Family came and stayed. Friends and teachers visited. Folks sent gifts and brought flowers, sandwiches and toys, and provided entertainment for my kid so I could wash my hair or take a walk around the block. And so many people called, texted and commented on my stream of social media updates on Freyja’s condition. I appreciated the outpouring of love, especially because I knew it was hard for others to keep up with such difficult stuff.
Many people didn’t know what to say, though, and from them what I heard more than anything else was, You’re an amazing mom. She’s such a warrior! At first, this cheered me. But after too much time in a place where sleep is always elusive, the lights are always on and worried parents can do little but think, it started to irk me. It didn’t feel true, and I began to hate hearing it.
Because here’s the thing: when people tell me I’m the best mom ever, what I hear is that my child and my life are too much for them. I do not do this by choice. I did not ask to be a special needs mom. I did not want to raise a child with such medical complexity, and I sometimes I still struggle with accepting it. Yet I love both my kids with all my heart, and because I love Freyja and Freyja would not be Freyja without her disabilities, I have come to understand that I love them, too.
I realize that when people call me such an amazing mom, their intentions are good. They are trying to express empathy, if not understanding. But the execution feels clumsy. Most special-needs parents — me included — believe that most people don’t understand us and our lives, that people don’t know what to say, how to help or when to reach out. We feel isolated, and we crave connection. A meaningless, generic and overused commendation like you’re the best mom makes me feel invisible. If you want to make me feel seen and heard, please know that I really do appreciate your kind thoughts, and that I would love to be recognized for who we are and what we do.
My daughter is a kid with a bunch of equipment and a team of doctors, and she has to work harder than you or I do to go about the daily business of the life she has always known.
What makes her special is not that. It’s this: She loves to approach strangers and strike up conversations. She will ask to pet your dog. She will comment on the color of your hair, on your shoes. She will tell you all about her day, about her chickens, about her braces and why her legs don’t work. She will gladly share any part of herself with another person and make that person feel for the five minutes she’s with them that they are the most important thing in the entire world. And she will remember details, want to talk on the phone and ask to come visit.
As for me, I am the parent of a child with a terminal illness. That is impossibly hard, but it does not make me an amazing parent. We also have another child: a bright, strong, brave, talented, beautiful daughter who struggles with her fraught role as the caregiving neurotypical sibling. This too is painful and challenging even on the best of days. It’s an otherworldly marathon, this life.
When I complained, “I’m not amazing! Anyone would do this for their kid!” to a friend, the newly single parent of two autistic boys, she reminded me that in fact not everyone would, including her own spouse. And she was right — this is the kind of life that wrecks marriages and breaks families apart. It wears a person down. It makes it harder for me to be my best self. I don’t have limitless patience. I make bad decisions. I am sometimes too tired or too touched out for yet another hug or snuggle. There are days I cannot bear to watch one more Disney movie. I lose my cool. I forget school events. I buy frozen pizzas and microwave mac and cheese.
What I am proud of is that I act with a fierce meticulousness, with determination, with tenacity. I rise to this unwanted occasion in a way that not everyone does. Because of my very type-A, controlling personality, I do two things well. One is advocate. Residents, fellows and even attending physicians are surprised by me, by my presence, my comfort with medical terminology, my willingness to push back and my insistence that my daughter might need this instead of that. Her diagnosis is so rare and so poorly understood that I feel I must know every detail about it and how it manifests in her so that I can ensure she gets the best care possible. Don’t tell me that makes me an amazing mom, because it doesn’t. Tell me instead that I am a powerful advocate; tell me you are there for me. Offer to help me in a way that doesn’t make me have to ask, and know that I will probably say no, anyway.
And because I am a writer by nature and I process my own thoughts and feelings with my fingers on a keyboard, the other thing I do well is document everything: for myself, yes, but also for her. For her doctors, for science, for the insurance companies, for our friends and family, for anyone in the world who needs or wants a little piece of the magic she possesses. This is a job no one wants.
Know that you don’t have to say anything. You can’t fix this, and neither can I. Please just ask me how I am. Ask me about Freyja and her sister. And just listen to my answers.
Because one day Freyja will be gone. And while she is here, I want to share her joy and even her pain with the world around us. When strangers reach out to me to tell me that their child has the same rare disability, that it helped them to hear that I struggle with sleep and exercise and my weight, that Freyja made them smile when they were having a terrible day, that reading her story or mine made them learn something new about their own parenting journey, or even that they just appreciate my honesty, that is magic.
That kind of connection, that kind of joy and love that I can help Freyja spread wherever she goes — that is what is truly amazing.