#projectW

This is a story of determination and luck.  And maybe some magic.

Once upon a time there was a little girl who had a lot of medical problems and saw the inside of a hospital for  many, many days.

She got sick, then a little better, then a LOT sicker, then better, better, a little better, and then better still.  But she still went into the hospital from time to time, by way of the Emergency Department.  It’s just the way life was for this little girl, and it wasn’t fair, but it just was.  It was nobody’s fault.  She made the most of it, by making routines of walking her mommy to the door every night with her father, through the halls of the hospital, to the farthest building that was still connected, and then going to see the fish in the PICU, and coming back and reading Harry Potter until they fell asleep.

She learned how to flush her IV lines and when unsuspecting people would come in, she would squirt them with the flushes she kept in her bed.  Then she would laugh maniacally.

She and her parents would set up Christmas Lights at night, and then take them down during the day so they didn’t get yelled at.

She would ride on her IV pole when no one was looking.

She would have her toenails painted by her favorite nurse.

Sometimes she would sneak downstairs with her mom and get a hair cut, or go to the chapel, or go to the gift shop to get a prize.

That’s when she was feeling well, which wasn’t all the time, but she and her parents made the best of the times that they had when she was feeling better and in the hospital.

All together, she spent over two hundred days as an inpatient at Massachusetts General Hospital.

She didn’t really know it, but she was becoming AN EXPERT at being a hospital patient.  And she knew a lot more than other kids about it.

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Her name is Wendy, and she’s my daughter.  While this was happening, she was between the ages of 3 and 5.  Now she’s twelve.

A few years ago a neighbor called us.  You see, both of her kids were in the hospital.  One was an expected surgery and one was an emergency appendectomy.  The mom called us a few times to ask questions about what to bring, what to do, what to expect.  Wendy and I answered her questions together.  We realized together that we knew a lot of things that average people don’t about hospitals and how to handle them.  We decided to write a story about our experiences.

The story was designed to help kids who were waiting in the Emergency Room, and were probably in pain, and likely nervous or scared.  If those kids asked their parents what to expect, a lot of the times, their parents didn’t know how to answer and were worried themselves.  Wendy and I thought that together we could help both the kids and their parents.  Once we were finished, we wondered what in the world should we do with it now?

We decided to give it to the hospital, and find a way to get it published.  We thought it would make a great coloring book.  Well, like many things in a hospital, it had to have a committee, so everyone could look at it.  So with the help of the chair of the Family Advisory Council, a committee was formed, with doctors and nurses, and social workers, and child life specialists, and a few other people.

They said they loved it….but could we change it?

So we did.  We made it more technical, explaining more and more things.  But we hated it because it didn’t feel like Wendy’s story anymore.

The committee hated it too.  So we started all over again, and this time made it more personal.  That felt better.  We had a good working draft and it was approved.  Yay!

Then….tragedy struck.  The Emergency Department decided that when it went through renovations that it was going to go paperless.  So no book.

What do we do now?.  Then I thought maybe we could get it animated.  But money was a problem, I didn’t have any to put toward a project, and so I looked into an internship at the hospital for a student of computer animation.  We made a job description, we found a mentor at the hospital, we filled out all the paperwork.

We got an intern!  Yay!

But, then tragedy struck again.  It was too much for the intern to handle, too big of a project.  He didn’t tell us until the internship was over that he basically had nothing to show for his time.

And I thought, this is it, this is the end, after two years.  How in the world am I going to tell Wendy?  I had run out of options, and I did something I rarely ever do.  I felt self-pity.  I was so unbelievably sad.  I wrote about it on facebook, saying just that.  I had run out of ideas and I was going to have to give up, something I hated.

LOTS of people responded with ideas.  Lots of people gave names of people who could help.  One friend asked for the transcript, so I sent it to him.  Then Stu said, “Would you mind coming in tomorrow to talk to my team about it?”

