(I came across this piece this afternoon, written when Wendy was 10 and Penny was not yet 5. It’s funny, a few things have changed, but the core message of how we approach life has not Enjoy.)
What is the cost of living vibrantly? Living the life you want to live, with travel, adventure, love, laughter, good food, gratitude? We all know the draw to living vibrantly: it’s living with your whole heart. Who doesn’t want that? But what are the costs?
I have a chronically ill child, Wendy. She’s immune suppressed, thanks to a kidney transplant, and she has a constellation of added health complications like diabetes, abdominal surgeries, histories of high blood pressure and heart failure. You wouldn’t know it to look at her. She’s the fastest kid in her school, running the mile in under seven minutes. Last week she placed third in the back stroke at her swim meet. She’s run in races and triathlons. She also plays two instruments, the violin and the trumpet. And above all of that, she’s a funny, sweet, sensitive kid, a good big sister to our younger daughter Penny, a good daughter to us. She tries very hard to be honest and fair, which is all her father and I ask of her. She is the definition of vibrant, she lights up a room when she walks into it. People gravitate to her energy and her easy smile. All this in a ten year old body.
Many years ago, when we were initially faced with her diagnosis and health complexities, Michael and I decided that we would do everything we could to make Wendy’s life as normal as possible. She would go to public school instead being homeschooled. She would play sports if she wanted to. Michael and I know that we have to be present at all of these activities in case of exhaustion, low blood sugar, or if she’s just out of sorts. Sometimes it’s a little grating on the nerves, it is often exhausting, but I always maintain that you don’t know what you signed up for when you agreed to be a parent and all of these difficult, time consuming things are a part of the package. That’s it, the end.
We know that with every decision, we make a calculated risk. We no longer eat at buffets or have “public food”, food that has been sitting around for fear of contamination or food borne bacteria. We are fastidious about hand washing and not sharing food or drinks. We love to travel, but when we do, we have Wendy wear a mask on the plane and bring our own pillowcases for the hotel room. We appreciate when friends tell us they are sick or have sick kids, and we avoid them, if you’ll excuse the pun, like the Plague. These are our only defenses against unforeseen illness. We know that they are not perfect and they don’t always work. We don’t keep Wendy in a bubble, nor do we want to. We try really hard not to stifle her exuberance. So, sometimes she gets sick, a side effect of living a vibrant life. Looking back we can often see the warning signs, but might not be paying too much attention: blood sugars going awry, a cough, some diarrhea or maybe an upset stomach, sometimes a headache. Do these seem vague? Could they just be a tough day, a miscalculation? At what point do the small signs lead to a big problem? Or maybe they just fade away, like most kids on most days. A good night sleep and a band aid on the boo boo and send her on her way.
Sometimes, you can see illness coming, seeping through Wendy’s immune system, and as a parent, you can’t help but worry. Here is a good example. We went to Colorado over Christmas. We normally try to avoid winter travel because of all of the pervasive illness, but we had not been to Colorado during the winter as a family in over seven years, and skiing is Michael’s favorite thing to do, so we decided we would give it a try, knowing that every day of skiing she would be with us, and not with a ski school, knowing that there would be some down days. It’s all part of the territory. We mapped out where the nearest hospitals were that could treat Wendy, even including the possibility that we would be snowed in and the passes would close. We had a Plan A and a Plan B. We had her medical letter packed along with all of her medication and additional supplies. She wore a mask. We had the pillowcases. We crossed our fingers and held our breaths and got on the plane.
The day we arrived, my father in law, with whom we were going to stay, came down with the flu and pneumonia. He had been travelling to South East Asia and ended up with a nasty combination of illnesses, even though he had gotten the flu shot. Not only did he feel awful physically, but it nearly broke his heart that we had to change our plans. We were to have zero contact with him while he was sick. Naturally, we had to change our arrangements as to where we were going to sleep for ten days, not an easy feat at a ski resort over Christmas break. We ended up staying in three different places, and only saw my father in law on the last two days when he had finished his Tamiflu and antibiotics and seemed to be doing better. But we had also been on planes and in airports, at restaurants and ski resorts, with daycares and group lessons and in tiny little gondola cars with people from around the world. Hello, germs, let me introduce you to my immune suppressed kid.
