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:

nicu-superman_1477867155679_6674201_ver1-0

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.

 

 

 

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Resilience, A Beautiful Oops

Penny came home from school today SUPER EXCITED.

She said, “Mom, Just WAIT until you SEE this BOOK that I got at the LIBRARY!!!!!”

She showed me the book, Beautiful Oops! by Barney Saltzberg.

The gist of the story goes like this:  Even when something goes terribly wrong, with a little imagination, you can create something that will make you smile, and with the right point of view, it is beautiful.  Take a ripped piece of paper for example, it can turn into a crocodile.  Take a bent corner  and it can be turned into a penguin.

The idea is that even when life doesn’t go your way, you make it work.

And I thought, “Oh My God, she understands resilience.”  Or, at the very least, she knows that we value it as a family.

I wear very little jewelry.  But I happen to wear two bracelets, which I never take off. I even sleep with them.  They are both on my right wrist and from from Mantra Bands.  One says, “Persevere” and the other says “Choose Joy”.  I wear them because I have to be reminded every day, and some days are harder than others.  I’ve sometimes thought of getting a tattoo, but I don’t want to think about what it will look like when I’m ninety.

To me, the combined message on my bracelets the definition of resilience, persevering and choosing joy, and this is what I try to teach my kids.

I’m not going to be some glib, everything is going to be all right, happiness peddling soothsayer. It glosses over the real hardships of life.  The truth is that being a parent is hard, being the parent of a chronically ill kid is (arguably) harder, and there are lots of things that you can’t control that will drive you crazy, make you cry, and wonder about the fairness of the world.

But in our family, you take the problems, you look at what you’ve got and you either make it work or you change it and if you have a choice, you choose happiness.

When Wendy was recovering and we were waiting for a kidney, we found ourselves in an apartment in Charlestown, Massachusetts, a full two states away from our home.  Though we had amazing, uplifting support from friends and family, not many people lived near by.   Most of our week was taken up with doctors’ appointments, visiting nurse appointments, and lab tests.  But this was also a time for Wendy to recover and grow stronger.  We had decided to not send her to the rehabilitation hospital at Spaulding, because to put it quite bluntly, it was depressing and we just couldn’t do it.  Day care was absolutely out of the question, but Wendy needed to see and be around other kids, healthy kids.  I couldn’t just keep her in the apartment watching TV.

What we ended up doing was buying family memberships to four museums:  The Museum of Fine Arts, the Children’s Museum, the Science Museum, and the Aquarium.  Every day that we had a doctor’s appointment, we also went to a museum.  I would pack all appropriate medication that she needed along with a lunch, and we would be gone for the day.

MFA lady boat

At first , Wendy was so weak that she was just in a stroller and she tired easily.  We would have patterns of things we would do at each museum.  At the MFA, we would go to the gift shop first and pick out three post cards of art work she liked.  Then we would go on a scavenger hunt and find the pictures.  When we found each one we would sit for a moment and look at it and talk about what we thought was important or create a story from what we saw.  As she got stronger we found statues and mimicked their postures. (See picture at head of blog post.)

 

At the Science Museum, we always went to see the science in the park exhibit, where you could see science in action from outdoor equipment like the swings or the teeter totter.  We would also go and see the chicks and the monkeys.

At the aquarium, we would go to see the penguins.  For Wendy’s birthday, because she had been in the hospital for so long and because she spent her birthday in the hospital, the Child Life team adopted a penguin for her, whom we named Poppy, and we would go and visit him, then walk up the corkscrew ramp, while looking at all of the sea life in the giant cylinder that was surrounded by the ramp. When we got to the top we would look for the turtles. Then we would take a ferry home from the Long Wharf.

At the Children’s Museum, we would play with the trucks or the water works.  When Wendy got stronger, she would climb the webbed construction in the center of the museum while I would sit at the bottom and watch her.

On the days that we didn’t have a doctor’s appointment, we would walk to different parks around the city.  As Wendy got stronger, she would attempt newer and more exciting structures at the playgrounds.  It was rehabilitation and education through play, and gave our days structure besides just going to the doctor, getting a blood draw, having the visiting nurse come.  We made it work.

Another issue was Halloween.  How do you go trick or treating with a diabetic kid?  For other parents the question might be, How do you take a kid with nut allergies trick or treating?  How do you keep your kid safe while still feeling like a normal kid?  Our solution at first was to go ahead of time to neighbors and give them items that Wendy could eat so that when she came trick or treating she could enjoy what they gave her. As she got older, we paid her for her candy, by the piece.  We would let her pick out 10 pieces and then pay her for the rest, which we would give away to charities, friends who didn’t trick or treat, or to the college students who studied where we worked. We had to make it worth Wendy’s while, so that she wouldn’t think it was unfair that she couldn’t eat all the candy she got.

penny wendy halloween 2011

 

Now there is the teal pumpkin project, which is an amazing solution.  Parents agree to have both candy and non-candy items, and then paint a pumpkin teal to tell parents of kids who can’t have traditional sweets that there is something their child can enjoy.  It’s a fantastic idea.

Every day we try our best to make Wendy feel as normal as possible enjoying as many of the things that non-chronically ill kids enjoy.  The target is always moving, both with Wendy’s health, her growing up, and new technologies that are on the horizon. The latest challenge has been sleepovers at other kids’ houses. But we do the best we can, with what we’ve got.  We teach our kids to do the same thing, find solutions that work.  Solve the right problem.  Be flexible.

Make it work.

Sometimes with the right point of view, the result is beautiful.