And I said Yes, thinking that I was going to have to pitch the story to this group of people in an architecture firm, so I planned what I was going to say and I went to the meeting.

That’s when something magical happened.

The had already decided!  They were going to animate it!

Yay!  Again!

And so we have been working on this project with them for almost six months.  Wendy has given her voice to the story, and she will be the narrator outside of the scenes. The Architecture firm, Payette, has been to the hospital to take pictures of the rooms. They have drawn a cartoon Wendy.  They have recorded her voice.  It should be mostly ready in a few weeks.  And I just can’t help but marvel at it, at all the kids it’s going to help.   It’s right now being called #projectW.   The idea now is going to look like this:

A child and his/her parent come to the emergency room.  They go through triage, and are sent to the pediatric portion of the ED, a separate place.  While they are waiting for treatment, they will be given an Ipad with the story that they can watch, which will be about 10 minutes long.  Wendy will tell them lots of what they can expect.  It will be her person who will reduce their anxiety.  It will be the pictures that Payette has drawn that will show them the way.

I just can’t wait the few more weeks until this is finished!!!!  Those of you who know me have been bored probably to tears hearing me talk about it, worry about it, work on it, or explain the many iterations.  I am sorry if that has happened.  But I promise that when it’s over, it will totally be worth it.  I just cannot wait!

Wendy is totally taking it in stride, like she becomes a cartoon character every day.  That’s just the way she is.

Like I said, determination, luck, and magic.

Photo:  the first working cartoon drafts of Wendy’s character.

 

 

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Firefighters and Architects

“This will be a new litmus test for your friendships,” he said as we were walking down Cambridge Street. It was a warm summer day, and Mark was his usual affable self.  A friend from college, I remembered that he had the same email address as the doctors at the hospital,  so when I wrote to him, and said, “Hey, do you work at Massachusetts General Hospital?”  he came by the PICU that day and took me out to a bagel shop around the corner from the hospital.  A psychologist by training, he worked at MGH and managed to take us around a little at a time, orienting both Michael and me to the hospital and surrounding area.  He took us to the chapel, the central quad, and the Healing Garden:  a rooftop garden that overlooked the Charles River and had both inside and outside seating.  He brought us a loaf of banana bread that his wife made.  He cracked stupid, softball jokes.  He was just what we needed at the time.

He was right.  Our trauma, the medical trauma of our child, reordered our friendships, reshuffling them like a deck of cards.

There were some people whom we found drifted away.  For whatever reason, they couldn’t handle our trauma with us, whether it was because they had their own more pressing problems, or because they didn’t know what to say or do. Phone calls and emails got fewer and farther apart.    The loss smarted like a sunburn, but we all moved on.

Some people whom we had considered acquaintances, nice people but with whom we didn’t normally hang out, they were a nice surprise because they rose to the occasion, they met us at our lowest place and helped to lift us up.   They helped Wendy, by bringing toys and gifts.  They helped us with food and ideas and cards and hugs.  This was our nicest surprise, and those friendships have survived beyond the initial trauma.

Mostly, though, we found that our friend base, and even our families, fell into two groups:  Firefighters and Architects.

Firefighters rush in. They fix the immediate, broken parts.  They take care of the schedules, the child care, the food, the logistics.  They say, “I’m on it,” and they take care of whatever “it” is with efficiency and without you having to ask again. They are the ones who immediately call. They are there in the trenches with you, helping you to fight the immediate acute battle.  Their actions are their help.

They they retreat when the immediate assault is over.

In move the architects, who rarely are the first to call, but who sit back and wait to see what you will need later.  They are the ones who listen to your problems and offer long term solutions.  Often they are the ones who will tell you the hard truths,  help you make the big life changes,  help you to systematize and reorganize.  They help you to look at the wreckage and begin building again.  They stick around longer.  Their advice is their help.

Let me be clear, you need both of these kinds of people.

