October 10 - Dear Nicholas Sparks

Dear Mr. Sparks,

This is how I am spending my weekend.  At my desk, watching movies of your books and catching up on this blog. 

I have been so incredibly busy that I am very behind.  But I am determined to catch up! THIS week!  

Because this project is too important.

Because these children need your voice.

Because as loud and stubborn as I am and as many incredible volunteers that we have... we are not loud enough.

Ironically as I went grocery shopping this morning before I started writing, the Outreach NC magazine was sitting on the shelf.   What a great article about you!   What incredible timing to see that on the store magazine rack.  I'm taking it as a sign. 

Sincerely,
Dawn Torrence Williamson
Dedicated CDH mom and charity president

August 25 - Dear Nicholas Sparks

Dear Mr. Sparks,

I'd like to tell you about our Vice-President, Ashley Barry.


I met Ashley at our 2008 CDH Conference, which was held here in Raleigh.  Ashley was very pregnant with her second daughter, Leah, and attended with her husband, Chris, and their cherub, Jessica, who was about 2 or 3 at the time.

Ashley was shy, not ready to talk about her family's CDH journey and so Chris did most of the talking.  I didn't get a chance to know her very well until she joined us as a volunteer and quickly an addition to our Executive Board of Directors.



7 years after we met, I cannot find the right words to say how much she has bought to our charity and to me, personally.   We've undergone extraordinary growth, the division of one board into 3 boards, good days, bad days, conferences, trials and more growth.   A scientist by trade, Ashley is the level-headed one to my big dreams and quick-tempered reign as president.  Often, she's good cop to my bad cop when needed.  She's been my roommate at conferences.  She's let me bring reporters into her home at the last minute to raise awareness.  She puts up with me.  She keeps me guided, keeps the charity on track, quietly works behind the scenes supportive all of our boards and our volunteers and never likes to be recognized.


Which is precisely why she needs to be recognized.  Through divorce and deaths, through dating craziness and personal turmoil... she's been a friend above all.  She is one of most giving people that I know and you will never hear her speak ill of anyone.  I love her like a sister and would not have survived all the changes over the past decade professionally and personally without her. 

These are photos taken in Jamaica during an excursion on the CDH Conference Cruise.  We climbed a waterfall together.  If that doesn't aptly describe our friendship, I don't know what does.

 

 

Except maybe this photo.  That the photographer set us up to do without knowing us.  This is definitely us:

Ashley is one of a kind.   We are all so very lucky to have her.  She is an incredible woman and an amazing CDH mom.

Sincerely,

Dawn M. Torrence Williamson
President of CHERUBS

March 1 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are so very busy around there preparing for "Congenital Diaphragmatic Hernia Awareness Month" in April and CDH Action Day on April 19th!  

One of the things that I love to do, but don't have time to do as much as I'd like, is to make graphics to help raise awareness for our cause.

This is something that took a long time to put together but that we hope to use for many years to come:

(click to see full-size)

We have an amazing new CDH Awareness Team this year, headed by Felecia Woodruff, who is working so hard to help our children.  I am very excited all the things to come!

Sincerely,
Dawn Torrence Williamson
CHERUBS President

February 15 - Dear Nicholas Sparks

Dear Mr. Sparks,

None of our accomplishments the past 20 years would be possible without donors and without the hard and dedicated work of all the many, many people who volunteered their time, talent and love to our charity over the years. 




