:: a happy nest ::

barn bash.

This weekend, we ventured to the Starlight Meadow, just outside Burlington, NC. We went to attend the inaugural Barn Bash, benefiting the Cystic Fibrosis Foundation.

My sister-in-law and a couple of her lifelong friends organized the event in honor of her daughter - my niece - Caroline, who has cystic fibrosis (click on the link in Caroline's name to read about the day to day management of cysitic fibrosis - though Caroline now has a vest to administer her chest physical therapy). 

It is so important for the CFF to receive donations because the CFF receives no federal dollars for research or development of a cure. $.90 of every dollar donated to the CFF goes to REASEARCH to develop therapies that help manage CF and hopefully will one day cure CF entirely. 

The inaugural barn bash was so much fun, I can hardly wait until next year. There were about 85 people in attendance this weekend, and we're hoping this event will grow each year. It was a good old-fashioned good time, with the added (and most important!) benefit of raising money to save my niece's life.

The setting was just perfect - a gorgeous meadow filled with buttercups, a charming barn, and a sweet little gazebo just down the hill. And the weather could not have been better. 

There was live music - bluegrass and funk,

dancing,

and great food. And cake!

There were tons of activities for the kids:

a waterballoon toss,

sack races,

and my brother (Caroline's father) had the idea to make kites and flags from sticks we found and fabric strips I had brought for the kids to use to make bracelets.

The best part of the evening was seeing Thea with her cousins.

Since Caroline has cystic fibrosis, it is especially important that she not be exposed to any germs or illnesses. Unfortunately, over the past year, someone in our family has been sick every time we've had a visit scheduled.

But these three connected just like no time had passed. Thea and Caroline spent a good part of the evening hand in hand.

I hope these two have lots of tomorrows. Every moment is precious.

 ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ 

I hope your weekend was filled with a little bit of magic too.

 

mountain magic.

On Friday, we headed up to the mountain cabin of our dear friends Tom and Judy. Their wonderful cabin is in the Allegheny Mountains, just outside of Franklin, WV.  It has been nearly four years since we visited - we hadn't been since the very beginning of my pregnancy with Thea.

The landscape is so dramatically different from ours here in the city - and I had forgotten just how breathtaking it is. From the leggy trees in the valley to the gorgeous ferns and dappled sunlight covering the forest floor.

The mountain laurel was in bloom, and was quite a sight.

And in between all of the woodland beauty are incredible bucolic scenes.

There are endless opportunities for exploring. As she grows older, I look forward to broadening and lengthening our adventures with Thea in this magical place.

We went for several adventures on Tom and Judy's gator, which made it easier to travel a bit further from their cabin. Thea even got to drive with her dad.

I'd say someone was having a good time.

We saw an entire family of deer, including a "teeny-tiny baby" (Thea's words). We filled up our water bottles with cold water from the mountain spring. And Thea collected endless treasures in her basket.

She continues to help me find joy in even the simplest of things. Children are so magical!

We were so fortunate to spend the weekend with not only Tom and Judy, but our friend Jing Tao, who is visiting from China, as well as David and Anita, who came all the way from Houston, TX. Jing Tao is such a kind, gentle, and curious soul. It is such a gift to be in his presence. I had long talks with David, whose son John died in September from cystic fibrosis. Anita spent hours on the porch knitting and sewing, and Thea worked on her very first sewing project.

Thea was totally smitten with "Miss Anita" who spent so much time showing her all of her knitting projects and letting Thea feel all of her different yarns. She even made her a special bracelet and gave Thea a piece of wool she had felted. 

We experienced terriffic thunder storms, and beautiful sunsets. I was completely taken with the incredible light.

While we returned home more than a little exhausted, I still feel completley full from the quiet, the adventure, and the family time this mountain retreat offered us.

I am so grateful for this time, and for our generous friends who opened their home to us.

 

 

65 roses project : daily life.

my darling niece Caroline - 18 months and living with cystic fibrosis

I wanted to share a little bit about what daily life is like with a child with cystic fibrosis. Recently, my sister-in-law wrote about Caroline's daily routine:

A normal day these days consists of a morning and evening breathing treatments, which involve a round of albuterol to open her airways (10 minutes) and then 15 minutes of nebulized hypertonic saline followed by 15 minutes of Chest PT (when Caroline is being cooperative!). I was joking with her doctor today that every CF parent should be given a t-shirt that says "I beat my child at least twice a day and three times if they're lucky!" Yes, we pound away on her little chest for a good 15 minutes a session to loosen up that mucus and keep it from settling in and providing a breeding ground for bacteria. We increase these sessions to 3 or 4 per day when she's got a cold or sick and I find myself pounding on her little chest in the middle of the night if her coughing keeps her awake.  

