Giving Yourself Time

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!)

https://www.template.net/business/schedule-templates/24-hour-schedule/

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.

Life happens, adulting is hard, coffee helps.

I was hurrying from my classes the other night, on the way to the launch of Wendy’s cartoon at the Boston Society of Architects.  There were roughly seventy people there, all there to support the endeavor that took over two years to create, from start to finish.  There were some of Wendy’s doctors, some college friends, some neighbors.  There were the architects who worked on the cartoon, some administrative types from Massachusetts General Hospital, and other parents from the Family Advisory Council.  Wendy brought a half dozen of her closest friends, and wore her Christmas Tree hat to celebrate both the cartoon and the season.

If you told me ten years ago that this is what my life would look like, I would tell you that you were patently insane.

Ten years ago I was living in a small Vermont community, with a perfectly healthy, almost-three-year-old daughter.  I had been to Boston for two weekends in my life.  I had never heard of Massachusetts General Hospital, knew exactly one architect, had never met someone who had received an organ donation, and had only heard of e-coli from the Jack in the Box outbreak from 1993.

One year later, my almost-four-year-old was fighting for her life, on more pumps than would fit on the pole, with no clear answer what was causing this massive infection that had weakened her heart as well as all of the damage done to her other organs.  She spent every holiday in the hospital that year and we lived on and off in Boston for a year and a half in hotels, apartments and hospital rooms.

It just goes to show you that you never know what life is going to throw at you.

Now, we live in a different town, we have different jobs, we have additional friends.  I’m on the Family Advisory Council at MGH, we open our homes to strangers through Hospitality Homes, and I’ve met amazing advocates for patients and families in the world of health care.

It has been a very long road, but here are some things that I’ve learned.

Don’t pray for deliverance.  Pray for strength.

Make decisions from facts and not fear.  When you know you are looking to fight another battle, figure out what you need, and then make it happen.  That’s the reason we moved, to be closer to the hospital.  We knew that big battles would come in the future, and we wanted to be as prepared as we could possibly be.

Ask for help when you need it.  There is an ethos in place that we shouldn’t ask for help, but the fact of the matter is that we all need help sometime, and you need to be able to clearly define what you need when you are going through a crisis.  People who love you want to help you, but they don’t know how.  Help them to help you by telling them exactly what you need.

Let yourself feel the feelings, and give them a name.  If you’re scared say so.  If you’re angry, say that too.  If you’re nervous, figure out why.  Once you name your feelings, they have less power over you because when you name them you are no longer ashamed to be feeling them, and shame makes all of those negative feelings double.   Be prepared that others will be surprised when you give a name to these feelings.

Even when you are going through hell, listen to others’ worries and fears.   Really listen. They have hard times too.  Even when you are going through your worst days listen to the stresses of your friends and give them the space to express them.  That is friendship.

Be grateful, even when it’s really hard.  Find things to be grateful for.  Be grateful for the small steps.  Be grateful for the people who support you.  Be grateful for the sunrise.  Tell people how much they mean to you.  Thank people for small actions.  It will help the everyday crap that you have to slog through, because we can escape a lot of things, but not bureaucracy and bullshit.

Be open to new experiences, even when they’re hard and you are worried or scared or nervous.  I actually have to say to myself, “I am open to this moment.  I am open to this experience.”

Give back.  When you’re ready.  When you can.  With what you have.

Know that hard times are going to come.  All of our roads are bumpy.  But while I don’t believe that everything happens for a reason, I do believe that we do the best we can with what we’ve been given, and then we’re grateful for that too.

Teach your kids that these things are important, and not just with actions, but with the words that go along with them.  It encourages you to be a better person and a parent when you actively remember that your kids are watching, they are listening.

Life happens, adulting is hard, coffee helps.

And finally, I’m not sure that being the parent of a chronically ill kid ever gets easier.  It is always scary.  There is always a feeling helplessness.  The difference is, now I know it can be done, whereas before I thought it might be impossible.

That is perhaps the greatest lesson.

Happiness, All Tied Together

It wasn’t much to look at.

The creche was a simple creation of olive wood carved by an average craftsman.  Mary and Joseph, just a few inches high, knelt on either side of the baby Jesus already in the manger, all glued down to a single wooden platform.  Sheep lay down on either side of the manger and a camel and donkey were separate, meant to be placed along the sides.    Instead of golden colored and shining, everything in the box  was green and gray and slightly fuzzy.  We hadn’t taken it out for two years, and the box that held the pieces had apparently gotten wet and became a breeding ground for a devastating mold that had grown over the whole thing.

Michael and I looked at each other, not knowing exactly what to do.

My first thought was to just throw it out, it was beyond redemption, but I could tell by the look on Michael’s face that this revolting thing had to be saved.

