Keep your family and friends updated on your cherub's progress at a site that can also give them information on CDH and advice on how to help you through this roller coaster.

Just testing out the blogs. :)

CHERUBS is almost 14 yrs old. 14 years old. Wow! We have achieved so much over the years. Some parents remember what it was like to have a CDH child 14 yrs ago - there was NO SUPPORT. No information. No organizations. No internet. No library books that explained things. No help from any other organization for birth defects. No nothing. You were alone, without information, without support, trying to stay afloat in all the CDH lingo and stress.

When my son was born the doctors gave me little information. Let's just say his surgeons he had the first yr of his life did not have very good bed side manners. Any information that I had, I either learned from the nurses or in the medical library myself. I used to lug a diaper bag around the hospital - not full of baby supplies because my baby was lying in intensive care - but full of research articles that I copies out of medical journals in the library. I was in Duke's medical library so much I had a library card, knew the staff and knew which computers and copiers worked the best. Some days that diaper bag would be so full I could barely carry it. I'd unload the research articles on a tray table beside Shane's hospital bed, pull out a highlighter and go through each one finding information.... all while he slept beside me drugged up on Fentanyl or Morphine or any number of painkillers and sedatives while he was recuperating from surgery or a complication.

It was in these medical journal articles that I learned that despite the surgeon's claims that there was only 1 pediatric trach made in the entire world and we had to use it, even though it was causing a stoma so large in my son's throat that you could see his esophagus and we had to pack and pack gauze in the wound while he cried (under sedation) because it hurt so bad - that there was indeed more than 1 trach manufacturer for pediatrics.

It was in these medical journal articles that I learned that it was completely absurd to use tissue from a pulmonary sequestration to try to repair a hernia because NO ONE HAD EVER DONE IT BEFORE... before it had been done on my son, when I was 19 and he was 3 days old and I didn't know to say no. I didn't know because I had no information.

It was in these medical journal articles that I learned that CDH is as common as cystic fibrosis and spina bifida. I learned about recessive genes and possible links to CDH. I learned about Cornelia de Lange Syndrome when the doctors thought Shane might have had it (he didn't). I learned about using abdominal wall muscle to repair CDH and presented the surgeons with printed articles when they said I was crazy for suggesting it.

I learned and I read and I studied and I learned some more. When Shane came home from the hospital, I continued to learn and read. I signed up for classes at the local community college for medical terminology, biology and anatomy so that I could learn more. I took alternative courses at UNC for genetics and embryology. I learned what epidemiology was and gained a passion for it.

I learned to get Shane a new surgeon - and I did and she was and is amazing, and is still on our Board at CHERUBS, along with many other surgeons and nurses and epidemiologists that I met in my research over the years.

I took all this knowledge... though in the grand scheme of CDH, it's just a drop in the bucket because no one knows all there is to know about CDH still.... and together with another CDH mom, started CHERUBS. Not because we wanted support. Not because we wanted to make our own cherub's saints or immortalized or put on pedestals. Not because we wanted recognition or to make friends or be popular... because that's not our personalities and because that didn't even exist in the days of writing letters through postal mail. But for 1 reason - because we didn't want other families to go through CDH alone and without information.

We met more CDH moms and together we took our combined knowledge and we compiled CHERUBS Congenital Diaphragmatic Hernia Research Surveys - by hand. This knowledge bought us to conferences around the country, bought CHERUBS to the CDH Study Group table. This knowledge is what created CHERUBS.

This knowledge is something that parents should have at their disposal without having to go through all I did to gain it, or all Rhonda did to gain it. That is what CHERUBS is for.

14 yrs ago there was no internet. Our organization was started by writing letters, 1000's of letters. You did not get immediate responses like today's e-mail - you sometimes waited months. You did not have information within seconds through Google - you drove to a library and you found it in a book.

11 yrs ago CHERUBS went on-line. Our first web site was a year later. There was no free web site software, there was no myspace or facebook. Google wasn't around yet. You had to hand code html to create a web site. You had to search and search for CDH families to build an on-line support group. There was no free software or blogs to help. There were no other support groups to join and learn from and get members from to start our own. We were pioneers.