Rarely do you have a friend who is both a firefighter and an architect, each person has a  definite strength.  Sometimes a good friend will try really hard to be both, but to be honest, it’s exhausting when you are playing against your strength, and one set of characteristics usually rises up.  We found that often in a couple, one person is the firefighter and one is the architect, which makes sense because they balance each other out.  They are doing the best they can with what they’ve got.  So are you.

Friends and families will get you through the initial trauma, and the after effects.  It won’t be until later when you are looking back that you realize how much they helped.

 

 

Pattern of Acceptance

Once you get a diagnosis, how do you get to the point where you’ve accepted what’s happening to you, your child, your family, your life?

You may have heard of the Kubler-Ross model of grief.  At first it was applied to death and dying, but it has been spread out to many different kinds of grief.  You probably read about it in your psychology college textbook, because it’s not new.  I ran across it when Wendy was in the hospital and I realized that I was mourning our old life, the life before Wendy got sick, so I did some searching and rediscovered the Kubler-Ross model.  I am by no means a psychologist, but this helped me to get some perspective on our situation with a new diagnosis and a child that was never going to be the same again.  It’s a scary time, and your feelings and emotions run the whole gamut.  Sometimes I still check in to see where I am on the continuum.

But now, I like to think of it more as a pattern of acceptance than stages of grief.

Denial:  The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.  I remember thinking not that the doctors were wrong in everything they were telling me in the “Room of Doom” in the PICU, but I remember thinking that they must be exaggerating.  They weren’t.  I hoped that once we got home Wendy would improve.  She didn’t.  I remember the night I realized that she wasn’t going to get better.  She just wasn’t.

Anger:   This is often accompanied by guilt.   “Why me? Why her?  What did we do to deserve this?”  I remember walking up and down the streets of Beacon Hill being jealous of families that were enjoying the summer.  There was a woman who was yelling at her child by the “Make Way for Ducklings” statues because he had gotten his hands dirty from his ice cream cone and it was all I could do to tell her to get over it, enjoy this moment, because your kid could be in the hospital right now.  Thankfully I kept my mouth shut.

Bargaining:  This is a hard one.  It involves the hope that we can somehow avoid this outcome.   I could understand why people go to the ends of the earth to find a miracle cure for their child.   People facing less serious trauma can bargain or seek compromise.  Sometimes it works.  My father said if Wendy survived that he would quit smoking.  You get the idea.  It’s trying to find what you can do to change the situation.

Depression:  This stage can last a long, long time, and some people argue that in part of this stage, Anger comes back.  Everything feels hopeless and you feel rudderless.  All of your expectations and plans have to either be put on hold or moderated. You wonder how it can all be so hard, and why it’s so unfair, especially for your child.  You might want to find a counselor to talk through your feelings.  It’s really hard for a long time, and then at some point you realize it’s not quite as hard, and you slowly move toward the next stage.

Acceptance:  “We’ve got this”.  This is the idea of doing the best you can with what you’ve got.  Gratitude sets in and you might find yourself being happy and being surprised at the happiness. You realize that life is moving on and you’re moving on with it.

I think, though, that for parents of chronically ill kids, that there can often be another stage:

Empowerment:  This is the stage where both you and your child take the hand you’ve been dealt and play it.  When you join advocacy groups, when you allow you child to re-join sports or after school activities or when you begin to travel again.  When you do the things you love even with the obstacle, even when it’s not exactly the same. You may be a mentor to other parents of chronically ill kids, or you may write or speak to groups.  Or you might not.  Just doing the best you can is enough, and it’s inspiring to others.

Other members of your family will find acceptance at different rates.  For us, one family member stayed longer in anger, one stayed longer in bargaining.  It’s totally an individual journey, and it’s important to realize that we don’t all come to the same understanding at the same time.  It takes a really long time to be ok with your life not being what you expected, and a new normal grows and takes hold, along with real, genuine happiness and gratitude.

