Hey, Nurses, Happy Special Needs Caregivers Day

The evolution of National Nurses Week (May 6, 2014 – May 12, 2014) and National Nurses Day, which will honor nurses this year on Tuesday, May 6, 2014, has been a well-deserved reward for the hard work and dedication of nurses in all areas of the profession. Doctors don’t need any recognition like this because it comes as a matter of course to them. I’m sure they’d argue it doesn’t, but let’s not focus on them. We can just hand them some tiny violins and be on our way. Back to work, that is. Because nurses work really hard. Especially pediatric home care nurses, who diligently care for the sickest of children, not in hospitals, but at home and at school. Wherever their lives take them.

Pediatric home care nurses are the heroes who empower families to live as normal lives as possible, on their own terms and surrounded by familiarity, consistency, and caring. On this Nurses Day, as we celebrate the compassionate professionals who go the extra mile each day for their patients and families, it’s important to remember this, though: there’s no Special Needs Caregivers Day.

As a registered nurse for the past twenty years, I am delighted by the prospect of National Nurses Week. I embrace the hard won recognition of my profession, and do my best to foster a respect for it within the community. Nurses are smart, hard-working, and crucial to healthcare. But I’ve been on the other side of the coin, too. I have been the exhausted, frazzled, and frightened mother of a child with multiple medical needs. I’ve had to open the door of my house to strangers – nurses – and entrust my child to their care. And that ain’t easy.

From this perspective, as a nurse and a mom, I can’t offer you tote bags with National Nurses Week logos, or fancy multi-colored pens, or even a cheap lanyard for your ID card. I can offer you only what I’ve learned from years in the trenches, caring for my child shoulder to shoulder with nurses – these three essentials I always wished they knew:

1. We Know Our Hair’s a Mess. We Know This. And We Know Our Kid’s Hair is a Mess, Too.

Your patients’ houses are often a cradle of chaos. They are disheveled. Believe me, they’re embarrassed about it. Most of them, at least. The last thing they want to do is let you into their homes in such a state of disarray. But they know the most important thing is that their children are cared for. So they let you in, hoping you will overlook the mess, the disorder, the grime on the kitchen floor. It’s tough to do it all, and some things necessarily have to go to the back burner. If you walk into your patient’s home and it smells like dirty diapers, or you have to step over piles of laundry, please try to at least appear understanding. I bet you have piles of laundry in your homes, too.

2. We Are Your Equals.

We know you are professionals, and we appreciate that. We get it. We want your input. We want your advice. We also want you to respect us. As adults. (Sometimes you’re the only grown-ups we see!) As parents. As experts in the care of our children. As warriors in long, difficult battles to ensure only the best for our babies. Special needs parenting is fraught with obstacles. We are parents first, yes, but we also have a slew of other roles: insurance advocates, engineers, teachers, therapists, comedians, and – of course – nurses. Not nurses like you, but nurses to our children. Nurses who jump out of bed half-asleep to suction tracheostomies and readjust oxygen concentrators. We know what we’re doing – and if we don’t, teach us. Just don’t talk down to us.

3. Be Honest. We Can Take It.

Parents only want the best for their children. They want them to thrive and grow. To learn and achieve goals. Special needs parents want all these things for their children, too. We want them to reach their potential. From nurses – and all healthcare professionals, really – we want honesty. Don’t patronize us with clichés, vague opinions, and – worst of all – outright falsehoods (however well-intended) to placate our worst fears. Just tell us when you don’t know things. If we keep asking you questions like “Will my child ever walk?”, “Will my child ever talk?”, or “Will my child die?”, just be sincere in your answers. Most of the time, we already know those answers. We’re only looking for some support so that we can continue doing our job as parents. It’s not easy facing all that uncertainty. Just be candid without being cruel. Be hopeful without being unrealistic. Give it to us straight. We can take it. We have to. And our children will be better off for it.

Now go and celebrate being nurses! Just remember, we’re working with you.