The Gift of Life: Could You Do It?

This Thursday, February 1st,  is the day that we celebrate as Wendy’s Kidneyversary, the anniversary of her kidney transplant, a day that changed all of our lives forever.  But we got the call about the kidney and she went into the operating room the day before, January 31st. That’s the date on all of the records. She just  didn’t come out of the operating room until early morning, February 1st.

So why do we celebrate on the next day?

Let me explain.

I can’t celebrate a day that another mother lost her child.  I just can’t do it.  Her child’s death helped my child’s life, and that is a wonderful, wonderful thing.  But I can’t celebrate on that day.  I give that day to the mother of the child, the fourteen year old boy, to mourn.  That is the worst day of her life.

And I cry with her.  I mourn.  I’m crying now as I write this. Imagine, just *imagine* losing your child.  The baby you held.  The boo boos you bandaged.  The first grade Pilgrim plays and the fifth grade choir.  Eighth grade with awkwardness and anger and smelly clothes. Even the bad days, wouldn’t you take them, than the alternative?  Wouldn’t you?

Imagine hearing that your child has died and being approached, delicately, by the doctors about donating his organs.  All the lives that could be saved.  Could you do it?

Could you?

This is Wendy’s 9th year with her kidney.  She has done inspiring things. Her life is a testament to organ donation.  In years past, I have written letters to the mother of Wendy’s kidney donor, and I have written about all of the things that this kidney has done, all of the countries it’s gone to and all of the things it has helped Wendy to do to succeed.

This year, though, I’m asking you, the person reading this, to become an organ donor, if you aren’t one already.  It takes a minute. The link is here.

Don’t make your loved ones have to make that decision, of organ donation, on their worst day.

Make the decision for them.  Give the gift of life.

And please help me to celebrate on February 1st.  Nine years!

Thank you!

 

 

 

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Taking a Transplant to School!

Dear School Nurse:

My child has a transplanted organ.  Here is what I would like you to know.

My child can get sick faster and harder than most other kids.  As you know, schools can be a giant petri dish of germs, and the best way to discourage their spread is by careful hand washing.  Please make time to discuss with the class where my daughter is about what careful hand washing looks like.  Please have the teacher commit to taking time before lunch to have each child clean their hands, either with soap and water, or with a quick spurt of hand sanitizer as they walk out the door.  Discouraging the sharing of food would be good too.

Then, please write a letter home to parents, asking them to err on the side of caution when sending their sick kids to school.  Most parents, when they know that sending their borderline contagious kid might send my child to the hospital, will be  more likely to think twice about doing so.  If you mention that you’d be happy to talk to them on the phone to help them decide, they may or may not take you up on it.  I know it’s some extra work for you, but it will probably keep the school healthier as a whole.

Offer to go into the class to talk about organ transplantation.  Ask my child how much she wants her classmates to know.  Some kids want to share everything, some kids are afraid.  But it’s been my experience that the sooner you talk about it, the faster it becomes normalized.  My child might not be able to do some sports, like contact sports that involve getting hit in the abdomen, and it’s good to have these discussions in the beginning, so my child can say, “It’s because of my kidney,” if other kids ask.

Because my child is likely to get sick and hospitalized, please help me to set up a 504 as quickly as possible, so that if she is out for more than 5 days in a row, she can get tutoring services, and if she misses a lot of school, I don’t want her to be left back a grade.

This is a lot to ask in the beginning of the school year, and I know that you have a lot to do.  But if you help to do these things early, it will make the school year go much smoother.  I like to think of us as a team to keep my  daughter as healthy as possible.  We sort of have “joint custody” over her body–I have her on nights and weekends, and you have her days.  Please take care of her.  I worry about her all the time, and I want to be able to trust you.

And please, please, please, call me if you have any questions or problems.  I want to hear from you.  I want to work this out together.

Thank you so much for taking the time to listen to me.

Sincerely,

Darcy Daniels

Happy World Kidney Day From Frank

Happy World Kidney Day from Frank!

Who is Frank, you may ask?

Frank is the name Wendy has given to her Kidney.

I don’t know why.  She’s always known that her kidney came from a boy, she’s often called it her “boy kidney”.  But for some reason, this year (after having the kidney for eight years), she decided to name it.

Frank.  (He’s pictured above in his stuffed animal plush form.)

Wendy will be celebrating World Kidney Day this year by living her normal, average day.  She’ll have school, come home, probably walk to the library, set the table, have dinner, and maybe go to the gym.  I remember when she was so super sick and hoping that someday we would have a normal life.  Well, here it is.

Some would argue that it’s not really normal.

In the past week, Wendy has had four appointments at the hospital.  Two were with doctors, one with her endocrine nurse, and one kidney ultrasound.  She handled them all like a pro, like someone who has been doing this for many, many years.  Because, she has.  In fact, both doctors commented on the fact that it has almost been TEN YEARS since Wendy originally got sick with e-coli.  They just couldn’t believe it.  A decade of Wendy.

This weekend she will be swimming in her swim meet championships.  Next weekend she will be running a 4.4 mile run for her diabetes camp.  In between she will play indoor soccer.  She’s raising money to go to the World Transplant Games in Spain in June.  This kid just keeps moving and we do all that we can to support her, along with her doctors and our family and friends.

Sometimes I feel like the luckiest person in the world.  March 9th is one of those days thanks to Wendy’s donor and all the people who love and support her, and us, by extension.

Happy World Kidney Day!  From Frank!  From Wendy!  And from the rest of us!

PS:  March 9th is a GREAT DAY to sign up to be an organ donor if you haven’t already.  Go to Donate Life America and register today!

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.