(reposted from 1/ 10)
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!!!!
We will not stop until there is no longer a need for CDH information, support or awareness - because CDH no longer exists.
Showing posts with label Congenital Diaphragmatic Hernia Support Group. Show all posts
Showing posts with label Congenital Diaphragmatic Hernia Support Group. Show all posts
Saturday, November 13, 2010
Tuesday, January 12, 2010
Way back when...
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!!!!
We will not stop until there is no longer a need for CDH information, support or awareness - because CDH no longer exists.
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!!!!
We will not stop until there is no longer a need for CDH information, support or awareness - because CDH no longer exists.
Thursday, August 13, 2009
We Would Like To Welcome New Members
CHERUBS would like to welcome the families of the following cherubs who have joined our membership since May:
Edyn Grace Allinson
Sofia Yvonne Alvarado-Ruiz
Teresa Aragon
Austin Badgley
Anthony Joseph Barbieri
Aneska Bothma
Sunshine Boyd
Riley Owen Brewer
Finley George Burriss
Keira Isabella Caudle
Rhyan Andrew Charles
Baby Chaudhari
Baby Clarkson
Kasey James Colvin
Ashwini Crasto
Charlie D'angelo
Baby DePape
Antony John Didone
Matthew Frank Doerscheln
Floyd Edward Dubois
Robert Lee Dumford
Keane Christian Edwards
Nora El-Gamel
Garrett Lee Ewers
Bailey Matthew Ezernack
Travis Lee Fenn
Baby boy Ferraro
Samuel Finzer
John "Keoni" Nicholas Gonzalez-Rivera
Aidan Dominic Hartley
Brayden Jay Hawkes
Quincy Thomas Haynes
Shelby Hildreth
Alex Hoang
Andrew Hobbs
Julia M Hoffman
Megan Honeycutt
Breanna Hosmer
Sylvia Houselog
Gabriel Aden Xavier Jackson
Richard Keith Johnson
Mohamed Ibrahim Kalmoush
Chase Leroy Kelly
Dallas Aiden Kislow
Ryan Connor Krafft
Leslie Nicole Lafon
Cali Summer Lizarraga
Dustin R Lockett
Lozano Lozano
Joshua Alonzo Lozano
Kiyari Juliet Manriquez
Armida Marqez
Jake John Marshall
Aniyah Renee Martinez
Mia James Mccabe
Lewis Moore
Aaron Lee Murray
James Thomas Naifeh
Cody Ignacio Neil
Nguyen Phuc Nguyen
Kaden Bradley Oldham
Jak Thomas roy Parsons-forshaw
Savanna Rai Payne
Barnaby George Peters
Christian LeRoy Ray
Kalliope Reynolds
Anna Riccioluti
Baby Richard
Bryce Robinson
Children Scott
Baby Serna
Chandler Reid Shannon
Baby Sharp
Madelyn Lilyanne Simonton
Michael Jospeh Skaggs
Scarlette Jayden Skrove
Dakota Marie Tenney
None Thanh Tam
Bailey Jaycob Walters
Nevaeh Nicole Weaver Johnson
Maddox Malakai White
Carlos Mikaere Wilkie
Allie Kathryn Wilson
Caleb Presley Winchester
Lily Angel Winsell
Zoey Anne Wood
Spencer Allan Workman
Noah William Workman
Jacob Thomas Zimmerman
+ 25 other cherubs whose parents chose to not publish their names
Please keep all of these families in your prayers!
