This is a blog about Kids with Chronic Illness and the parents who care for them. Today, though I’m going to talk about the mothers,both in history, and my understanding of being a mom. For…
Source: Mothers on the March
Brave Fragile Warriors: Caring for Kids with Chronic Illness
Caring for Kids with Chronic Illness
This is a blog about Kids with Chronic Illness and the parents who care for them. Today, though I’m going to talk about the mothers,both in history, and my understanding of being a mom. For…
Source: Mothers on the March
This is a blog about Kids with Chronic Illness and the parents who care for them. Today, though I’m going to talk about the mothers,both in history, and my understanding of being a mom.
For those of you who don’t know, I teach at a small college, Mount Ida, in Newton, MA. I teach history. I think I’m the luckiest person alive to get the opportunity to interact with students on a daily basis and help them to become better readers, critical thinkers, and better citizens. I teach a whole range of classes, different topics, different genres, pretty much anything they ask me to teach I will do it, because it gives me an opportunity to look at a topic in a whole new way, and help guide my students through the tricky parts of history.
The other day, in my American History 102 class, from Reconstruction to the present, we were talking about how Jim Crow Laws created the Great Migration. Jim Crow laws were laws designed to oppress former slaves and their descendants in the south after the Civil War. They included separate schools, separate doors, and restricting the use of public facilities like bathrooms, pools and water fountains. These were the laws that the Civil Rights Acts of 1964 and 1968 sought to abolish, and what Brown v. Board of Education reversed. It took a hundred years from the end of the Civil War to the Civil Rights Acts of the 1960s.
How did families react to the Jim Crow Laws? Well, if they had the means, if they had the ambition, if they had the guts, they left. They moved to northern cities, got factory jobs, and set up a whole new life in a northern city. Thousands of black families travelled from the rural south to the Urban centers of the North in the early 1900s. They used their feet to voice their unhappiness, to make a better life for themselves and their families.
Women played a central role in this movement, because they wanted a better life for their kids. When you stop to think about it, when mothers get involved, it’s almost uniformly because they are thinking of their children. This is true for the Great Migration, where mothers travelled with their kids, or sent their kids on ahead to uncles, aunts, or grandparents, and then followed behind.
It’s also true for the bread riots across the centuries. When mothers see their kids hungry or in pain, they go to war. Literally. That maternal instinct kicks in and they are fierce. They fight for their kids. Here is an article about the Richmond Bread Riots from the Civil War, but it’s not an isolated case. You can google mothers and bread riots, and you can find any number of examples.
You will also hear tales of heroism about mothers who go to extra lengths when their child is sick, it is a hallmark of many moms. Moms will learn everything they can, they will be tenacious in their pressure on medical providers, or insurance companies. I have been inspired by many women in the work that I do as a volunteer at the hospital or in talking with other moms of kids with chronic illness. We became mothers not knowing what it is all going to entail, and it’s a lot more than we ever thought, but those are our kids and we are going to fight for them.
I recently went to the Women’s March on Washington, not to protest the presidency of Donald Trump, but because I was worried for my daughters and their future. I was worried that access for their healthcare would be limited (especially my daughter with chronic illness,) that they would have fewer choices for their reproductive rights, that they would face opposition if they chose to be journalists or would have their free speech curtailed, that the planet upon which they live would be more polluted.
I do not have a statistic, but I would say that many women at the March on Washington were mothers. Many of them brought their children. Why would so many women take the time, make the trip, knit the hats, write the signs, and march?
The answer is because they felt threatened, both for themselves and their children. And they were there to show the world that they weren’t going to go backward in time. Even before the March, I was asked why I was going, how I felt about the iconic Pussy Hats that were created, and my answer was that I was going for my daughters, and I wanted to be a part of history.
Speaking of history…..
Many people wonder what effect this will have, and I want to leave you with one more history story. One hundred years ago, after the election of Woodrow Wilson, on the day before his inauguration, Women Marched on Washington. The Suffragettes took to the streets with banners and signs.
This was 1913. It took seven more years for women to earn the right to vote in 1920. When women were “roughed up” by men along the parade route, and they asked police officers why they didn’t help, the police informed them that “If they had stayed home, this wouldn’t have been a problem.”
My point is, we don’t know yet what an effect this will have on policy, but we do know that with that many women, that we are there for our daughters, and for generations to come, that we are not backing down and we are not going away.
It’s a moment in history that future history teachers will be teaching, and my daughters and grand-daughters will be able to say that I was there.
And, I hope it will embolden them to be active in what they believe in too.
***If you were a woman who marched and would like to donate your Pussy Hat as a historical example of craftivism, the Fuller Craft Museum is looking for donations.
If you have a handmade knit or crocheted Pussyhat to donate, please contact Beth McLaughlin, Chief Curator, at firstname.lastname@example.org or 508.588.6000 for information.