• Adzick, N. Scott MD
• Aigner, Kristin
• Alessandrini, Rachele
• Andrea Martin
• Andrus, Christi
• Arce, Fer
• Baldwin, Dave
• Ball, Somer
• Barry, Ashley
• Baxter, Lisa
• Bennett, Debbie
• Blake, Mary
• Blake, Mick
• Blakeley, Debbie
• Bloomfield, Brynna
• Bold, Krista
• Bradley, Amber
• Brogdon, Lynne
• Bryant, Hope
• Burchell, Zoe
• Burton, Cheryl
• Burton, Elizabeth
• Burton, Stephanie
• Button, Jean
• Byington, Kimberly
• Cadwell, Heidi
• Cain, Kenneth
• Campbell, Jessica
• Campbell, Lauren
• Campsey, Penny
• Cappola, Gina
• Carter, Cassandra
• Carter, Lisa
• Cassese, Charlene
• Cassese, John
• Chamberlain, Kerrie
• Cheney, Leigh
• Chester, Shanon
• Clark, Melissa
• Clements, Tonya
• Cole, Carol Lynne
• Collins, Cindy
• Collins, Trish
• Colvin, Nicolle
• Coon, Jill
• Crawford, Janice
• Crawford, Kate
• Crow, Carol
• Crow, Danny
• Culwell, Michael
• Cummings, Jessica
• Cuomo, Jennifer
• Daughtry, Joanna
• Davis, Jeannette
• Dean, Amanda
• DeForge, Tina
• DeMercurio, Shirley
• Deprest, Jan MD PhD
• Deskins, Sarah
• Dickerson, Dodie
• Dickinson, Jennifer
• Dinay Everett, Stacy
• Doades, Kimberly
• Donahoe, Patricia MD
• Donahue, Lea
• Donahue, Ray
• Dowdy, Joseph
• Doyle-Propst, Elizabeth
• Dulier, Cindy
• Dunn, Kathleen
• Eaken, Brenda
• Easley, Donna
• Echelbarger, Molly
• Erazmus, Vicki
• Evans, Shelly
• Ezernack, Sheila
• Falkinham, Rebecca
• Fiorillo, Toni
• Fisher, Erin
• Fishgrab, Beth
• Flowers, Rhonda
• Flynn, Shannon
• Forney, Heidi
• Franklin Amlin, Sherry
• Fuentes, SanJuanita
• Fulk, Mark
• Gebow, Georgia
• Gibson, Jill
• Gilbert, Alicia
• Girimonte, Rebecca
• Glennie, Melissa
• Glover, Brandee
• Green, Freedom
• Green-Krist, Kelly
• Grubb, Susan
• Haines, Dawna
• Halbeisen, Jolene
• Hall, Brandon
• Hall, Tara
• Halley, Dawn
• Hammer, Rikke
• Harrington, Chelsea
• Harrington, Tim
• Harris, Lisa
• Harrison, Michael MD
• Hartigan, Collette
• Havenstein, Greg
• Heaton, Tova
• Henderson, Laura
• Hendricks, Rebecca
• Hennebury, Tara
• Hensley, Josh
• Hess, Kara
• Hill, Jody
• Hodson, Nikki
• Holt, Karla
• Hoskins, Renata
• Hosmer, Michelle
• Houle, Patricia
• Howard, Elizabeth
• Howard, Karen
• Howie, Tara
• Huether, Michele
• Hunt, Jade
• Hurley, Kacy
• Hutchinson, Vanessa
• Jaburg, Brienna
• Jackson, Ashley
• Jacob, Liz
• Jacobs, Tari
• Jenkins, Karen
• Jul, Rikke
• Kaleleiki, Laura
• Kara Gleeson
• Kastner, Anne Marie
• Katz, Avia MD
• Kays, David MD
• Kelly, Shana
• Kessner, Danielle
