Food Is Love

I am a big believer in showing your love by preparing food for the person.  Whenever my girls are down, I prepare their favorite meals.  For Penny, it’s Shepherd’s pie, all warm with ground meat, corn, and mashed potatoes, baked in a casserole dish.  For Wendy, it’s butternut squash risotto, bright orange and rich in flavor, complete with a little bit of nutmeg to finish. For Michael, he likes having his grandmother’s cookies, snickerdoodles, the rise and fall so quickly that they are a little bit chewy, topped with cinnamon and sugar.  It’s a show of my love, and a reminder of her love, all wrapped up together.

I remember each time we brought Wendy home from the hospital, there was always someone who had prepared a meal for us. Whether it was a meatloaf or pasta salad, knowing that someone cared enough about us to prepare something so that we could take care of Wendy, well, that felt like love. Eating is one of the things that you need to do every day, it can be a pleasure or a chore, but when you are in crisis, you often become much less discerning about what you put in your body.  You are eating to live, and you don’t always make good choices, especially when you have so much more to worry about.  

This last year in the pandemic when people were locked down, I started giving away food.  Though I have often given food away, during the pandemic it became a weekly event; I think the reason is for the connections food brings to people, even across distances, and especially when people are in crisis.  I learned how to bake sourdough bread, with a gooey starter that we had named “Gluttony.”  Every Friday I would bake four loaves of bread, the family would keep two loaves and we would deliver a loaf each to people whom we thought needed a little pick me up.  On Thursday evening, the night before I would bake, we would discuss who would get the loaves.  Maybe it was a couple who had just had a baby or a counselor who was suffering from covid fatigue,  or maybe it was a neighbor who had a tree fall on her car (true story!)  We even had a spreadsheet for each week to determine who would get a loaf of bread.  Then Wendy would drive the car, Penny would do the running, drop the bread, ring the bell, and we would all drive away.  Sometimes we needed to get the address of the person (both girls wanted to drop bread off at their teachers’ doors) and so I would have to tell them what we were doing. But we called ourselves the Bread Bandits and in that crazy time of isolation from others, we still managed to feel connected.

I still give away food, when someone is sick or grieving, I drop off some soup or some bread, or both!  Nothing says love like food, it’s just that simple.  And I’ve even started giving away hot dinners. If we have food from dinner that I don’t think will save well, I put it on our town facebook site and offer a free dinner or two, to someone who can pick it up that night.  Honestly, it usually gets taken within ten minutes, and though I would love to think that it’s because of my cooking, I think it’s more likely that it’s because food is love, and people need more love in their lives.  

So if you are reading this, cook something for someone you love.  Leave food for someone who needs it. And thank someone who does the same for you.  

Every Storm Runs Out of Rain: Emerging from Virus Lockdowns and Vulnerable Populations

How are we going to end the COVID-19 virus lockdowns?  When are we going to go back to normal life?  You are surely wondering this, and your children are certainly asking you!  My teenager and ten year old would like to go back to their soccer games and birthday parties, and to be honest, so would I.  We miss human connection, and the opportunity to be with our tribe.  We miss pot lucks and barbecues, bake sales and tournaments.  We miss it all.  We even miss the things we used to complain about.

People are getting antsy in their second month of home confinement.  The common consensus is that with time, testing and slowly phasing out stay-at-home restrictions that we as a country will get back to normal.  I hate to be the one to break this to you, but this is a very rosy scenario, one that doesn’t take into account states and cities that are harder hit than others.  There’s no magic wand.  It’s not going to all go back to normal all at once.  In fact, it may not ever look the same in our lifetimes.