A few days after returning home, my four year old, Penny, developed a cough. Not a big deal, kids do that, they get snotty and coughy and life goes on. Well, two nights after that, Penny developed a fever of 101.7, which is significant but not alarming, and we just kept her from school, tried to keep the girls apart as much as possible, and went on. By Friday night, Penny had a killer cough, one that you know just doesn’t sound right, so she went to the doctor and it turned out she had pneumonia, but not the flu. She was put on antibiotics, and again we tried to keep the girls apart. Wendy had even stopped using the same bathroom upstairs, “just in case” Penny had forgotten to wash her hands in the middle of the night.
That same week, Saturday comes and Wendy has a swim meet. Michael goes with her because I’m staying home with the younger one. He can’t seem to control Wendy’s sugars and the site where her insulin pump is attached is painful. When they get home, we take off the pod (it’s a kind of insulin pump) and with it comes a glob of puss. Uh oh. I can remember when we put it on. Wendy didn’t want to shower before the application like we always do, because she showered that morning, but we told her to quickly do a body washing shower and then we’d apply the pod. Maybe she didn’t wash so well this time. We applied antibiotic ointment, put a bandaid on it, put on another pod and sent her to her indoor soccer game. Later that night, we squeezed it again, same result, same solution. But she’s had staph infection before, it looks like a pimple, but it wreaks havoc on her body. Look up pictures of staph on google and you’ll have nightmares for a week.
Monday morning Wendy woke up with an upset stomach and cough. Her sister was staying home already, so I suggested to Wendy to go back upstairs and try to get some sleep. Usually, Wendy can never get back to sleep, she hasn’t been a napper since 18 months and she has a hard time sleeping at night. She usually goes to bed at her appointed time and then reads for another hour or two, and then wakes up with the sun. Monday morning, however, I went up to check on her and she was sound asleep. I checked but she had no fever. When she woke up, she has had a few bouts of diarrhea. And she still had an upset stomach and a cough. She was pale and less than her energetic self. She was not normal, and yet, she was not particularly sick either.
Maybe it’s staph. Maybe it’s pneumonia. Or both. Or neither. Maybe, but not likely, it’s something else entirely different.
It’s the strangest feeling in the world: waiting for your child to get sick enough to go to the hospital, but there I was. Waiting for something more, or something less. More means something we can go on, call the doctors, get blood work, think about going to the hospital and getting admitted. Less is that she’s well enough to go back to school the next day. We want less, but we can’t control more. What does one do on a day like that day? I found myself making lots of food: two quiches in the oven, two corned beefs in the crockpot. I checked on my toiletry bag to make sure it had everything that was necessary. I had not gone so far as to pack a bag for the hospital, but I had organized in my mind what I would take if we needed to go. It’s an odd place to be in my mind. I actively avoided making any plans for later in the week “just in case” and I warned work. Mostly, I just worried and watched my two girls, keeping track of who ate their lunch or who coughed which time. I spent a lot of mental energy worrying, and tried to put a lot of things in perspective. It’s just another small illness. We’re a team, we are going to get through this together.
But it’s hard, this waiting, for something, for nothing, for an answer. And I worry about what Wendy’s anxiety might be, she who may be going through the pokes and prods, the blood draws and the chest X rays, the uncomfortable hospital beds and the bad hospital foods. And then part of me is mad, really angry for thinking about all of that, for not crossing that bridge when we get to it. The truth is, though, that we’ve crossed that bridge so many times that it’s become a rather well worn path and it’s an easy place to go to in my mind.
