I’m Alyssa Nutile, and every caregiver I’ve ever met has an origin story marked by a moment that changed the course of their life or a phrase that changed their perception of the world.
For me, it was this statement uttered by a radiology tech in a cold, sterile doctor’s office: “We’re not sure what it is, but there’s something wrong with your baby.”
Before that moment, I was already a mother to a little boy, a wife to a college professor, and a woman trying to find her place in the world. In other words, a fairly typical late 20-something Millennial. But I certainly didn’t think of myself as a “caregiver.”
I wasn’t completely new to the medical system. A childhood hip injury and multiple surgeries ending in a total hip replacement at 18 years old meant that I’d already spent some time in hospitals. Having a mother who spent her entire career as a nurse meant that I knew enough medical terminology to have coherent conversations with medical staff. But I don’t think there’s enough experience in the world to prepare you for the news that your unborn child’s brain isn’t developing.
What followed that appointment were many more visits to MFMs, neurologists, and neonatal specialists before my daughter was finally born. It still took six more weeks, three surgeries, two NICUs, and more than a dozen total specialists before we finally found a diagnosis.
“There’s something wrong with your baby. And we know what it is.”
If I thought we would get some sense of certainty or closure once we finally had a diagnosis, that notion was quickly amended once we realized it meant global delays, disability, and a significantly shortened lifespan. There’s little comfort in receiving an answer when it means your child will likely die before you.
But this isn’t the end of the story for me or my daughter or my family. I left that hospital feeling broken, hopeless, and woefully unprepared –and some days, I still feel all those things– but I’ve grown into something else too: not just a parent or a teacher or a coordinator or a therapist, but all of those things together. I’m a caregiver.
But embracing the identity of a caregiver still didn’t come naturally.
I truly don’t think any of us are born with the skills necessary to care for and advocate effectively for a medically complex child without a lot of practice and even more trial and error. Receiving my daughter’s diagnosis didn’t turn me into a great advocate overnight.
Instead, following the lead of gentle but experienced nurses in the NICU opened the door for me. Sometimes they offered subtle hints: “Are you sure you’ve read over all of the forms?” Other times their suggestions were more direct: “You can tell them no more blood draws on her for today, and you can ask them to batch them all together tomorrow.”
Those first eight weeks we spent in the NICU didn’t teach me everything I needed to know, but it served as a crash course and set expectations for what was to come. But in some ways, when your child is acutely ill, the advocacy comes easier. The stakes already feel higher. The stress is already eating at you. It’s a make or break situation. That type of caregiving hit me like a tidal wave. I understood early the type of advocacy that was necessary from me in that environment.
But it was hardly the only kind of advocacy I’ve had to learn. There’s another kind of advocacy that you learn slowly as a caregiver. It’s not a type of advocacy that usually shows itself in a single moment.
Instead, it’s a collection of experiences and opportunities and discussions that continually proves to you that you’ll spend the rest of your life fighting for your child to be allowed to take up space and show up in the world. That you’ll spend the rest of their life fighting for their humanity, not just their medical needs.
It happened quietly at first. And it was just out of sheer exhaustion, both for me and my daughter. It was the first time we turned down the opportunity to expand her therapy sessions from six to seven or eight. And it was therapy she technically needed on paper, but she was just so tired, and so was I. And her therapist wasn’t particularly happy about it, but I saw the way the work was wearing on my daughter instead of building her up, and I made the call. At the time, I questioned constantly if it was the right option, but looking back, I know that it was. Perhaps unsurprisingly, the break in work gave her the opportunity to develop and show us more of her personality instead of being too tired to interact with us.
I noticed it more when I stopped letting the opinions of those who’d only known her for five minutes make potentially life changing decisions for her. When I demanded different surgery plans and pushed back on medication changes. And when I accepted that I can’t be the best caregiver for her all alone and started letting other family members and pediatric nurses help us at home.
It was louder still when I stopped trying to explain and soften my daughter and her disabilities. When I stopped describing her complex medical conditions to others and made no mention of them unless asked directly. When I would look a stranger in the eyes and introduce my daughter simply, “This is Gemma.” End of sentence, regardless of the looks of expectation I received in return. When I took her places that were hard to access or that others thought she might not enjoy simply because she experiences the world differently than others.
And when I embraced that as long as I can advocate for her and fight for her way into spaces and places, she can access them, that’s when it truly landed that I’m a caregiver.
I’m Alyssa Nutile, and I’m HER caregiver. And it’s not my only identity, but it is the one that weighs on me the most heavily.
Because I am a mother, but most mothers raise their children with the expectation that they’ll eventually outgrow their need for their parents. That will not be the case for my daughter.
I am a wife, but my relationship has been fundamentally altered because my husband and I both know that sometimes, everything including our relationship, will take the backseat to caregiving.
And I am a person, an individual with goals and dreams and aspirations, but now I’ve built them around my daughter, and what I can accomplish while still spending as much time as I can with her.
It’s not a perfect identity. But it’s who I am now, and it’s given me a purpose and a hope in a life where I’ve had to hear the words “your daughter won’t outlive you.” It’s an identity that changes as my daughter’s needs change and as my experience grows. And the truth is, despite all that we’ve gone through, I can no longer imagine or even wish for a different role for myself. I’m so fundamentally changed by my role as a caregiver, I don’t think I’d recognize myself without it. Is that fair? I’m sure it’s not.
