The Rollercoaster of Love: From Diagnosis to Empowerment

In 2019, I thought my life was “set.” I had a wonderful husband, two boys, and a stable job that I loved, and I had no idea our lives were about to shift from a quiet picnic to a rollercoaster ride where someone had just yelled, “Surprise!”

That rollercoaster’s name is Isabella! Now six years old, Isabella was born with a critical heart defect that required immediate hospitalization. After four months in the hospital and three surgeries, we finally took our little warrior home. We were excited but terrified. Our "new normal" involved a gastrostomy tube and a complex medication schedule. How does one prepare for this? Fortunately, my hands-on husband thrived in the challenge, keeping me sane while I learned how to mother this beautiful girl.

A New Diagnosis

Because of her long hospital stay, Isabella experienced developmental delays. Every checkup brought a list of questions about her progress, and I soon realized she was on a timeline of her own. At two and a half, we received an Autism diagnosis. It sounds simple, but it wasn't. It followed what felt like 714 questionnaires, three specialists, and countless follow-ups.

I received the news via video call at 10 am on a Friday. My house was unusually quiet that day, but my brain was loud with questions. The diagnosis wasn't a total surprise—we had our suspicions—but I wasn't prepared for the aftermath: the endless insurance calls, evaluations, and mounting costs. At this point, the rollercoaster was upside down, and without a seatbelt, I felt like I was slipping off.

Finding VELA

While trying to juggle a new diagnosis and all of her other medical issues, I remembered VELA. Isabella’s neurologist had mentioned VELA, and honestly, hearing about a local nonprofit offering free courses and resources for parents like me felt like finding a seatbelt on that rollercoaster, something steady to hold onto when everything felt out of control. I didn’t hesitate. I hit “register” faster than you can say insurance deductible!

In the first session of VELA’s Autism Course, I met Jolene, a Parent Facilitator with a warm smile who was also a parent of a child with a disability. At VELA, that shared lived experience is at the heart of everything. Every Parent Facilitator has been on this journey too, so they understand in a way that goes far beyond textbooks or training.

I looked around the room and saw other parents. Some happy, some exhausted, but all hopeful, just like me. It was an “AHA!” moment. I wasn’t alone.

I learned so many things in those courses, but one phrase stayed with me: “You are the expert on your child.”

Every time I heard those words, I felt stronger. That knowledge is a power no one can take away. VELA showed me I could do this. As someone naturally shy, I learned to lead with kindness while firmly advocating for the services my daughter deserved. I also joined their Monthly Support Group, where I learned a vital lesson: I am important, too. I cannot care for my family if I am not a priority.

Paying It Forward

Equipped with these tools, I knew I wanted to support families like mine. One day, I received an email that changed my direction: VELA was hiring parent graduates as Parent Facilitators. It was the perfect opportunity to pay it forward.

Long story short, I got the job! Teaching the Autismo Course and Special Education Course for VELA is an honor I don’t take lightly. Seeing a parent’s eyes widen in understanding or fill with tears during their own "AHA!" moment is priceless. My heart is full when I see parents nodding in relatability or successfully using a resource we shared. Getting to do this in both English and Spanish makes my Puerto Rican heart very happy. 

It is a privilege to help others move toward empowerment while I am still on my own journey of growth. The rollercoaster ride continues, but I’ve found my footing and fastened my seatbelt. I am ready to face the future, knowing I have VELA right there with me.