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The 3 Words I Want Every Single Hospital Employee to Hear
A Letter to My Daughter’s Healthcare Team:
To you, Addie is a patient. But she is my baby. You don’t know this, but she has spent the last nine years enduring medical procedures, appointments and hospitalizations. When she sees you, all of those memories come with her. Your white coat is a symbol of blood draws, x-rays, pokes and prods. Please don’t take it personally if she gives you the stink-eye. I’m sure without the white coat, she’d love you.
When I ask question after question about a medication or procedure, it is not because I’m a pain-in-the-butt mom, it is because I’m exhausted and if I don’t write everything down, in 10 minutes that knowledge will have slipped into the black hole of pharmaceutical names, insurance info and commercial jingles from the 1980s. Please be patient with me. I don’t want to mess this up. A little life is at stake.
The reason Addie’s screaming and holding onto me before her blood draw is not because she’s a bratty 9-year-old who can’t handle a little pain.It’s because during the last draw, the nurse couldn’t find the vein and after both arms, three veins and being held down by aides, this is what she remembers as you come at her with a needle.You are just an accumulation. Please don’t take it personally.Your eye rolls and sighs, I understand. I do. I would feel the same way if I didn’t live it, if this were just another screaming kid of hundreds. Please try to put yourself in her little shoes. They are size 4 and a half. It may be a tight squeeze.
Dear Pediatrician on-call,
When I phone on a Friday at 5:01 p.m. it is not because I waited until the last minute; it is because my kiddo’s fever only spikes at closing time. She was born on a full moon when all hospital beds were full and almost delivered in the hallway. It’s just how we roll. I apologize. I would have loved the birthing suite and some pain meds.
When we call in a prescription for a medication we’ve already run out of, it is not because I want to create an emergency for you. It is because this medication is one of 20, from four different specialized pharmacies and sometimes I cannot keep it all together. And if I am crabby and panicked, it is not because I’m unappreciative of your hard work; it is because I am mad at myself for not being the mom I would like to be. Please forgive me.
Dear Pulmonologist, Endocrinologist and Respiratory Therapist,
When we receive bad news from a blood test or culture, I realize you have already given this news to 10 other people before 9 a.m. But it means our life changes from this point on. We have come this far, learned this much and you are giving us new information. You are saying, here is another chapter in this lengthy book. Please study, memorize and perfect this. Sometimes it feels like too much. Yes they’re only lab results, but to us, they’re life results.
If I could tell you one thing, to newbies and old hats and everyone in between, it is this:
Please just listen.Y
ou have the answers, but sometimes they are given before you know the question.
Just listen. I
am not challenging you. But I know my kid. We live this life, we wake up to it and go to bed with it. This disease is like another child in our family. It’s ours. We birthed it, we feed it, we care for it.I have not endured 12 years of medical school and residencies, but I have paid attention to every breath and heartbeat, to each slight fluctuation—knowing like a sixth sense that warm breeze before the storm. Like memorizing the rhythm of a song, you don’t need to be a composer to know when the melody is off-key.
After a year of chronic stomach pain, and no relief, I called you for the hundredth time. A Gastroenterologist new to the hospital returned my call. I was exhausted from medications not helping and begged for answers. Her response left me speechless.“You know your daughter. Tell me what to do.”
At first, I was terrified. What do you mean, tell you what to do? Aren’t you the doctor? I don’t want this power. Here, take it back!This doctor explained she was also a mother. She asked me what I felt in my gut. I ignored my impulse to make a pun (GI, gut, ha!), mustered up my courage and said, “I want her admitted today. And I don’t want to go home until she’s better.”
And that’s what we did.
Two days letter, she was better. And we went home.
This doctor not only listened, but she trusted me. She knew about the course not taught in med school or learned in residency. It is the quiet pause of a song, a flutter of a heartbeat, a mother’s intuition. Just listen and you can hear it.
Let’s listen together.
Parliamentary Working Group on Disability established
Training for PAs in Velika Plana
Round table in Smederevo
Tomorrow Is Too Long to Wait for Inclusion
International Day of PWDs
29 Ways to Describe a Disability to Someone Who Doesn’t Understand It
CIL Serbia realised another PA training
Sectoral Round tables
Why Using a Wheelchair Is the Opposite of Giving Up
The 3 Words I Want Every Single Hospital Employee to Hear
8 ‘Helpful’ Things That Don’t Really Help People With Disabilities
When a Little Girl Felt Sorry for My Son
PA training in Vrsac
7 Microaggressions Disabled Folks Face at the Doctor’s Office—and 6 Ways to Fix Them
The 12 Pillars of Independent Living
The social model of disability
Dear Society, Why Don’t You See Different as Beautiful?
Myths and Facts About People with Disabilities
International Day of Persons with Disabilities, 3 December 2014
EU Delegation in Serbia supported the increasing of political participation of persons with disabilities and the impact on policy development in Serbia
Accredited Program of Education for Personal Assistants working in five cities in Serbia
CIL Serbia held its Presidency and the Assembly meetings
Jointly forces for economic and political empowerment of persons with disability
With joint forces of political and economic empowerment of persons with disabilities
"Public sector for all citizens"