Most experts are saying normal life won’t resume until 2022.  That’s a long time. I have had a lot of anxiety about re-entering society.  As the mom of a child with multiple medical issues I’m worried about entering society too soon.  My daughter is one of the 20% of Americans who are considered “At Risk,”  along with cancer patients, diabetics, and people with auto-immune disease.  We already live with unpredictable futures and social distance.  We call it the Cost of Living Vibrantly.  If she gets sick, we go to the hospital. If one of her friends or our family gets sick, they notify us and we stay away. We’ve missed family gatherings at Thanksgiving and Easter multiple years due to family illness.  She’s been hospitalized over her birthday and Memorial Day. Everything can be dropped at a moment’s notice,  and though it is disappointing, it is necessary.  My daughter Wendy is exceptionally good at rolling with the punches, and it has served her well throughout her life because she’s missed out on a lot of events.

I’ve recently read a quote from Maya Angelou, who was quoting from a Country song:

“Every Storm Runs Out of Rain.”

It’s a version of “This too shall pass,” the idea that nothing is permanent, that nothing will last forever.  Winston Churchill once famously said, “If you’re going through Hell, keep going.”  But as I was thinking about the Maya Angelou quote more, I got to thinking that maybe we should think about some areas of the country right now as being rainier than others.  If New York City is suffering a deluge, South Dakota is in a drizzle.  Storms cancel events like concerts, soccer games, and other social gatherings.  When the rain or snow clears, and blue skies break through, people can start to go outside and see their friends.   It will be easier to reopen some parts of the country than others, and this is clearly an oversimplification, but it can in some ways be helpful. The question, “Should I go to Boston for my doctor’s appointment?” can be answered with the response, “Nope. Still too rainy.”

People, too, can be too rainy, or can have their own personal rainstorms. I like to think of Olaf from Frozen with his own personal flurry.  Where we live in southern Massachusetts might be ready to reopen, it might be considered “sunny,” but for my daughter, as well as for other people in the “At Risk” population, there’s still a chance for storms.  So we decide to stay home.  There will be a million situations in the next two years when we need to make this kind of decision, and a million situations among all the other twenty percent of people who have a medical condition.  It will be a patchwork quilt of decisions concerning risk and reward.

I would love it if our leaders considered a special recommendation for the “At Risk” population, to know when it’s safe to venture out.  When one out of every five people has a reason to stay inside, it makes sense to know when it’s Partly Cloudy, Chance of Rain, or a violent storm.  The combination of what the rain outside will be, along with personal rain clouds of people, will allow us to make better decisions.

I chafe at the idea that some people are posing that my child’s death, or the death of an elderly citizen, a war vet, or someone with underlying health conditions is an acceptable risk for the country to reopen in order to save the economy. I’ve spent a lot of my life keeping my own daughter alive.  There needs to be special measures put into place to protect as many citizens as possible, for as long as possible.  As I said in my last post, the people who are determining acceptable risk consider their “only” is actually my “everything.”  While I understand there is no playbook available on how re-opening is supposed to go, I beg the people who make these decisions to keep the At Risk population in their calculations for re-opening towns, cities, and states.

Please press your elected officials to consider the At Risk Populations when looking to emerge from Lockdown and stay at home conditions.  Thank you.

 

 

Fear and Resilience: Extreme Social Distancing

Greetings from Northern Vermont,

It has been a crazy week, and I’ve had some time to reflect.  Last week there was a confirmed case connected to Wendy’s high school, and as per her doctor’s recommendation we pulled her out, got a doctor’s note, and began the process of getting her tutored.  I asked if we could get the tutoring remotely because I planned on bringing her up to Vermont to ride out the coronavirus up here.

Because of Wendy’s multiple medical issues, even though she is young and in shape, she is in the twenty percent of people who are at high risk. It hurts my heart when people say that “only” twenty percent are at risk, because their “only” is my “everything.”  When I had spoken to her doctor, she laid it out very clearly to me:  there  is no vaccine, there is no treatment, and if you end up on ECMO, you are going to die, because they can’t do anything else.

So as far as I was concerned, we needed to keep her safe, no matter what.  She and her sister are my everything, not just a portion of the at risk population.