We worked hard. We created our site. We added 100's of pages of information for CDH families. We lost countless hours with our families and cherubs to put all the on-line resources together for other CDH families. We learned what a chatroom was. How to use search engine optimization. How to install a database. We learned how to create graphics and a logo and our own site template. By trial and error, we learned. With no one to teach us, we learned.

Now, in 2008 there are many support groups. Anyone who can create a free blog and fill out a form on the IRS site with free software can create a non-profit support group. Now organizations are taking all CHERUBS has done and our groundwork and building off of it... furthering our cause. Learning more about CDH. Helping more CDH families. Some have said that we haven't gone far enough in 14 years - but we stared with nothing, we laid the foundation, we broke ground - and we are still working, still building, still doing new things every year.

How far we all have come..... how far CHERUBS and the CDH community has come in 14 years.

We will not stop until there is no longer a need for CDH information, support or awareness - because CDH no longer exists.

Why is the CDH Awareness Ribbon blue and pink and yellow with clouds you ask? Several years ago on our old listserv, members of CHERUBS (then the only CDH group on the internet) talked about having an awareness ribbon. We batted the idea back and forth and didn't go much further with it because it every color was already taken and it seemed a bit tacky to take a color that already belonged to other causes - we didn't want to take away from their hard work promoting their cause with their ribbon. And we didn't want to compete with other causes for a ribbon color, because well... that's not very professional.

A couple of years ago, cherub with wings, Drew, had a ribbon made especially for him that his mom put on the Rainbow of Hope site. RoH is a site dedicated to Drew's memory that has information about CDH. Jana is a sweetheart and well respected in the CDH community. Drew's ribbon is turquoise.

Last year an organization decided to 'borrow' Drew's ribbon for their own CDH ribbon. Soon this organization claimed rights to all CDH Awareness activities, events, etc - even tried to have this ribbon trademarked as their own - based on the fact that they wrote a few letters to governors for CDH Awareness Day proclamations. Because this was their project, CHERUBS respected it and stayed out of it. But soon other groups and parents who used that color ribbon or who said "Congenital Diaphragmatic Hernia Awareness Day" without explicit permission of this small group of about 35 real people were getting threatened with lawsuits. Then CHERUBS was getting threatened if we didn't stop using the term "Congenital Diaphragmatic Hernia Awareness". CHERUBS tries to steer clear of all drama - but we do stand up for CDH families. The decision was made to not use the turquoise ribbon to avoid further drama and threats from that group.

Last year, our members asked for an official Congenital Diaphragmatic Hernia Awareness Ribbon - one that was chosen by CDH families, not used by other causes and not embedded in threats and drama. All of our over 2000 members - all CDH families - were asked to recommend and then vote for the official CDH Awareness Ribbon. There were several different ideas that went around but one thing was for certain - we wanted a ribbon that represented our children, our cause - a ribbon that is owned by ALL CDH families and can be used without fear. Not something assigned to them or dictated to them, not something some politician who is clueless about CDH signed on unintentionally, but something that they chose for their children. Baby blue, pink and yellow... similar to the ribbon for birth defects and clouds for those cherubs who do not survive - because half of these children do not survive.

To us, the turquoise ribbon is Drew's ribbon and always will be... something sacred that belongs to his memory. How amazing that Jana chose to allow others to use it and how amazing she is to put up with all she has because of it.

[img:a67a62b698]http://cdhsupport.org/members/weblogs/upload/2/16159048084905d5ae8ab40.gif[/img:a67a62b698]

This is not CHERUBS' ribbon. It is not the ribbon of any 1 organization or person. This is the official Congenital Diaphragmatic Hernia Awareness Ribbon and it belongs to ALL of the families and children affected by CDH.

No One Knows....
by Dawn Williamson

No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.

No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.

No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.

No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.

No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.

No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.

No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.

No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.

No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.

No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.

No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.

No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.

No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.

No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.

No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.

No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.

No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.

No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.

No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.

No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.

No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.

No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.

No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.

No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.

