A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care? http://www.cdhsupport.org
Monday, January 27, 2014
When Shane died, so many CDH parents told me "you now know both sides and you're head of CHERUBS. It's like it was meant to be you were his mom".
At first I thought "What the heck?!? I don't want to be meant to have lost my son in order to run a charity!". I thought it was quite rude and downplayed my son's life. But soon, very soon, I learned they were right.
I am so grateful to have had Shane 6 and a half years. To know what it's like to take care of a CDH survivor, especially to know what it's like to deal with long hospitalizations, complications, having good doctors and awful doctors, feeding issues, disabilities, IEP's, reherniations, delays, allergies, trach, etc. I don't say "I understand how you feel" to other CDH parents without truly understanding how they feel. I do understand. I do know. I have been there, I didn't read it in a book or see it on-line. I lived it. Yet, I am an expert at NOTHING but my own son's medical care and history. Even though my son wasn't born last year or a few years ago - medical care of these kids hasn't changed much at all, sadly. I felt guilty too that my son was still alive when others died. I felt angry that we were cheated out of "normal". My journey was the same as those today. But, I will not tell another parent what to do, where to go, what procedure to have. I never pretended to have all the answers, to have been the almighty mom who saved my son. I counted every single blessing every single day. I still do. I do not share my story often because my focus isn't his story... the charity is here to help ALL these babies and families. But just because I don't talk about my son and my journey with CDH all the time doesn't mean that I don't KNOW. It's just more important to me to hear your stories than share my own.
And I know this sounds wrong, but I am grateful to know grief and to be able to understand and be sensitive to other grieving parents. Our stories might be a bit different but the pain of having your heart ripped out of your chest and grieving for your child is the same. Rebuilding your life, questioning everything, anger, blame, guilt, more anger... I know that road well. I don't just feel some abstract sadness and guilt when someone loses a loved one... I know exactly how they feel and my sadness for them is knowing the road they are now on and the pain that is there every single day and the fact that they no longer even have a hope of "normal someday". Give me abnormal over the death of my child every day of the week! Anyone who says that raising a disabled or special child is harder than grief is full of #$&% and self-pity and never lost a child.... God bless them! I know, I've done both. It's not apples to oranges and they are both hard - it's night and day and they are both hard but one is full of light and one full of darkness. I know what it's like to be jealous of those with healthy, living children. I know what it's like to be so angry at those who don't appreciate their blessings. I know what it's like to put toys on a grave instead of under a Christmas tree. I wish to God I didn't know, but I do.
I suppose those people were right. That it is a blessing that I had Shane and lost him and also run CHERUBS (I say "run CHERUBS" generally as President - there are a lot of people who make our charity run!).
So what's the point in this status? I've been watching and reading a lot over the past few weeks. I've seen this huge division develop between survivors and non-survivors families. I've seen posts, comments, etc that are so insensitive and clueless it makes my head spin. I've seen know-it-alls offering "hope" to new parents who truly know a drop of water in an ocean about CDH yet they are posting medical advice. I've even see a few "my family has suffered more than any other family in the history of CDH" posts which obviously isn't setting well with others. I've seen a lot of anger encouraged in some grieving groups and no real help. I've seen whole groups of people alienated and angry because someone said something that unknowingly insulted 100's of families on a different path than theirs. I've seen cliques, groups, pages started up just for survivors, just for grieving.... because so many have no clue that YES we are all able to work together against CDH and help each other and support each other despite going down different roads with CDH. And YES there is a place where you can go that people DO understand! YES, we can all learn from each other and support each other. Because that's why CHERUBS was started. And that's why with everything in me for the rest of my life I will make sure that ALL families are welcome at a place that does understand.
CHERUBS does know. We do understand. We are there for ALL CDH Families. No one parent knows more. No one child is more important. No one path is harder than anyone else's. Everyone is equal, everyone is important, everyone is valued and everyone can work together against CDH. Everyone. Every single child is a miracle, no matter what the outcome. Every single cherub matters and that's why we are named cherubS. When we all work TOGETHER and support each other, we learn more, we go farther to help more families, we share stories and experiences that make all of us better parents no matter the outcome we've had. CDH has bought us together... to me that's a bond stronger than any path to lead us apart.
So know we are here. Know there are Reps that care about YOU and YOUR child too! Know that you have a big CDH family and the door is always open.