When Wendy called me on Monday morning (3/9) because of the coronavirus case connected to her school, I had just arrived in my parking lot of my own school (I am a middle school teacher at a private school a few miles away.) I informed my front office that I had to go back, told Wendy I would drive around to the back of the school, and then bring her home. She hasn’t been back since.

I then went to my own principal, and together we worked out a “remote teaching” schedule. The computer teacher put a large screen in my room, and colleagues manned the room on their prep periods while I taught classes from my house. This way, I wasn’t bringing home the virus to my daughter without knowing it.  I taught this way for the remainder of the week, until the 13th, and now the school is on our regularly scheduled vacation.  I am so indebted to my colleagues for doing this for me.  But to be honest, I still wasn’t sleeping.  I was worried that my other daughter Penny or my husband would bring home the virus.    We began to cancel social engagements left and right, soccer practices, karate classes, yoga, etc.  My husband asked to work from home, but still had to go in a few times to check on things.

I pulled her younger, healthy sister out of school on Wednesday after Governor Baker said that students would not be penalized for their absences, and when I asked for guidelines on how to teach Penny I was told that teachers were instructed not to give out any work, or any guidelines.  Schools have since been closed by the governor until April 7, but they have not been given any work, and will not be given any in the name of equity, but also because teachers’ unions don’t want to set a precedent.  Wednesday night President Trump gave his Oval Office address and the NBA shut down for the season.  Stock futures plummeted.

On Thursday, 3/12, after I taught my online classes, we made our way up to Vermont.   I had packed the car early in the morning.  Five days’ worth of clothes for each of us, lots of arts and crafts, a few puzzles, some food items I knew Michael wouldn’t eat, all of Wendy’s medical supplies, some games, school books, snow pants and outdoor gear, and yoga mats.  I made clear to the girls that there would be no stops.  No bathroom, no gas, we were travelling door-to-door.  After we unpacked at my parents’ house (they are not here, they’re snowbirds, splitting their year between Vermont and Florida,) I looked to see what they had and what I would need.  The answer:  they didn’t have that much and I was going to need to do a lot of buying.

This was a setback, as I had already prepared our house in Massachusetts.  Now I had to recalculate.  I already had all of Wendy’s medical supplies, but we pretty much needed to get all the food, and I was planning on being here for a month.  We went to the supermarket and bought enough for four weeks of staying here.  People looked at us like we were crazy.  Who needs all that food?  We do, because I don’t plan on going back out.

Here’s the deal.  There are people who have coronavirus with no symptoms, or minimal symptoms, and after testing, scientists at Princeton have found that the coronavirus can stay alive for up to three days on stainless steel and plastic.  So someone who doesn’t know they are sick can leave the virus on an object three days ago, and my kid can get sick from it today.  That’s terrifying.

Moving up to Vermont was strictly a numbers game.  There are fewer people in the state of Vermont than there are within the city limits of Boston.  More people, more potential illness. Fewer people, less potential.

But when I see citizen continue to go to amusement parks, and wearing green to go to  Saint Patrick’s Day parties at bars, or being told to continue going out to dinner, all I want to tell them is PLEASE STAY HOME.  Your social distancing will lead to fewer cases all at once, and fewer cases all at once means that our medical system won’t collapse under the strain.

My friend Susan lives in Rome, and today (3/17) I was going to fly on a plane and visit with her. She works at the UN, in the FAO, and I was going to speak to a committee there about foodborne illness, which is originally how Wendy got sick.  Through her unfortunate experience of living in the age of coronavirus in Italy, Susan has been coaching me on what to expect, how to prepare, and when I suggested Vermont, she thought it was the right move.  In Italy the medical system has collapsed, and the entire country is in lock down, because Italians didn’t take it seriously, didn’t act fast enough. 

We can do better.  We have to do better.