It held sentimental value.  Michael’s grandparents bought it the year he was born in Jerusalem.  They had it all the years of his life in their small apartment in a retirement village in Westminster, Maryland.  When Michael’s grandmother died, I was pregnant with Wendy, and she had specifically said that we should have the crèche.  In fact, when we were cleaning out her apartment, it had a note attached to it in her shaky handwriting with our names on it, where they bought it and the year.

Michael’s grandparents were incredibly good with labels and history and legacies.

We hadn’t opened the box for two years because Wendy had been in the hospital the year before.   We spent every holiday in the hospital that year, but I will never forget the Christmas of 2007.  Wendy was so sick that the doctors wouldn’t discharge her, would only let us take her out for a few hours to our apartment two blocks away.  Everyone was released at Christmas, all the kids were cleared out except for the really hard luck cases.

Wendy was apparently one of those hard luck cases in the year of 2007.

The following year, 2008, we were gratefully at home.  Wendy was able to travel to Vermont, in the lovely snow, for a few short days and Michael and I were determined to have the best Christmas ever for her.  The e-coli had done so much damage that she was in kidney failure.  We were waiting for a call any day for a new kidney for Wendy knowing that it could come at any time, and Wendy, brave little soul that she was, continued to fail.

Yet, we were still so grateful to have her.

We were going to make this a happy holiday, because we didn’t know if she was going to make it to the next Christmas.  I traced Wendy’s hands and made a wreath with them.  She and I made bookmarks for everyone in the family.  We made tiny plaster ornaments and decorated a live Christmas tree.

And apparently, this crèche had something to do with all of it:  Michael’s grandparents and Wendy and happiness all tied together.  Somehow it became the symbol of the mission.

How do you clean a moldy crèche?

First Michael wanted to buff off the mold, and we found a spin toothbrush in the bathroom.  He went outside with a work shirt and gloves in the cold and buffed off as much as he could, then brought them inside.  We filled the kitchen sink with hot soapy water, we added some bleach and white vinegar and let them sit, where the glue became unbound and the figures floated to the top.

I remember thinking that the baby floating reminded me more of the story of baby Moses than baby Jesus bobbing in and out of the bubbles.

I scrubbed and scrubbed and scrubbed.   The soapy water covered my hands, my arms, splashed onto my forehead.  I was pregnant at the time, the time of my quickening, and I could feel little flutters in my belly.  I thought that maybe I should put on rubber gloves because I didn’t want the bleach to leach through my skin and hurt the baby I hadn’t met yet, but I already knew it was a little girl.

Joseph was the easiest, he had the least damage.  I put him aside on the red towel.  The baby Jesus  was next.  Floating in the water, I retrieved it and scrubbed it with the spin toothbrush, the whirr of brush making my hands a little bit numb.  Then came the animals.  The camel was in the worst shape, it needed to be scrubbed and soaked and scrubbed again.

Finally I set to work on Mary.  I really connected with her story as I scrubbed the likeness.  Pregnant, riding a donkey for days, giving birth in a stable, carrying the burden of this child and not knowing the future.  I thought, I’ve just got to work hard and get through all of this, Christmas, the kidney, the recovery, the baby.  So much to carry and no choice but to do it, because no one else could do it for me.

The scrubbing done, I had to think about what to do to make sure all the mold had gone away.  So I broke out the hair dryer and dried the pieces of wood, where they went from shiny to dull, dark to light, and they looked so very plain and ordinary, like a little kid had carved them from a scrap of wood.  Something had to be done to protect them, and I thought of olive oil.  The figures were made out of olive wood, so I thought that I could season them with olive oil.  I found  a small paint brush from Wendy’s Crayola watercolor set and sat down to paint the figures with oil and then let them sit on the paper towel to dry.

Needless to say, we had the most labor intensive crèche, decorating a desk that had been in Michael’s family for two hundred years, and I am pretty sure that Wendy didn’t notice it once.

It wasn’t our merriest Christmas.  Or maybe it was.  It was tender, and heartbreaking and gentle and sweet.  It was desperate and terrifying.

And yet it feels like yesterday. All the emotions come rushing back.

I am always reminded of this story when we pull the crèche out again and again,  every year at Christmas.  Christmas memories tend to be tied together, with the special items we pull out to decorate the house.

Happiness is tied into them.

Brave Warriors, Courageous Parents

It’s Thanksgiving week, and I have much to be thankful for.  I have found that since I started writing this blog, that I have been put into contact with lots of amazing people, who help both sick kids and their parents. One of those people is Blyth Lord, founder of Courageous Parents Network.

Courageous Parents Network is dedicated to supporting parents of children with serious or life-limiting illness.  It was started when Blyth’s child was diagnosed with  a genetic disease that is very rare and always fatal.  Her husband is an identical twin and his twin brother’s child had the same disease.  The cousins were diagnosed a few months apart and died a few months apart.  Yet, the families got through it together, supporting and understanding what the other family was feeling and encountering.  There was strength in their solidarity.  Blyth  wanted to bring that solidarity to other families, so she started the Courageous Parents Network, a series of blogs and videos that deal with different topics from diagnosis, to communication, to partnering with doctors, and self-care.