Dear Mother of Wendy’s Kidney Donor.
Here we are. Year eight. Your son Dalton would be 22 if he still walked in this world. There isn’t a day that goes by that I don’t think of him, or of you. Not a day that goes by that I don’t include you in my prayers of gratitude and the hope that your heart is healing, though I know it will never be healed completely. How could it be?
Last year, when I started this blog, I told you about how I remember the day of the transplant, how we honor your son, how we honor you. This year, I thought maybe I’d tell you about all of the things that Wendy has been able to do because of Dalton’s kidney. So, if you ever read this, I hope you’ll know that your child continues to live on in my child and together they are doing amazing things.
Dalton’s kidney has been to eight foreign countries: The United Kingdom, France, Italy, Aruba, Canada, Mexico, The Cayman Islands, and The Bahamas. It has been to twenty states. His kidney has been snorkeling in Key West and skiing in Aspen. It has been at the top of the Eiffel Tower. It has been in the Coliseum. It has been to Big Ben and Parliament.
Your son’s kidney has allowed Wendy to do amazing things physically. She runs track, swims, plays soccer, and skis. She runs triathlons and wins them. She recently went to the American Transplant games where she competed in track and field and swimming events, and won nine medals. And she is going to the World Transplant Games this summer in Malaga Spain, where she will be competing for Team USA against other transplant patients from around the world.
Because of your child’s kidney, Wendy has used her experience to help other kids with a guide to the Emergency Department for Massachusetts General Hospital. She won a national award for it, through the Patients’ View Institute, and when she got up to thank the organization for her award, she thanked you for your generosity in a moment of darkness.
Because of your child’s kidney, Wendy has been able to meet her sister. Together they have grown to love and torment each other as only sisters can do.
She has had eight more birthdays, eight more Christmases, eight more Easters. She has had sleepovers, and lost teeth, scraped knees, and even gotten lice in those eight years. She lives a very robust life.
This was all because you made a decision to donate your son’s organs, and I can’t thank you enough.
I do not know what you look like. I do not know your job, or your religion. I do not know the color of your skin. I don’t know if you are a Democrat or Republican, or maybe neither. If you and I bumped into each other in a a crowd, I wouldn’t know it. And yet, you have made such an impact on my daughter’s life, on my life, on the life of my family. You have made an impact with all of those kids who come into the hospital and see that video. You have made an impact with countless people, not just because of Wendy, but because of the other people you donated organs to. I wish I could tell you in person how much I appreciate your decision, your sacrifice.
Someday, I imagine we will meet and I will be able to tell you. Until then, I will continue to think of you, every day.
Caring for the Caregiver, Part One.
No one ever says “I want to be the parent of a chronically ill kid.” No one. Ever. Yet, here we are, extra worry, extra stress, sometimes extra pounds due to poor eating choices. We move forward because we have to, there is no one else who is going to carry this burden for us, though we cherish our friends all the more deeply because they do lighten our loads in more ways than we thought possible.
So you take care of your sick kid, and you take care of your family, and you talk to doctors and pharmacists and insurance companies. You take care of your house, animals, house plants if you have them. But do you take care of yourself? Have you taken steps to make sure that you are as healthy as you can be?
I know the answer: probably not.
Because we always put ourselves last.
But that’s not the right thing to do, for a number of reasons. First of all, you are showing your kids that it’s ok to not take care of your body. In this world, that is not what we want to be showing our children, we want to show them that their bodies are super important and will carry them through the rest of their lives. When my daughters get their new teeth in, I say to them, “Take care of that tooth, it has to last ninety-five more years,” and they laugh at me, but I’m being serious. This is the only body they get. Yours is the only body you get. You have to show them that it’s sacred.
Next reason: you can’t be the best person you can be unless you take care of yourself. You will eventually collapse. It’s true, and you know it. We all want to think that it won’t happen to us, but we all know, secretly, that it will. But we can’t create more hours in the day, so what exactly do we do?
When I was a stressed out college student, I went to the counseling center, and the counselor there gave me a week’s calendar. It was broken up by hour. Twenty-four blocks for each day. Imagine. Then he had me block off eight hours for sleep a night and three hours for eating. That was eleven hours, and it still gave me thirteen. After then blocking out the time for each class, and time for studying for each class, I was amazed to see how much time I had left. I am a visual learner, so this helped me actually see my days.
This is a great excercise, I highly recommend doing it. (Make sure you give yourself the 8 hours of sleep and three hours to eat!)
Ok, now you can see your day. What are you going to do for you? Small steps yield big results. I would first recommend daily meditation.
You read that right: daily meditation.