Thank God my parents have this house.  Thank God I have access to it.  Like everyone else, I’m trying to navigate the daily activities of my kids so we all don’t go crazy. We have a schedule, they have academics, and I’m grading papers and working toward my virtual schooling that I will be transitioning to.  We go for daily walks, we are working on a 1000 piece puzzle of Star Wars. After dinner we play UNO and watch something on Netflix on a laptop. (My parents don’t have cable.) We eat lunch and dinner together, and I’m trying to teach them to monitor their snacks, how to do laundry, and how to entertain themselves.

I’ve started offering yoga every morning at 9 am on Facebook Live, as a way to connect to the outside world, and it’s nice to connect to my friends and bring something good into their lives, because like them, I’m in self-isolation.  But for us it’s pretty extreme and the potential consequences are dire.

Honestly, I’m finally sleeping again because we are here, though I miss my husband who is still at our home, with our cats, and who isn’t sure when he will be able to make it up.  Wendy thanked me when we got here, she had been worried too. The girls only want limited knowledge of what is going on in the world, and they don’t want me to talk about number of deaths.  so a lot of that information I have to keep to myself.

Wendy has mentioned to me that in a way she feels like a princess in a tower, like in the fairy tales. I think that’s an accurate way of putting it.  It’s better than being a princess in a hospital bed.  So I guess if we are working through the roles of the fairy tale, then I’m playing the part of both the knight and the dragon, protecting and guarding the kids.

I have no way of knowing what will happen, I can only do what I can to protect my kids.

Please, don’t go out unless you need to.  Practice social distancing so kids like my Wendy, and families like my family, don’t have to practice Extreme Social distancing.  We are scared enough every day as it is.

 

 

 

 

The Heroes We Need

I don’t know what I thought motherhood was going to be like so many years ago, but whatever I thought it was, I was wrong.

I recently ran across this quote from Joan Ryan, author of the book, The Water Giver:

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have.  It’s about understanding that he is exactly the person he is supposed to be.  And that, if you’re lucky, he might just be the teacher who turns you into the person you are supposed to be.”

Of course this reminded me of the quote from Batman, our kids aren’t the heroes we deserve but  the heroes we need.

A few weeks ago, I was fortunate enough to hear the remarkable story of Ario Nour and his family.  Ario had a brain tumor and had to go through a therapy that requires you to remain perfectly still with a mask on your face as you are put on a medical bed in a room, alone, while you have targeted radiation therapy.  It’s called proton beam therapy, and it’s necessary for little kids, to zap the tumor but save the precious brain tissue surrounding it.  As you can imagine, this can be terrifying and many children need anesthesia to undergo this treatment.  The problem is, this isn’t a one time treatment, it’s five days a week for many weeks.  That’s a lot of anesthesia.

Ario, at the age of seven, was very clear when he began his treatment:  he didn’t want anesthesia every day, he would find a way to stay still all by himself.  And he did.  The nurses and social workers were so impressed with him that they had an idea:  Maybe Ario could teach other kids to lay still too.  He tried mentoring another child. It worked.

And this peer mentoring program was born. Kids with brain tumors teaching kids with brain tumors what to expect, what to do, how to lay still.  To practice at home, before the treatment, kids try lying on the couch for increased amounts of time, often with something over their faces, like a washcloth or a spaghetti strainer.  They are allowed to listen to music, books on tape, or something else that will keep them occupied.

Then they get their mask specially made to form fit their face. They get to decorate it, and they use it every time they get treatment.

Other kids, after going through treatment and surviving, went on to mentor other kids.  They are proud to be the experts at something, and to show newbies who are sick and scared that they’ve done it and succeeded. That it was possible.

And the program grew.  It wasn’t just one kid helping one kid. It was a program.  Ario had started a peer mentoring program.

I got to hear him talk at the Family Centered Rounds at Massachusetts General Hospital for Children. Ario has had to go back three times for more treatments.  (Read:  He’s had more than one brain tumor.)  Now he’s in high school, and he’s a normal kid.  Smart, shy, humble.