Recently, Courageous Parents Network had a Story Corps podcast event.  They had asked five different families to reflect on living with a sick child, some of whom have passed away.  They then edited the thirty or forty minute interviews  down to five or six minutes each and compiled them, so that we could listen to them together in small booths.  Some of them were interviews with parents, and some were interviews with siblings of sick kids.  All of them were raw and powerful.  These are shadows in the conversations of our lives.  These are the unspeakable things that no one wants to talk about, no one wants to think about.  And yet, these families are living them, every day.

Blyth had asked me if they could include the Story Corps interview that Wendy and I had done this past summer, and to be honest, I had to think about it.  Wendy, though chronically ill, is not terminally ill. I wasn’t sure that we would be a good fit.  Blyth assured me, however, that though the circumstances are different that the core feelings are the same, that of worry and helplessness, of finding joy in small moments, and discovering our own strength as a person and a parent.  So I agreed.

The night was beautifully laid out, with a modest dinner of sandwiches, salad and cookies.  There was an introduction given by Blyth and by a  parent who had lost a child to cancer and had also done a Story Corps interview with her husband about her daughter’s last year of life.

I have mentioned before that people have a ripple effect in their lives, and it turns out the the parent speaker and I had never met but had contact over the internet and by phone.  Her child had suffered from the same infection as Wendy and though her daughter fully recovered from that infection, many years later she was diagnosed with cancer and passed away.

However, the mother still followed Wendy on her CarePage.

In the listening booth, filled with balloons and transparent pictures, we listened to the stories of each other, and of other parents.  Tears were shed, hugs were given, and I’m not sure that I will ever see those people again but we did have this moment where we understood each other as parents.  We were a community for a moment in time.

All of the podcasts can be accessed on the CPN website, under Podcasts..  They are incredible.  Take some time to listen when you can.

This work, giving direction to parents who have seriously ill kids, is both challenging and meaningful. It is hard to talk about palliative care and hospice all the time.  It’s hard to meet people at their most vulnerable states.  But imagine if Courageous Parents Network wasn’t there, the loneliness and isolation would only compound itself.  It’s hard work but it’s good work, and I’m happy to be a witness to it, and to help it when I can.

It’s a funny thing, once you put your flag in the sand and say “I stand for making room in this world for sick kids and their families,” how many people enter your life and how many connections you make.  In this week of Thanksgiving, I am thankful for the connections, thankful for the hard work, thankful for the relationships I’ve made along the way, thankful for this blog to convey the journey, thankful for the people who read it and encourage me to continue.

This blog was a New Year’s resolution, to write one post a week. It turns out that a post a week is ambitious, and I can’t believe that I’ve almost been doing this for a year.  I’ll have to decide how I want to continue and move forward.

To be continued.

Our Kids Inspire Us

Often times, it’s our kids who inspire us.

They don’t know that they’re supposed to feel bad for themselves.  They just want to feel better so they can get back to being kids.  They bounce back quicker, not just because they are young, but because they want to move forward, they want to get past their illness.

They don’t dwell.

Even if they’ve had a crappy day, a day filled with pain and anxiety, with pokes and prods and tests and sticks, even after surgeries, or chemotherapy, or dialysis, or injury, they go to sleep and the next day they re-evaluate.  If they are better, even just a little bit, you can tell because their eyes are clearer, their smiles are wider, they want to do more things.    We as parents help them celebrate small victories, marking their progress the way we mark their height in tiny increments on the kitchen wall.  We are their cheerleaders, and they are our heroes.

SickKids in Toronto has launched a new ad campaign called “VS.” It’s a moving video showing sick kids versus their illnesses. It shows kids as knights, or prize fighters, or motorcyclists, or professional wrestlers.  It shows them beating the odds.  It is powerful because it manages to show you the steep hill they are climbing with these illnesses in a short amount of time.

Watch it here.  Have tissues ready.

The picture I’ve posted above is of Wendy.  Here, she is four years old.  She had spent over 100 days in the hospital, she was taking 14 medications in different combinations, every two hours.  She was on five blood pressure medications, and she was getting up to eight shots a day of insulin. You might not recognize her because she had chubby cheeks because she was in kidney failure and one of her medications made her grow extra hair all over her body.   But just look at that smile.  That’s a kid who still played on the playground, climbed up trees, swam in the pool.

We just worked the medical stuff around her.

The other night Wendy and I were lucky enough to be invited to an event for the hospital, called the Storybook Ball.  At it, there were many people who had heard of her video and came up to her, both to tell her that they had cared for her as a patient, and that they were inspired by her video.  It couldn’t have been possible without the Architectural Firm Payette, who led the way through the whole cartoon.  They utilized all of their extra talents, the ones they don’t use every day, to create this video.  Wendy inspired them, and they created an inspirational work.

They have written about the video from their perspective, and you can read that on their website.  It is fair to say that it is impossible to thank them enough.

