Louie Romero is a smiley kid that simply can’t help the fact that he is irrepressibly charming. He’s 10, talkative, a hugger, and he wants to compare his heart rate to yours on his Apple Watch.
When you meet Louie, he certainly makes an impression and these are some of the things you come away with. That he is in a wheelchair and has cerebral palsy ranks much lower on the list. Of course, this doesn’t change the fact that his life could’ve gone much differently, and no one is more acutely aware of that than his mother, Jeannette, a nurse at Gillette Children’s Specialty Healthcare.
She can take it from here.
When we first met Louie, he was being cared for in a medical foster home in California. He was born early at 29 weeks and had sustained brain damage from drug and alcohol-related exposure.
My husband and I knew that Louie would face extreme challenges, and would need far more care than a healthy child. It was possible that he would never walk, speak or be able to learn in a significant way. If we’re being honest, some of the staff at the foster home seemed genuinely perplexed as to why we wanted to adopt him—why we would choose to take on those challenges.
For me, it was fairly simple. We live in an incredibly complex world that makes it difficult for an individual to affect meaningful change. There are so many things in life that I can’t or won’t be able to do. Caring for Louie was something I could.
Growing up, my family lived near Lake Phalen in St. Paul, Minnesota. This neighborhood just so happened to be near the original location of Gillette Children’s Specialty Healthcare, the first hospital in the country specifically devoted to caring for individuals who have disabilities.
I grew up seeing Gillette patients in wheelchairs sitting outside for their Vitamin D therapy, so it would not be hyperbole to say that there has never been a time where being around individuals who have extensive medical needs hasn’t been a part of my life. When I became a nurse, I worked in adult medicine for a few years, but it wasn’t for me. When the opportunity to work at Gillette arrived, it seemed only fitting. But it wasn’t a coincidence, it was a calling.
I was drawn to Gillette, and if you ask enough staff members around our hospital halls, you’ll hear a similar story. People rarely arrive and stay here by accident. Gillette attracts a certain kind of person. I should know, I’ve been a member of the staff for 20 years. There is a shared mission among the people that work here: Children, regardless of their needs or abilities, deserve to be seen as the kids they are, rather than just the condition they have.
I remember caring for one patient when I was fairly new. She was from Montana, had cerebral palsy and was in a wheelchair. We would race with her up and down the halls in-between her therapy sessions, and she would laugh and smile. Her joy was infectious.
But I also remember when she told us, “I love it here at Gillette. When I come here, people treat me like a kid. Back home, no one will play with me because I’m in a wheelchair.” That wasn’t the last time I heard one of my patients say something like that, and while attitudes are changing every day, things need to move faster.
The patients we treat are very often made vulnerable by the complicated nature of their conditions, but given the proper care and attention, they have so much to offer this world. You don’t need me to tell you that. Ask my son, Louie.
We brought our boy home on December 23, 2008. He was our pre-Christmas miracle, and he remains that to this day. In the beginning, he was incredibly fragile and what his future would look like was unclear. He became a regular patient at Gillette, and over the years, countless individuals have been involved in his care.
I won’t say that we didn’t have our difficult days, as being the parent of any child—whether they have a disability or not—can be a grueling, day-by-day endeavor. But as the days turn into weeks, and months turn to years, you get better at it. It becomes your new, immensely rewarding normal.
Caring for children like Louie has been my life’s work, but I couldn’t possibly imagine when we brought him home that we would be where we are today. Louie has surpassed any of the expectations and goals that we had for him at the time of his adoption. He’s able to get around independently in his wheelchair. He’s a talker, charmer, and jokester, and is, in every way, a vibrant member of our family. He’s also currently attending school and is mainstreamed in a traditional classroom setting.
Before Louie was fully verbal, things were more difficult. But now when his classmates have questions about his disability, he’s able to explain it to them. He welcomes these opportunities, primarily because once people can understand why he is the way he is, they can start on the more important task: learning who he is.
And believe me, there’s a lot to learn.