Reflections on the past 25 years by the CDH International team:
I was planning on writing about this for our first look back at 25 years but as I type this this morning it is with a heavier heart.
When I decided to start the charity in the winter of 1995, I had no idea what to name it. It was meant to be a support group, not a large global, non-profit. I wasn’t egotistical enough to call it the “CDH Charity” or some huge name claiming ownership to all help for these families… who was I do so? I was a 22-year-old mom sitting at my kitchen table with an electric typewriter and no clue what I was doing. I just didn’t want these families to be alone.
So I decided upon the only name that made sense “Cherubs”. Though why I decided to capitalize it is beyond me. Call it inexperience. The official name on the legal documents was “CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support”. I would regret that 1,000,000 times over the years though it did turn out to be incredibly accurate.
I knew in February of 1994 that I wanted to start a charity. As my son lay on a bed in the PICU of Duke University for just a month at that point… I’d seen things that no 19-year-old new mom should have to ever see. But the 2 of the incidents that struck me hardest and changed me forever where losing the 2 other CDH patients we met in that hospital and watching those parents grieve their children. I wanted those babies remembered. Little Preston and Andrea would never be forgotten by those who love them, of course… but I didn’t want the world to forget their fight either. I felt responsible for that because my son survived.
“Cherubs” already had a place in my heart at that point. A newlywed (it was 1991, we married younger then. Don’t judge)… I lost my first baby to miscarriage. It was walking through a store Christmas shopping that I first saw Precious Moments characters. A little snow globe of an angel girl tossing hearts from cloud down to earth. The inscription was something like “Sending my love down to you”…. I don’t remember the exact wording. My love with Precious Moments characters began.
When I found out that I was pregnant with my son, Shane, I had no idea he had CDH. I had no idea what theme to decorate a nursery. I didn’t even know if he was a boy or girl. Once again, I came across a Precious Moments item… a coloring book. I knew that was it. I spent months making nursery items as the company was new and didn’t have anything like that except statues, fabric and a few other things. So I painted cherubs for his walls. I sewed items for his bedding. It made my heart happy to think that my baby would be surrounded by guardian angels to look over him / her. Life was wonderful.
Then Congenital Diaphragmatic Hernia became a part of our vocabulary.
In the hospital, I sat beside his bed sewing. I made his a Christening gown and embroidered those cherubs down the front. I cross-stitched a cover for his baby box.
When Preston died, I ran to the Ronald McDonald House to get a baby blanket for Rhonda and Joe to hold him in instead of those awful hospital blankets. It was blue with Precious Moments cherubs on it.
And that is how I saw Preston and Andrea… beautiful, perfect little baby angels. Cherubs.
Shane’s 1st Birthday party theme was Precious Moments and cherubs. We knew how blessed we were. We didn’t take a single second for granted. We did our best to carry Preston and Andrea with us every single day.
The charity would be named for them. That was no other option considered because this is what was supposed to be. I knew it. I just felt it. They deserved this.
In 1995, cherubs and angels were at the height of popularity in movies, on television, in music, in home decor. They were beautiful, inspiring, hopeful. We were surrounded by them everywhere and that’s what the CDH community desperately needed…. hope. It didn’t seem like a bad idea at the time.
And we literally did carry the cherubs with us everywhere. Shane had pillows with a girl cherub and a boy cherub and he was never without them. I went to look for photos of him with them for this post and realized for the first time that I have few photos of him without one of those pillows.
In 1999, my son became a cherub too.
All 3 original “cherubs” were now actual cherubs.
That fact didn’t sting for me. It bought me peace thinking of them up there working together.
I frequently ask him to watch over the other children. Sometimes, I beg him to rally the cherubs up there to help one of the children here in distress.
He was buried with one of those pillows.
The charity was never about my son or for my son or in memory of my son. It was always about all of these children and inspired by 3 of them. The term “Cherubs” has meant so many things but for us but the actual cherubs it was named for will always be Preston and Andrea.
In 2020, I became acutely aware the term “cherub” was now offensive to those who are against religion, those who competitively pull families into their charities and those parents who are so terrified of losing their children that the mere mention of angels makes them run.
I understand. I respect our differences.