One of the sweetest moments since the release of the video last week, was a short email from an Emergency Room Attending Physician.  She wrote to say that she was already using it with her patients when they arrived and that it seemed to be entertaining and calming to them.

It’s so amazing to know that after all that time, after all that work, that it’s going to make a difference in the life of kids who are in pain.  It’s actually working.

This kid inspires.  Lots of kids inspire.  They teach us to keep moving forward.

I’m going to end this rather short post with one of my favorite quotes, one that reminds me of lots of kids like Wendy, lots of Brave Fragile Warriors:

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
Mary Anne Radmacher

 

You Are Here! With Wendy!

The Cartoon has been completed and sent to the hospital!

(If you don’t know what I’m talking about, you should read the #projectW blog post first.)

After over two and a half years, through multiple drafts, multiple meetings, and multiple mediums, we have a finished product that will (hopefully) benefit young children and their parents.

Picture this.  Your kid gets hurt, to the point where you need to go to the emergency room.  Your child is in pain, and is scared, and is nervous.  Do you know what is going to happen?  Probably not, because not many people spend a lot of time in the Emergency Department.  So you as a parent are also stressed and wondering what is going to happen.  Most stress in the hospital happens in the waiting room of the ER.  So how can that be alleviated?

Wendy and I wrote this little story with that in mind, giving an introduction to the Emergency Room and to the hospital in case the child gets admitted.  It runs about nine minutes long, enough time to get settled and have your questions answered.  It also gives you some suggestions on how you can prepare yourself for when you meet the doctors.  You can write out what hurts, when it started, what you’re worried about, how you feel, and it will get the conversation going more quickly.

So it’s designed to alleviate stress and foster communication.  Imagine if all hospitals worked on ways to incorporate these things into their care scheme.  We had whole teams on this project, both in the hospital and at Payette, an architectural firm that specializes in hospitals.  In the hospital, the Family Advisory Council brought together a group of experts to comb through the script.  There were doctors, nurses, social workers, and child life specialists, who all added their advice and counsel.  Then at Payette, there was another whole team of creative people who put it together.  There were animators and musicians, people who were good at the storyboarding and composition.  There were people who spent Saturdays recording Wendy’s voice and teaching her some elocution so she could enunciate well.  They made sure they included Penny in one of the pictures (that’s Penny getting the thermometer over her forehead!) and they included Wendy’s stuffed animal Teddy who has been through all of the hospitalizations with her.

And get this, all of these people did this out of the goodness of their hearts.  Nobody was paid for a moment of any of this, through months of preparation, meetings, and work.

They did it because they thought it was important.

Think about it another way.  Every time you go on an airplane, you get instructions on what is going to happen during the flight, including what might happen in an emergency.  Do you get the same instructions when you go into the Emergency Room?  Why not? Wouldn’t you feel better, as an adult, if you did get some instruction or information while you were waiting to be seen?

Now imagine how much scarier it must be for a kid to be hurt and worried.

Here is my hope.  My hope is that this post and video go wild, that it helps thousands of sick and scared kids, that it inspires other hospitals to do the same thing.  I hope it encourages collaborative efforts because they are important, not because someone is going to get all the money or all the credit associated with it.  My hope is that there are fewer sick and scared kids, but when they arrive to Emergency Departments around the country that they will be given an introduction on what they can expect so they won’t feel so lonely and vulnerable.

Please watch this video.  Please think how many people put their hearts into this production.  Please share it widely.

https://vimeo.com/186454486

Thanks to everyone for your support through these efforts, including your kind words and suggestions.  Thanks for not letting me give up on it.

I asked Wendy what she thought about the whole thing, the more than two years, the different iterations, the meetings, the pictures, the recordings, and she just said, “I think it’s pretty cool and I think it’s going to help a lot of kids.”

She said it better than me, and in fewer words.

That Time We Did StoryCorps

I had this silly idea: Wendy and I should do StoryCorps!!!  It is the NPR and National Archive Project that allows for loved ones to interview each other on any topic they choose.  Some are chosen for the Friday morning slot on NPR, and all of them have the opportunity to be housed in the National Archives.  As a historian, I love this for a number of reasons.  Wendy and I would have our voices in the National Archives.  She could take her grand kids to hear it someday.  And, if you had the chance to hear your grandmother’s voice again, wouldn’t you take it?

I also thought it would be a good chance for us to connect and talk about her illness…..You know, the thing she’s been living with for the past nine years.  We often talk around the subject, or it’s a part of our lives like the furniture, but we don’t often just open it up and examine it.

I knew we were going to be in Vermont during the last weekend of August, after Camp Sunshine, to see my father in a dinner theater/murder mystery/town library fundraiser that was being held in the North East Kingdom.  For those of you who don’t know, the North East Kingdom is the northeastern region of Vermont, which has its own eccentricities, a thicker than usual Vermont accent, and a distinct mix of French Canadian customs.  My parents live a few miles from the Canada border. I love it there for all of the above reasons and many, many more.