No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.

No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.

No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.

No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.

No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.

No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.

No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.

No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.

No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.

No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.

No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.

No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.

No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.

No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.

No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.

No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.

No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.

No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.

No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.

No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.

No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.

No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.

No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.

No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.

No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.

No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.

No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.

No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.

No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.

No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.

No one knows what it's like to lose your child - unless they have been there themselves.

No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.

No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.

No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.

No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.

No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.

I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.

And I know over 2200 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org

Phone: 919-610-0129
Fax: 815-425-9155

CHERUBS
3650 Rogers Rd, #290
Wake Forest, NC 27587

Dawn M. Williamson, President & Founder
dawn.williamson @ cherubs-cdh.org (no spaces)

Check it out over on the right column of my blog here. It's to help us keep up to date on CDH families and to offer more encouragement and support. To sign up go to http://www.ringsworld.com/cdhblogsring/join.html

2 posts within a month... amazing, huh? ;)

Things here are still hectic but good. The events are coming along, the media is now on board. The event sites are getting hit constantly by local people, people learning about CDH and others keeping tabs on what CHERUBS is doing (TAIWSOT). We've decided to allow other dress colors as well and made it a black and white ball instead of just white ball - this has greatly increased the interest in the Angel Ball. The Golf Tournament is going well also. The CDH Conference is going to be WONDERFUL!!!! It's all coming together!

Craig started cortisone treatments for his back and they are really helping. The boys are done with baseball for the summer and now non-stop into golf and golf tournaments. They would kill me for saying this but... have you ever seen 10 to 12 yr olds in their little golf outfits carrying their clubs and trying to be all grown-up when they play with their friends? It is absolutely freaking adorable. Adorable. They think they are cool - I think they are adorable. I really have to stop using words like adorable and cute.... I'm crimping their style I suppose. But they are adorable. They turn 13 in a few weeks. Teenagers. Can I admit I'm a little sad to see them leave little boys stage and enter into the teen years?

Speaking of 12 yr olds... I may end up with custody of my niece by the end of the year. She is completely out of control and my parents can't handle her. I'm determined to snap her back onto the right road, whatever it takes. She's too young and stubborn to know that 1 mistake can ruin the rest of her life. So either she makes a complete turnaround by the end of the summer or she's moving in with me where she will get 24/7 supervision by an adult who she cannot charm or wear down. She's going to stay out of trouble and grow up to be a good person if it kills me. The only other option is an all-girl reform school, preferably Christian. Not a school full of delinquents where she can learn even more bad behavior but a school where expectations are high and peer pressure to do well is the norm. Any advice sincerely appreciated!

Our research site programming starts in August. I am so excited about that, maybe even more excited than I am about the events. I love that so much support and information is at CHERUBS... 13 years of doing that, we're pretty good at it! But no one is really doing the research on CDH that needs to be done. And no one has the database that CHERUBS has. Finally all this data will be used to actually make a real difference in the fight against CDH. We will be doing something proactive against CDH. Raising awareness is wonderful - the end result should be more attention to CDH and in turn, more research. We're going straight to research. Many doctors and hospitals will be working with us, the CDH Study Group and CHERUBS have been working together for years - we're taking it to a whole new level. All CDH families will be able to participate. We can all work together to find the cause and prevention and best treatment of CDH.

This is the first step to the end of CDH. I get goosebumps thinking about that.

[b:0dff3f27ba]This is the first step to the end of CDH.[/b:0dff3f27ba]

[color=black:c1fefbb70b]I really need to try to keep up here better!

It's been a zoo around here lately. Work is so busy right now. CHERUBS events are taking up every other waking moment lately. Evenings and weekends are spent either at the boy's baseball games or printing up flyers, meeting with volunteers or vendors, or returning phone calls and e-mails.

