6 Pieces of Advice From My Decades Spent in Hospital Waiting Rooms

It’s been nearly two decades that we’ve been visiting Seattle Children’s Hospital — on a weekly, monthly or quarterly basis, depending on how healthy our daughter was at the time; hundreds of visits, especially when you include blood draws, X-rays, lung function tests and the like. We’ve seen tons of changes, but for the most part things have become fairly routine: We find a place to park in the always-crowded parking garage, get our daughter a mask (to protect her from the germs inevitable when you are in rooms full of children), check in at the entrance to get photo ID badges, go to the clinics check-in area and pull a number from the roll, wait to check in, go through the whole sterilize-the-pager-and-clipboard routine (which the people working the check-in desks often forget), fill out the paperwork and proceed to sit and wait to be called to the clinic’s rooms… often after more than a half hour spent in the waiting room.

Still, this whole procedure has become routine in the hundreds of visits we’ve made to that waiting room.

Even our daughter is rather blasé about the whole thing. She’s not supposed to touch any of the things in the waiting room (contamination risks are often too high for kids with cystic fibrosis) and, while it does occasionally happen, we rarely run into anyone we know from our years living in the small CF community, since they stagger CF kiddos’ appointments to avoid contact between them (again, a cross-contamination risk).

While doing our waiting one day, a couple a few feet along the stream of chairs caught my attention. They were an older couple, and they kept glancing nervously from my daughter and her masked face to their tiny infant in her stroller. The mama bear in me roared to life, and I was about to point out to them that the mask wasn’t to protect others from her but to protect my child from the other children… Then their nervous glances came together in my mind with the overly-bright smiles they kept throwing at each other and their child.

I was sure this was their first visit.

The clinics waiting room is a big circular area in which all of the people visiting a clinic co-mingle. Unlike the other areas of the hospital, when you were in a clinic area, it was likely you were looking ahead at future visits as well. Maybe only a few visits if you’re dealing with something like chronic ear infections — or maybe a lifetime of visits when your child has a chronic, fatal disease like our daughter does. The first visit can be the hardest on your nerves, as you don’t know what to expect. There is no routine. There’s only fear.

I looked around the waiting room with new eyes, seeing it as if it were the first time instead of the 100th. For nervous, first-time parents, afraid for the future their child may be facing, it must be something like when Luke Skywalker walks into that alien bar with all the strange creatures doing incomprehensible things, speaking in tongues never before heard. There were a number of kids running about with cochlear implants peaking out from their hair (devices that allow some kids to hear who might otherwise be deaf), a girl who looked to be about 12 was sitting in a large stroller squealing in excitement over the volunteer clown’s magic tricks, a teenager with underdeveloped legs was spinning around the circle of check-in desks in a florescent green wheelchair with multi-colored lights flashing from the front wheels. All the while, parents chatted with each other and their children in the strange language of lab tests, medical procedures and doctor-ese, in which one becomes fluent as the parent of a child with special needs, with different dialects depending on the disorder or disease. We even one time ran into a set of conjoined twins at the elevator. All in all, this can be quite an overwhelming experience for parents newly indoctrinated into “Special Land,” as a friend of mine calls it.

I’d like to say I walked over to those parents and said something profound that comforted them and gave them the strength to put their fears aside. But really, in all honesty, what could I have said to make them understand? How could I tell them that things they never could have imagined would one day become so routine that they wouldn’t even notice them? Who would ever believe me during those first strange hours in this new life? I still remember from my early days that much of what was said to me disappeared into a haze which took months to come out of — and from which I remember very little of the advice that was given to us. So I just smiled as reassuringly as I could, hugged my daughter and waited our turn.

What I should have said, though, are the things I wish someone had told me:

1. You can do this — you really can. It may all seem foreign and scary now, but you’ll become an expert in no time.

2. Remember that the doctors may be the experts on your child’s disease, but you are the expert on your child. Give yourself permission to speak up (and keep speaking up) if they brush something off as normal but it is not normal for your child.

3. Learn as much as you can stand. Ask your doctor to give you information to take home, search reliable sources like PubMed or Google Scholar to find new treatments and results of medical studies — look up the words you don’t understand until you learn this new, strange medical language. But also give yourself a break when the information overload becomes too much.

4. A little denial can be a good thing. I called it “informed denial.” I knew what I needed to know about my daughter’s condition, but I had to remind myself to not get overwhelmed by the things that could happen in the future. Try not to let worry carry you down roads you may never have to travel.

5. Find an outlet for your new world’s experience: share your story, volunteer at the hospital, fundraise in support of an organization for your child’s condition. Whatever it looks like for you, it can really help to give back and connect with other people who also parent children with special needs.

6. And most importantly, know that you are not alone. You are now a part of an amazing, supportive world of parents who will support and encourage you when you struggle and will astound you with their courage and strength, reminding you that you also have the courage and strength to make it through.

Image via Thinkstock.

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