• King, Rachel RN
• Knott, Sharon
• Kostmayer, Shereen
• Kramer, Megan
• Kyle, Mikkel
• Lally, Kevin, MD MS
• Landers, Tracy
• Lane, Brenda
• Lane, Kevin
• Langer, Jacob, MD, FRCS(S)
• Lansdon, Marion
• Larrison, Melissa
• Lehmann, Laurelle
• Lenhart, Scott
• Lichtenstein, Annette
• Logozzo, Angela
• Logsdon, Tami
• Longman, Karen
• Lopez, Elizabeth
• Losty, Paul MD
• Maher, Clair
• Marchesseault, Marie
• Martin, Kristin
• Massie, Grace
• Matthews, Dawnn
• McCafferty, Ashley
• McCue, Dana
• McGilberry , DeAnn
• McGrath, Tina
• McHan, Pamela
• McLuckie, Amanda
• McPeters, Steadman
• McVey, Dawn
• Meats, Tracy
• Meherg, Teresa
• Meyer, Tracy
• Miller, Jason
• Miller, Troy
• Milliner, Faith
• Moats, Elaine
• Mohr, Cindy
• Moore, Shelly
• Morse, Teri
• Mourtsen, Debbie
• Munson, Sharon
• Myers, Karen
• Napers, Karol
• Naus, Niki
• Nava, Corin
• Nava, Jeanne
• Nelles, Suellen
• Nelson, Tim
• Noel, Holly
• Olivarez, Stephanie
• Ore, Grace
• Owen, Amanda
• Parker, Daphne
• Parsons, Melanie
• Partin, Deeshia
• Paulsen, Aubrey
• Payne, Elizabeth
• Pehrson, Heidi
• Peterson, Ann
• Petty, Wendy
• Picerillo, Valerie
• Porter, Corrine
• Prudhomme, Alexis
• Pruitt, Pamela
• Puri, Prem, MS, FACS
• Rademarker, Amy
• Rao, Malini
• Retterer, Clair
• Retterer, Dave
• Rhodes, Peggy
• Rice, Henry MD
• Rodi, Jennifer
• Rodriguez, Isabel
• Roepcke, Paula
• Rogers, Michelle
• Rogula, Kate
• Rowan, Jamie
• Rubenstein, Neil
• Rupe, Tonya
• Salzman, Christi
• Sandoval, Cheryl
• Sarver, Nicole
• Schlueter, Amy
• Schmaltz, Jessica
• Serkland, Victoria
• Silverman, Darlene
• Sincavage, Tammy
• Slavin, Brenda
• Small, Matt
• Spohr, Tammy
• Stembler, Christina
• Stevenson, Cara
• Stiner, Kristen
• Stolz, Donna
• Swanson, Amanda
• Switzer, Kimberly
• Taborn-Moses, Jacquetta
• Taylor, Christine
• Taylor, Lesli A., MD
• Tenney, Jennifer
• Thibeau, Lisa
• Tolley, Stephanie
• Tomczyk, Laura
• Torrence, Jeremy
• Toth, Judi
• Trask, Abigail
• Tucker, Sophia
• Tunnell, Julie
• Van Horne, Curtis
• Van Rillaer, Gemma
• Vanesko, Jeff
• Vanesko, Sandy
• Wagner, Barbara
• Ward, Lauren
• Warr, Tammy
• Wasik, Jennifer
• Weaver, Christine
• Webster, Laura
• Weedon, Megan
• Welsh, Lori
• West, Linda
• Wheeler, Nicole
• White, Jennifer
• Williams, Noel
• Williamson, Dawn
• Williamson, Jean
• Willis, Matt
• Wilson, Jay Mark, MD
• Winkels, Sonia
• Winthers, Amber
• Winthers, Dylan
• Wolfe, Anne
• Woodruff, Felecia
• Wyatt, Rachel
• Young, Nicki