His parents spoke too.  Not only do they support Ario’s efforts for the peer-to-peer program, but they also support and ride with him for TEAM ARIO, where they ride their bikes 50 miles in the Granite State Quest and raise money to fight pediatric cancer.  Ario and his family have raised over $300,000 and Ario has been honored as one of “The One Hundred.”  It’s a dinner that honors one hundred people at Massachusetts General Hospital who have worked hard to fight cancer.

As I listened to this story, truly an inspirational story, it’s important to remember, Ario isn’t cured. He has recurring cancer.  And his parents have this burden to carry, something no parent ever wants to deal with.  And yet, here they are, parents of a child who started a peer-to-peer program, who’s raised hundreds of thousands of dollars, and yet, who is still chronically ill.

He’s not the hero they deserve, but he may be the hero they need.

Of course, Ario is a dramatic example, but think about your kids and what they have taught you. Have they taught you patience?  Selflessness?  Sharing? Have they taught you how to communicate better or how to fight more fairly?  Mine have.

I’m including the video of Ario here, for you to watch. Grab your tissues.

And take a moment to think about how your kids have changed you for the better.

Last Minute Wishes

Sometimes the season gets us down. There’s a lot of expectations to make the holidays picture perfect, and a lot of times we just can’t live up to all of that, any of us.  And as the end of the year winds down, it’s nice to take stock of the year, see what our successes are, and where we were found wanting.

Brave Fragile Warriors did not have as many posts as last year, my attention was divided and I just didn’t write as much. The first year, I was determined to write once a week, but I realized not many people want to read a once-a-week-post, so I wrote instead when the spirit moved me.  Hopefully that means that my posts were richer and more meaningful.  Hey, a girl can hope, right?  When I look at the analytics, it was viewed in 70 countries around the world.  That’s pretty cool.    I was also contacted to reprint my posts in Today’s Kids In Motion, and The World Transplant Games asked if they could put my blog post in their newsletter (note:  the link is to a PDF).  Probably the biggest part was that one of the blog posts is now in the chapter of a book, The Power of Moments, by the Heath Brothers.  These are huge honors and I feel really lucky that these stories are getting out there.

I did a lot more public speaking this year than I ever expected to (outside of my classroom, of course.)  Topics ranged from the importance of telling your story, to helping to minimize anxiety in an Emergency Room Setting, to creating partnerships within the hospital between patients and providers, and what it looks like to be the parent of a sick kid.  All of these topics are near and dear to my heart, but honestly, public speaking is not my favorite thing in the world.

I also spent a lot of time, both on the blog and in person, advocating for the health care of children.  It’s so important to speak up for kids who are sick, and for their parents who are in crisis.  For the first time ever, I wrote to my congressional representatives, and I even traveled to their offices to speak to their staffers.  I wrote a letter for STAT news that was published about the necessity of the Affordable Care Act for kids like my Wendy.  I worry about funding for CHIP that will only last through March, and I will keep fighting for funding for those kids as well.

I got to do one of my favorite things the other day, which was wrap presents for parents who have kids in the hospital for Christmas.  There are a number of charities that buy presents throughout the year and bring them all in to Massachusetts General Hospital so parents can “shop” for their sick kids and then we get to wrap the presents for them.  In fact, Brave Fragile Warriors was inspired because of this event a few years ago.  I love it because it’s easy, right?  I go in and wrap presents.  But the parents, who have had their kids in the hospital for who knows how long and who are in total crisis mode, are so grateful. It’s one less thing to worry about.  There were two sets of twins at the hospital, each with older siblings at home. One mom had a pile of knit hats, that she added along with her toys for her son who was going through chemotherapy and had lost his hair.  One mom separated her gifts for each child so that she had something to give to each of them. One mom was telling me that the Christmas Tree was still tied to the top of the car since last week because they had to go straight to the Emergency Room and hadn’t left the hospital since.  Think about that for a minute.  It made all of my crises seem rather small in comparison to twins in the hospital and a tree still tied to a car.

