What's an Alopeciapalooza?

Our middle daughter, Seconda, was diagnosed with Alopecia Areata at age 2. What began with a small bald spot on the top of her head grew to complete hair loss, including eyebrows and eyelashes, within six months. This is the first post I've ever written about her condition and our family's journey with alopecia. 

We just returned from our third Alopeciapalooza. What's an Alopeciapalooza, you ask? It's a weekend of fun, community, nature, adventure, hope, relief, questions, answers, friendships, and memories for children with alopecia areata and their families. It's the annual signature outreach event of the Children's Alopecia Project, and if you or someone you know has a child with alopecia areata, ask them if they've heard of it.

People come to Alopeciapalooza for many reasons. At first, we went for answers. We had stopped medical treatment because after the creams failed, the other options were worse than the disease. The last thing we wanted was to cause her more pain, including emotional pain. If we had fussed and fretted and devoted lots of energy to fruitless treatment, we would have sent our toddler the message that something was wrong with her, that she needed to be fixed. So we went for answers to our questions about wigs, and telling classmates, and dealing with teasing, and what to expect.

I'll always remember when we arrived at the registration table for the first time. Seconda was four years old, had never known herself with hair, and also never seemed to be bothered by her baldness. I assumed she had noticed her difference before, but I couldn't be sure. As we approached the table, which was staffed by some women with alopecia areata, Seconda took off her hat, slowly, and smiled. It was like she recognized herself in these women. She found her tribe. It was beautiful.

So then, we went for community (and a few more answers). I met so many families that year, and Seconda and Prima made friends. (The Man and Terza didn't come.) The new camp format of the weekend (it had been hotel-conference style before) allowed the kids to run and play, make art, go swimming, climb a rock wall, play beach volleyball, and just be kids with kids who look just like them. The kids got community, and in my search for answers to my "How do I send my bald kid to elementary school and have it work out okay?" question, I got community, too.

This year, we went for adventure. It was a nine hour drive to the Y camp in Ohio. After visiting dear old friends in Cincinnati, we made our way to camp. Prima and Seconda stayed in the young girls' bunkhouse with a counselor, while The Man, Terza, and I stayed in a family cabin with two other families. Bunk beds for everybody! Our days were spent with family style meals in the dining hall, kids rotating through camp activities like canoeing, biking, arts & crafts, archery, and zip line while parents went to the breakout sessions discussing age-specific alopecia issues, fundraising ideas, and general questions. We had great keynote speakers, including Miss Delaware 2010 Kayla Martell.

We went for adventure, and boy, did we get it! The girls revealed so much more of themselves to me. The camp staff provided supervision to, from, and during the kids' activities, so the girls made their own choices throughout the weekend. Seconda, in particular, marched to the beat of her own drummer so much that I couldn't help but grin watching her go after her heart's desires. Prima was her typically playful self with the other girls, but became more playful with us as well. And Terza, Terza, Terza. That girl took every opportunity to get on stage in front of people that came her way. I am not joking. When the camp staff entertained us with skits and songs at the campfire Friday night, she was right up there swinging and cooing like a monkey. Then on Saturday night, we had a talent show. All sorts of talents were on display, from handstands to lyrical dance to "Tomorrow" sung by an adorable three-year-old in an Annie dress. Terza raised her hand every time the emcee called "Who's next?", and when her time came, she entertained us with an original song, composed on the spot.

When the cold wind blows...when the jingle bells jing...the blue sky has white clouds...and the rainbows are going out to play...  (continues singing while dropping the mic)   .... lollipop with ice cream...and it had fruit juice in it. 

Prima and Seconda went canoeing for the first time; Terza went rock climbing. They all did the zip line, which required climbing 35 feet up a telephone pole then jumping off a platform to whiz down over a field while hanging from the line. (I didn't watch any of them do it.) They spent hours all-tolled on the jumping pillow, which is like a moon bounce or bouncy castle without walls. They pet a hedgehog and a snake. They let a tarantula crawl on their hands. They went on a night hike.

