Wednesday, February 4, 2015
Tuesday, February 3, 2015
First off – I need to apologize for being a little MIA here on Charleysheart.com. I’ve been doing a lot of our updates for books/sock monkeys on our Facebook page because it’s so QUICK and EASY…but sometimes I forget that not everyone is on Facebook! I’m going to re-dedicate myself to this site and do my best to keep information current in both locations.
The start of 2015 came with a flurry of activity….more in terms of mental preparation than actual physical activity…as I’ve been trying to come up with our official “plan” for Heart month. Much like the past 2 years we will be asking all of you to “GO RED” to kick off the month and sharing information related to congenital heart disease, but in addition to those things, I wanted to try something new…
You see, I look at heart month a little differently than I did back in 2011. Yes, I still see it as an opportunity to spread awareness. Heart month provides a much needed spotlight for CHD kiddos, their families, heart centers across the country and for those of us who so desperately want people to stop and take notice of the most common birth defect. We need awareness to fuel progress. We need awareness to generate funding for research. We need awareness so that fewer children have their lives cut short…so that fewer families are forced to say good-bye. Yes. Awareness is key.
So where have my views changed? As a mama to a heart angel, this month also triggers a lot of sadness. I’m bombarded with photos of kiddos who are “winning” their fight with CHD. Children who are labeled as miracles defying all odds stacked against them. Don’t get me wrong…I love seeing these things and there was a point in time where I was plastering the web with the same sentiments. These kiddos NEED to be celebrated. But at the same time, I’m still sitting here without my warrior. Does that mean she lost? Is she less of a miracle? This month, in addition to promoting awareness and celebrating our friends who are still fighting, I also want to HONOR families like ours who are living every heart family’s nightmare. I had been wracking my brain trying to come up with the best way to do this, when an idea kind of fell in my lap.
Miles was born on February 17, 2014,with Heterotaxy Syndrome and a variety of other complex congenital heart defects. He fought so very hard, yet despite his bravery, earned his wings just 6 days later. Six days. Sigh. So yes, Heart month is hard for me – but I'm sure that it will be infinitely harder for Miles’ family. I can say that because we’ve been there. A first birthday celebration with no birthday boy. The first anniversary of saying good-bye. My heart breaks for them, and while I know that I can’t “fix” things for them, I also know how far love and support can carry someone in times of need.
During Heart month 2015, I invite you to help me celebrate the life of Miles Ludvik by donating to his family’s Soles4Souls campaign, Shoes for Miles. Shoes for Miles is an event designed to collect new and gently used shoes (any style, any size) for those in need, all while raising awareness of congenital heart defects.
Miles' family has placed drop-boxes at predetermined locations in the Lincoln area and Charley’s Heart will be accepting donations as well! Do you have a surplus of shoes that you never wear? Be honest, you know you do! Do you know of a business that would be open to having a drop box? Feel free to print off a Shoes for Miles flier (or two...or three...)and help us spread the word!
Thursday, September 18, 2014
Back at it with another Books for Charley update! Just 1 left after this before we get to our BIG Omaha donation and our grand totals for 2014. But let's not get ahead of ourselves....next up is an update from our friends in Michigan!
Our Michigan Books for Charley collection looked a little different in 2014 than it has in years past. It was still fronted by our adorable friend Aly and her mama Jenny, but this year they decided to make their final donation to somewhere a little closer to home. You might remember that the books collected in Michigan have traditionally found their way to the University of Michigan C.S. Mott Children's Hospital. When we first asked Aly's family to participate in Books for Charley back in 2012, Aly was still having pretty frequent follow-ups with her surgical/cardiac team at Mott. Fortunately, two years later Aly has continued to THRIVE following her surgeries, and as a result, her family isn't traveling that direction very often. That is 1000% awesome for Miss Aly - but it didn't make the whole book donation process the most convenient.
Enter - Plan B (Which I love just as much as the original Plan A!) Back in April Jenny emailed me and asked if it would be ok to split up this year's donation between a few special places. Some would go to the pediatric floor at their local hospital, some to Aly's cardiologist's office, and last but not least, to an organization known as Sisters by Heart. I couldn't have been more excited.
Some quick info on Sisters By Heart for those of you who are unfamiliar with the group...
Sisters By Heart is a group of heart moms who came together during their CHD journey – some of whom were fortunate to meet prior to their CHD warriors arrival. Knowing the challenges and difficulties we faced upon diagnosis, and more so, upon bringing our HLHS fighters into this world, we created Sisters by Heart to reach out to and to support parents of the newly diagnosed. A major aspect of our mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey. We want them to know that they are not alone and provide resources and understanding while their child undergoes care and treatment from birth throughout recovery.