The thing about StoryCorps is that you need to register ahead of time and put down a deposit, which I did.  I chose a time the day after my father’s event in Burlington, Vermont.  When I did, I wrote to Wendy, who was away at Diabetes Camp, to tell her.  She misread the email from me and kept calling it “StoryCrops” instead.

So here I had this opportunity that I didn’t want to waste, and I wondered what we would talk about.  I didn’t want it to just be about her illness, I also wanted it to be about her resilience, how the illness is just a part of her, not the whole her.

As per the StoryCorps website, we wrote down our questions ahead of time.  We agreed that we would ask each other three questions, with follow ups.  My questions were:

  1.  What do you already know about your illness?
  2. How often do you think about your illness?
  3. What do you want people to know about you when they meet you now?

Wendy had written down her questions, and she shared them with me too.  Her questions were:

  1.  How was I different between when I was born and when I went into the hospital for my kidney transplant?
  2. What was it like for you guys while I was in the hospital?
  3. Will I ever be able to do normal things like other kids?

It was at that moment I knew that I was going to need a box of tissues to get through this interview.

The morning of the interview came, beautiful in the Northeast Kingdom, the leaves just starting to turn, the blueberries and blackberries just about finished for the season.  We left my parents’ house early because it was about a two hour drive to get to Burlington.  We parked right at the parking lot by the ECHO science center, right on Lake Champlain, with the ferry docks just before us.  The little StoryCorps airstream camper was waiting there for us, but we grabbed lunch first, walking up to Church Street, a cobblestoned pedestrian zone, complete with graffiti that still celebrates Bernie Sander’s magnificent, iconic hair.  We ate ramen and wondered if it was going to rain.  I was nervous and I could tell Wendy was too.  We both have a way of growing sullen before we’re about to do something that stretches us.  We’re not fun to be around, but Michael and Penny continued on like nothing was the matter, making their own plans for what they were going to do while we were recording, mostly going to the lake and playing Pokemon Go.

Wendy and I had paperwork to fill in.  I did most of it, having her sign at the end.  We arranged our questions, and when the moderator came to get us, we were ready.

The mobile sound studio was basically a fast food booth with two good microphones.  Wendy and I sat at either end and got ready.

And you know what?  It was really good.  We had a good conversation, a conversation I want to be recorded, one I want her to remember.  We talked about her illness, and her resilience.  I answered her questions as best I could.  I only cried twice.

It was odd, some of the things I told her, that I had never told her before.  I told her that she coded, and then asked her if she knew what that meant, and then I had to describe it.   “It’s when your heart stops.”  I told her about the boy who lost his life and she now has his kidney.  I told her some good stories and some sad stories.  I am proud to say that I held it mostly together.

We were given a CD of it when we left.  I think I’m going to put it in our safety deposit box.

I’ve included the interview here in case anyone wants to listen to it.  It’s roughly thirty minutes long, and it’s uncut.  It’s more like a podcast, really, something to listen to while you are driving or doing other things.  I could only convert it to a YouTube Video, so it just has the picture from the top of this blog post and the audio playing along with it.

https://www.youtube.com/watch?v=h7SGQCIpvxc

But I really do love the richness of it.  And I’m so glad that we did it.

I’m not sure how Wendy feels about it, or will feel about it in the future.  She was glad it was done and that we went for Maple Creemees afterward (another Vermont tradition.)

14080053_10209100602328912_1944994776563715061_n

If nothing else, it’s something that will always be there for her, even when I’m not.

 

 

 

 

Understanding, But Not Sharing, Despair

I want to get this blog post just right, and yet I’m afraid that I will fail miserably.

But I’m going to try.

I read today about the Short family, a family from Pennsylvania who died of an apparent murder-suicide.  They had a chronically ill kid, a child who had received a heart transplant.  They had been featured in their local newspaper when their daughter Willow received the heart. The story was hopeful, it was upbeat.  There was a future thanks to a generous donor.  People like to think of it as a happy ending, but in reality organ donation is only a beginning.

A year later, the same family was featured in a New York Times article, detailing how hard it is to get the anti-rejection drugs compounded and filled, where it shows a picture of the mom dosing up the medicines, which by the way are the exact same medicines my daughter takes.  We have shared the same terror of worrying that you are going to run out of the medication that is keeping your daughter alive because of some stupid rule made by either the pharmacy or your insurance company.

In fact, up to this point, I know exactly how they feel.  Scared, hopeful, struggling.  There’s not a lot of place in this world for a sick kid.  I’ve said that for so many years now I feel like a broken record.  Not a lot of place, so parents of these kids keep fighting.  Fighting for prescriptions, fighting for 504s or IEPs in school.  Fighting for doctors’ appointments, fighting to be heard by doctors and nurses, by other hospital staff, by pharmacies and insurance companies.  Giving the thumbnail version of your child’s illness to every new person on the phone, every health care worker you meet, every time.