Here’s what you need to do. Find a spot, the same spot every day. Sit down. Clear your mind, breathe, and just be. I know, I know, you think that this is impossible, that you have too many things running in your brain to shut down, and I can tell you, it takes practice, it takes discipline.
I sit at the side of my bed, on the floor cross legged. I concentrate on my breath, four counts in, four counts out. I ground myself with a mantra. Everyone’s mantra is different. It’s the thing that you can say that tells you that this is your moment. My mantra is two sentences. I say them, and then I let my thoughts go. And I sit in breathing stillness, for about ten minutes.
I didn’t start with ten minutes. I started with two. I would set a timer. And then I worked out to three, then four, up to ten. My girls know that this is an important time for me, because I’ve told them so. Actually I told them unless they’re bleeding or on fire not to interrupt me during my ten minutes.
Here’s what happens. My breathing slows. My mind sometimes thinks of things, but I let them go. My body tells me what is hurting, so I often do a few stretches after the meditation. (I actually call this my stretching and meditation time.) Sometimes my intuition tells me to check in on certain people during the day (It’s amazing what your subconscious picks up and you don’t realize it. Which kid is feeling left out, who is acting stressed, etc.) Then I end with thanking God (or the Universe if that’s what you prefer) for all of my blessings, sometimes naming them, sometimes not. Then I take a deep breath in, breathe out, stand up, and start my day.
So basically, I take deep breaths, I listen to my body and my intuition, and I express gratitude.
Not so hard, right?
I try to do this every day, but in reality I might miss once or twice a week. In those days I notice that I’m more scattered with my thoughts, I might get flustered or angry easier. But the good news is that the more you do it, the better you feel. And though I do it first thing in the morning, you can do it anytime. I have been known to meditate another time in a day if I know my evening will be stressful, it’s not often, but I know I can go back to that space and give myself a few moments to collect myself.
This may seem too New Age for you, and I get that. But taking a few moments every day to check in with yourself can only help you. If you start, let me know a few months down the road how you’re doing.
Time management and giving yourself time. Imagine how much better you will feel. Good luck.
Trust is built in very small moments. ~Brene Brown
I was recently in a room where people were bashing their doctors and the way the doctors were speaking to them. I asked if they said anything, if they re-directed the conversation, if they stuck up for themselves.
The answer was no. These people didn’t speak out about their care, about the fact that they didn’t feel like a partner. They no longer trusted their doctor because their doctor didn’t make them feel like their input mattered. Instead, they felt like a commodity in a health insurance ping pong game.
I have learned that you need to actively build trust with doctors.
When you are a parent and your child is sick, it is a question of trust. Whom do you trust? How much do you trust them? Do they trust you? It is a delicate dance as doctors, nurses and parents try to get a feel for each other, to know how much to say, how much the other will understand, how much they want to know. We walked into a hospital room in crisis. Up until that point, we were the only ones in charge of our daughter’s well being. We made sure she ate her vegetables. We made sure she brushed her teeth and that we held her hand in the parking lot. We worried about silly things like milestones and if she said “excuse me” after she burped. We fastidiously clocked her time outs as a minute for every year of age that she was. And we worried. Mostly, we worried about whether or not we were good parents, if our little girl was going to grow up and tell her friends about us or rather use us as fodder for her standup comedy routine.
We were thrown into a hospital, a HUGE hospital. To give you some perspective, our town had roughly 5,000 people in it. We lived in a county with no stoplight. Massachusetts General Hospital had 20,000 employees, at least a dozen buildings, and that doesn’t count all of the patients and families of patients. I love maps, I am a bit of a geography person. I love to see the logic behind their layout, what streets are named, etc. A map of the hospital grounds didn’t help me. The buildings were there, but there were passageways that didn’t make sense, some buildings were six floors, some twelve, some twenty. Elevators didn’t always go where you thought they went. It was a tangled jungle of hodge podge buildings erected throughout the centuries. There was no logic: this hospital was its own world, with its own rules, times, hierarchy, acronyms, and expectations.
And urgency. As a teacher, the only time I ran was if there was a fight between two kids in the hallway, but you would see doctors whose pagers had gone off and they would run to get where they needed to go. They needed to make decisions on the fly, immediately, to save lives. Doctors are smart, sometimes brilliant people, and they are used to being the smartest person in the room. They have to decide how technical they can explain things because they are dealing with an ever-shifting clientele of different intelligences. They could be speaking to someone with an 80 IQ or a 150 IQ and they have to tailor their speech accordingly.
First, I must say that if a doctor is a pediatrician, then there is a good chance that he or she likes children. That is almost mandatory, because it is hard, incredibly hard to see sick children day after day and to deal with their parents. And by deal, I mean explain to them what is wrong with their child, if it can be fixed, and how it can be fixed. I have had doctors come to me as recently as last month, seasoned veteran attending physicians who have said, “I dreaded coming into your room every day that first month, because I never had any good news for you.” If you have children, if you love children, it nearly impossible to see them in pain. It takes a special person, in a doctor, to treat the child, not the illness, and further, to treat the family, not just the child. It is even harder if you think that that child might die.
