Cystic Fibrosis

I had a really difficult conversation with Trevor last week, one I've been dreading for years, but one that was incredibly important. A variety of factors came together that made this the time to finally address the topic head-on. The topic? Cystic fibrosis.

My nephew, Timothy, has cystic fibrosis. Timothy was only a few weeks old when he was diagnosed and our family was plunged into the confusion, pain and grief of knowing that this baby, one who was so loved, would have a shortened life with many struggles along the way. We threw ourselves into learning everything we could about CF. We went to CF benefits, fundraisers and events. We hoped and we wished and we prayed.

Timothy was three and a half when Steve and I got married in 2004. I'd done testing and knew that I carried the CF gene, so we visited a genetic counselor and tested Steve before starting our family. Fortunately, Trevor was born healthy. Timothy, then five and a half, came to meet his new cousin in the hospital and immediately developed a bond with him that has grown stronger and stronger over the years.

Trevor has grown up knowing that Timothy has cystic fibrosis and has to do a few things the rest of us don't (like take enzymes with food, hook up to a machine multiple times a day, etc), but that's been the extent of his knowledge. He's never questioned it. He just accepted the differences. In Trevor's mind, CF was inconvenient, but nothing more.

I've known for a few years that I'd need to talk with Trevor about what cystic fibrosis means for Timothy's life. It's more than a frequent cough, calculating the amount of fat in foods, and taking ocean-themed vacations (because exposure to salt air is one of the best treatments for CF). But when is the right time to tell a child what else a cystic fibrosis diagnosis means?

In our case, the time came now because Timothy is currently in Australia on his Make-a-Wish trip. Trevor knew what Make-a-Wish was, but didn't understand why Timothy would get a trip. I told him more about cystic fibrosis, that it's a serious, life-threatening condition. We went to websites together and looked back at old pictures, like the ones of Trevor visiting Timothy in the hospital. I explained everything I know, including the fact that Timothy is doing very well right now and that taking his Make-a-Wish trip does not mean that his health is worse than before. In fact, he is having the time of his life!

The other thing that happened last week that made this the perfect time to teach Trevor more about cystic fibrosis is that he began to work on his Disabilities Awareness belt loop. He made a beautiful poster with facts about cystic fibrosis, surrounded by 65 stamped roses in reds and pinks. (Click to read the story of 65 Roses.) He'll be sharing his poster with his Cub Scout den soon. 

Our family is committed to raising awareness about cystic fibrosis and doing everything we can to help researchers find a cure. Go, Team Timothy! 

For more information about cystic fibrosis, visit the Cystic Fibrosis Foundation website. You can make a donation to help fight cystic fibrosis here. For more information about Make-a-Wish, visit their website at www.wish.org, where you can also make donations. Thank you in advance for all who take the time to learn more about (and/or donate to) either organization. Your support means so much.

The First Layout of 2015

We're already a month into 2015, yet I just finished my first layout of the year. As usual, I have a pile of a dozen half-finished layouts sitting in the craft room, so I'm making the time to finish them up and get them scanned and into albums. 

Here's the layout from Trevor's 8th birthday party:

I'm glad to get this one off the desk and into the album. Knowing Trevor, it won't be long before he has his 9th birthday party all planned out! He wants a How To Train Your Dragon theme this year. I'm counting on him to come up with the clever ideas, as I'm only slightly more familiar with HTTYD than I am with Star Wars...

Twisteezwire Critters

I was browsing the Twisteezwire website while writing up my review of their Mask Kit when their Puzzle Piece Bug tutorial caught my eye. I'm always on the lookout for fun crafts using puzzle pieces! (You may recall the ridiculous situation with a puzzle purchase awhile back that resulted in me having a large stash of useless puzzle pieces.) I showed the tutorial to Trevor and he was totally onboard with the idea of making puzzle piece Twisteezwire bugs. Affiliate links below. 

We each started by choosing a puzzle piece and Twisteezwire. We followed the steps to make three sets of legs to create a basic insect. We continued with the antenna. Then we used Glue Dots to attach googly eyes. With the basic technique mastered, we were able to use our own creativity to make some totally cute (if I do say so myself!) critters. Introducing....

  

Dot, the Ladybug

(by Cindy)

To make Dot, you need a red puzzle piece, 3 Twisteezwires (red, black, and white), six red beads, two googly eyes, glue dots, six black sequins, glue, and wax paper. Make a basic bug with the puzzle piece, red legs, and black antenna. Slide a bead about 1/2 inch up each leg and twist to secure. Add eyes. Create wings by looping the white wire, sliding it through a set of legs on the underside of Dot, then forming another loop. Tear two small pieces of wax paper that are slightly larger than the loops. Put glue on the back of the loops, then attach the wax paper. Let the glue dry completely, then trim the excess wax paper away from the loops. Glue the sequins to Dot's back.

Buggy, the Bug

(by Trevor)

To make Buggy, you need an orange puzzle piece, two Twisteezwires (green and orange), six orange buttons, two googly eyes, and glue dots. Make a basic bug with oversize antenna. Thread each leg through the button holes, then twist to secure. Add eyes.

Chesapeake, the Blue Crab

(by Cindy)

To make Chesapeake, you need a neutral-colored puzzle piece, Twisteezwire (blue and black), eight blue beads, two black beads, glue dots and googly eyes. Start by making a basic bug. Add a bead to each of the middle and back legs, twisting to secure. Add two beads each to the front two legs to form claws. Cut a small length of black wire for the eye stalks and attach like you would antenna. Glue googly eyes in place.

Spinner, the Spider

(by Trevor)

To make Spinner, you need a neutral puzzle piece, tan Twisteezwire, a large black pom pom, a medium black pom pom, glue, glue dots, and googly eyes. Begin by cutting the tan Twisteezwire into fourths, not thirds like usual. Attach the first three sets of legs as usual, and add the final set of legs opposite the third set, using the same technique. Bend up the end of each leg slightly to allow Spinner to balance. Glue the large pom pom onto the back of the puzzle piece and the medium pom pom onto the front. Use glue dots to attach the googly eyes to the face.

........

What do you think? Any favorites? Trevor is already talking about the next set of critters we're going to make!

Little Passports 50 States Album - Update

Aunt Teri renewed Trevor's subscription to Little Passports for Christmas (hurray!). I'd already decided that if she didn't, we would. It's so much fun. Trevor loves it. Me too. He's had the subscription for just over a year now, which means he's about halfway through the 50 states (2 states per month). The Florida packet arrived recently, which meant he was able to complete another page in his 50 States Album!

During our epic Canada and New England trip last fall, Trevor visited four states for the first time (Maine, Massachusetts, New York and New Jersey), bringing the total number of states he's visited to 11. Not bad for 8 years old! Of the four new states, he's received the Little Passports kit for three of them so far. As you can see, he is doing his own journaling now.

We're planning a summer visit to see friends that will take us to two more states. Both are states Trevor has already learned about through Little Passports, so he is especially excited. Stay tuned!

Revisiting the Paper Quilts from the Cursive Project

Trevor and I received the coolest gifts recently from Jonna, Godmother (and Friend) Extraordinaire! Each of us received a soft, cylindrical present that looked a little bit like she'd wrapped a half-used roll of paper towels. We opened them simultaneously, as neither of us wanted our surprise ruined by seeing the other's first. 

Here's what I unwrapped:

And here's Trevor's:

We both recognized them instantly. They are fabric versions of the paper quilts that Trevor and I designed back in August! Here are our paper quilts; read more about them by clicking the link.

Thanks again, Jonna, for such a thoughtful gift! We love them!