This week has been particularly busy. Friday, I took off of work and spent all day getting the ABC licenses. I had to go to the Durham Police Dept to get a signature that they knew about the event, my county clerk of court for a criminal check on me since my name is on the license, the State Dept for updated documents, then a notary to get it all finialized before I went the post office to get it out in time. Over 200 miles between all the offices and running back and forth all day. In 100 degree heat. But I love CHERUBS! :) Monday evening, one of the event planners and I met at the ballroom for more work. Yesterday another one of the local volunteers and I met at the florist. Did I mention I live in the middle of nowhere? I'm an hour from Raleigh and Durham so there's no such thing as a quick errand. BUT it's so worth it! The conference is going to be wonderful!!! We have such great guestspeakers!!! There will be about 100 of us there in attendance. It will be wonderful to finally meet so many of you!

The Angel Ball... the biggest task because so much more work is involved will be so magical. We have a great band, local celebrities, the flowers are going to be gorgeous, the garden is just beautiful, a Vogue photographer will be taking portraits of everyone, the auction items... just speechless about those. Trips, concerts, baskets from members... a lesson in flying a fighter pilot jet... just amazing. Planning this event...whew, like planning 10 formal weddings - with 90% donated which means a lot of asking people to donate! Thank goodness for Bridget and Michelle and Anna and Jennifer!!!!! But after all this work, if Craig and I marry, it will definitely be an elopement! :)

The Golf Tournament... was supposed to be the easiest event to plan - not so. It will be wonderful too though. More local celebrities, a 2008 Lexus as the hole-in-prize, Miss North Carolina, long drive champion, PGA players. Just praying it won't be typical 100 degree July weather in NC! At least the drought is over and the grass is green! :)

We have such an amazing group of volunteers here. Our event planners, Signature Events... angels, 2 walking, breathing angels. Mike from Tournament Promotions is just the nicest guy. Bridget, Michelle and the ladies from the Raleigh Junior League... more angels, all of them. Bridget has gone above and beyond. Rachel for all her marketing expertise... thank you. Pat and April for all their support and advice and information. JoLynn, from Victorian Seasons, a long-time client and friend who is doing a lot of the flowers... thank you!!! Jean - our brochure folder, our invitation putter-togetherer.... the best semi-mother-out-of-law a gal could ask for! And Dave and Braden and Garret... what wonderful volunteers! Craig... love of my life... he's a saint and the most wonderful man... he's donated so much time and work into these events. He's driven all over creation with me to meetings, he's folded brochures, he's picked up the dinner tab for several meetings, he's coerced his friends into sponsoring or attending the events, he's driven around neighborhoods with the boys putting flyers in mailboxes. For CHERUBS, for me, in my son's memory. I'm the luckiest woman in the world! And not to downplay all the hard work our CHERUBS volunteers are doing! Writing letters, making calls, scouring the internet for info... I don't know what I'd do without Stephanie, Kara, Corin, Barb, Judi, Heidi, Penny, Kim, Tania, Tara, Elaine and Lynne!!!! Thank you, all of you for all your hard work on these events!!!!

We are going to make such an impact on the CDH community and the local communities here. Raising funds for our 2009 CDH conference on the East Coast, the research site, and more. Raising awareness for Congenital Diaphragmatic Hernia, bringing media attention to CDH and bringing more research attention to CDH. It's been a lot of hard work, months and months of many people dedicating 1000's of hours... but so worth it!

Also in the works, CHERUBS has been asked to underwrite a research grant with a university pediatric surgical department. We would be working with the university, the CDH Study Group and our members. Much like our research site will already be doing - so we're working on this. I will post more details when things are more finalized.

And - did you know there is a celebrity who had a child with CDH? I've been talking to her via her manager and we're trying to get her to be official celebrity spokesperson for CHERUBS. Again, more details after things are finalized.

The CDH Research site... research which the likes has never been done for CDH before! Working with dozens of hospitals, all the best CDH docs around the world and all of YOU!!! I cannot tell you how excited I am about this!!! I love that we have such a great support group here, how much awareness work we do - but I am so looking forward to actually doing something about CDH itself!

Our membership has been growing like crazy the past month or two. I'm not sure why. It's not that they are all new or expectant parents. Just families that are just now finding us. We are now over 2400 members. Wow.