The other thing that I want to say is that in this continuum, you might be knocked backward into other stages or have to start all over again with a new diagnosis.  We’ve been dealing with some new symptoms for Wendy and I’ve lately been keenly aware that we might be starting this cycle all over again, but that’s OK, we’ve done it before and we will do it again.  But that won’t mean it’s not difficult, or heart breaking, or painful or nerve-wracking, it just is.

Finally….when Kubler-Ross was interviewed years later, she said that she regretted putting the stages of grief into concrete categories, because while these are common stages, they aren’t definitive.  Where is room for confusion?  For frustration?  For complications?  For disillusionment?  These things that you feel, they are normal to feel.  Being aware about them, being in touch with your feelings and being able to both experience them and express them, will hopefully help you to heal.  Be gentle with others who are on this path with you.

Empathy goes a long way in the healing process.

Picture:  A winding road in Tuscany, leading to Montalcino.

 

To Paris To Shed My Shell

Have you ever heard of the fable of the Lobster?

It goes something like this. A lobster is a crustacean. It has a hard outer shell that protects its soft inner body.  But the shell is unable to grow, so as the lobster grows, the shell gets tighter an tighter, until it is less of a protection and more of a constriction.  As a result, the lobster has to go hide from predators and shed its shell, and a new shell replaces it while slowly calcifying.  The lobster, in essence, has to regroup in order to prepare itself for the future.  I recently was reminded of the fable from a video by Rabbi Dr. Abraham Twerski, that you can watch here in ninety seconds.

In May of 2008, right before Mother’s Day, we were told that Wendy was going to need a kidney transplant.

At that point, Wendy had been in the hospital for 180 days out of 360.  We had figured out that since she was four, that it was roughly one eighth of her life.  She and I had moved closer from our home in Vermont to Charlestown, Massachusetts, to near her medical home, Massachusetts General Hospital. She was on a dozen medications that she took by mouth in different combinations every day.  She was getting insulin shots six times a day.  She was seeing doctors twice a week and a visiting nurse once a week and she was getting blood draws a little more than once a week.

We had managed to use up all of our resources and reserves, physically and emotionally.  Our parents, Wendy’s grandparents, needed a break from being co-caregivers and needed to get on with their lives.  We had friends who stayed for a week at a time to help out.  We needed more than that.  We needed to get an au pair.  So I set off in search of one.  Luckily, in Boston, there is a company called Cultural Care Au Pair, and we found a match quickly.  She would be coming a few days after the Fourth of July holiday from Russia.  Her name was Irina.

Michael and I had been under intense pressure.  He continued to work in Vermont to cover the medical insurance.  I continued to live with Wendy in Charlestown.  He would come down on weekends.  It was unbelievable how much our lives had changed from the Father’s Day 2007 when Wendy said her stomach hurt.  If you had told me what our lives would have looked like in a year from that time, I would have thought you were crazy.

Michael and I knew that we had to shore ourselves up emotionally for the next year, because a kidney transplant is no walk in the park. It was likely that our lives apart with a sick child would continue into the indefinite future.  So we both thought about what we needed to get ourselves together emotionally and we had a talk.  (You can read about how we set down ground rules early on in the journey in this blog post on communication.)

Michael wanted to take time to help his best friend from childhood move out to Vancouver.  It would be ten days total, he would go down to Maryland to help load the van and then drive it across the country and up into Canada.  Then they would unpack the truck and Michael would fly home.  It would take about ten days.  The two of them had traveled cross-country before, going to National Parks one time along the north of the country, and one time along the south, so this would be reminiscent of their trips together as teenagers.  Though the work was hard, packing, moving, unpacking, and driving in a less-than-comfortable truck, honestly, who wouldn’t want to spend ten days with their best friend as a way to re-set themselves for the hard times ahead?  The two told stories, drank beer on the roof of the truck while they watched the fireworks on the Fourth of July in Bozeman, Montana, and they joked and had a good time.  It was what Michael needed to prepare for the next medical event.