Edyn Grace Allinson
Sofia Yvonne Alvarado-Ruiz
Teresa Aragon
Austin Badgley
Anthony Joseph Barbieri
Aneska Bothma
Sunshine Boyd
Riley Owen Brewer
Finley George Burriss
Keira Isabella Caudle
Rhyan Andrew Charles
Baby Chaudhari
Baby Clarkson
Kasey James Colvin
Ashwini Crasto
Charlie D'angelo
Baby DePape
Antony John Didone
Matthew Frank Doerscheln
Floyd Edward Dubois
Robert Lee Dumford
Keane Christian Edwards
Nora El-Gamel
Garrett Lee Ewers
Bailey Matthew Ezernack
Travis Lee Fenn
Baby boy Ferraro
Samuel Finzer
John "Keoni" Nicholas Gonzalez-Rivera
Aidan Dominic Hartley
Brayden Jay Hawkes
Quincy Thomas Haynes
Shelby Hildreth
Alex Hoang
Andrew Hobbs
Julia M Hoffman
Megan Honeycutt
Breanna Hosmer
Sylvia Houselog
Gabriel Aden Xavier Jackson
Richard Keith Johnson
Mohamed Ibrahim Kalmoush
Chase Leroy Kelly
Dallas Aiden Kislow
Ryan Connor Krafft
Leslie Nicole Lafon
Cali Summer Lizarraga
Dustin R Lockett
Lozano Lozano
Joshua Alonzo Lozano
Kiyari Juliet Manriquez
Armida Marqez
Jake John Marshall
Aniyah Renee Martinez
Mia James Mccabe
Lewis Moore
Aaron Lee Murray
James Thomas Naifeh
Cody Ignacio Neil
Nguyen Phuc Nguyen
Kaden Bradley Oldham
Jak Thomas roy Parsons-forshaw
Savanna Rai Payne
Barnaby George Peters
Christian LeRoy Ray
Kalliope Reynolds
Anna Riccioluti
Baby Richard
Bryce Robinson
Children Scott
Baby Serna
Chandler Reid Shannon
Baby Sharp
Madelyn Lilyanne Simonton
Michael Jospeh Skaggs
Scarlette Jayden Skrove
Dakota Marie Tenney
None Thanh Tam
Bailey Jaycob Walters
Nevaeh Nicole Weaver Johnson
Maddox Malakai White
Carlos Mikaere Wilkie
Allie Kathryn Wilson
Caleb Presley Winchester
Lily Angel Winsell
Zoey Anne Wood
Spencer Allan Workman
Noah William Workman
Jacob Thomas Zimmerman
+ 25 other cherubs whose parents chose to not publish their names
Please keep all of these families in your prayers!
Friday, April 10, 2009
We Love It When CDH Families Get Together!
Here at CHERUBS we are strong advocates for CDH families meeting in person and getting to know each other and sharing experiences and support! We have many get-togethers around the world and our annual Congenital Diaphragmatic Hernia International Conference as well. But families often get-together on their own informally and below are photos of 2 such get-togethers.
CDH families meeting in Atlanta:
Carla (Joseph's mom), Lynne (Baer's mom), Marion and Jason (Virginia's parents) and Amy and Steve (Faith's parents)
Our South Carolina Representative, Lynne Brogdon (Baer's mom), rubbing Amy Miles' (Faith's mom) tummy.
Indiana Get-Together:
Barb Wagner (Logan's mom), Corin Nava (Nate's mom), Amy Miles (Faith's mom), Kate Crawford (Shannon's mom) and Stephanie Olivarez (Shelby's mom)
Stephanie and Kate surrounded by gorgeous little girls (Lexi, Lily, Grace and Makayla)
Barb, Corin, Kate and Stephanie
Kate making cookies with the Olivarez girls
Denver Children's Hospital:
Cherub Kristen Moats meets baby cherub, John Michael Larson
If you would like us to post photos of your get-together, please e-mail them to us at membership@cherubs-cdh.org They will be posted in our newsletter and on our blog.
CDH families meeting in Atlanta:
Carla (Joseph's mom), Lynne (Baer's mom), Marion and Jason (Virginia's parents) and Amy and Steve (Faith's parents)
Our South Carolina Representative, Lynne Brogdon (Baer's mom), rubbing Amy Miles' (Faith's mom) tummy.
Barb Wagner (Logan's mom), Corin Nava (Nate's mom), Amy Miles (Faith's mom), Kate Crawford (Shannon's mom) and Stephanie Olivarez (Shelby's mom)
Stephanie and Kate surrounded by gorgeous little girls (Lexi, Lily, Grace and Makayla)
Barb, Corin, Kate and Stephanie
Kate making cookies with the Olivarez girls
Cherub Kristen Moats meets baby cherub, John Michael LarsonIf you would like us to post photos of your get-together, please e-mail them to us at membership@cherubs-cdh.org They will be posted in our newsletter and on our blog.
