who were with us at the end in those difficult days last week, you will always be members of our family. Thank you.

Jesus sent us our family who prayed for us and helped steady us when we needed assistance. Jesus sent us this beautiful Parish filled with so many caring people. Jesus sent us these priests, as well as many other priests, who have prayed over Marisol in so many wonderful moments for our family.

Jesus sent us a group of friends who have been our rock and our foundation. We knew that you could be at our home at a moment’s notice to drive a child, do laundry or just divert us with food and laughter. You knew Marisol loved music, so you traveled to our house and you sang. You knew we needed prayers when the road became difficult, so you held vigils with us. These past few weeks you even knew that we needed to decorate our home for Christmas, and you simply made it happen.

Each of you, if you hugged us, or made a meal, or drove one of our children to an appointment, or performed one of a thousand other acts of kindness toward us, you did these things as a gift from God to us. Thank you. You have all been on this journey with Marisol with us. You have all reached out beyond your busy lives to actually participate in Marisol’s journey. This was Marisol’s lesson for all of us. Perhaps it was even her purpose in our lives. We now pray that we collectively might hold onto the faith, the hope and the love we have discovered while walking with Marisol.

When Marisol could still speak for a time after her diagnosis, Tricia and I could always count on a little adventure if we brought her to a public place, particularly a hospital or a doctor’s office. If, for example, we were on an elevator with some random stranger, Marisol would look right at the person and say “hey… hi… hey… hello” until they finally turned toward her. Then she would always say the same thing, “where’s your Mommy?” This usually provoked some stumbling about by the stranger, particularly if they were older than 60. After a few seconds, Marisol would proudly point to Tricia and say, “This is my Mommy.”

Marisol knew that the best way to change our own lives is to reach out and make a caring, loving connection with another person. We in this church have started to make that connection as we prepare for the coming of the Lord on Christmas Day. Marisol was a simple child whose approach to life was to simply love others with her whole soul and her whole being. Let us pray that people will continue to recognize us by the love and compassion that we show to all we meet.

This journey cannot end without me speaking about my wife Patricia Jennifer Joyce O’Brien. Our Catholic Faith teaches us that the turning point in the life of our world occurred when a young, poor Jewish girl named Mary said “yes” to an amazing petition from the angel Gabriel. Tricia, you too said “yes” to a journey with our angel Marisol, and, like Mary, you had no idea where the child Marisol would lead you. “Who can know the mind of God?” I certainly do not have many answers this morning. All of your life, Tricia, you have simply wanted to be a mother. So our journey to build a family led us to Latin America, and God blessed us with a beautiful family.

What a wonder it is to watch you as a mother, Tricia. And, as Marisol’s tragedy has unfolded in our midst, you alone have had the strength of Mary’s character to “bear all things”. Even in these last days when I was weak knee-ed and longing for sleep, you have continually stood up and said “we’re not quitting”. You know more about Marisol’s care than any member of the medical team, and every staff member at Mass General Hospital knows that you are a passionate, smiling advocate for our little angel. I’m sorry that our ending is not different, but you have now been “baptized by fire” in a manner that has brought glory to God. I know that you will someday again run with Marisol on a beach in heaven. Your love of Marisol, Lucas, Nina and Tomas will surely triumph over something as temporary as death.

Lucas, Nina and Tomas, for over five years your lives have been affected by Marisol’s illness. It is not easy to miss a school event because your sister had a medical emergency, or to feel sometimes that your needs must take a back seat to those of your ill sister, or to have an ambulance crew come trooping through your house in the middle of the night. You have each been loving brothers and sister to Marisol, and now she can be your advocate in heaven. We will always be a family of six.

Marisol. I love that name. It means “Sea and Sun”, and she loved the beach. I love to say her name over and over again, and I invite each of you to do the same in the coming days, weeks, months and years. She taught us that we should be happy every single day. She taught us that we should laugh and smile often. She taught us that we should be unafraid to love one another. Please Lord, help us to hold her example close and to say her name often.

Good bye for now our sweet angel Marisol. Until we meet again some day, play that music again and again, laugh at full volume, and dance forever. Hold you me, Marisol.