This Mom Knows Who She Is

Back in 2024, I wrote a piece called, “Who Does This Mom Think She Is?” - a letter to my child's medical team. This is the letter I would write today.

Dear Doctor,

It’s me again.  It’s been a while.  Allow me to reintroduce myself.  

I’m the crazy mom who used to contact you frequently in desperation over my child’s illness.  You know…the mom who was in denial and couldn’t accept what you told her?  Yes!  That’s me.  Wait!  Don’t run away…

I know you’re not thrilled to hear from me. You probably remember me as the high-profile mom who kept climbing the chain of command as her child deteriorated, searching for someone — anyone — to intervene.

Sorry-not-sorry for that. 

Although, in the end, it didn’t get me very far. Mostly, it earned me a reputation as the know-it-all mom who was shopping for a diagnosis.

Well, I wanted to let you know — we finally got one.  A diagnosis.  Someday, perhaps, I’ll tell you what it is. But that isn’t what this letter is about. 

This letter is about a question you asked years ago: 

“Who does this mom think she is?”

I’ve had a long time to consider that question. So let me answer it.

This mom is a detective.  She knows her child in ways that no chart, lab result, or twenty-minute appointment ever could.  She is attuned to the almost imperceptible changes – ones that are easily missed until they are suddenly impossible to ignore.  Her hypervigilance has caught medical mistakes.  It has prevented infections. It has protected her child when the people responsible for doing so did not.  

This mom is a part-time, unpaid medical researcher.  Not because she wanted to be, but because she had to be.  She’s spent countless late nights reading medical journals, chasing footnotes, learning terminology she never wanted in her vocabulary, and trying to connect the dots that others dismissed as insignificant.  She hasn’t truly slept in years.

This mom has a nervous system that may never fully recover. She still has a hospital bag packed in her closet.  She still travels with a full tank of gas so she’s ready for the next emergency.  She still jumps when the caller ID reveals it’s the school.  She still wakes in the middle of the night, ready to leap into action when she hears an unusual sigh, or cry, or breath.  She still wonders when the other shoe will drop.

This mom is hardened.  She once believed that help would come.  That doctors would persist through uncertainty.  That specialists would listen with an open mind.  That the person who knew her child best would be treated as part of the “team” rather than an obstacle to it.  She knows better now. She learned that questions can be treated as challenges, especially when they come from someone without the right credentials.  She learned that the system she thought was designed to protect her child was also designed to protect itself.  And she learned that if she wanted someone to keep asking questions, that someone would have to be her.

This mom is softened.  Because alongside the fear, uncertainty, and anger, there was also extraordinary love.  She has a bond with her child forged in circumstances she wishes neither of them had ever known.  And somehow, even in the middle of the unimaginable, they laughed.  They were silly.  They had fun.  There is an intimacy in that relationship that is difficult to explain to anyone who hasn’t held both fear and joy at the same time.  Living so close to both changed what ordinary means to her.  Moments like watching her child walk into school, eat ice cream with friends, or complain about homework are no longer ordinary.  They are gifts.

This mom is tired.  Physically, mentally, and emotionally.  Tired of fighting.  Tired of researching.  Tired of explaining.  Tired of never being able to let her guard down.  Tired of having to prove what she knows about her child. 

This mom is tired because this mom is human.

This mom is also relentless.  She has been exhausted, scared, defeated, and knocked down more times than she can count. She got back up every time.  And when the experts told her she was wrong, she kept going anyway.  Because too much was on the line to stop.

This mom is clear-eyed.  She has learned that most people will show up for a crisis, but a prolonged crisis is different.  Some of the people she thought would be there disappeared.  It hurt.  But she has made peace with it.  Because there were others.  People who stepped into the empty spaces without being asked.  They sat beside her, listened, carried what they could, and refused to leave when the crisis stopped being new.  

And eventually, after a lot of searching, she found professionals who did the same.  Doctors, nurses, therapists, and others who listened when it would have been easier to dismiss. Who admitted when they didn’t know. Who remained open to what they, or others, might have missed.  Who asked another question, made another call, looked one more time. They didn’t always have the answer, but they were willing to keep looking for one.  

She remembers them, too. 

She knows now that credentials tell you someone’s role, not who they will be when you need them most. And she also knows that the system’s failures don’t erase the people within it who chose to care and who chose to stay. She knows not to confuse history with loyalty, words with actions, or expertise with certainty.  She sees people differently now, and her life is richer because of that discernment.

There was a time when she was worried about being labeled as that mom. 

She was worried about politeness.  About being liked.  She was worried they’d think she was crazy or in denial.  She thought if she asked too many questions they’d say she was shopping for a diagnosis.  That if she kept climbing the chain of command, she’d be viewed as the difficult, high-profile parent. That if she came to appointments with a list of questions or a folder of research, she’d be seen as a know-it-all.  

She was right.  

They did think she was all of those things.  

And the truth is that none of it mattered.  

Because when forced to choose between someone’s opinion of her and her child’s well-being, this mom never really had a choice.

Call this mom whatever you want.  You can call her the crazy mom. The in-denial mom. The high-profile mom. Call her the mom shopping for a diagnosis or the know-it-all mom. You can keep every one of those labels.

Because while you were busy deciding what was wrong with this mom, this mom was busy figuring out what was wrong with her child. 

Turns out, this mom wasn’t crazy. She wasn’t in denial. And she wasn’t shopping for a diagnosis. She was searching for an answer. And she found one.

So, if you ask her today, “Who does this mom think she is?”, she’ll tell you.

This mom is that mom.

And knowing everything she knows now, she would be that mom again. And again.  And again.

Every. Damn. Time.

Yours Truly,

That Mom

Some people come into your life because everything is going right. And some find you because everything has gone terribly wrong. This blog is dedicated to the moms I met during the most difficult time of my life. I will always be grateful that, somehow, in the middle of all of this, I found you. Thank you forever to Jess, Steph, Kat, Stephanie, and Christine.