Wednesday, December 17, 2008
Saturday, December 6, 2008
Hope
"Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today" - Thict Nhat Hanh
Helping Yourself Heal When Your Child Dies
Helping Yourself Heal When Your Child Dies
Allow Yourself to Mourn
Your child has died. You are now faced with the difficult, but important, need to mourn. Mourning is the open expression of your thoughts and feelings regarding the death of your child. It is an essential part of healing.
With the death of your child, your hopes, dreams and plans for the future are turned upside down. You are beginning a journey that is often frightening, painful, and overwhelming. The death of a child results in the most profound bereavement. In fact, sometimes your feelings of grief may be so intense that you do not understand what is happening. This article provides practical suggestions to help you move toward healing in your personal grief experience.
Realize Your Grief is Unique
Your grief is unique. No one will grieve in exactly the same way. Your experience will be influenced by a variety of factors: the relationship you had with the person who died; the circumstances surrounding the death; your emotional support system; and your cultural and religious background.
As a result of these factors, you will grieve in your own special way. Don't try to compare your experience with that of other people or to adopt assumptions about just how long your grief should last. Consider taking a "one-day-at-a-time" approach that allows you to grieve at your own pace.
Allow Yourself to Feel Numb
Feeling dazed or numb when your child dies may well be a part of your early grief experience. You may feel as if the world has suddenly come to a halt. This numbness serves a valuable purpose: it gives your emotions time to catch up with what your mind has told you.
You may feel you are in a dream-like state and that you will wake up and none of this will be true. These feelings of numbness and disbelief help insulate you from the reality of the death until you are more able to tolerate what you don't want to believe.
This Death is "Out of Order"
Because the more natural order is for parents to precede their children in death, you must readapt to a new and seemingly illogical reality. This shocking reality says that even though you are older and have been the protector and provider, you have survived while your child has not. This can be so difficult to comprehend.
Not only has the death of your child violated nature's way, where the young grow up and replace the old, but your personal identity was tied to your child. You may feel impotent and wonder why you couldn't have protected your child from death.
Expect to Feel a Multitude of Emotions
The death of your child can result in a variety of emotions. Confusion, disorganization, fear, guilt, anger and relief are just a few of the emotions you may feel. Sometimes these emotions will follow each other within a short period of time. Or they may occur simultaneously.
As strange as some of these emotions may seem, they are normal and healthy. Allow yourself to learn from these feelings. And don't be surprised if out of nowhere you suddenly experience surges of grief, even at the most unexpected times. These grief attacks can be frightening and leave you feeling overwhelmed. They are, however, a natural response to the death of your child. Find someone who understands your feelings and will allow you to talk about them.
Be Tolerant of Your Physical and Emotional Limits
Your feelings of loss and sadness will probably leave you fatigued. Your ability to think clearly and make decisions may be impaired. And your low-energy level may naturally slow you down.
Respect what your body and mind are telling you. Nurture yourself. Get daily rest. Eat balanced meals. Lighten your schedule as much as possible. Caring for yourself doesn't mean feeling sorry for yourself it means you are using survival skills.
Talk About Your Grief
Express your grief openly. When you share your grief outside yourself, healing occurs. Ignoring your grief won't make it go away; talking about it often makes you feel better. Allow yourself to speak from your heart, not just your head. Doing so doesn't mean you are losing control or going "crazy." It is a normal part of your grief journey.
Watch Out for Cliches
Cliches--trite comments some people make in attempts to diminish your loss--can be extremely painful for you to hear. Comments like, "You are holding up so well," "Time heals all wounds," "Think of what you have to be thankful for" or "You have to be strong for others" are not constructive. While these comments may be well-intended, you do not have to accept them. You have every right to express your grief. No one has the right to take it away.
Develop a Support System
Reaching out to others and accepting support is often difficult, particularly when you hurt so much. But the most compassionate self-action you can do at this difficult time is to find a support system of caring friends and relatives who will provide the understanding you need. Seek out those people who encourage you to be yourself and acknowledge your feelings -- both happy and sad.