In twenty four hours we would know.
The middle of the night she spiked a fever, 102.4, and we knew that we were going into the hospital. Our hospital home is Massachusetts General Hospital. I remember when we first were sent there from Dartmouth in Hanover, New Hampshire, when the attending told me that was where we were getting transferred, I asked if it was any good, and he laughed. It’s only one of the best in the world he told me. We have been going there now for almost seven years, and yet it still surprises me when a doctor or nurse recognizes us. After all, when you walk into an emergency room that services thousands of patients a year, you don’t expect the triage nurse to say, “Oh, hi, the kidney transplant patient, right?” I don’t expect the Pediatric Attending of the Emergency Department to say, “Hello, Darcy. My name is _______. I treated your daughter years ago. I’m sorry you are back but it is nice to see you.”
After deliberation between the doctors and tests that need to be done, a basic plan is set into place, and that usually includes hospitalization for observation. No one is going to send an immune suppressed kid home with a 102 fever. No one. So we settled in for the inevitable. The wait. The transport. The room on the pediatric floor. We always know we are staying when she gets and IV port. That’s the ticket to upstairs. It’s the first to get put in and the last to go before you’re released. It’s like a passkey, you don’t get in without one.
We have been in dozens of hospital rooms, and yet they are all the same. The colors are soft, never overbearing, never what someone might call offensive in any way. The floors are always clean looking. The cabinets are made of some kind of laminate; they could never be considered a masterpiece of natural wood. The tables and bed stands roll for ease of movement.
We fall into a regular pattern for the day. Doctors come first thing in the morning to examine Wendy. They poke and prod and press on her belly, they ask her if she is in pain, they listen to her heart and lungs, they look at the monitors. Then they leave. Nurses come in the first part of the day for weighing and measuring, for giving daily medications. Then breakfast, some sort of protein like a hard boiled egg, sometimes a strip or two of bacon. Wendy always orders a sugar cereal that she would never in a million years get at home, and I let her because I think to myself how many pleasures will she get in this day, how many small victories?
We see staff members, the woman who brings the breakfast, the man who cleans the room, the Child Life Specialist asking what Wendy might like to play with that day. Sometimes there’s a special event like music therapy or a visiting sports team or therapy dog, and I find that I’m grateful for the distraction, grateful to give something for Wendy to concentrate on other than feeling awful and confined.
Then there are rounds, where a whole swarm of doctors come by and report on Wendy. If she is there for a long time, they give the whole history, and for those who have not heard the story, I watch to see them mentally calculating all of the complications and things that can go wrong. There is something disarming about watching young, smart doctors think through a problem. Sometimes when a young resident is reporting and doesn’t know the answer, they have to refer to their notes or the computer that is brought along on a rolling stand. If the attending physician is upset with that young doctor and they feel it is something he or she should know off the top of their head (and if the attending knows me and my head for numbers) they will say to the young resident, “Ask the mom, she knows the answer,” and I recite Wendy’s creatinine, or her BUN, or some other number from her drawn blood. I can tell you all of Wendy’s medications in doses and milligrams, I can tell you her insulin to carb ratio and how much fluid she is required to drink in a day. I don’t mind being used as an example of a good mom, but I do feel badly for the resident who is slightly embarrassed. A plan is then made for the day, I push for definitive times and actions, and sometimes get answers. They know that I will keep asking until the definitive answers are provided and they respect that, many of them thinking that it is what they would do if in my place.
A hospital room is more about what it lacks than what it has. It lacks any sort of comfort or human warmth. It lacks background music. It lacks pictures on the walls, or pictures in frames. It lacks a comfortable down pillow or a duvet cover. It lacks plants or any other living thing. It often lacks happiness, it often lacks laughter, and it often lacks children, at least healthy children, at least children who are healthy enough to joke and dance and sing. There are very few hugs because of all the tubes and wires that are hooked into Wendy. There are a lot of sighs and shifting and worrying.
