“Never be afraid to follow your child’s happiness”
“Aaliyah loves macaroni and cheese, she loves the movie Moana and Christmas, she loves music and dancing to Ladybug and Cat Noir, and she loves Minnie Mouse and wearing her special Minnie Mouse shoes. She has a jolly spirit and always finds a way to be happy, even when I’m not. Little does she know right now, but to me she’s not just my little three-year-old girl, my little miracle. To me, she is so much more. She’s my hero.
I see in her now the same spirit that kept her smiling and laughing in the eye doctor’s office when they prescribed her eye drops to get rid of the bright light I found going through her eyeball – and in the ER we took her to when the light kept getting bigger. A CAT scan revealed the issue to be retinoblastoma, a cancer that begins as a mass tumor in the eye’s retina. Her father Miguel was at work and calling him to give the news was one of the hardest things I’ve ever had to do. He was crushed — we all were.
Once we got the diagnosis, we had to stay in the ER because it was so serious before being transferred from Tampa to Miami. Miami was the only place that had a team of pediatric doctors capable of treating her. The whole time Aaliyah called it “Sissiami.”
My world was ending, but there she was, giggling and smiling in the face of danger.
On Saturday she was registered, and on Tuesday she was under sedation for her MRI. The news confirmed our worst fears — her eye was dead, and the only way to prevent the cancer from going to her brain was to remove it. I was so scared.
The operation was successful, but Aaliyah still had a long journey to go. Some cancer cells still remained in her optical nerve, and she was put on a six-month plan for chemotherapy treatment. During this time, she could barely eat and ended up having horrible constipation. Living through this pain of seeing my hero struggle led to lots of sleepless nights for Miguel and I.
Parents are meant to protect their children, to keep them safe, but I felt helpless. I fell into a deep depression. My firstborn, Armani, probably took it harder than any of us – also feeling utterly helpless as she had to watch her little sister get sicker and sicker right before her eyes.
But on my worst days, I didn’t have to look far to find the inspiration to keep hoping. Literally two days after her operation, Aaliyah was up and moving as if nothing ever happened. Miguel and I were quite inspired by her little spirit. I have no idea where this beautiful spirit comes from, but it’s undeniable, and continually reminding us all to be happy and live in the moment.
She wanted to get up and play when the doctors put the port into her chest. She wanted to smile and giggle during treatments even as the other children around her slept. At routine doctor visits, she was even known by the staff to show off her dance moves – she loves to dance. She didn’t know this, but she was reminding Miguel and I what is really important in life – living in the moment and making memories with the people who are most important. So, we decided to embrace our situation and to never lose hope.
Then, when the news came in February that her images were cancer-free, for the first time in a long time I felt like dancing too.
Today, Aaliyah has a prosthetic eye that must be replaced every four months because she keeps growing. It’s amazing, you can’t even tell that it’s different, and she wears it so well. We are all so proud.
We received a call from our advisor stating that we qualified for an all-expenses-paid trip to Give Kids The World Village. It was a moment we will never forget. It was raining the day we all packed into our car to make the drive from Tampa to the Village, and even though I was feeling down that day, we didn’t care. We only cared to get there as fast as possible so we could forget the struggle for a week and leave our worries behind.
And here we are now with Give Kids The World, making memories as if the cancer never happened. Aaliyah felt so comfortable and welcome here that she wanted to take off her head wrap, which typically hides the hair still growing back. She never does this – the magic here gave her this gift. She instantly received a boost of confidence when she saw other kids like her having fun and playing like nothing was wrong. It inspired me to feel the same – that was the gift she gave to us.
We visited the Disney World parks, including Animal Kingdom — the lions were by far her favorite part. She watched them napping in the exhibit from my lap, giggling and pointing the entire time as we drove by. Now whenever she is asked what sound a lion makes, she will pull up her little hands in the shape of claws and say “Grrrrr!!!” with a grin never leaving her face. The confidence and courage of this little one is just like one of those lions.
She has taught me never to give up, to have faith, and when facing the darkness to never be afraid to follow your child’s happiness. It shines brighter than you could possibly imagine, and there is nothing it can’t overcome.
In the spirit of not losing hope, one day she won’t be so little. We are looking forward to her growing up and maybe having kids that shine with the same spirit I see in her. And who knows, maybe she’ll become a doctor who saves lives, just like the ones who saved her life. To me, though, she’s never going to age a day. She will always be our little hero.”