But I must admit, it sometimes it feels like a knife to my heart and a slap in the face of the children who have died and their families to take something so innocent, so painful yet so full of hope… and turn it into something negative. And I take personal offense that anyone could say anything cruel about the term “cherubs” because that word to me will always mean Preston, Andrea, Shane and 1000’s of other children who passed away…. but also 1000’s of other who still fight.
But there’s nothing we can do about how people feel. And we can’t change our history or take away hope. And we won’t forget or hide the children who have died from CDH. So we acknowledge the feelings and differences but march on.
We renamed the charity CDH International a few years ago anyway, but our support division is still “CHERUBS” and will remain so. We won’t erase our work or those children for anyone.
We are not a religious charity. We do not push beliefs upon anyone. We do still use “cherubs” to represent what they always have for us here…. hope against the insurmountable. Courage against this CDH monster. Love watching over these children. Community. Remembering. Honoring. Respecting. Fighting together. Kindness. Support. HOPE.
We include tiny wings in care packages for all the new babies. Because they earn those wings in this fight against CDH. They are inspirational. They are courageous and strong and amazing and miracles. They are cherubs.
A few years ago, Rhonda and Joe came to one of our charity Balls and presented me with this framed Precious Moment’s print “Hallelujah Square”. I had never seen this painting before. It was given to them after Preston died and now was to hang in our office. It hangs over my desk and I look at it many times every day.
I’ve stared at it for hours today instead of getting projects done. I’ve been sick all week and locked in this office to not spread germs to the kids so to say that I’m stir crazy at this moment when I’ve been needed is an understatement.
My heart is heavy this morning because last night, we lost one of our local cherubs. My heart is actually shattered this morning.
Captain Landon fought so hard and was so sweet. It tore my heart out to post this update to our members this morning:
It is with deep sadness that we share the news that 13 month old Landon earned real wings last night.
Landon’s family is local to our headquarters in North Carolina and we have grown very attached to him and his family. Our hearts break every single time we lose any of these children and this morning, they break even harder for this little boy that we personally knew and loved and held.
He fought so hard, overcoming great odds and multiple severe birth defects. His smile was contagious and his spirit unbeatable. His mother, grandmother and sister the strongest women a little guy could ever ask for and we ask for prayers and kind thoughts for them now.
Fly high, Landon… free from tubes and surgeries and pain and soar with all the other cherubs who watch over the little ones still here fighting. We were honored to get to meet a hero like you.
It tore my heart out because I knew this little boy. I love this little boy and his family. Landon and I had a connection. Like 2 old souls who knew each other already. I feel like part of me is gone this morning.
You would think that after 25 years and more hospital visits and funerals than I can count, that I would have built up some type of armor around my heart. But I haven’t. Knowing what his mom, Amanda, and family are going through today is killing me.
Last night, I begged Shane once again to watch over Landon. Begged him to rally the other cherubs and watch over him.
This morning, I asked Shane to make sure to greet Landon when he arrives up there. Because that’s what I believe. And you are free to believe whatever you want and in no way do my beliefs reflect on the charity but I know this family and their beliefs… and this is how I see our boys today as I stare at this painting on the wall in this office for this charity that is supposed to save all these children.
As the charity President… my official stance is that we are not a religious charity and we aren’t. But as a grieving mom who desperately wishes another mom wasn’t grieving right now…. I want to scream “there is NOTHING wrong with the word ‘cherubs’! Nothing wrong with angels! Nothing wrong with HOPE!”.
And I want to scream “You FLY Landon! You soar baby boy! Because you sure earned those wings! You go play happy and free with all those before you and you guys watch over the children down here and all us parents who miss you so!” I know he will. With a little sea captain hat on, because that was his thing… “Captain Landon”. .And he sure ran that ship.
And we will watch over his Momma.
Because no matter the name, that is charity. And we may grow and we may be that huge, international organization now with the big title… but we will never forget why we exist and who we exist for.
And we will never stop representing hope.
The irony of the timing of this post and losing Landon does not escape me. But maybe I was inspired to write this because that painting would be needed today. I sure needed it. Maybe others do too.
– Written by Dawn Ireland, CDH President, charity Founder