A support group may be one of the best ways to help yourself. In a group, you can connect with other parents who have experienced the death of a child. You will be allowed and gently encouraged to talk about your child as much, and as often, as you like.
Sharing the pain won't make it disappear, but it can ease any thoughts that what you are experiencing is crazy, or somehow bad. Support comes in different forms for different people -- support groups, counseling, friends, faith -- find out what combination works best for you and try to make use of them.
Embrace Your Treasure of Memories
Memories are one of the best legacies that exist after the death of a child. You will always remember. Instead of ignoring these memories, share them with your family and friends.
Keep in mind that memories can be tinged with both happiness and sadness. If your memories bring laughter, smile. If your memories bring sadness, then it's all right to cry. Memories that were made in love -- no one can take them away from you.
Gather Important Keepsakes
You may want to collect some important keepsakes that help you treasure your memories. You may want to create a memory book, which is a collection of photos that represent your child's life. Some people create memory boxes to keep special keepsakes in. Then, whenever you want, you can open your memory box and embrace those special memories. The reality that your child has died does not diminish your need to have these objects. They are a tangible, lasting part of the special relationship you had with your child.
Embrace Your Spirituality
If faith is part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because of the death of your child, realize this feeling as a normal part of your grief work. Find someone to talk with who won't be critical of whatever thoughts and feelings you need to explore.
You may hear someone say, "With faith, you don't need to grieve." Don't believe it. Having your personal faith does not insulate you from needing to talk out and explore your thoughts and feelings. To deny your grief is to invite problems to build up inside you. Express your faith, but express your grief as well.
Move toward Your Grief and Heal
To restore your capacity to love you must grieve when your child dies. You can't heal unless you openly express your grief. Denying your grief will only make it become more confusing and overwhelming. Embrace your grief and heal.
Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself. Never forget that the death of your child changes your life forever. It's not that you won't be happy again, it's simply that you will never be exactly the same as you were before the child died.
The experience of grief is powerful. So, too, is your ability to help yourself heal. In doing the work of grieving, you are moving toward a renewed sense of meaning and purpose in your life.
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(note from Dawn): In addition, I think this should also be added; "You have the right to grieve any way that you need to that is healthy. Grief is not an excuse to be cruel or uncompassionate to others. Remember those around you who are grieving as well and also do unto others as you would have them do unto you. Pushing people away, alienating others or taking your anger out on others is not only destructive to your relationships but it makes you feel even more alone in your grief."Monday, November 10, 2008
CDH Support and Friendship at CHERUBS
One of our Advisors made a great observation this week. She said that one thing she's learned in this CDH journey is that you will always come across a few people who believe that they have been victimized more by CDH than anyone else. I agree, unfortunately, those people exist. They have suffered more, their child went through more, they know more, their grief is worse, they will do more for CDH, they are the self-proclaimed "Jesus of CDH" sent to save the world of this birth defect even though they have little experience and even less knowledge of CDH, they will be most popular in the CDH community, they need more support than other parents, their child will be remembered the most, etc.... people whose pain and grief is so great in their own eyes that they fail to see that others are in pain just as much and turn CDH into a competition instead of what it is - a tragic birth defect. These are the people who cause more pain than support, they start arguments, drama, can't get along with others or do whatever their pain leads them to do without a thought of how it could hurt someone else. This type of person exists when dealing with any tragedy or support group, not just CDH. This type of person seems to flourish on listservs, where they have a captive audience and a lot of direct attention to anything they say. In a huge support group of over 2500 people we have fortunately only had a few such people and they were long ago removed from our membership.
The point of this post is.... there is none of that at CHERUBS.
We have not used outdated listservs in a long time. We do not allow drama on our forums or in our membership. Our site and organization has been drama-free for almost 5 years (the last time we had a drama queen we had to remove). No misunderstandings. No cattiness. No mass exodus of members. No quitting of Advisors who can't get along. No mudsling. No backstabbing. No silly childish behavior. No negativity. No judgement. Only support. On the internet where meanness is common and people can hide behind anonymity to say the most cruel things... this is a rarity to have a totally positive and supportive group. And we are so proud of that!
On our site, parents can talk freely without the fear of being judged.