It’s exhausting.

And yet, none of us know what we sign up for as parents, and we have to move forward.  We are not just caregivers, but nurses, social workers, dieticians, pharmacists, and medical managers.  No one is going to do it for us, and no user manuals are included.

There are other kids in the family, kids who might not get as much attention as they deserve because the parents have to deal with the sick kid, the emergency, the crisis.  They are unwitting victims of the tragedy.  That adds pressure, too, the fact that you know you’re not able to be the kind of parent you want to be to all of your kids because there simply aren’t enough hours in the day.

There are stresses with work, normal stresses, but nothing more stressful than the idea of losing your job, because you need those health insurance benefits more than anything else.  So you make fewer waves even if something might be wrong because you can’t afford to be unemployed.  There are sacrifices you make, as little as sleep or as large as a professional life, in service to the illness and the medical needs of the chronically ill child.

All of these problems contribute to difficulty in a marriage.  You promise to love, honor and cherish when things are at their brightest and the future has all sunshine and rainbows, but stress, bills, worry, and problems are unrelenting.  You are constantly afraid that the delicate balance you’ve constructed will get tipped again with an emergency. You are waiting for the other shoe to drop.

Damn, it’s really hard.

The mom in this tragedy blogged about her struggles with PTSD, from dealing with her daughter’s medical issues.  She talked about her survivor’s guilt, knowing that another child died while her child lived.  I can personally attest to that guilt, and have blogged about it before in my piece, Dear Mom of My Daughter’s Kidney Donor.  It is a unique and exquisite combination of gratitude and guilt that parents of kids who have received organs from deceased donors share.

Now there are five dead bodies, six if you include the dog, in a murder-suicide. A family that seemed very public about their struggles, struggles that I share as the parent of a chronically ill kid.  And I feel so many emotions connected to it.  Anger at the futility of it, and anger for the donor family too.  Sadness, a bottomless sadness for the family.  Horrible unrelenting understanding at the dark side of the situation.   Gratitude for the love and support from my family and friends, because through all of the many years now I have never, ever felt alone.

Because the truth is, that while there’s not a lot place in this world for sick kids, there’s not much place in this world for their parents either.  It’s only through the personal connections you have and make that carry you through the hard times.  It’s knowing you’re never alone, that there’s always someone there to listen, laugh with, or help you problem solve.  It’s combating the feeling of isolation with the knowledge that there’s always someone there for you, and you are there in return for them.

Hug the ones you love today and thank them.

My deepest sympathies and condolences to those who knew and loved the Short family.

The National Suicide Prevention 24 Hour Hotline: 1-800-273-8255

 

Diabetic Misadventures In Italy

I love coming back from vacation and telling my friends and family about it.  Ok, I don’t really love coming back from vacation, but I do love sleeping in my own bed, petting my kitty cats and seeing friends that I’ve missed.  This year was a very special trip to Italy and its large southern island of Sicily.  While there, we visited with family and friends, we returned to the site of our marriage fifteen years ago, and we saw amazing places along the way.

Upon our return to the States, I tell our friends and family about swimming in the Tyrrhenian Sea, about eating at the same restaurant we did on our wedding night.  I talk about the flavors of Gelato, beautiful candy and earth colors of them lined up along the freezer, and of choosing new flavors like jasmine or pistachio-chocolate or green fig.  I tell them about the massive Greek temple ruins that the girls clambered along, about the graceful Baroque churches, or about the bell-towers or domes we climbed to get the best view.  I might tell them about the harrowing drives along the Amalfi Coast, with narrow roads hugging the cliffs or navigating traffic in Sicily where the street signs and traffic lights are more like suggestions than laws to native Italian drivers.  Maybe I share stories of encounters with the locals, like the sausage man who threw rings of salami in the air to the kids and persuaded us to buy a link as long as my seven-year-old’s arm.  These are the stories I tell them.  These are the stories that they want to hear.amalfi coast

But vacations are not all wonderful moments, and when you have a child with special health care needs, you not only have to plan more, but you have to be ready to roll with the punches when they come along, and that’s all a part of the journey, but not a part anyone wants to hear about.

My twelve year old has multiple health problems, but one of them is that she is a type one diabetic, which means that she cannot produce her own insulin to digest carbohydrates.  We have to give her insulin with every meal based upon what she eats so that she will stay healthy.  This has to be given subcutaneously, or under the skin, in order for it to work.

