Month: November 2016

Happiness, All Tied Together

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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

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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.

How To Love Your Melon

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I belong to a  really unusual club. It’s a club that no one wants to be in, a club for the parents of sick kids. We see each other different places, at Family Advisory Council meetings, at hospitals, at events for bereavement or other support groups.  We don’t know each other, but often times we know what each other is going through, because while parenting is universal, parenting sick kids is select, and we often have similar challenges when it comes to obstacles and our kids.

We want our chronically or terminally ill child  to be happy, to feel like a normal kid, to interact with other kids, and to feel as well as they can feel.  We also want people to be aware of their struggle without calling too much attention to it.  We want our kids to be empowered, not embarrassed.

They are our Brave Fragile Warriors, and we are their champions in the world.

I had this incredibly interesting meeting last night, where one of the members was talking about his daughter who had passed away from her brain tumor.  The more I listened to this story, the more I knew that I had heard this story before.  After it was over, I approached the dad and asked him if a student group from Mount Ida College had come to his home in the summer.  He said yes, they had.

It’s called Love Your Melon, and I am their faculty advisor.

What is Love Your Melon?  Funny name, right?

It’s a program and company that aims to give a soft, adorable hat to every child battling cancer in America.  For every hat you buy, fifty percent goes to research and organizations created to battle childhood cancer.  The hats get to the sick kid via “Crews” on  college campuses.  I have the honor to be the faculty advisor for the Love Your Melon Crew at Mount Ida College.  These students set up tables to help bring awareness to childhood cancer.  They  dress up like “superheroes” to deliver hats to kids with cancer in pediatric hospitals around the country.

love-your-melon

The company was founded in 2012 by two college friends who decided that this was what they wanted to do:  connect college students to kids with cancer, while simultaneously giving money to fight cancer.

Here’s a video telling you more about it.

When I was talking to the dad last night, about his daughter Ava, who passed away this past June after many months battling her brain tumor, I asked him if he thought the Love Your Melon program was beneficial, if he felt it helped Ava.  He said, yes, and not for the hat.  He felt like it really was important for Ava to have the contact with the college students, to be made to feel special, to spread awareness to college students about childhood cancer.

In short, it was about the connection, not the hat.

He told me that when they had Ava’s celebration of life, that some of the students from Mount Ida’s Love Your Melon Crew came to celebrate with them.  He told me how much it meant to him that they remembered.

So, if you would like to support this group, a group that gives a hat to each kid with cancer, who supports research and non-profits that fight cancer and support families battling cancer, that connects college students with sick kids, and maybe if you want to buy a few holiday gifts, Love Your Melon is the answer.

Here is their website:

https://www.loveyourmelon.com/

Feel free to choose any college campus crew that will benefit from your purchase.  The crews work on a point system, for every hat sold in their name, they get a point.  For every point gained, they get closer to going to a pediatric hospital to give away hats to kids with cancer.

If you don’t have a favorite, or can’t decide,  you can always choose my college, Mount Ida College Crew.  They, and I thank you for your support.

 

 

An Open Letter to President-Elect Trump

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Dear President-Elect Trump,

Hi.  We’ve not been properly introduced.  I’m Darcy Daniels, from Massachusetts.  Full disclosure, I didn’t vote for you, but I still want you to succeed because you’re my President, and it will be your face that represents me around the world.  That’s the way American democracy works, and I’m a big believer in it.

You said in your victory speech on Election Night that you were going to be a President for all Americans, so I’m going to take you at your word and I thought I’d write to you about one of your first initiatives.

Obamacare.

Or as I like to call it, the Affordable Care Act.

But first, I’d like to introduce you to my daughter, Wendy.

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Cute, right?

She was born totally healthy, but she contracted a bacteria called e-coli that did   irreversible damage to her body.  It resulted in a lot of complications, including multiple organ failure and a kidney transplant.  She has spent a lot of time in the hospital, so much time, in fact that she wrote a story about it, that was turned into a cartoon, and is now being shown to sick and scared kids when they come into the Emergency Department.  She also competes in the American Transplant Games and the World Transplant Games.  This girl, she’s a fighter.  She’s tough.  She gives back to her community.  In short, she’s everything we want an American to be.

She is a real beneficiary of the Affordable Care Act.  Now I know that you ran on a “repeal and replace” Obamacare platform, so I wanted to turn your attention to some of the features that are really important to people like me, people who have worked long and hard, and who have insurance, and who pay all the premiums and out-of-pocket expenses.

The first one is the provision that allows kids to stay on their parents’ insurance until they are twenty six.  Now, I know you can understand this, you’ve got kids, and this allows everyone’s kids to go to college if they want to, find a career path, and still be able to be covered while they are figuring all of that out.  This one really is a no-brainer, and I could be wrong, but I feel like most parents like this provision of the Affordable Care Act.  We want our kids safe while they’re working to become responsible citizens, because responsible citizens pay taxes, and that’s what keeps the government working.

The second is an important one to parents like me, who have a kid with chronic illness.  This provision is that children under 19 years of age can no longer be classified as having “pre-existing conditions.”  This allows me to keep my insurance, or change jobs and get new insurance without having to worry whether or not anyone will cover me because my kid happens to go in the hospital a lot, which she does.  This is the one that causes me to lose sleep at night, because if this goes away it will be harder and harder for us to get health insurance, and it’s something we will really need.

The third provision is the removal of the cap on the lifetime insurance that companies are willing to pay for.  Because here’s the thing, Wendy started EARLY in her life with medical expenses, and through no fault of her own.  She will hit that lifetime cap WAY BEFORE any of her peers will. Then really where will she be?  Who will be able to pay for the constant medical care she will need throughout her life?

As a parent of a chronically ill kid, I’m constantly worried, worried that she will be sick, worried that I won’t be able to take care of all of her needs, worried that I will have to get creative with finances so that I can pay for her medications and medical supplies that aren’t covered by insurance.  I don’t want to worry about health insurance too.  I just want to know that I can keep it.  I’m totally fine with paying for it, I’m not asking for a hand out.  We work hard and we know that insurance isn’t cheap.

But please, don’t take these provisions away from the Affordable Care Act, or whatever it is that you’re going to repackage it as when you “repeal and replace.”

You’re in charge of a lot of citizens now, including the vulnerable ones, and there isn’t much more vulnerable  in this world than a chronically ill child.

Thanks for listening, Mr. President-Elect.

Sincerely,

Darcy Daniels

Massachusetts.