I had a hard time going to sleep the first night. Things weren't going as expected - too warm and humid in the cabin, too noisy, and there were protests from my child about bedtime. As I cuddled Terza in her bunk, I sighed and knocked my head back, not quite exasperated but not happy either. It was then that I saw a boy in the cabin waving a glowstick gleefully in front of his face. A wave washed over me right then - I am on an adventure, and I get to have it.  I'm so glad I did.

 

It's Not Summer on the Cape Without Ice Cream

I suppose this is true for any beach town, but since Cape Cod is really my only beach reference, there ya go. On our first night, we went to the Cape Cod Creamery, with their iconic row of blue and yellow chairs lined up in front, facing the main road. The kids inhaled their cones then played some game called "Categories" on the lawn while us grown-ups enjoyed our icy, creamy treats in a more dignified manner.

"Categories", which will forever appear in quotation marks unless someone can really explain this game's point to me, is like a cross between Red Light, Green Light and a couple of other ideas I think my kids totally made up. It begins with two kids on one side, and one on the other, separated by a great distance. They face each other, then the singleton calls out a category. The two others conspire in whispered tones, then turn to the singleton and barely say "OK" without giggling. The singleton then yells words that belong to the previously called-out category. When one of those words matches one of the whispered words, the whisperer who whispered that word races to the singleton's spot. The singleton simultaneously races to the whisperer's spot. They both yell "Goofy" when they arrive, and whomever yells it first, yells it first. There doesn't seem to be any winning or losing, just giggling.

So, if you're ever on the Cape and want to go to an old-time soda shop and ice cream parlor, you want to go to Hallet's. Take a look at it's charm:

It was established in 1889 and has been owned by the same family the whole time. It's been a pharmacy, an unofficial town hall, a general store, and truly a fixture in the town of Yarmouth. Sadly, it was severely damaged by a car a few weeks ago. The driver had fallen asleep and drifted off the road, crashing into the front of Hallet's store. I'm sure they'll reopen, and I hope they recover quickly.

Watermelon Rinds Are Not Just For Composting....

.....And fancy glass beverage servers are not just for serving drinks.

They make excellent pickling crocks, too. Those, my friends, are watermelon rinds. If you are from or have been to the deep south, you may already know the amazing treat of pickled watermelon rind. They're sweet and cinnamony and nutmegy and yummy. If you like bread-and-butter pickles, try pickled watermelon rind on your next burger or pulled pork sandwich. Y-U-M. 

We bought a big whole watermelon, and it took a few days to eat it. As we worked our way through, I peeled and chopped the rinds and stored them in a zip-close baggie in the fridge. When I had all the rind prepared, I soaked them in the salty ice water overnight before cooking them in the yummy spiced syrup.

They don't go in boiling water canner, so you must eat 'em, fridge 'em, or give 'em away. I haven't tried it yet, but I bet they'd make a good ice cream topping. What do you think?

Green Briar Jam Kitchen

While on vacation on Cape Cod, I found heaven. Well, canning heaven, at least. It's located in Sandwich, and it goes by the name of Green Briar Jam Kitchen. Ida Putnam created the jam kitchen in 1903, and today it's a museum and working kitchen. You can even take jam cooking classes there!

Gas burners and pots in the center of the room.

Fruit prep area

This gives me an idea!

 

Oh, I so wish we had a working jam kitchen here in Howard County! I would so definitely take a class there, or cook big batches of preserves. You know how some families have a crafter or other type of hobbyist whose hobby takes over the dining room table? My new hobby has taken over my kitchen. It would be great to leave the stovetop free for someone who likes to cook meals (hint: not me) to be able to do so. I can picture it now - drop off the kids at camp, pick loads of fruit at Larriland, eat a yummy lunch, then head to the HoCo Jam Kitchen to put up some jam or salsa or something. That's a perfect summer day, if you ask me.

It has looked like this more often than not this summer.