The first moment of terror for me this vacation was when I realized, suddenly, that we had foolishly forgotten the extra insulin for my daughter at home.  We had enough for a week, but we would be away a few days longer than that.  Calls were made to our insurance company, and we discussed overnight shipping, ice packs, and reliable addresses.  This didn’t sound like a good option.  So I learned how to say in Italian, “My daughter is a diabetic, and I would like to buy some more insulin,” Normally, my Italian is limited to restaurant menus and directions to the WC, so this was a stretch. We were in a tiny hill town called Castel Gandolfo, some twenty miles south of Rome, it holds the summer palace of the pope and contains the dairy cows used to make his special milk.  It sits on the edge of an old volcanic crater that now has a lake.  Our apartment looked out over the lake and we could walk the whole circumference of the hill town in under a half hour.  We went to the first farmacia, the Italian word for pharmacy, with a green fluorescent cross outside its door, located in the shadow of the summer palace. The pharmacist understood what I was trying to say, but told me in Italian that he didn’t have what I needed, but not to worry, other farmacias would, I just needed to keep looking.  Ok, onto the next stop.castello gandolfo

This was the town of Amalfi, when fifteen years earlier my husband and I got married in the presence of a handful of close friends and family.  We had planned to have dinner at the same restaurant as we did on our wedding night, so we arrived early to the town, walked around and waited for the restaurant to open.  I spotted a farmacia tucked away in a little square.  Amalfi is a seaside community, with steep cliffs and rocky beaches, and I was standing in line at the farmacia with beach goers who had gotten too much sun or mothers that needed more formula for their babies.  But luck was with me, the woman at the farmacia produced what I needed:  a vial of Humulog.  I finally was able to relax knowing that we could take care of our daughter for the whole vacation, and get insulin as we needed it.

noto dome

Which was good, because we needed it again, in a more dire way.  My daughter wears an insulin pump, and we were in the small Baroque town of Noto in south east Sicily.  We were admiring the large cathedral in town that was showing off its new dome, because the old dome had collapsed in the 1990s and it had just been reconstructed.  The church was beautiful, clean, cream colored, with gorgeous statues along the walls and spacious pews making the whole church feel light and airy.  When we heard the high pitched alarm, we knew immediately what it was, Wendy’s insulin pump had malfunctioned, and needed to be replaced.  I sat in a corner of the church looking at a statue, getting out the medical supplies, and making a new “pod” of insulin so we could put it back on Wendy.  That involves disconnecting the old pump, filling a new one with a large syringe and a vial of insulin, making sure it works, then re-attaching it, and turning it back on.  I wondered if anyone was going to stop me with the large medical bag and beeping equipment, but no one did.    I filled the new pod with the last of the insulin, and then I handed it to Wendy to apply it in a bathroom with an alcohol pad.  Normally I would help her, but Italian bathrooms are notoriously tiny, so she did it herself.

We walked around the lovely town thinking we had dodged a bullet, climbing the bell tower and looking at the magnificent view, but when we found a local trattoria and ordered our dinner, we noticed that Wendy’s blood glucose was too high and gave her a bolus of insulin before dinner.  It didn’t work and she went higher, so we gave her another bolus, but that didn’t work either.  Something was wrong.

It turns out that Wendy didn’t apply the new pod well to her skin and it wasn’t working.  I had used the last of the insulin on the new pod, and we had more in the refrigerator back where we were staying, an hour away.  We were with another couple, a childhood friend of my husband and his family, and we had all visited the town together, had dinner together, and we had promised the four children gelato if they did well in the restaurant.

single gelato

The problem was that Wendy’s glucose was too high to go untreated and give her gelato too.  It would have sent her sugar up to dangerous levels.  But all of the other kids were expecting gelato, in fact, the town of Noto is supposed to have the best gelato in Sicily.  We couldn’t tell them just wait while we drive an hour to get more insulin, reapply a new pod, hope it works, and drive back another hour.  It was late, it was dark, and the kids expected the best gelato in Sicily.

An option could have been to let the other kids have gelato but not Wendy, but honestly, that would be a scarring memory for her, and while we want her to know that she is extraordinary, we want her to know that she is normal too, that she can do normal things, just like the other kids, and that includes sampling the best gelato in Sicily.  Imagine watching your friends all eating gelato and you can’t at the age of twelve.

Now tell me what you would do as a parent.

Farmacia Italy-746316

So we went to a farmacia in Noto.  I spoke my sentence in Italian.  The first one didn’t have a vial.  We walked to a second one, and thank God, they did.  We opened the box, opened the vial, pulled out an insulin syringe that I also happen to have with me in the medical bag, calculated what she would need to give her to both reduce her glucose and give her insulin for a gelato too, and we filled the syringe, gave her a shot in the arm right there in the farmacia, admist little boys with tummy aches and people who needed band-aids, handed the used syringe to the pharmacist to dispose of safely, and we left the store.

Then we walked to the restaurant with best gelato in the world and ate it.

And it was delicious.

After it was all over, after the alarm, the new pod in the church, the dinner, the two farmacias, the injection and finally the gelato, it had taken the better part of the afternoon and evening, just for one little girl, just for one diabetic, just for one vial of insulin, just for one cup of gelato.

