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Who Does This Mom Think She Is?

A Letter to My Child’s Doctors/Nurses/Therapists/Social Worker, etc…

Dear Doctor,

You’ve met a lot of moms.  These moms often share common characteristics. They can be categorized accordingly.

The crazy mom is the mom who emails all the time.  You know her, she’s the mom who sends you her “ideas” in the middle of the night, the patient-portal-penpal you never wanted.  She makes unreasonable demands and expects everyone to go out of their way to help her child.  The crazy mom is a little unpredictable…sometimes she’s perfectly fine and pleasant.  Other times, she’s angry, upset, and emotional. You’re not really sure what to do with this mom, other than to steer clear of her and avoid your inbox.

The mom in denial is a little more straightforward, albeit a sad case.  This is the mom who is unable to accept that her kid has an illness or disability.  She has unrealistic expectations that her child will live a typical life and do normal things like go to college, get a job, get married…the list goes on.  She doesn’t understand that the professionals can predict her child’s future better than she can. You feel sorry for this mom.

The high profile mom is the scary one.  You don’t feel sorry for her at all. She has knowledge and social capital, and this makes her powerful.  When the high profile mom doesn’t like the answer you give her, she calls the person in charge.  The worst part is that the person in charge usually acquiesces because the high profile mom falsely appears so reasonable and articulate.  This makes her not only frightening, but unlikable.  She needs to stay in her lane. You have to watch your back with this mom.

The mom shopping for a diagnosis is the one who requests all kinds of testing, services, and supports for her child.  When the mom shopping for a diagnosis disagrees with your recommendations, she keeps pushing until she finds someone who tells her what she wants to hear.  Sometimes you wonder if this mom wants her child to be sick…does she have some warped, unmet desire for attention that she’s trying to fulfill through her child’s medical team?  Ultimately though, you conclude that this isn’t the case.  You recognize that the mom shopping for a diagnosis is just hopelessly misguided.   Eventually you give up on arguing with her and do what she wants.  It’s easier that way. 

The know-it-all mom is the one who thinks she is smarter than everyone on the team. She comes to appointments with notepad in hand, writing down everything you say so she can hold it against you later.   The know-it-all mom didn’t go to school to be a doctor, yet, for some reason, she thinks she can do your job better than you.  She sends you research and asks lots of questions.  Who does this mom think she is anyway?

Who does this mom think she is?  This mom is me.  

I am all of these moms, really.

I’m the crazy mom who knows in her gut that something is wrong even when everyone tells her things are fine.  One day, I thank you for helping my child. My praise is delivered to you both in gratitude and in the hopes of encouraging this behavior.  The next day, when my child doesn’t receive the treatment she needs, I am vocal in my displeasure and tell you I expect more.  Now, you’re completely confused.  As the crazy mom, I am at one moment composed and calm, and at the next, I’m bursting into tears in the middle of the hospital cafeteria.  I’m the mom who needs therapy.

That need for therapy is overwhelmingly evident when I’m the mom in denial.  After you inform me of all the things my child will not be able to do, I insist there must be some other way to handle it. I can feel the tears threatening their onslaught but choke them down for now.  You look at me sympathetically, proactively passing me the box of tissues.  In one breath, you tell me I’m doing a great job.  In the next, you gently imply that maybe my child won’t do everything I think she will and that I need to learn to accept this new reality.  At this point, I’m the mom who shuts down, ready for this conversation to be over so I can continue down my path of unrealistic expectations.

But if you mess with my kid, there’s no shutting down.  Now I’m the high profile mom.  I’ll contact your boss, your boss’s boss, and even the hospital board, until I get what my child needs.  I’m relentless. I call in all my favors, contacting everyone I know with connections.  At this point, your superiors are involved and they direct you to do what I have requested.  You are insulted and embarrassed.  How dare I question you and go over your head?  You warn your colleagues about me.  My child suffers because of it, but for the time being, I get what I want.

