Ten years ago, Oscar sat with his wife in a hospital room, his six-month-old son in his arms, and learned about the disease that had changed their lives forever. Spinal muscular atrophy. As Oscar listened to the doctor describe the progressive muscle weakness that SMA causes, he couldn’t keep his mind from jumping to what this disease would mean for his family. He couldn’t help mourning what it would mean for his son’s future.
“When Llarell was diagnosed,” Oscar remembers, “we had to go through all the stages of grief, even though he was still with us. And that’s okay. When you find out your child has a disease like SMA, you need to go through that grieving process. But when you make it through to acceptance, you’re responsible to decide how you’re going to live the life that you’ve been given.”
When Oscar faced that moment of decision, he determined that his son would have a life full of happiness, hope, and love, no matter what obstacles they encountered. “As a parent, it’s so easy to let fear of the diagnosis lead your life,” Oscar admits. “I knew we had to overcome that. And we were able to, by the grace of God.”
“We have a normal life,” Oscar stresses. “He goes to school with his Aveanna nurse. He’s at home where he can play with his sisters. We take Llarell everywhere. We take him to the beach. We even went on a cruise for his tenth birthday. He has a great life. He just needs a little more equipment than the rest of us.”
SMA brings harsh realities that Oscar cannot deny. There are difficult decisions and heartbreaking setbacks. There are things Llarell simply cannot do. But Llarell can go to school and learn just as much as any other student. He can play with his sisters and let his mom know how much he loves her. He can make his dad laugh, telling jokes on his communication device.
Oscar celebrates his son’s life for what it is and makes sure that it is all that it can be. As Oscar says, “Most parents have roses. We have an orchid. It’s different and it requires different care. But it’s still just as beautiful. And we treasure it every day.”