What we wish our children's medical team knew

"I wish they would understand that he looks regular until he doesn't. He will never fit their textbook definitions of his disorders."

—Alison Z., Whitney W., Celina H.

"Rare doesn’t mean it’s not worth learning. Just because you don’t understand it doesn’t mean you can dismiss it."

—Celina S., Megan R.

"Anything I’m tired of explaining it… but especially that we should always take chest pain seriously."

—Megan R.

"My name. We're going to be at the NICU for weeks. I wish they would call me by my name instead of just mom."

 

—Chelcie S.

"I may not be a doctor, but I know my babies better than they do."

—Kelly R.

"I will follow up because of my high expectations. I need the whole team to run well."

—Heidi M.

"They need to communicate with each other!"

—Emily C.

"A five minute examine doesn’t give a true picture of what is going on."

—Emily C.

"I wish they would know more about my child’s diagnosis than I do."

—Roya M., Amanda S.

"What my daughter’s diagnosis was instead of telling me for over a year that there was no medical explanation. She has Bainbridge Ropers Syndrome- ASXL3."

—Veronica M.

"That my son is more than his diagnosis. Just because it’s rare doesn’t mean it’s all impossible.”

—@averyrareadventure @tawny.kelley @specialvoicesforall

“With such a large team, specialists can get tunnel vision regarding their own goals. But every intervention, no matter how small, affects my child’s quality of life.”

—@just.a.tidge

"How much their words can hurt sometimes."

—@theamazinglifeoferic

"How much we kill ourselves to get it because they recommended."

—@marcia_bayer

"Doctors have ideas to just do X but they don't realize how difficult it is to get X and how."

—@marcia_bayer

"I don't have enough time and energy during the day to do everything they wanted me to do."

—@laurenbweaver

"Caregivers are burning out fast."

—@laurenbweaver

"That I know my child best. They dont live with him 24/7 so their expertise only go so far."

—@danielle_e_garcia @hopefulmandm

"That you can't measure their worth based on where they fall on a chart."

—@the_fourvaths @mollie_d_johnson, Roya M., Amanda S.

“I wish they knew how exhausting it was to be a parent of a child with disabilities. They throw things at you like it's no big deal, when it's really a huge weight added.”

—@morganrockey94

"How hard some days at home can be."

—@sammariemurphy

"That it’s okay to tell us you don't know, and you have a plan because of it."

—@ktderoads

"Even though I act like I have it all together, I don't always."

—@nickel_lynn23

"That it felt like sometimes during this pandemic that they just left us to our own devices."

—@k8_wds

"That during the time between appointments, I felt unsupported."

—@k8_wds

"That this is hard, it sucks to be in the limbo waiting."

—@wine_in_a_mountain_town

"His GI team to show interest in the information I share about my sons genetic syndrome… consistency."

—@livelovedream89

"I spend so much time researching and advocating, that I almost forget my daughter is also a baby."

—@sarah_harris_insta

"That Trisomy 18 isn’t incompatible with life or life limiting.”

—@allforthem

“Just because I’m a nurse doesn’t mean you can’t show me compassion or empathy at an appointment."

—@cbowen525

“How to work better as a joined group of specialists instead of solos.”

—@strengtheningbyfire

“That my child loves you and looks forward to sessions with you.”

—@vidalou

"Just because my child acts this way at his appointments or therapy, doesn’t mean he always acts like this.”

—@vidalou

“Consider me a teammate with knowledge. I’ll come to rounds and brainstorm with you."

—@mollie_d_johnson

“Telling us it’s 'so rare' and that it’s 'unlikely' does not mean anything to a lot of us anymore."

—@ktderoads

“That sometimes our gut means as much as their advice.”

—@ktderoads

“That we deserve complete consent. They must give us the risks and benefits and the ‘why.’”

—@ktderoads

"That we are not living just their specialty."

—@ktderoads

“Sometimes we don't want every intervention available. Family and ‘normalcy’ are more important.”

—@crankyalyson

“What it's like to live this life day in and day out.”

—@allisonhopes

"What we really do at home. I’ll never forget a fellow sitting me down with his concerns that we couldn't handle one of my boy’s care at home. We had been taking care of him to the best of our abilities. To add on he had a twin who had a trach vent and has a three-year-old brother. They have no clue what goes on behind the scenes."

—@oliver.wyatt.ataleoftoughtwins

"That even though I'm a registered nurse, I'm so new to the world of raising a medically fragile child. It’s difficult to understand."

—@aj1195

"Unless specifically asked, stop bringing up life expectancy."

—@laveryke

"I wish my son's medical team knew how to save him."

—Evette L.

"If I push back, it’s not because I don’t trust you. I might just need clarification, or empathy, or a more thorough explanation."

—Ali M.

"I wish they could understand that while they may be medical experts. I am the expert on my child. So, when I say that these are the symptoms my child is having, then those are the symptoms they are having. I'm not imagining nor am I confused."

—@Allichan, Celina H.

"I would like them to understand that I'm not just googling and jumping to conclusions. I would like them to understand that I'm an intelligent, educated, and a capable woman. When I have suggestions or request, they aren't something that I found on the internet."

 

—Lisa K.

"I want them to know that my daughter is not a piece of furniture. She is a beautiful person with real feelings, emotions, and personality. So, look closely and you'll see. Speak to her even though she can't speak back. She is precious and loved."

—Christine R.

"For them to have an diagnosis, a answer."

—@nalleli_14

"Sometimes as super rare caregivers, we really do know what’s best."

—@boob00bear

"That when we come to the hospital for something, we didn't make that decision lightly."

—@boob00bear

"That sometimes I want to cry when our 26th specialist says, ‘I've never heard of this before.’”

—@boob00bear

“That we all know who and talk about the providers in the team who are out of touch.”

—@heckler.sarah

“How much we truly love them. They've seen us as our most broken selves. We were loved and taught everything we needed to do to keep going for our girl.”

—@_alexandriaj91

“’Wait and see’ makes me think you don't actually know what you're talking about.”

—@lorenecm

"They waste my time much more than I waste theirs's. Take my call and trust my concerns!”

—@lorenecm

"The most useful part of the appointment is usually the last five minutes."

—@lorenecm

"I wish all specialists would talk to each other for complex outpatients."

—@chandra_adelle

"I always choose teams that can think outside the box. I wish all teams did this.”

—@ellenmhowe_chargingon

"Sometimes more compassion is needed. I get that this is their job, but this is our life."

—@cathsheahoff

"Just because I’ve done my research doesn’t mean I’m an overbearing 'google doctor.'"

— @susiq1492