(repost from 2008)
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 3400 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
Showing posts with label diaphragmatic hernia. Show all posts
Showing posts with label diaphragmatic hernia. Show all posts
Saturday, November 13, 2010
Thursday, January 22, 2009
(Repost) No One Knows
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
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
No One Knows....
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
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
Tuesday, September 2, 2008
Stories of Cherubs Vol. II
"Stories of Cherubs Vol. II" coming out in time for the holidays! To submit your child's story you must be a member of CHERUBS & give publishing permission on your membership form. Then just e-mail your story and photo to membership@cherubs-cdh.org with your cherub's name and date(s) in the subject line. Submission deadline is October 15th!
You can still purchase "Stories of Cherubs" on our cafepress store at: http://www.cafepress.com/cherubs.91971767
Over 500 pages and 300 stories and photos of children born with Congenital Diaphragmatic Hernia. Families tell tales of what life is like to have a child with CDH and to sometimes lose those children. Heartfelt and honest, these stories are a wonderful tribute to cherubs and their families. This book is must have for family members and friends who struggle to understand CDH as well as wonderful guidebook for new and expectant CDH parents.
Friday, January 11, 2008
Grey's Anatomy and Diaphragmatic Hernia Awareness
Last night's episode of Gray's Anatomy featured a child with DH. You can view it on ABC's web site.
We're asking all CDH parents, family and friends to please post to Gray's Anatomy's message board to try to bring more awareness to CDH:
http://abc.go.com/primetime/greysanatomy/index?pn=mb&tsn=-1&cat=30931&tid=181433
Please, go, post your story, post the link to CHERUBS (http://www.cdhsupport.org) so other parents can find support too and please, most importantly, help us to raise awareness!
Please forward this all your MySpace Friends!
Thank you all!
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
http://www.cdhsupport.org
We're asking all CDH parents, family and friends to please post to Gray's Anatomy's message board to try to bring more awareness to CDH:
http://abc.go.com/primetime/greysanatomy/index?pn=mb&tsn=-1&cat=30931&tid=181433
Please, go, post your story, post the link to CHERUBS (http://www.cdhsupport.org) so other parents can find support too and please, most importantly, help us to raise awareness!
Please forward this all your MySpace Friends!
Thank you all!
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
http://www.cdhsupport.org
Tuesday, December 18, 2007
Please help CHERUBS to provide information to CDH Families!
Help CHERUBS to provide information to CDH Families by being a CDH Info Packet Angel! :)
You can print our Congenital Diaphragmatic Hernia Parent Reference Guide directly from our web site and take copies to your doctors so that the next CDH family that comes along will have information and sources of support. It's just a few cents to print and it would help so much! You can also print inside them "Donated in honor / memory of __________".
http://www.cdhsupport.org/members/dload.php
Or you can have a Packet Party! Packets include our Parent Reference Guide, brochure, old newsletters, new newsletter, Parent Membership Form, and other hand outs. This is a great project for your family reunion, remember a cherub on their birthday or memorial day for a cherub who has passed away, a fun project at a birthday party for a surviving cherub!
http://www.cdhsupport.org/members/viewtopic.php?t=609
You can print our Congenital Diaphragmatic Hernia Parent Reference Guide directly from our web site and take copies to your doctors so that the next CDH family that comes along will have information and sources of support. It's just a few cents to print and it would help so much! You can also print inside them "Donated in honor / memory of __________".
http://www.cdhsupport.org/members/dload.php
Or you can have a Packet Party! Packets include our Parent Reference Guide, brochure, old newsletters, new newsletter, Parent Membership Form, and other hand outs. This is a great project for your family reunion, remember a cherub on their birthday or memorial day for a cherub who has passed away, a fun project at a birthday party for a surviving cherub!
http://www.cdhsupport.org/members/viewtopic.php?t=609
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