It’s too late for a lot of us to help kids and their families in crisis right now, this year, in person.  But I would suggest finding a charity to donate to, for kids, and you’ll feel better, even if your holiday isn’t going so well right now.  If you don’t have a favorite children’s charity, then I would suggest the Make A Wish Foundation.  They give kids with life threatening illnesses the chance to make one wish.  Whether it is to meet a personal hero, or to take a special trip, or to have a certain event.  When Wendy had her Make A Wish, she chose to go on a Disney Cruise, and I can honestly say, it was one of our first steps toward healing and feeling like a family again.  Other kids choose to swim with dolphins, or to be Batman for a day.  You get the idea.  For Wendy it was a big boat with a pool and water slide, and Mickey too.

Happy Holidays to you and yours.  Celebrate the season together.  Make good resolutions.  Rediscover gratitude.  Lend a helping hand to those who need it.

These are my last minute wishes for you.

 

“Wonder”: Review by a Mom of a Sick Kid.

The movie “Wonder” is the story of a young boy, Auggie, who has a facial deformity.  He has been in an out of the hospital for his entire life. The whole family revolves around his care, and everything else gets put on hold:  Mom’s academic career, sister’s attention, and poor dad doesn’t even get a chapter devoted to him.  Auggie, however, has the hardest time, he knows that he looks different from other kids, and now he has to face the horror of going to school for the first time, in *gasp* middle school.  Now, let’s just say it here and now, middle school is tough for everyone involved, but to start at a school for the first time with a noticeable difference, well, that makes it all the harder.

I admit, I cried for at least 75% of the movie “Wonder.” (Wendy cried for the whole movie.)  And why not, there were moments that I could relate to, because at some point in her childhood, my beautiful teenage daughter looked different from other kids, but she was too young to notice.

Because of Wendy’s incredibly high blood pressure, she was taking five different  blood pressure medications.  One of them, minoxidil, is a vasodilator; it expands the blood vessels, which lowers the blood pressure.  You might have heard of the drug, minoxidil, it’s the main drug in Rogaine.  It’s side effect is that you grow extra hair, hair that is darker and more coarse.  For Wendy, she went from a blond to a brunette in just a few months, and her hair grew so quickly that I needed to get her hair cut every three weeks.

Wendy had other things going on, a patch that she wore just below her collar bone for another drug that helped control her blood pressure, and the hair wasn’t just on her head, it was all over:  arms, legs, forehead, back.  She looked….well….different.   Obviously, different.

Wendy was only four, and being the vibrant child that she was, she didn’t notice. We still went to museums and the park, and walked to the hospital twice a week for blood work.  She still swam in the public pool and played in the splash parks. She had an easy smile and a friendly, outgoing personality with other kids.

But the other moms, well, they looked a little nervous around my child.  And the kids, well, they would ask what was wrong with Wendy, why she looked like that.  Thank God, Wendy never noticed.  I would explain that Wendy has an illness and she takes a special medicine to make her feel better, but the medicine makes her grow extra hair.  That satisfied the other kids, maybe not so much the other moms.

Then there were the times where people who knew Wendy didn’t recognize her because she had gone from a blond to a brunette, because she had the puffy cheeks due to her kidney failure, because she had the patch below her collar bone.  Those people would see me and ask where Wendy was, and then visibly startle when I pointed to the child next to me.  Those are the ones Wendy noticed.

There was a woman who cut Wendy’s hair, every three weeks, at Supercuts. We would arrive, and the other beauticians were visibly concerned over how to cut Wendy’s hair, and this woman would just scoop her up, ask about her day, give her two lollipops, and say, “See you in three weeks.” I loved that woman, because she didn’t make a big deal about Wendy.  Wendy was just another kid to that woman.