I'm still working on the newsletter. I hope to have it out in the next 2 weeks but it's so hard to find time to finish it and then it's printing and folding and stapling, etc. Thank goodness for Jean!

Our Ohio picnic is in August. I'm really looking forward to seeing everyone again!

After all these events this summer, it's sitting down with the event planners with a strategy for next year's events. The are corporate event planners, fundraisers... they have taken CHERUBS under their wings to help us set up goals for better funding. And I have meetings with the accountant, grant writers and lawyers.... more paperwork for the incorporation and more set up for next year. Next year will be our best year yet with the research site, more events, an outside office and finally, a paid secretary. We've been run by volunteers for 13 years and CHERUBS is too big to run myself now. We need a staff to really do the work that we need to do.

On personal notes.... I will be moving by the end of the year. I am too far from everything and I am hating the commute. And with a secretary next year helping with CHERUBS... it's going to get easier around here finally! I work far far far too much. I am getting older, I don't have the energy to work on my company and CHERUBS for 60 or 70 hours a week like I used to.

My sister, Trisha, and her husband and 4 of their 5 children were in a head on collision in May. Thankfully, they are all alive. The other driver was smoking pot and arguing with someone in that car and crossed over the yellow line. Everyone was injured, my niece spent several days in the hospital, my sister is still in a wheelchair and awaiting surgery on her crushed leg. It will be a very long road for her but really, we are blessed. It could have been so much, much worse.

The boys are playing in 2 baseball leagues. Games every weekend and many weekday evenings. Garret is a wonderful catcher. I was catcher on my baseball team as a kid - and the only girl on the team - so this is a small bond we have, both being catchers. Not that I am any good at all at it or have any advice on it 20 years later! Braden is really great at pitching and shortstop. Both love to slide into bases and are covered with cuts and scraps from being such boys. They will be 13 next month. Teenagers. But they are still boys.. for now. No deep voices, no huge growth spurts. But this may be their last summer as boys instead of teenagers. They are such great boys... I really am lucky. Great guy, with great kids who I adore and who think I'm cool. His family is wonderful too, I adore his parents as well. The ex-wife and I even have no bad vibes at all, no catty female non-sense or feelings of being threatened either way. We can chit chat at baseball games without the slightest bit of awkwardness. I'm very glad there is no drama there. How often does that happen? Very blessed indeed.

Craig has hurt his back. 2 herniated discs. Hopefully steroid shots will prevent the need for surgery. He's feeling much better now than he was a few weeks ago. Prayer request that he avoids surgery please! His hockey career is over, he had to quit the local team. He's upset and I've relieved. 40 years old is too old to play hockey and not get hurt. But now I feel guilty for feeling relieved.

I saw Sex and the City the week it came out... very disappointed. I won't type a spoiler for those of you who haven't seen it but I will say I would've made a different choice than Carrie after what she went through. Definitely not worth all that. <zipping>

I found my dress for the Angel Ball... it's gorgeous. Gorgeous. Love it. But it's too long. I have to have it altered ASAP. I'm 5'9", I've never had anything too long in my life. Looking like I'm walking through a flood - yes. Dragging clothes - no.

When these events are over, I'm going to get back into photography and scrapbooking. I really miss it! And I need to find another personal trainer. I also need to visit the salon ASAP. I need to tone down the blond. Yes, I said blond. Last dye job went a little awry. I'm naturally a brunette - black hair. But I'm pale so I can pull off the blond. It's not the look I was going for though.

So some of you know that I went on a cruise in January... it was amazing. St. Maarten's, St. Thomas, the Princess Cays. I don't recommend St. Maarten's but Craig and I did visit this neat little airport bar where you can lay on the beach and have the plans fly over you... feet away from the landing strip. It was like getting sandblasted. Not even sure why we did except to say that we did it! St. Thomas was beautiful. Blackbeard's Castle was amazing. The ship was amazing. We went with 8 friends and had a blast. Highly, highly, highly recommend it! Next cruise will be the Mediterranean... who knows when, but someday!

Weather here has become nice the past few days. Beautiful in fact. Storms this evening though... we need the rain so I can't complain.

