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.

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.

 

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.