Brooks' Story is shared by his mom, Jill Goldey.
Our sweet Brooks was born on March 21, 2024. We enjoyed every second of the newborn stage, watching him smile, wiggle, and coo. There was no problem that his sweet gummy smile, or little snuggles couldn’t fix. We loved hearing his voice. It’s a sound we never want to forget. He was the best little brother and loved to be rocked, held, swayed, and sang to.
Right before Brooks turned six months old, he started having what we thought were seizures. His eyes would open so wide, and then relax, over and over. At first, we thought it was one of his many cute quirks, but soon realized something serious was going on.
After our first trip to the hospital, and many invasive tests, our worst nightmare was only beginning.
I remember getting the call about his diagnosis so clearly, like we were frozen in time and everything else was still going on. A terminal diagnosis is never something parents are prepared to receive, but we were determined to give our baby the best life we could.
Brooks regressed quickly, losing his ability to hold his head up, babble, and roll. Soon after that, he also lost his vision, hearing, and ability to swallow.
Despite the hardships and limits that met Brooks, he lived a life full of joy. He loved playing at the park with his big sister, going for walks, dancing in the kitchen with Mom and Dad, and taking naps on anyone who would hold him. He laughed once, and it’s a memory we will cherish forever; I’ve never heard a sound so sweet.
The only advice I would give to a newly diagnosed family is to never take a single second for granted. The therapies, treatments, doctor’s visits, battles with insurance and pharmaceutical companies can become all-consuming.
To know the time you have left with your child is limited is sickening and terrifying, but it’s also a gift. Thirteen months were all we had with our boy, but every second of it was a just that—a beautiful gift.
Our family holds on the thought of our son seeing the beauty of Heaven with his own eyes, while he plays and dances with the other children who were waiting for him there. It’s what gives us strength in our darkest moments. We will carry the memory of Brooks, his story, and all the love he shared so generously in our hearts forever.