Everyone is heard. Everyone is supported. There are no drama queens. There are no cliques. There are no popular members. Everyone is equal. It doesn't matter if you are an advisor, a board member, a volunteer or a new member - everyone is equal. Parents can log on and ask for prayers. They can brag about their child's achievements. They can vent about how hard it is to deal with CDH. They can share a silly story. They can share their fears. They can cry. And we are here for them, all of them. 24 hours a day, 7 days a week. CHERUBS is here.
The point of this post is.... there is none of that at CHERUBS.
We have not used outdated listservs in a long time. We do not allow drama on our forums or in our membership. Our site and organization has been drama-free for almost 5 years (the last time we had a drama queen we had to remove). No misunderstandings. No cattiness. No mass exodus of members. No quitting of Advisors who can't get along. No mudsling. No backstabbing. No silly childish behavior. No negativity. No judgement. Only support. On the internet where meanness is common and people can hide behind anonymity to say the most cruel things... this is a rarity to have a totally positive and supportive group. And we are so proud of that!
On our site, parents can talk freely without the fear of being judged.
Everyone is heard. Everyone is supported. There are no drama queens. There are no cliques. There are no popular members. Everyone is equal. It doesn't matter if you are an advisor, a board member, a volunteer or a new member - everyone is equal. Parents can log on and ask for prayers. They can brag about their child's achievements. They can vent about how hard it is to deal with CDH. They can share a silly story. They can share their fears. They can cry. And we are here for them, all of them. 24 hours a day, 7 days a week. CHERUBS is here.
Thursday, October 30, 2008
CHERUBS Name & Logos
CHERUBS Logo in 1999:
CHERUBS name was one that was easy to decide on. Baby angels.... named for all the children lost to CDH. Not cherub, as in one child, but cherubs for ALL the children born with CDH. My son was still alive when CHERUBS was created, it was named for Preston and Andrea - the 2 other CDH babies in the hospital that year that didn't survive. CHERUBS was founded to be a support organization, not a foundation, so it was very important to have a name that included all of our children.
CHERUBS was an original name. At the time there were no other organizations with the same name that dealt with birth defects. We were very insistent on not following others foots steps or riding on other's coattails.... we wanted to be independent and this made it harder for us to pave our own way but we are proud that we did. CHERUBS wouldn't be who we are if we were to use a name or slogan similar to anyone else.
50% of children diagnosed with CDH still do not survive. This takes into account ALL babies diagnosed - not just those whose parents chose to continue with the pregnancy and those babies that survived transport to larger medical centers. This statistic includes those who are stillborn, those that are miscarried, terminated, or die before care can be given. This statistic includes those who live minutes, hours, days, weeks, months or years but who pass away from CDH or related CDH issues. 50%. Of the 1600 babies born with CDH each year, 800 will not survive. The cause is still not known.
CHERUBS is named for them... for all CDH babies, survivors and non-survivors - with or without wings. Cherubs.... baby angels. Miraculous children. Children with wings and halos and hope. Our logo reflects that.... a group of child angels. Supporting each other. Older survivors. Newborns.
Our colors are all colors of the rainbow.... pastels and bright colors. No trendy logo colors. No logo dedicated to one child or a symbol of one child. All colors, all ages, all children, all CDH families represented.
The word CHERUBS is in a font that is reminiscent of balloons... both for celebrating life and for those who didn't survive (as grieving parents often send balloons to heaven for our children).
Through the years, our logos grew...
We added research logos to better explain Congenital Diaphragmatic Hernia
We added fundraising event logos.
And logos for our Congenital Diaphragmatic Hernia conferences.
These cherubs represent our real life cherubs, with over 100 different logo characters. These images and logos have been seen around the world. On shirts worn by our members in 38 countries. At conferences. In magazines. In newspapers. On television. On 1000's of web sites.
The word "cherubs" has become synonimous with CDH kids. CDH kids have even been called "cherubs" in the media, in the printed materials of hospitals, and even at medical conferences. If there was ever a "branding" of a corporate name with CDH, it has become "cherubs". And it suits. Because they are all little angels...... cherubs.
Saturday, October 25, 2008
New Contact Information for CHERUBS
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)
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)
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