I have new neighbors. A few months ago I could sit on my back porch and watch the sunset for miles. Literally. I am that far out in the country. Then a house was built behind mine. A preacher, his wife and their kids. Seem nice. But I miss the view, I really do.

I locked my keys in my car again last week. I've never done that but the past 5 months, I've done it twice now. Both times angels helped me. First time it was in the parking lot of Target and a stranger walked across the lot, in the freezing cold, to ask me if I was ok. I told her what I'd done and she said she worked for the police department and she called someone to help me. Normally the police won't open a car door unless a child is locked inside (I know, I called before the nice lady came over). The officer came and got me unlocked free of charge. Last week, another officer saved me. Funny story... I was at court for a jury trial over a car accident. A teenager hit me and then sued me. I won the trial. But in the parking lot of the courthouse I backed out and hit... a police car. An undercover DEA car actually. The agent took pity on me as I've never even had a speeding ticket in 20 years of driving and he fixed the car without giving me a ticket. We became friends. He happened to be on duty and patrolling the gas station I was at when I locked my keys in the car again. Not only did he help but 3 strangers stopped and offered help and another person (who turns out to be the officer's cousin - they raise 'em right in that family) called AAA for me. I have been surrounded by good, wonderful, giving, kind people lately! Angels are everywhere.

I also ran into another police angel... when I had to go to the Durham police department for the ABC paperwork it never occurred to me that I'd run into Charles' memory there. He was a friend/date that was on the force and was killed last year. As soon as I walked in the door, there was his photo, huge, on the wall. Wasn't expecting that, caught me off-guard. The officer at the desk remembered me from the funeral, nice guy. I know, without a doubt in my mind, that Charles led me to Craig. That he's watching out for these events, with Shane and my sister, Debra.

Angels are everywhere.

I have rambled enough... but I will try to ramble more often!

Someone figure out how to make these blogs prettier please?

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We are looking for autographed sports items for our silent auction at our CHERUBS Angel Ball on July 26th at Duke Gardens in Durham, NC. More information can be found at http://www.cherubsangelball.org

Any original artwork would be appreciated, especially pieces with an angel or cherub theme. If you have items to donate in honor or in memory of someone or know of an artist who would be willing to participate, please let us know! You can reach us at events@cherubs-cdh.org

Autographed Sports Items Needed For CHERUBS Charity Auction

We are looking for autographed sports items for our silent auction at our CHERUBS Golf Tournament on July 28th at Brier Creek Country Club in Raleigh, NC. More information can be found at http://www.cherubsgolftournament.org

We need any autographed sports items. If you have items to donate in honor or in memory of someone or know of a sports celebrity who would be willing to participate, please let us know! You can reach us at events@cherubs-cdh.org

Do you have a list saved or bookmarked of CDH research sites? A web site or a blog for your cherub?

Please make sure to share them at our Links Library: http://cdhsupport.org/members/links.php

We are trying to update our list of research links and we are conducting a contest to see who can add the most links! It's really easy and not only will it be fun to compete to try to win a free CHERUBS t-shirt and cookbook but you will be helping other CDH families by having this information available to them by adding links to our database!

It's really easy, all you do is:

1. Go to our Links page at http://www.cdhsupport.org/members/links.php
2. On the left of this page there is a form to add a site, fill this out (please make sure to add it to the correct category!) and click Submit
3. Do this for any CDH Research Sites and Articles or Personal CDH Web Sites that you know about or can find

It's that easy! :D

Whomever adds the most links by May 15th will win a CHERUBS T-Shirt and Cookbook!!! And you'll be posted on our site and in our newsletter. :)

Happy Link Adding! :)

Dawn

If 15 families books their rooms before April 30th then CHERUBS will save $600 on the conference room.... since we have a shred of a shoestring budget for this conference it would really help us to be able to save this money! For booking information please visit our site at http://cdhsupport.org/events/conference/

******** Please note that our CHERUBS Member Conference is open to members of CHERUBS only. If you would like to attend our events, please register to become a member. ********

Comfort Suites Hotel RTP / RDU
July 25-26, 2008
5219 Page Rd, Durham, NC

Our conference will include at least 2 guest speakers, including Meaghan Russell from Boston Children's Hospital, who is currently conducting the genetic study on CDH.