While Michael was gone, I decided that I wanted to fly to Europe for a long weekend.  I know what you’re thinking:  who actually does that?  My rules were simple.  It had to be over a long weekend, after the au pair arrived.  I wanted somewhere where I could do a lot of walking and go to a lot of museums. I wanted two non-stop flights so I didn’t spend all of my time in airports instead of the city.  I wanted a real escape, somewhere where no one knew me, where I didn’t have to tell my story, where I could just blend in and be another tourist.

The answer was Paris.

I booked my ticket for the first long weekend in August.  I used all of the points we had earned staying at the Holiday Inn near the hospital to  book a modest room at a hotel in the Saint Germain du Pres district, not far from the Luxembourg Gardens.  I was flying overnight on a Wednesday, so I would have Thursday through Saturday and fly back on Sunday to the States.  I also emailed Michael’s aunt and uncle who live in England, and they agreed to meet me for part of the time.

When the time arrived, I packed lightly.  I didn’t want to have anything bog me down.  A few skirts and shirts, a pair of pants, sturdy sandals.  I knew that Michael could handle anything, he had my parents and Irina to help.  I also knew that when I arrived back that we would be doing immediate battle with the insurance company. They had rejected our application for a kidney transplant at Massachusetts General Hospital because they had a contract with Boston Children’s Hospital.  Actually, they had rejected the application twice.  On the Tuesday when I returned we were going to be on a conference call with a review board of the insurance company along with our nephrologist who was calling in from vacation in India, another doctor calling in from vacation in England, and a few more who were in Boston.  The idea of suddenly having to transfer care to a hospital that we had virtually no contact with was terrifying, and our stress level was high.  I needed to get away more than ever.

I kissed my family, went to Boston Logan, and got on the plane.

When I arrived at Charles Du Gaulle, I bought a Paris museum pass.  This was entry to all of the major museums in Paris, without having to wait in lines.  I took the RER in from the airport to the center of the city of Paris and walked to my hotel to drop my bag, as my room wasn’t ready yet.  Then I went to one of my favorite spots:  Notre Dame.

Notre Dame is really as beautiful as people make it out to be.  Large and gothic, you can see how the architects and builders designed it to showcase the greatness of God and gain converts.  The stained glass windows are the envy of the rest of Europe.  It is simply magnificent.

One of the first things I did was stand on line to put Wendy’s name in for a mass to be said in her honor.  It was a few euros for the charge.  The woman asked her name, I wrote it down, we exchanged money, and I got a date.  September 8th.  Then I went and sat to absorb the enormity of the moment.

I kneeled down to pray, and all of the pain came rushing in, I was finally alone enough to feel all the pain and sadness and anger and fear that  I had been holding back for months.  All of the fear for the future, the relentlessness of the fear and exhaustion.  It came out in sobs, I was crying so hard that the tears were hitting the seat in front of me.  I’m certain I made a spectacle of myself.  If someone walked by they must have thought I was in mourning, and in a way I was.  I was mourning my old life, the life with healthy children and worries about mortgages and milestones and whether or not Wendy brushed her teeth.  Those normal days were over and I had known it for a long time, but I couldn’t mourn it the way I needed to.  That trip, that place, that moment was my release.

I don’t know how long it took me to stop crying, I just let myself cry my eyes out.  Finally, I sat there, relieved.  I could move on.  I could get up and start the next phase of whatever this journey was going to be.  First,  I was also ready to be a tourist.

I went to something like six museums.  I walked in, I saw what I wanted to see, I walked out again.  I saw where they kept Marie Antionette before they killed her.  I saw the Lady and the Unicorn tapestries.  I went to the Musee D’Orsay and walked around my favorite impressionists.  I saw Hammurabi’s code at the Louvre and walked along the old ramparts that had been buried for centuries.  I ate when I wanted to eat, I drank when  I wanted to drink.  I walked miles and miles and miles.  I bought a few souvenirs for the family.