 

Caroline continues to take pancreatic enzymes (about 16-20 pills per day) to help her digest fat and gain weight and as a result she is over the 50^th percentile and significantly bigger than her brother was at this age. The reason this is important is that kids with CF who are over the 50^th percentile are healthier overall and have more reserves to fight infection. So, we work hard to keep her eating good fat, lots of calories, balanced with really nutritious foods that help build her immunity and keep her strong and able to fight off little bugs that come her way. 

 

We also spend about 15 minutes each day sterilizing her breathing treatment equipment. Since one of the most aggressive bacterias for CF patients is waterborne and naturally occurring, her nebulizer parts have to be washed, rinsed, sterilized and completely dried before using.

 

The daily drill isn't bad. It's just become routine for us. It's made easier by people like Camille (who cares for Baker and Caroline while their parents are at work) who takes on one treatment a day so that I can get going with work as soon as she gets here. It's made easier by the family who have stepped up to learn how to do the treatments and sterilization to give us a break once in a while. We could not do it without them.  

 

We spend at least one day per quarter in Chapel Hill, meeting with her Pulmonologist, Nutritionist, Social Worker to help us navigate the waters of insurance issues, and Physical Therapist who helps us make sure we're being as effective as possible with her Chest PT. Additionally, any time she's been sick for a while, we make that 2.5 hour drive to see her doctors.  

 

It's precious time each day in a 2 career, 2 child home that we'd love to spend in other ways and that I am sure Caroline would much rather spend playing or running around, but this is the only way we can spend that time. And we wouldn't have it any other way. 

We were lucky that Caroline's CF was discovered soon after her birth. She was able to start breathing and physical therapy treatments, as well as enzyme therapy right away, and I feel confident that this is part of what has kept her so healthy.

* * * * *

The 65 roses project etsy shop is open. 100% of sales will be donated to the Cystic Fibrosis Foundation. As a reminder, $.90 of every dollar donated to the CFF goes to RESEARCH to FIND a CURE for CF.

65 roses project : update

My brother's big hike is THIS weekend. Sadly, I'm much further behind on the project than I had hoped. Thea and I have both been sick, and with her on spring break last week, I didn't have much time to focus on much but being a mama.

The good news is that fundraising for the hike stays open until May. I'm planning on finishing photographing everything next week, and I hope to have all of the items up on etsy by Friday.

I've been having a lot of fun sewing up these sweet shirts for little girls. One of the fun things about having a collection of vintage sheets is that so many of them have pretty roses as a part of their design.

I picked my favorites, and have been sewing them on as appliques.

I've also been making a few different styles of earrings and bobby pins.

At this point, I actually have well over 65 different things to list. I am going to offer them all up and sell as much as I can.

As I mentioned before, 100% of sales will benefit the Cystic Fibrosis Foundation.

It is so important for the CFF to receive donations because the CFF receives no federal dollars for research or development of a cure. Your dollars are highly utilized to develop therapies that help manage CF and hopefully will one day cure CF entirely. As I mentioned before, $.90 of every dollar donated to the CFF goes to RESEARCH to FIND a CURE for CF.

Here is a video that my sister-in-law's friend and fellow CF mom Rebecca Fish made to raise awareness:

 

Again, you have my deepest gratitude for your support of this project.

the 65 roses project : take 2.

As many of you know, in October 2009, my niece Caroline was born with cystic fibrosis. Cystic fibrosis is a life-threatening genetic disease that primarily impacts the lungs and pancreas - leading to severe lung infections and reduced ability to absorb fats (and more importantly fat soluble vitamins) that, taken together, substantially reduce life expectancy.

Caroline has the Delta F508 gene mutation. This mutation is considered the most severe CF mutation because it affects BOTH the respiratory and digestive systems. We are so grateful that at 18 months, Caroline has remained incredibly healthy, and is a thriving little girl.

Last year, to raise money for the Cystic Fibrosis Foundation, my brother and his friend Matt hiked 30+ miles through the mountains of North Carolina. In support of his fundraising efforts, I made and sold 65 fabric roses - raising $1000. Last year, my brother and Matt raised over $30,000 for the the CFF.

When my brother told me the significance of the phrase "65 roses," I knew that this would be the theme of my fundraising efforts. "Sixty-five roses" is what some children with CF call their disease, because those words are easier for them to pronounce. You can read the story about how this phrase was adopted by the Cystic Fibrosis Foundation here.

This year, my brother is a hike leader and the group of participants has grown from 30 last year to over 80 this year. Last year, the group raised $160,000. This year, they're almost at $300,000!

 

I was so happy to learn that $.90 of every dollar donated to the CFF goes to RESEARCH to FIND a CURE for CF.

 

This year, in support of my brother's fundraising efforts, I am making several types of roses - sewn fabric roses (two styles in various colors), earrings, hair clips, and sewn t-shirts. Those pictured in this post are a few examples of what I will be offering for sale.

 

Over the next couple of weeks, I will be sharing more about Caroline's daily life as a kid with cystic fibrosis, as well as a bit about the good that the Cystic Fibrosis Foundation is doing  - including how they recently advocated for my brother's family when Caroline lost coverage for her care at UNC.