Jenny happens to be the Director of Outreach for SBH and is currently housing all of the contents of the above mentioned care packages. When she asked if she could include Books for Charley books among those contents there was no hesitation behind my YES.
"Knowing your child is going to be born with a critical congenital heart defect is devastating... for everyone.. Not just the parents. Siblings are also scared and confused for many reasons. It's hard to explain to a child why your parents are spending long days at the hospital and why their little brother/sister has to stay there. Siblings can take a backseat to a sick baby and that's hard on them too."
We feel so blessed that Sisters By Heart has given us the opportunity to be a small part of the amazing work that they do. PLEASE, if you know anyone with an HLHS child or expecting an HLHS child, send them over to http://www.sisters-by-heart.org/ and encourage them to introduce themselves to this amazing group of heart mamas.
So anyway...now that I've rambled on forever...I suppose I should get to the good stuff!! Books for Charley: Michigan edition collected a grand total of 186 books! WHOOHOO!! I love it! And they were even kind enough to share a picture with us of one of their SBH book recipients. One of my favorite things ever is finding out where our books land, and this picture absolutely made my day.
Thank you Jenny, for continuing to help us honor our sweet Charlotte and for thinking outside the box to spread the Books for Charley love to other heart families. We are forever grateful to your family and to all of the people who help drive your collection year after year. YOU'RE ALL AWESOME!!!
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Wednesday, September 3, 2014
We are so very, very excited by all of the enthusiasm surrounding Project RedButt and cannot thank you all enough for your willingness to help us carry on. Please feel free to contact us at firstname.lastname@example.org with any additional questions. Who knows, maybe you'll have such a good time cutting out eyes that you'll decide to tackle an entire monkey ;).
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Thursday, August 28, 2014
Have you ALWAYS wanted to help with Project RedButt but didn't think you could because you don't know how to sew? If that's the case, do we have an exciting opportunity for you! The only qualification is that you own, and can operate, a pair of scissors! Simple right?
Since we started making sock monkeys back in 2010, our little friends have been adorned with adorable little button eyes. Its a very classic sock monkey look, and while we love it, it's always made us just a little nervous. We've watched our own kiddos play with their monkeys and know that their first instinct is to get those eyes in their mouths as quickly as possible! Yes, each set of eyes is very carefully attached with this eye-to-mouth phenomenon in mind, but a part of me has always wanted to come up with a better idea.
Last week I found myself wandering the aisles of Hancock fabric when I came across a sign that said "FELT: 5 sheets for $1." I quickly gathered up a nice pile of white, black and blue fabric and made my way to the checkout where a very helpful cashier offered suggestions on how to turn them into safe monkey eyes. Later that night, this little lady was born....
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Saturday, August 23, 2014
You know the old saying "Everything's bigger in Texas," right? While this phrase is most commonly associated with things like pick-up trucks, slabs of beef and tall Texas hair, I'm proud to say that thanks to the Gandy family it also applies to Books for Charley! This marked year number two for our BIG Texas collection, and while we thought that things might get complicated do to the fact that they were in the process of buying/selling homes, everything went off without a hitch and they were able to collect an overwhelming number of books for Texas Children's Hospital. They set their sights high and ended up with 366 books (plus another 17 that a fellow heart mom collected). And just to give you a little insight into the amazingly giving heart of Madison's mom...she actually apologized to me for not having more! Sigh - I love her. Three hundred eighty-three books is absolutely, without a doubt, BEYOND AMAZING.
Thank you, Texas, for doing everything a little bit bigger :) Your kindness, generosity, and obvious love for the Gandy's is nothing short of amazing. We are so thankful to have you all be a part of Books for Charley!
Wednesday, August 20, 2014
Donation #2 of our 2014 Books for Charley collection came courtesy of our friend Claire in North Carolina. Sweet Claire will always hold a special place in my heart and I'm so honored that her mom Rebecca has continued to help with our little book drive year after year. They've been with us for three years now, and their collection is still going strong.
Rebecca sent me a message back in July letting me know that they had just delivered 90 books to Duke Medical Center. NINETY BOOKS! I'm not sure if she realizes it, but that is almost DOUBLE the number of books that they collected last year. What an amazing reminder that Charley's spirit is still very strong North Carolina. A huge thanks (and big virtual hug) to all of you who stepped up and made this all possible. I'm positive that you helped create lots of smiles in the halls of Claire's hero hospital.
Thank you, Scott family, for always helping us celebrate Miss Charlotte. I know that she is always watching over your little girl! May sweet butterflies always hover near her.
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