Seasons Greetings from the Island of Misfit Toys

I’m going to tell you a secret.  The holidays can be incredibly stressful for  a parent of a chronically or terminally ill child.

It’s because a lot of times we feel like residents on the Island of Misfit Toys.  You know that story, where Rudolph the Red Nosed Reindeer lands on an island of toys that are a little different. The Charlie-In-the-Box, the spotted elephant, the train with the square wheels, or the water pistol that shoots jelly.  They are toys that are different enough to be pushed to the sidelines, in favor of a more sparkly Christmas.

How do we feel different?

It’s the Christmas Cards, for a start.  The perfect pictures. The smiles. The letters that accompany them, telling of milestones and trips and accomplishments.  Don’t get me wrong, we LOVE that you are doing so well, that your kids are doing well, that you’ve done these amazing things.  But our child’s milestones might be different.  Our accomplishments, though amazing for us, seem delayed to some.  We don’t know exactly what to write about, what to share.  We feel a tiny bit of shame in this, the mix of envy and embarrassment, and the knowledge that a few of our kids won’t be around next Christmas.  We don’t want to bring you down with us, but for some of us, this is a reality.

Then, there are the families that spend the holidays in the hospital, and though the staff does its utmost to make the time special, the truth is that  it’s not home, it won’t be home, and it’s the last place that most people want to think about on Christmas.  That’s the reality.

I recently sat around with other parents of chronically ill kids, and this is what we talked about, the wanting to be happy for others, the burden of making the holidays special, and the feeling like you’re always not measuring up to the ideal.  For me, here is a small example. Wendy takes medication three times a day (besides her insulin.)  We are fastidious about giving it to her. We have a weekly pill organizer, and she never misses her morning dose.

Except on Christmas.

For the past three Christmases, she’s missed her morning dose, because we get up earlier and open presents. Then there’s a rush for coffee and breakfast, and cleaning up.  We usually realize around 10 am that we’ve forgotten.  There is always guilt with forgetting. There are parents who have kids in wheelchairs and on breathing machines.  Parents who have to do PT on their kids’ chests.  Medical care happens even on the holidays. Parents are vigilant even on the holidays.

We love our kids.  We love our life. And we love the holidays. But sometimes when we smile and say we are stressed, or busy, it’s more than that.  Sometimes it’s that we realize if we told you more it would ruin your holiday mood, and you deserve to be happier during the holidays.

If you’re really interested, ask more questions.

In the meantime, enjoy your holiday, and your family, and the season.

Happy Holidays.

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.

Support For the Holidays

There has been a news story going around, about a group of NICU babies that got Halloween Costumes.  It really will melt your heart, have a look:

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http://www.abc10.com/life/these-tiny-babies-in-tiny-costumes-in-nicu-will-melt-your-heart/344400254

It’s been rolling around in my head this weekend though, why do people go to the trouble to dress up babies who will have no memory of such an action? What motivates them to take their precious time and energy to do such a thing?  Because, really, it’s not helping the babies at all.

The answer is that it helps keep the morale up of the parents.  Imagine being a parent in that situation, waiting for your premie to gain enough weight to go home, it’s like watching paint dry.  But the world goes on without you while you’re waiting and it’s easy to feel down around the holidays because not only is your kid in the hospital, but your kid is in the hospital on a holiday.  So are you, the parent.

One year, 2007-2008, we were in the hospital for every major holiday:  Fourth of July, Halloween, Thanksgiving, Christmas, New Years, Wendy’s birthday, and Valentines Day.

I’ve got to tell you, it’s really hard to be in the hospital during all of those holidays.  I did not cry much while we were in the hospital, but I remember crying on both Thanksgiving and Christmas Day that year, because the hospital was the last place I wanted to be.  I’m not the kind of person that thinks, “It’s not fair,” but that year, that’s EXACTLY what I was thinking, sitting next to my daughter’s hospital bed while even the staff was going home for holiday celebrations.

Mostly, it’s hard because you’re helpless.  For the big holidays like Christmas, it’s hard because it means that your kid is really sick. They try to clear everyone out for Christmas.  And it is hard because you remember how nice those holidays were in past years.  The truth is that if your kid is really sick, they don’t really notice the difference, because one sick day runs into the other.  It’s the parents who keep track of the days.

For Fourth of July we saw the fireworks.

For Halloween, we had to drape Wendy’s costume over her because she had just had an abdominal surgery.  She was going to be Fiona from Shrek.

For Thanksgiving, We ate Thanksgiving in the playroom on real china that the Child Life Specialists set for us.  Wendy was unconscious.

For Christmas, Wendy got presents and a visit from Santa.  There were some special toys like build-a- bears.    We had Christmas lights in the room that we took down every day and put up every night so we didn’t get in trouble.  The nurses knew but didn’t tell anyone.

For New Years, we saw the fireworks.

For Wendy’s birthday we had a cake, no candles, because of the fire hazard.

For Valentine’s Day, there was pizza and valentines in the Family Lounge.

I know people who feel down around the holidays, because loved ones are now gone or because their kids are grown and out of the house.  I would encourage you to contact your local hospital, especially pediatrics, and see if you can volunteer over the holidays.  You have no idea what the smallest gesture can do to make a family feel better, one who has been in the hospital for a while.  I would also encourage you to find a way to go in and volunteer in person, and see the grit and determination of these kids who are fighting so hard to get well and who are resilient and kind.  You might get  a lot out of the experience as well.

Today is Halloween.  You have the time you need to contact your local hospital in time for the holidays.  Yes, we all get busy during the next eight weeks, but imagine all that busyness and having a kid in the hospital. It makes our problems look easier, doesn’t it?

If you do volunteer,  let me know about it. I love to read these stories.

Cover Photo:  Wendy, almost age 4, on New Years Day.