Whether they volunteered for a day or a decade, each person bought something to the table to help us help families affected by CDH.  We are so grateful for every single one of them.

Sincerely,
Dawn Torrence Williamson
Grateful CDH Charity Leader

February 6 - Dear Nicholas Sparks

Dear Mr. Sparks,

It's now just 1 week until our charity's 20th Anniversary.   We are working hard to try to raise $1,000,000 by February 12th.  We are 98% of the way there.   Less than $24,000 from reaching that goal.

Why is meeting this goal so important?   Well, besides the fact that these babies need research funding, CDH needs awareness and families need support... this is a huge milestone that's been 20 years in the making. 

I know I have mentioned this goal in letters before but it's a very important one.   When our charity can say "We raised $1 million for CDH", it is not just us saying that.   Every family, every mom and dad and grandparent, aunt, uncle, survivor and friend who ever donated, held a fundraiser, bought a CDH Awareness item can say "I helped to raise $1 million for CDH"!   To be able to fight back against Congenital Diaphragmatic Hernia is huge!

For about 6 months now we have posted "Fundraiser Fridays", giving parents ideas of ways that they can help us fund research and services, as well as raise awareness.  

We have a Firstgiving page that allows people to donate directly to the charity and also see immediately how much closer their donation is taking us to our $1,000,000 goal.  Families and friends can also create pages in honor or in memory of their cherubs to share their stories, photos and videos for free and to fundraise in their child's name.

We have volunteers who will help families hold fundraisers and a webpage that gives them lots of fundraiser ideas complete with easy instructions on how to hold them.

Though these brochures are for information on fundraisers that anyone can download and use, we post them for our charity supporters who want to help CDH families or want to give forward.

Fundraising Events Change for Cherubs CDH HOPE Totebag Baby Shower Car Wash Dress Down Day Horse Trails Trick-or-Treat for CHERUBS Valentine's Day Posters Breakfast with Santa

Fundraising Sales Adopt a Hospital Program CDH Bake Sale Silent Auction Ebay Auction Raffle Candy Sale Awareness Bracelet Sale Yard Sale / Rummage Sale Online Fundraiser

Sport Fundraisers CDH Walk CDH Run/Marathon CDH Golf Tournament Baseball Tournament Bowl-a-Thon Other Events CDH Blood Drive Balloon Release

We put a lot of work into fundraising to run our charity and to continue to help families.  A lot of time goes into event planning, meeting with potential donors, marketing, creating graphics for fundraising items, etc.   We work hard to raise CDH funds in a professional manner that also raises awareness.  We even created a CDH Fundraising Kit to help families fundraise for our charity also. 

We have a lot of cherubs to help and we subsist solely on donations and volunteers, offering free services to families in 60 countries with a very small shoe-string budget.  Every donation, every event, every bracelet and t-shirt sold truly makes a difference.   It is a huge team effort to operate a charity of this size.

So you see, reaching the $1,000,000 is the culmination of the hard work of 100's of people over 2 decades.  It's more families helped, more research funded, more awareness.   Another very big step in the fight against Congenital Diaphragmatic Hernia.

7 days to raise $24,000.   Never underestimate CDH families.  

Sincerely,
Dawn M. Torrence Williamson
Determined CDH charity leader

January 25 - Dear Nicholas Sparks

Dear Mr. Sparks,

I took the day off of work (yes, a rarity even on a Sunday) to work on my scrapbook albums.

Scrapbooking and genealogy are my hobbies, occasionally painting and decorating as well.   I like to remember things down on paper and photos because my memory has never been great and seems to be getting worse the older I get.

Today, I am working on scrapbooks of CHERUBS' first European CDH Conference in Dublin last year as well as the week I traveled around Ireland with friends.  I love North Carolina, but a huge part of my heritage and heart belongs in Ireland.

I started to write to you about that trip and the conference but I think instead, I want to share with you an iReport that I did for CNN about it:

 

Traveling for a Cause

 

It was a trip to Dublin in August for the charity, CHERUBS that healed some scars on this grieving mom. The international charity works with families of babies born with Congenital Diaphragmatic Hernia, a rare and often deadly birth defect that strikes 1600 babies a year.

This was the very first conference in Europe for CDH families, one that had been planned for over a year. It was also our second major conference of the year, the first held in Washington DC in June. Add in the normal workload, 2 reality shows and lots of great awareness this summer, it was time for a much needed vacation.

So I planned a drive around Ireland with another member. A full week off of work - something that never happens for me due to my own workaholic tendencies and obsession with helping end CDH. We planned every detail of the trip; the driving schedule, tourist trap itinerary, stays in castles, stays in quaint Irish bed and breakfasts. Girls week in Ireland! Then another friend from the charity for almost 2 decades decided to join us and bring along her 18-year-old son.