I did, however, meet people in Paris, I wasn’t totally alone.  I arrived on a Thursday, and on Friday night, Michael’s aunt and uncle flew over from England to meet me.  I met them at a brasserie on the Ille St. Louis, and we had a drink looking at the back of Notre Dame.  And they took care of me as only they know how:  they fed me and took me shopping.  We walked around the Ille St. Louis, going to a candy shoppe and looking at textiles.  They took me to Shakespeare and Co and to the bridge with the locks.  They took me out for a lovely dinner and met me the next morning for a visit to the Place du Vogues and more lunch, more dinner, more light conversations.  Part of me thinks they made the trip over just to make sure that my sanity was intact.  They were clearly worried about me, and in turn, I was incredibly grateful just for their presence, someone who took the time to check on me because, quite frankly, I probably needed it.

Looking back on it, I joke that I was a lobster in Paris.  I had been  under such pressure that I needed to go somewhere, shed my shell, and start again.  I needed to be ready for the next difficult phase of this journey with Wendy, and with Michael, and with our families.  Ironically, Irina our au pair didn’t work out.  She basically had come to America to find a husband, not look after a sick little girl. When  I arrived back in the US, and after we won the battle to have the kidney transplant at Massachusetts General Hospital, Michael and I broke the news to Irina, that we didn’t think this was working out.  She, not surprisingly, was unmoved by our decision.  She never really liked us that much anyway.

My time away, as well as Michael’s time with his best friend, put us in a place where we could re-examine what was working and what wasn’t.  We prepared for the next step.  We made ourselves as ready as we possibly could. And we moved forward together.

 

 

 

 

 

 

Conduits of Care

The thing about being a parent of a chronically ill kid is that I am a storehouse of otherwise useless information.

How many milliliters are in a teaspoon?  Five.

Pizza needs two doses of insulin because of the grease, it outlasts the first dose.

Blood pressure is best checked first thing in the morning.

The only way you’ll know how much cereal your kid eats is by having a measuring cup in the cereal container. At. All.  Times.

Sanitizer is easier on the hands if it has added emollients.

One of the things I know a lot about is what we really appreciated when Wendy was sick by the people who loved us, what to do, what to  say, how to show that you care.  People often ask me for advice on this topic when they have friends who have kids in the hospital.  They wonder what they can do that is both helpful and meaningful to the family going through the crisis.  I LOVE that I can be helpful in this way, and I love that my friends think of me as the person to ask when they want to be kind and giving.  I am a conduit of care!  (So are you.)   I thought that I’d write a few things here for everyone, but I encourage you to still ask me if you have questions.  That’s what I’m here for.

Anything you do, big or small, will be appreciated.  The family going through crisis will appreciate any small effort you make to show you care.

Having said that, some actions are more helpful than others.  I break these down into two camps:  survival and comfort.  There are things you need no matter what, and then there are things that will make you feel better emotionally. Both things are important, but for some reason more people like to focus on the latter.  Let me explain:

Survival.  In terms of survival, the family in crisis has an extraordinary circumstance:  a sick kid, a hospital trip, a scary diagnosis, a prolonged illness, you get the picture.  Yet, they still have all of the added stresses of normal, everyday, average life.  When we were in the hospital for prolonged periods of time, often leaving in an emergency, we left our cats and our plants, food in the refrigerator, a house with a lawn, etc.  Then we drove four hours away and often stayed weeks at a time.  When your kid is in the hospital, you tend to forget these things, but they still exist.  We had wonderful neighbors who first would come and feed the cats and then took them home with them, along with the plants. They took turns cutting our lawn when it got too high.  The local vocational school where I worked had students come who raked and bagged our leaves in the fall. Neighbors shoveled our walkway to the front door when the snow fell throughout the winter.  They took care of our normal problems.  We even had friends who came in and cleaned the house, changed the sheets, and put the basics in the fridge when we returned.  Every time.