It is not comfortable. It is not meant to be. You are never fooled into thinking that you are home.
The most difficult times in a hospital are in the afternoon, when no one comes to visit, when doctors are writing their notes and nurses are taking their lunch breaks, and all I can do is sit next to Wendy and watch TV with her, or watch her fitfully and uncomfortably sleep while I look out at the world. If we are lucky, we have a room on the river, which is beautiful, especially at sunset. I try to think of the good things like watching the Duck Boats in the water, seeing the runners along the paths, sometimes seeing the rowing crews and their darting precision. I try very hard not to think about what I am missing, what Wendy is missing, in that outside world. Sometimes, though, the thoughts creep in. I try to keep these thoughts at bay by making future plans. This last time we were in the hospital we made a list of all the people we wanted to come to our party to celebrate the 5th anniversary of Wendy’s kidney transplant, what we called her “Kidneyversary.” It helped us keep perspective.
Then it’s late afternoon and shifts change. A new nurse arrives and does vitals. Doctors visit before they go home to families and dinners and soccer games. A plan is made for the evening and if we are lucky, we get a forecast for the next day. Then maybe I play a game with Wendy or take a trip to the toy room. Sometimes a volunteer will come in and I can take a break, get a cup of coffee, walk a lap around the hospital complex, make a few calls to my parents and best friends to give them an update.
It’s hard to know how many days we will be in the hospital, but I know that the doctors try to get us out as quickly as possible. They monitor everything. I know Wendy is getting better when she starts to complain that the hospital is boring, that their water tastes funny, that the food is gross. She gets restless. We begin to lobby for release, and it’s more like a negotiation with the doctors. IF Wendy’s labs look good and nothing grows, IF she can eat and drink normally, IF her fever starts to trend down, IF she can take oral instead of IV antibiotics. We set goals, we make Wendy a part of them. We push and the doctors push back. This is part of the game we all play.
Finally, the doctors decide to discharge us. Then we wait. For the medications. The coordination. The final orders and the follow up appointments. The last thing to go is the IV port. We know when that is out of her arm that we are really going home.
When we are released, we turn the music up loudly in the car on the way home. Once we are finally home, we all strip down out of our clothes and wash everything we brought to the hospital whether we wore it or not. I make spaghetti and meatballs and Wendy requires a salad every day for a week with balsamic vinaigrette and kalamata olives. She takes a long, hot soapy bath and we scrub off the adhesive from the bandages. We snuggle down in to her bed with her stuffed animals and read stories. We all go to bed early and sleep in the next day.
After all of these years in the hospital with Wendy, I find that I continue to be terrified with every unexpected trip, not knowing what brought us in this time, what micro-organism or virus or part of her body is malfunctioning. The part that is easier is that we know a whole cadre of doctors and nurses who know and like us, who stay for a while to talk, who hug us when we leave. We know the names of their children and where they are going on vacation. All of these things add up to the knowledge that they are going to do the best they can for Wendy, they know her well, know her history, know us as her parents. I am confident in their abilities, I trust them and that can go a long way toward comfort and one less thing to worry about.
So what is the cost of living vibrantly? For Wendy, it’s the same cost. She will go into the hospital when she gets sick. But she would anyway, even if we kept her in a bubble. We have no way of knowing if she would go into the hospital more times or fewer times if we kept her sheltered, but that’s not the point. The difference is the outlook. We are helping her live her best, most authentic, most exciting life. As the parent of a chronically ill child, worry is a part of everyday life, and trips to the hospital are inevitable. Being prepared, mentally physically, and emotionally is all I can do. But we choose not to let our fears make our decisions for us. The rest is up to chance and that is never easy to accept. I wish that I could control it all, but it’s not possible. So instead we live the way we want to live, and we teach Wendy to do the same. Perhaps that is freedom.
Brave Fragile Warriors: Caring for Kids with Chronic Illness 