Sometimes what I want is more information…an explanation…an understanding of why all this is happening to my baby.  Now I’m the mom shopping for a diagnosis.  I am at first politely told why my thoughts are incorrect, and why what I’m suggesting is inappropriate.  Later, the rebukes aren’t as polite.  You lay out the research of why you are right and I am wrong.  You have only seen my child for twenty minutes, but clearly the diplomas on your wall are evidence that you know more than I do.  Eventually, you realize that this back and forth game is endless. You recognize that I am going to keep asking you for things and you finally concede.  “Sure,” you say, “We can do that,” and then you complain to your colleagues about what a waste of resources and time this request is.

Why do I keep pushing for these things?  Because I’m the know-it-all mom...the mom who does her research and asks questions.  I’m the mom who takes notes of everything you say. I spend hours combing the internet for more information and asking Chat GPT questions until I’ve explored every rabbit hole there is to investigate.  Armed with my newfound knowledge, I share my thoughts with you and keep asking more questions.  “If this mom knows so much,” you wonder, “Why doesn’t she just do my job?”  Believe me, I would if I could and I’d do it better.

But the truth is, I can’t do everything.  I need you.  Please help me.

Please understand that I can be more than one thing at once.  I am not the crazy mom.  I can be your cheerleader and I can also challenge you.  I can appreciate what you are doing for my child and still ask for more because my child deserves the world.

Please don’t use your armchair psychology on me.  I am not the mom in denial.  My refusal to accept the limitations you seek to impose is my recognition that my child can do more.  You don’t have a crystal ball.  You can’t predict the future for my child and I won’t let you.  

Please don’t be intimidated by me. I am not the high profile mom. When it comes to something as consequential as my child’s health, I won’t put my blind faith in anyone.  The only truth I unquestioningly embrace is that of the love for my child.  This love is what guides me, not you.

Please be patient with me.  I am not the mom shopping for a diagnosis.  I’m the mom who needs answers.  I want the best possible life for my child.  I need you to fully explore and investigate her needs so that she can live the life she deserves.

Please listen to me.  I am not the know-it-all mom.  I don’t think I know more about your field than you do.  I am certain, however, that I know more about my child than you do.  I can be a valuable asset if you consider the information I’m sharing.  We can figure this out together.  Let me be part of the “team,” in more than name only.

Speaking of names, I have one.  It’s located on the dozens of forms I completed for you. You can address me by my name, rather than just calling me “mom.”  The sacred term of “Mom” is reserved for the people I gave birth to.  My name distinguishes me from the thousands of other moms you see in a year.  

Those thousands of moms and I are part of a club we never wished to join.  We are a group that has endured some of the worst possible pain - helplessly watching our children suffer.  Just as our children have been granted diagnoses, we too, are given labels. In our anguish, we have been turned into caricatures by professionals who know us only within the four walls of a hospital.  But we are more than these overly simplified cliches.

We are moms who spend more time at hospitals than soccer fields. Despite this, we still manage to work, make dinner, chauffeur our kids to school and appointments, and then stay up late researching medical disorders once everyone’s gone to bed.

We are moms whose home decor is more “physical therapy chic” than “mid century modern.”  Our living rooms are crowded with pieces of equipment acquired through hours of negotiation with insurance companies. It’s not necessarily the look we were going for, but we’ll change the color scheme of the dining room to match the wheelchair.

We are moms who are unapologetic in our quest to provide our children with the best lives possible.  That might mean firing a doctor or therapist along the way, and if those individuals weren’t willing to help us, we’re not sorry about it.  Either get on our bus or get run over by it.

We are moms who have so much love for our children that our hearts can barely contain it, and sometimes, they don’t.  We are moms who cry…in the hospital cafeteria, in the hallway with doctors, in the shower or the car…really anywhere except in front of our kids.  Because we need to be strong for them and we are.  

We are moms who have been told many times, “I can’t imagine what you’re going through,” by friends, family members, and even medical professionals.  Dear doctor, we hope you never have to imagine it.  But if you do, you will get through it.  You will keep going because you have to.  You will be strong because there is no other option. You will advocate because your child deserves it.  You will fight because you are the most powerful person there is...because you are Mom.

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