 

 

I hope you will check back for updates. Thanks in advance for your support of my family, and of the Cystic Fibrosis Foundation.

the 65 roses project : the hike.

It's been a couple of weeks, but I wanted to post one more update on this project.

I am so incredibly grateful that I was able to participate in my brother's fundraising efforts. All 65 of the roses sold in 36 hours, raising nearly $1000 for the Cystic Fibrosis Foundation. Thank you so much. In all, my brother and Matt raised over $18,000, and, in total, the 36 hikers raised over $160,000.

John, Thea, and I drove to Banner Elk, NC on Friday to enjoy a pasta dinner with the hikers, supporters, and the CFF staff. During the dinner, my brother spoke about the ways that Caroline's CF diagnosis has impacted their family - both emotionally and in the ways that their life must accomodate her necessary daily treatment. It was very powerful to witness.

The group of 36 hikers rose at 2:30 am on Saturday morning for opening ceremonies and to prepare for the hike's start at 4 am.

Here are some photos from the hike. These were taken by my brother and Matt, and I did a little bit of processing.

After 2 1/2 hours of hiking in the dark, they finally saw the sun rise over the mountains.

 

In all, there was 7,974 feet of elevation gained and 8,719 feet of elevation lost, including 2,136 feet of elevation gained in 2.7 miles hiking up Roan Mountain.

At times, they hiked through dense fog. Towards the end of the hike, they encountered 40-50 mph winds. There was some pretty extreme fallout on the trail from the weather North Carolina experieced this past winter.

The following are shots I took at the mid-way aid station.

 

My brother, Rebecca, and sweet Caroline.

While BJ and Matt continued the second half of the hike, Thea and Baker enjoyed some cousin bonding time. Here, Baker is teaching Thea how to swing on her tummy.

And while we waited for them to return to the hotel, they carefully inspected my brother's congratulatory boquet.

After 30+ miles, the hike was over.

And we were all reunited back at the hotel.

I am so proud of my brother for undertaking this tremendous endeavour, and so grateful that Matt was there to do it with him.

In a recent email sent to those who supported "Team Caroline," my sister (in-law) provided this update on Caroline:

Despite a current cold and two ear infections, Caroline is doing great. We had our first appointment at the UNC Cystic Fibrosis Center this past Wednesday and were beyond impressed. The doctors, nurses, PT's, nutritionist, and other team members were all wonderful, extremely knowledgeable people. We feel so blessed to be surrounded by people with such experience and wisdom about CF. We have decided to continue her care exclusively in Chapel Hill at UNC with Dr. Retsch-Bogart, who is a tremendously talented CF researcher and doctor. UNC is the hot-bed of CF research right now. We're currently considering having Caroline be part of a clinical trial for one of the latest therapies (hypertonic saline) not yet fully proven in infants, but one that has delivered outstanding results in adults.

Again, thank you SO much for your support. I really cannot find words to describe what this means to me and my family. I am forever grateful.

the 65 roses project : housekeeping

I am still feeling totally blissed out and amazed by the response to the 65 roses project. Thank you so, so much.

I am currently sorting through the orders and packing them up. I really didn't expect to do this all at once, so it is taking me a bit to get organized.

Several local folks are working with me for drop-offs and in-person delivery. For those lovely people, I'll be refunding your shipping costs through paypal.

Also, the paypal account I used is the one I have set up for my handcrafted jewelry business. I forgot that the setting for sales tax was set to automatically calculate for Virginia addresses, so I'll be refunding this as well. So sorry about that!

I hope to have all of the roses ready to go by Sunday.

I've received a number of questions about whether I plan to make more roses. The answer is yes - but probably not until next year. If you still want to support the Cystic Fibrosis Foundation, I encourage you to visit my brother's hike home page to read their family's story in his words and, if you'd like, to make a donation.

I truly appreciate your support - and patience! Please let me know if you have any questions.

Enjoy your Thursday!

the 65 roses project : the shop is open!

 

(Due to some technical difficulties, I had to post the link early. Sorry for the confusion!)

The shop is open!

the 65 roses project on etsy

Thanks in advance for all of your encouragement and support (and patience!).

the 65 roses project : update

I am thisclose to having all of the roses uploaded to etsy.

The link to the shop will be posted tomorrow morning (4/12/2010) at 10 am.

In the meantime, here is a link to a great article on cystic fibrosis. The article recently appeared in Richmond Magazine.

I hope you had a wonderful weekend!

the 65 roses project : update

Remember that cold I mentioned in my last project update? Well, it is now bronchitis. And I am sick.

After spending the morning getting breathing treatments and a shot of steroids, I am feeling a bit better.

But right now I am listening to my body telling me to rest.

However, I am determined to finish everything this week. Look for another update as I start to feel better and have a more clear idea of when the shop will be open.

I hope you had a wonderful weekend!