I cried because I could relate to some, but not all, of the feelings that the mother, played by Julia Roberts, was going through.  Yep, my life had been put on hold.  Yep, my life revolved around Wendy’s care.  Yep, I still worry that Penny doesn’t get enough attention.  Yep, I worry about every new step forward that Wendy has to take ( like going to Washington DC this spring with her 8th grade class for a week without me.  I think I might die.)

But the truth is, that most of us, thankfully, are not Auggie, and we are not Auggie’s mom.  Most of us aren’t Auggie’s sister, or dad.

Most of us are Auggie’s friend, Jack Will.

Jack knows that Auggie is different, and doesn’t know what to do about it.  He’s nice to Auggie because he has been asked to be, and because he is a scholarship student, he’s feeling like he really has to do it.  But he learns that Auggie is sweet and kind and funny and smart, and they really become friends.  But Jack still knows that Auggie looks different. Jack says the wrong thing on Halloween, about his appearance, hurting Augie’s feelings and having to make amends.  Spoiler alert:  it turns out to be ok. Jack Will realizes his mistake when Auggie starts to avoid him.

Jack was my favorite in the book, and he was my favorite in the movie because while Auggie’s family doesn’t have much choice, they need to be supportive of Auggie.  Jack does have a choice, and he chooses to be kind.  Which is the point of the story.

The author, R.J. Palacio, wrote the book Wonder because of a real life experience.  Her young son burst out crying, seeing the face of a young boy with a facial deformity at an ice cream shop.  She was so mortified, because her child wasn’t emotionally prepared to be kind to this young boy, and she went home and wrote the book, from multiple perspectives.  Each perspective in the book speaks from one of the characters (except the Dad, which gets me angry).  Each perspective shows that living life with a loved one who is ill isn’t easy, but you make room for kindness. Bad days will happen, but you move forward, together.

Auggie’s presence changed the tenor of the school, because he was kind as well.  And the other students became protective of him when they saw how the outside world viewed him because they didn’t know him.  You would be tempted to say that the moral of “Wonder” is don’t judge a book by it’s cover, but you would only be half right.

The other half of the moral is it’s ok to be afraid and kind at the same time.

That’s the lesson we want to teach our kids.

 

 

Thanks, Carepages.

Carepages goes dark tomorrow and I am going to miss it.  What is Carepages?  It was a health blog that you signed up for to notify your loved ones about your health journey.  We have used it as a lifeline for the past ten years.  When Wendy was super sick, we wrote every day, sometimes twice a day, to keep our loved ones up to date.  As she got stronger and better, we reduced our notifications.  Recently we only used it to mark big milestones.

The thing I loved about Carepages is that it made you really sit down and take stock of the medical day.  In any given day of craziness, it was good to really evaluate what was good, what was bad, and what were the hopes for the next day. And it buoyed our spirits to get messages from our family and friends telling us that they were thinking about us, praying for us, praying for Wendy.  Hospitals can feel isolating, and it was nice to know that people were supporting us from afar.

Today I spent much of the day copying and pasting all of the updates, over 200 of them, over the course of our 10 year medical journey.  I have to be honest, I wept reading a lot of the updates.  Wendy was so young and sick, and I knew, reading the updates, that things were going to get worse before they were going to get better.  I was so young too, and angry at our situation, the unfairness of it all. In 2007 and 2008 Wendy spent every holiday in the hospital, some 180 days.  I left my job, and Michael took an extended leave.  I slept less than three feet from my parents in a hotel room for months, and it became clear that we needed to move into an apartment.  We had two blissful hours with Wendy in the apartment at Christmas, so she could open up her presents, before we had to bring her back to the hospital.

I marked the day that Wendy’s kidneys started working again, the first time we made it home, the day she coded in the PICU, the day she was put on the transplant list. I read the day of her transplant, and the first anniversary, the second anniversary, the fifth anniversary.

