When you are raising a child with a special health condition, their medical professionals become family. There is no greater reassurance than knowing your child is known by his name by people who love him like their own. I was thrown into the world of healthcare via my son Connor in 2006. I had the privilege of not knowing the ins and outs of hospitals and doctors offices on a monthly basis so you can imagine how my world was rocked to the core when my baby boy was diagnosed with life altering conditions at six weeks old.
Over the past fifteen years Connor has been admitted to Children’s Hospital in New Orleans no less than fifty times with hundreds of doctors appointments, blood work, procedures, and more. This lived experience has taught my family a variety of things that have molded us into who we are today. It has been a bumpy road full of NOLA potholes with broken red lights and missing stop signs, but the one constant through it all has been the nurses – our angels in scrubs and comfy shoes. The pediatric nurses that walk the halls of hospitals, doctor’s offices, schools, and visit homes are the faces that impact families like mine the most. We may forget their names, but we never forget how they made us feel in our time of need.
Time and time again, the nurses who have treated my son have displayed a protective fearlessness over him as if they are momma bears. They are the first ones to speak up when something doesn’t seem right. They are the first ones to question an order that seems unnecessary. They are the first ones to step in and be the voice for an overwhelmed, tired parent. They are the backbone of hospitals and healthcare. They are the foot soldiers fighting for us all.
“Where the needs of the world and your talents cross, there lies your vocation.” – Aristotle
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I watched these professionals quickly and quietly enter our room, get to work while greeting us with a smile, and it slowly made an imprint on my heart. I watched their interactions with the doctors, residents, therapists, phlebotomists, everyone who entered our room and it was through their modeling of advocate behavior – though unknowingly to them – that I learned how to be an effective voice for my child. These nurses’ smiles could turn into a snarl within moments of an injustice occurring that could cause undue consequences on their patients. Their questions made me come up with questions of my own. Watching these nurses as I sat by Connor’s bedside taught me so many things I’ve been able to utilize in advocating for my son not only in the hospital, but in school, with insurance companies, and even in the state legislature.
This week is Pediatric Nurses Week. It celebrates and calls attention to the critical work that pediatric nurses provide to improve healthcare delivery. It is a time to reflect on the contributions pediatric nurses make to patients, families, and communities.
In honor of Pediatric Nurses Week, here are 10 things I’ve learned from pediatric nurses on advocacy:
You are the expert on your child. Use that expertise in the hospital, school, wherever. You are the one whose entire attention is directed at him 24/7. No one knows your child like you do.
Make personal connections. Get to know the professionals that interact with you and your child. They should know your and your child’s name and story. Relationships are important.
Be present & Be vocal. Your presence is needed where discussions are had on your child. You need to hear what the professionals have to say so you can be informed and prepared. Be there and use your voice.
Write everything down. Documentation is crucial not only for legal or advocacy purposes, but also our strained memory. Write down notes, plans, suggestions, tips, etc – even if it’s on your hand, arm, or a hospital bed sheet.
Question everything. Questioning professionals is not rude, it’s an important part of understanding a world that we just joined. Asking the why, how, what, and why also ensures everyone is on the same page.
Being organized is important. Organization makes your life much easier and saves time (and steps). As a parent you will get bogged down in paperwork, supplies, and stuff in a matter of weeks. A home for everything, and everything in it’s home.
Knowledge is power. If you don’t understand something, ask a professional or research it. Doing your homework before an event/procedure/meeting/etc gives you the ammo you need to be the advocate your child needs you to be. You can never be too informed.
Speak Up. Your child is YOUR CHILD. No one on this earth loves him more than you and it’s your job to protect them. If you were shy before now is the time to find your voice. (Insurance companies may or may not be a good starting point to find that voice. Just saying.) Remember, nothing about me without me.
Attitude of gratitude. In the midst of a crisis our momma bear claws come out and that can make our situations harder sometimes. Learning you can catch more flies with honey early on is a game changer.
Here’s to the nurses that meet us parents where we are and give us compassion. To the nurses that include us in their conversations with doctors and model advocacy. To the nurses that connect us to resources and give us hope. To the nurses that ask us questions and allow us to grow. To the nurses that see our tired eyes and give us reassurance. To the nurses that stand beside us for bad news and hug us when the tears start to fall. To the nurses that love our children and teach parents how to be a great caregiver. To the nurses that go the extra mile for their patients and their families.
To all the nurses, thank you. Thank you for choosing this vocation, but mostly thank you for the love you give to those you treat. Your impact is endless.
“The nurse is temporarily the consciousness of the unconscious, the love of life of the suicidal, the leg of the amputee, the eyes of the newly blind, a means of locomotion for the newborn , knowledge and confidence for the young mother, a voice for those too weak to speak, and so on.”–Virginia Henderson, RN
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.my blessed little nest. 