Then there are gift cards that are helpful, both for gas and for food.  Don’t underestimate how helpful a gas card is to a family that has to make multiple trips to the doctor.  Don’t underestimate the Starbucks card for a parent that has spent a lot of time awake around the clock.  Even a gift card to a CVS or a Rite Aid, or some other pharmacy is a help.  These are incredibly bolstering for a family in need, and keep them afloat both financially and emotionally.  My cousin came to visit us in the hospital and then walked around and bought gift cards to all of the local restaurants, including the Whole Foods and the bagel shop, knowing that eating was necessary.

Making meals for the people at home is a great idea, but keep it simple, keep it organized.  There are services you can organize through online like meal train that will help you and your neighbors coordinate who is bringing what.  To me, there is nothing more healing than sitting down with my family like it’s a normal day, even when the day has broken open and all Hell is loose.  Having a time to sit together and have a meal is incredible.  It gives you hope that someday, everyday will be normal.

Maybe that means that food gives hope.   It also gives comfort.  Which brings us to our next category:

Comfort.  This is a tough one and it’s hard for me to give good, concrete examples because everyone is different.  When the family is in the hospital, something like a blanket or a fun pillowcase for the sick child is really worthwhile.  We still have those no-sew-throws that some family members made for Wendy.  A robe and slippers if they don’t have one helps with the awkward walk to and from the bathroom.  Do not send stuffed animals, even though it’s so very tempting.  They just take up room and collect germs.

Another idea, if the child is going to be in the hospital or recuperating for a while, is new things to entertain them, not necessarily board games because they can be awkward in the hospital.  One friend brought us a balloon animal kit which was a huge hit, and another friend brought a game that involved a large die, plastic bugs with velcro, and felt “sleeves” we had to wear.  We also got the game “Pretty Pretty Princess” and if you’ve never seen it, it’s worth a look.  The idea is that you spin a spinner and receive a different piece of plastic jewelry, whoever gets all of the pieces first wins.  This is especially amusing when your husband plays, and wins.

I always appreciated a good book, but keep in mind who your audience is.  I was given the book “Eat, Pray, Love”, a book about a woman who was in a loveless marriage and had to find herself by going around the world, eating in Italy, praying in India, and falling in love.  This might have been a book for me at some other time of my life, but when I was sitting next to my daughter who was on a ventilator and more medical pumps than could fit on one stand, I had a hard time relating to this woman who seemed to have everything but was unhappy anyway, which is clearly not the point of the book.

As Michael took the night shift with Wendy in the hospital, he read multiple chapters of Harry Potter to Wendy as their evening ritual before she went to “bed.”  When Wendy isn’t feeling good even to this day, she loves to be read to.

Once the dust has cleared and the family in crisis is home, offering to watch the kids for an evening so the couple can go to a movie or get a massage, that is huge and again helps to make the mom and dad feel like things are going back to normal.

Don’t be afraid to jump in and help!  Lots of times the family doesn’t even know what they need, so don’t be shy about offering.  I love to bring a meal and sit and talk for a while, or more importantly, I like to sit and LISTEN.  Lots of time, people just want a new person to talk to, to unload on, to cry to.  Be prepared to listen.  I often think, overall, that just being there and listening is the best thing I can do for friends and family in crisis.

These are all exercises in grace, where you give without expectation of return, or even thanks.  Don’t worry, they really really are grateful for what you do, they may be too embarrassed to say it, or to say the depth of which they feel the gratitude.  Sometimes “thanks” is all they can get out when what they really mean is “Thank you for being there for me, for taking care of me, for letting me be myself for a few moments.  Thank you for not forgetting me, shunning me, leaving me to worry  through this whole mess by myself.  Thank you for taking care of the little things so they don’t multiply, all of the things I had to let go of to take care of my sick child and keep my sanity.  Thank you from the bottom of my heart.”

That’s what they mean to say, I promise.  I’ve been there.

Photo:  Lasagna, my favorite.  🙂