As I read, I also read messages from loved ones who hadn’t gotten married yet, or hadn’t had their babies yet.  Friends who hadn’t gotten divorced yet.  Stalwart friends who were battling their own illnesses and have since passed away.  I am so grateful for those messages, to be able to read them, to be able to keep them.

At some point, Michael and I had decided to make Wendy’s Carepage public, so that other people could take comfort in her story, as I had taken comfort in the stories of others over the years, especially when we were looking for stories of kidney transplants.  We had people follow us from all over the world, and they wrote messages of support as well.

I’m going to miss Carepages, it was a part of our life for a long time. Now in the age of facebook and WordPress, it seems almost quaint to have a blog site dedicated just to an illness journey.  Perhaps that’s why it’s going away.  But it marked our lives.   It marked Wendy’s life, her health, her strength.

Today, Carepages showed me how far we’ve come.  A new town, a new home, a new baby (now eight years old), and new friendships along with the strengthening of old friendships. So thank you, Carepages, for everything, for the good, the bad, and the ugly.

Thank you for the hope.  Thank you for the journey.

 

Communication & Hope, Thanks to Hospital Chaplains.

What engenders hope?  Who holds hope?  How can a person foster hope in another?

These ideas roll around in my head, when I am meditating, or when I am exercising. I read about hope, I study it, I read to see what others have said about it.  I know, it’s unusual, but I usually find that when I’m on a project like this, there’s a reason, that things connect to it like a magnet.

Recently, I was sent two pieces of information about Hospital Chaplains, and how they engender hope through communication.  These pieces came to me from different sources, one from the Pediatric Chaplain at Massachusetts General Hospital, and one from the Bishop of the Delaware-Maryland Synod for the Evangelical Lutheran Church.   Both of them saw these items and thought I’d be able to blog about them.  And these stories have been rolling around in my head, along with thoughts about communication and hope.

I know, it’s a pretty messy place inside my brain.

The Chaplain of MGH sent me information about the Wilbert Foundation.  The Wilbert Foundation is a foundation that supports pediatric chaplains of hospitals, with support groups, continuing education training….and they Provide Bertie Bear Boxes.

This is Bertie Bear.

Bertie Bear comes in a box that is designed to look like his home.  He comes with a backpack, a note pad, and a maze. These are meant to keep the sick and sometimes scared child busy.  But these are not the most important things in the box.  The most important thing is the white board:

The white board comes with emotions and a prompt.  So the child can write how he or she is feeling, and why that is.  Imagine if doctors walked into the hospital room and could tell by a glance not only how you are feeling physically, but what your emotional state is too. When emotions go up, vocabulary goes down, it’s hard to talk about how you are feeling.  Imagine if you didn’t have to say it — you could just put a magnet on a board.

Now imagine if you couldn’t speak at all.

That’s when the  other piece of information came to me from Bishop Bill Gohl.  It was about a chaplain who designed a board that allows people in the ICU to express their emotions and ask for simple comforts.  It’s called a spiritual care board, but again, it serves many more purposes:

The idea with the spiritual care board is that you can discuss your emotions, and then ask for help. Perhaps you are feeling helpless, and would like to have someone read to you.  Perhaps you are feeling uneasy and would like to have someone hold your hand.  You can point to the pictures, and a caretaker can understand what you want.

Imagine the relief when your emotional pain is registered and attended to when your physical pain is also registered and attended to.  That’s when real healing begins.

When people feel heard, when they are able to communicate, they feel more hopeful that they will get better.  They feel that they can begin to move forward.  These are powerful tools that can and should be used in both pediatric and adult hospitals, don’t you think?

Here is the link to the Wilbert Foundation, to learn more about Bertie Bears.

Here is a link to a CNN story about the Spiritual Care Boards.

Consider mentioning these to your local hospital, or your congregation.  It might be worth a sponsorship from your church, synagogue, or mosque.

More communication is needed in this world.  So is more hope.