And what was the best part of the day for me?  My twelve year old, when it was all over and we were walking back to the cars after the gelato, ready for the drive back to where we were staying, took me aside by the arm, kissed me on the cheek, and thanked me for going through all of that.  She understood the effort it took, and she was grateful. That’s what I’ll remember, not how hard it was, but how much she appreciated being able to be just one of the the other kids joking and laughing and eating the best gelato in Sicily.

This is not a story I’m necessarily going to share with my family and friends when I get home.  Why not?  It’s not exactly what they want to hear.  They want to hear about the swimming and the churches and the beautiful art, the stories of the crazy drivers and the marketplace hawkers.  They don’t want to hear about the hard stuff, the worry, the difficulties.  Vacations are supposed to be fun, right?

But to me, this isn’t just a vacation, it’s showing my daughter that her medical difficulties can be overcome, that problems can be sorted out, even in another country, even when we don’t speak the language.  That if she really wants something, we will find a way.  That she shouldn’t be held back by the difficulties, but should look at them as challenges to be worked through.  Yes, it’s a beautiful location to learn this lesson, and yes, we are lucky that she’s healthy enough to do the travelling in the first place.  But to me, the travelling is showing her that solutions are possible.

The rewards can be sweet.

Ripple Effect

Have you ever heard a story that just stays with you?  Something that hits at your core, that makes you think about it, and re-think about it, and connect to it, and share it.  Maybe you have stayed in the car a little longer in a driveway because you are listening to “Story Corps” on NPR.  Maybe it’s something you’ve read on facebook.  Sometimes, you don’t realize how much a person’s story means to you, in your own journey to understanding and recovery from a diagnosis or the diagnosis of your child.

This recently was brought to my attention when a woman asked to be my facebook friend.  I was pretty sure I didn’t know her, had never met her, but there were a lot of people I had met at the American Transplant Games, and many of the mutual friends she and I had in facebook were those same people I had only recently met in Cleveland.  So I decided to accept her friend request and see who she really was.

What I didn’t know is that I had been reading her blog posts for over seven years.

Her daughter, Lacey, had gone through two organ transplants, both a heart and a kidney.  The heart transplant happened when Lacey was a baby, and after many years of immuno suppression (which isn’t great on the kidneys) her kidneys gave out too.  Lacey’s brother donated his kidney to her.  I had read all about it on their CarePage.

CarePages are a medical blog where you can update your loved ones about your condition. There are other ones like it, the most popular being CaringBridge.   We had been blogging about Wendy’s illness from the first week that we were at Massachusetts General Hospital.  It was helpful because it kept everyone updated without having to tell the same story over and over again.  It also was therapeutic for me to take stock of the day in the evening and determine what had gone well and what hadn’t.  In a hospital where certain events happens quickly between long periods of waiting, it was helpful to think through every day to process it all and write about it for our loved ones.   It was also bolstering because our loved ones could write messages of support for us and for Wendy at the bottom of every post, carrying us through to the next day.  There was an option to keep it private, to have people ask to join the group, and initially that’s what we did, kept it closed for only family and friends.

At the point where we were told that Wendy was going to need a kidney transplant, we had never met anyone who had gone through organ transplantation before, so I searched in Carepages and found Lacey Wood’s site.  It’s called LuckyLacey, and it told not only all about her journey as a heart transplant patient, but also as a kidney transplant patient.  It told all about her competitions in the American Transplant Games and the World Transplant Games.  It talked about her college that has a special section for kids with transplants who are going through various stages of transplantation so that they can get the best care they need while still going to college.  I learned so much from this site, that there was a warm, caring transplant community that connected each other to the best care and resources, that there was a celebration of life and living.

At a time when I was very scared, this blog especially gave me hope.

It also showed me what was possible for Wendy.  We never would have known about the American Transplant Games, or the Transplant Winter Camp, or the Chronic Illness Initiative at DePaul University.  We learned though Lacey’s journey and through the generosity of her words in her Carepages blog.

Her blog made me re-think our blog, WildWonderfulWendy.  What if our blog about HUS and kidney transplantation helped someone else the way that LuckyLacey helped us?  Michael and I talked about it and decided to make Wendy’s blog public.  

And now, years later, I’ve started this blog.  I outlined why I decided to write it in the first place in my first post, Brave Fragile Warriors.  I realized that being the parent of a chronically ill kid can be incredibly isolating.  You have so many feelings and not a lot of people who can relate to you.

We never know what impact we have on another’s life.  We don’t know what our ripple effect is.

When Lacey’s  mother contacted me to be my friend on facebook and I realized who she was, I sat down and wrote to her to let her know how much Lacey’s blog helped me through the fear and isolation of being the mom of a kidney transplant kid.  Otherwise she never would have known her own ripple effect.

It’s so important to share these moments, so other parents know they are not alone.  It’s equally important to share with others how much their stories touch our hearts, so that they may continue to write.  We are many stories, but the Same feelings of helplessness, fear and love.

Thanks for reading my stories. Please share your own, in the comments below or with your own blog and then let me know so I can read them.

Forward together is better than forward alone.