CHERUBS is almost 15 yrs old. 15 years old in February. Wow! We have achieved so much over the years. Some parents remember what it was like to have a CDH child 15 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, respiratory therapists, another CDH mom, neonatalogists 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 copied 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 am so proud to say that our Medical Advisors and conference speakers are the best in the world!
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.
15 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.
12 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. We started our listservs on Yahoo in 1998 and then upgraded to forums, which are safer and more user friendly. By trial and error, we learned. With no one to teach us, we learned.
Now, in 2010 there are many support groups. Anyone who can create a free blog or listserv or Facebook page and fill out a form on the IRS site with free software can create a non-profit support group. How amazing it is that so much has changed and how I wish it had been that easy for us! 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 15 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. We are still leading the way and inspiring others.
How far we all have come….. how far CHERUBS and the CDH community has come in 15 years. Happy Birthday CHERUBS!!!!
Ohio Picnic Wrap Up
Posted on: October 5, 2009
We had a small group of both new and old members this year. Pictures coming soon!
Ohio Picnic
Posted on: September 11, 2009
We have scheduled it for October 3rd 1pm at the Homestead Park in Hilliard,Oh. For more info contact Sarah 419-512-3446
CHERUBS Ohio Get Together
Posted on: August 4, 2009
Anyone interested in attending our annual Ohio get together in Columbus feel free to contact me at 419-512-3446 or by email at sdeskins@cherubs-cdh.org! Time and date are under works to try to find a convenient timeframe for the majority of those displaying interest as our Ohio group is a little on the small side.
2009 Show Flyers Printed
Posted on: May 13, 2009
Our new flyers are ready. All registered last year will recieve new flyers by mail. Will be hitting the Bennington Glen Show this weekend.
Updates!
Posted on: February 3, 2009
I would love to add some Ohio member’s stories to the Stories section, so please feel free to send them in!
The International conference dates are set with schedule of events at cdhsupport.org
The Pennsylvania get together is planned for June at pacherubs.wordpress.com
Also are inviting families who pray to remember CDH on May 17th for the Day of Prayer for CDH, those of you who attend church are invited to introduce CHERUBS to your congration for prayer on that day as well.
Sarah
The New Year
Posted on: January 26, 2009
We have a whole grocery list of things going on this year at CHERUBS! I hope that 2009 will be the year for some big changes in the CDH world! With the trademark suit going on and some new faces in politics, along with so many new members to our group, what couldn’t happen? Visit our parent site http://www.cdhsupport.org for the latest breakdown of our goings-on and keep checking back with us as I get our blog up and running.
Also, please feel free to email me your own stories so I can get our Ohio members on the blog! sdeskins@cherubs-cdh.org
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.
Dawn Torrence Williamson- CHERUBS President and Founder
Our new blog
Posted on: November 14, 2008
I just started putting together this blog for the Ohio CHERUBS community, and it’s still a skeleton! Please don’t pass us by, you can always visit us at cdhsupport.org while I’m in the building process!
sarah
Welcome to CHERUBS Ohio!
Posted on: November 7, 2008
If you have found us, that means you or a loved one are facing the prospect of having a child born with CDH, a Congenital DIaphragmatic Hernia. Though it can sometimes feel like you are completely alone, CHERUBS has been here for 14 years to assure you you aren’t. We are the Ohio branch of CHERUBS, one community of an international organization here to support the families of CDH and educate the public. We are Tara Hall and Sarah Deskins, and we are both parents of children born with CDH. (For our individual stories, see our pages .) Here you will fimnd not only our stories, but those of other Ohio members; links to our main community at CHERUBS, and upcoming CDH events in Ohio. We hope you find the support you are looking for here at CHERUBS.
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