So after the conference, off we went. I wasn't sure how Brandon would feel about tagging along with Laura, Tara and I - 3 middle-aged women. But he seemed to have a lot of fun. It may have helped a bit that the legal drinking age in Ireland is 18 and he just turned 18 in July.

I also wasn't sure how I'd personally react to having Brandon with us. Not because I don't love this kid like family but because he was a friend of my son, Shane. Shane who was struck down by CDH at age 6 and a half. Brandon, Shane and Logan were the 3 cherubs. They were really the only friends my son had, all 3 born with CDH.

This year was harder as Logan's mom, Barb, died unexpectedly shocking us all and bringing up many memories from years ago when all our boys were little, when we all were very active in the beginning of the charity. When we all met face-to-face for the first time in January, 1999.

In 10 days it will be the 15th anniversary of my son's death on September 11, 1999. Yes, that day but 2 years earlier. And yes, just months after we all met that first time.

Here it is, 15 years later and Tara is like a sister to me and Brandon like a nephew. Laura, like a sister too as well, bought to us through losing her nephew, Owen, to CDH a few years ago. And here we all are driving on the left side of the road in a little Volvo on winding roads the Irish countryside trying to check off as many tourist attractions in a week as humanly possible. We have a campaign at CHERUBS called "Save the Cherubs" (what we endearingly call children born with CDH). We put wings on these kids to raise awareness because of the 50% of those children who do survive CDH, 99% look completely normal. That is wonderful for these children, but not so great for awareness. Sticking wings on these kids brings attention to the birth defect. Little awareness means little research funding. With 800 of these children dying each year in the U.S. alone, funding is desperately needed. So around Ireland we drove, taking lots and lots... I mean 1000's of photos. Many included wings. A travel tradition that I started when in Europe last year for a medical CDH conference. We put wings in front of landmarks and take photos. We then turn these photos into posters. Posters that mainly aren't printed due to lack of funding but we have hopes of someday printing them! Photos of wings in front of the Eiffel Tower, Big Ben, Dutch windmills, etc, etc. Then back in the States with photos of wings (and sometimes kids wearing them) in front of the Statue of Liberty, Capitol Hill, the White House, Walt Disney World, etc, etc. It's a tradition now.

And it makes me feel like Shane is traveling with me in a way. To a grieving mom, that means everything to hold on our children in some way that might help others and let them live on.

Brandon was a great sport about wearing wings, often just putting them on without me asking him too. He's been trained well over the years that as a survivor of CDH, he has a responsibility to raise awareness to help other children. Tara is a great mom to teach him that. And it was a running joke all week that he'd do "whatever Dawn said" for the charity.

But now, he's 18 years old. Hardly a little boy. Hardly the 2-year-old I met in 1999, or the kid who used to fight with my kid over whether Barney or Sesame Street would be on the TV next. Now, he's all grown up.

It's hard to not think at least once about how Shane would be as a young man. Would he be tall like me and his dad? Would he be skinny like me at that age or muscular like his dad? What would he like to do? What music would he be listening to? Would he have fallen in love yet? Graduated high school yet? What would he have been when he grew up? Would he and Brandon be goofing off together on this trip, driving us nuts?

You would think that those questions would have been in my mind the entire 2 weeks in Ireland with Brandon and all the other survivors at the conference, but they weren't. You see, after 15 years you learn to stop asking why because there is never going to be an answer. Instead, I started to see my son in these cherubs... and that makes me happy, not sad. I celebrate their accomplishments, I cry over their losses. I am eternally grateful to be a part of their lives. I sometimes get too emotionally attached for my own good and get my heart broken again when we lose one but I'm a CDH mom and I know what these kids have gone through to just be here. I know what their parents go through each day. How can I not fall in love with all these beautiful, extraordinary, heroic children? It's an occupational hazard.