Conference attendance is free to members, but members must cover their personal costs (travel, lodging, food, etc).

The following is a preliminary conference schedule that is subject to change. A set schedule, itinerary and brochure will be posted by May 1st.

Friday, July 25, 2008
Comfort Suites

8:00 am to 12:00 noon - Conference
12:00 noon - 1:00 pm - Lunch
1:00 pm - 5:00 pm - Conference

Saturday, July 26, 2008
Pullen Park
9:00 am to 12:00 noon - Conference

A pizza party will be Thursday night.

More information can be found at http://www.cdhsupport.org/events/conference

Please register to attend at http://cdhsupport.org/events/conference/register.php

Hi Everyone,

At our CHERUBS Angel Ball in July we are conducting a silent auction. The auction will include many art pieces by some wonderful artists but also will include baskets donated by businesses and CHERUBS members in honor and memory of loved ones.

We sent this e-mail below to local businesses asking for participation on this auction, but families can participate too! My family will be donating 2 baskets - 1 in memory of my son, Shane (CDH cherub) and 1 in memory of my sister, Debra (lost to cancer). Please consider donating a basket in honor or in memory of someone that you have loved and lost.

You can talk to other CDH families about donating baskets and ideas on what to include in basket on our web site at http://www.cdhsupport.org/members/viewtopic.php?t=1597

Please forward this to family and friends who you think would want to participate! Thank you so much!!!! :)

Dawn

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Dear Sir / Madam,

I am contacting you on behalf of a local charity that I volunteer for, CHERUBS. CHERUBS is hosting a charity Angel Ball at the Sarah P. Duke Gardens on Saturday, July 26, 2008. This will be a beautiful white-tie formal event, with local rock band The Stone Age Romeos playing, 106.1 radio DJ Keith Todd as M.C., a silent auction and much more. Details can be found at http://www.cherubsangelball.org

We are looking for sponsors for the silent auction. We are requesting gift certificates, tickets, or products that can be placed in elegant baskets that will be up for auction. For example, one company is donating a gift certificate to their rental property at Hatteras, a dinner for two at a local restaurant, a gas card, sunglasses, beach towels, sunscreen and a map of the Outter Banks. Ideally, we would love a basket already filled with items representing your company. These will be featured on a table along with your business cards or brochures. This will be a wonderful and beautiful way to advertise your company while supporting a good cause.

In exchange for participating, your company will receive public acknowledgement in the Durham Herald-Sun, Raleigh News & Observer, event materials and on our web site which receives over 30,000 hits per month. The clientele for this event will be upper-class Triangle residents and this would be wonderful exposure for you. Donations would be tax-deductible. Baskets would need to be received by July 1st.

CHERUBS is a non-profit 501(c)III organization that was created to help families of children born with Congenital Diaphragmatic Hernia (CDH). CDH is a severe birth defect that affects 1 in every 2500 babies – over 1500 babies a year in the United States alone. CDH occurs when the baby’s diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and prevent lung growth. Correction requires drastic surgery and long hospital stays for these babies. CDH is fatal in 50% of cases. The cause is not yet known. CHERUBS supports families and medical care professionals by offering information, research, support and raising awareness. CHERUBS, which is run solely by volunteers, receives no grant funding and subsists on donations and fundraisers alone.

If you are interesting in participating please fill out the sponsorship form at http://www.cherubsangelball.org There is a catering sponsorship deadline of May 15th to be listed on the tickets and printed literature. We will be placing an ad in the Durham Herald-Sun and The Raleigh News & Observer at the end of this month so if you would like to be included in this ad please sign up by April 24th.

Thank you so much for your consideration. If you have any questions, please do not hesitate to contact me.

Sincerely,
Dawn M. Torrence
CHERUBS President & Founder

http://www.cdhsupport.org
CHERUBS, 270 Coley Rd, Henderson, NC 27537, USA
events@cherubs-cdh.org
252-492-6003