We had very limited experiences with doctors and hospitals. I had only ever been in a hospital once and that was to give birth to Wendy. Michael had never been in a hospital for himself. His mother died instantly in a car crash when he was a child and his father had been healthy. Once, I went at three years old to see my grandfather as he was dying of cancer. I remember my father swinging me and my brother Tony around off of his shoulders and through his legs and watching my grandfather laugh, tongue green from some medicine. I also had a boyfriend in high school who had his appendix out. I visited him once.
But to say that I was woefully unprepared for the event in our lives was an understatement. Michael and I had also only had freshman biology in college. We learned about mitosis and meiosis and photosynthesis. We learned the difference between the organelles. And here were the doctors, dozens of them, coming in and out of our room, with a scared sick child, and a scared us. Add to that the confusion of the room, a newly renovated wing, where Wendy was the first patient in the room and the doctors and nurses were looking in every drawer and cabinet to see where things were. We looked out our window and could see the golden dome of the Bullfinch building, the original part of the hospital where the first operation using ether was performed. The staff called it the “etherdome.”
I knew we were in trouble. It was all so confusing, disorienting, and painful.
One of the smartest things Michael did was right in the beginning. He took out a legal pad, and as doctors entered and introduced themselves, he would ask them who they were, what they did, what department they were in, etc, and then he made a chart on the legal pad by specialty. The Nephrologists had one section, cardiologists another section, infectious disease another section, etc. This way, we would know if we had seen them before, or if shifts had changed and who was talking to whom. Sometimes we had to ask what the specialty did, because we had never heard of it before. Some of the doctors were hard to recognize because they had to all wear special gowns and foot protection, masks and gloves, as Wendy was still contagious. Many of the doctors were shocked at the list, they had never seen something like that before. At least the list gave us some semblance of order, and as the days turned to weeks, weeks to months, we relied less on the list and more on our memories, but it was that initial putting order to chaos that helped our peace of mind and gave us something to focus on.
Wendy spent a lot of time in the PICU that first summer, and we spent it right alongside her. We would listen in on the twice daily rounds, taking notes about acronyms and what was being said. At the time, parents didn’t join in on the rounds, way back in the stone age, and Michael and I just started going to the door of Wendy’s room and leaning out, until eventually we were invited to join. Then after about a week, the doctors gave us time for questions during rounds. If they didn’t have time for the questions, they promised to come back. And they did.
We were building trust.
This helped when we were told it was time for our family meeting, the meeting where we were told that Wendy wasn’t going to be the same girl she was a few months before, at least physically. We were to meet in the meeting room, a room I was later told is called the “Room of Doom”, to be told that Wendy had permanent damage to her kidneys and pancreas. This was before the abdominal surgeries, the systemic infection, and the heart failure. This was just the kidneys and the pancreas.
Believe me, it was enough bad news to take in at once. I didn’t need more.
But when bad news came in the coming months, and it did, we knew that we trusted the doctors who delivered it. Because in the summer months, they told us what they knew and they listened to our concerns. They answered our questions. They got back to us if they couldn’t answer them right away.
We were an exceptional case only because we spent so much time in the hospital. Some people say that trust is a formula of consistency over time, and we were in the hospital for hundreds of days. So we got to know the doctors and nurses really well. What happens when you only get to speak to your doctor for fifteen minutes at a time, a few times a year? How do you build that trust?
Sometimes trust is implicit. We trust that our doctors are smart and thoughtful. We trust that the degrees on the wall give them the knowledge they need to make good decisions. They, in turn, hopefully, trust our instincts as parents. If they don’t or don’t appear to, we need to remind them.
“I’m her mom. I know there’s something wrong. I don’t know what, but she…..”
Keeping a list of the things that are different helps. Keeping a diary helps. Stories help.
Because trust can’t just be implicit. It needs to be explicit.
What if we said to our kids’ doctors, “I trust you and your knowledge. I need you to trust my intuition.”
Would they? In my experience, most pediatricians would. Sometimes they just need to be knocked into the mindset that not everything is observable.
But here’s the important part: YOU NEED TO SHOW UP AND YOU NEED TO SPEAK UP.
You are the adult representative for your child, or as I like to say, “You are the adult in the room.” And though none of us ever really knew what we signed up for as parents, the fact is that we signed up. Here we are.
The doctor is the professional. You two are a team. Not only do you need to know that, the doctor needs to know that too. Building trust is hard and it takes time. It takes communication. But it is possible, with small steps and consistency, over time.