And Brandon is family to me now. He knows I will drive from North Carolina to Ohio for him if he needs me or if his mother needs me to kick his butt. Driving around with him and Tara, Laura... it was driving around with Tara, Brandon, Laura, Barbara, Shane and Logan (who is doing find now too). It was raising awareness for all our kids. And we had a ton of fun doing it! See, I'm never really off the clock. ;) We went all over Ireland and went to Belfast on a day trips as well. We took photos with Brandon in wings to represent CDH survivors and photos of just wings to represent Shane, Owen and all the cherubs lost. We climbed the Giant's Causeway. We all kissed the Blarney Stone. We all found four-leaf clovers at the Cliffs of Moher. Ireland welcomed us with not 1, but 3 rainbows. From Dublin Castle to Blarney Castle to Galway, Waterford, Kilkenny, Cashel, Cork and Connemara we took photos and laughed, explored and ate our way through Ireland.

And we went to the Hill of Tara, the mystical center of Ireland, home of all the High Kings and took photos there. Then we went to the gift shop and in a corner was a sale section that had little waterglobes with cherubs with various names on them. There were only about a dozen but the very first one said "Shane". My sign from my son that he indeed was with us on that trip.

When we pulled up the Shannon airport after a week of an Irish fairytale, none of us wanted to go home. And Brandon hugged me and said he loved me and I felt Shane there too, hugging us both.

Now Brandon is trying to convince us to hold a CDH conference in Brazil.

You can learn more about CHERUBS and CDH at http://www.savethecherubs.org

That's the article.   You might recognize Laura Tomczyk in the photo.  She met you at the book signing with me.

Thank you for letting me share my memories with you.

Sincerely,
Dawn M. Torrence Williamson
Grateful CDH mom, charity president and friend

January 23 - Dear Nicholas Sparks (Guest Blogger J. C. Kuehn Miller)

Dear Nicolas Sparks,

Mind if I call you Sparky? Didn’t think so. We’ll stick with Nicolas.

My name is Kuehn Miller. I am a glorified box carrier at the CHERUBS headquarters in Wake Forest, NC. I carry A LOT of boxes. But this is a good thing.

Why is it a good thing? It means that there is a family out there still clinging to hope. Hope is a rarity for CDH families. The boxes (called totebags) contain gifts for expecting parents or for parents with babies still in the hospital. The totebags have hand sanitizers, dry erase boards, disposable cameras, a handprint making kit and many more helpful items.

Most of the items in the totebags are donated by friends and family of CDH babies. On the blankets, the teddy bears, the hand lotions are stickers that either say “In loving memory of…” or “In honor of…”

I’m a twenty-something bearded man. I like bon fires, bacon, and Braveheart. I suppress my emotions (much to the chagrin of my therapist).

However, when packing a totebag, I handle the precious little boots and cute onesies. Looking at them, there is a strange sensation in my chest. The same kind of sensation I experienced when Mandy Moore (Jamie Sullivan) sang “Only Hope” in the movie version of your book “A Walk to Remember.”

(Side note, how on earth did Jamie and Landon get all the way up to the VA/NC state border from Beaufort in such a short span of time? Just a question that has bothered me for about a decade.)

Sorry, back to the issue of hope.

Littering the walls around my desk are portraits of kids wearing the CHERUBS wings. Right above my computer monitor is a picture of a young mother sitting at a miniature tea-party. Across from her is an empty chair with a set of wings attached.

The majority of these posters reiterate time and time again the 50% mortality rate of CDH children.

If you were told that when you went to bed tonight, there is a 50/50 chance of you not waking in the morning, would you sleep?

Mothers and fathers around the world go to bed at night praying, hoping that their precious child will still be there in the morning. Maybe the child leaves us suddenly; maybe the child is in agony for hours as their lungs stop working; maybe everything will be fine.

This is a broken world. Broken dreams are part of humanity.

Even one, ONE mention of congenital diaphragmatic hernia in an upcoming book would work wonders for CDH awareness. We need help. Will you help us, Mr. Sparks?

Best, 

J. C. Kuehn Miller