Almost seven years ago my son was born with a not-so-rare birth defect called congenital diaphragmatic hernia (CDH). Every year there are approximately 1,000 – 2,000 babies born with CDH in the United States, according to statistics provided by Columbia University Medical Center. Once his diagnosis was confirmed when I was 21 weeks pregnant, I did what every parent does after discovering a diagnosis about their child. I Googled it.
I searched the Internet hoping to find information about what to expect, and from there other parents. I discovered I was not alone. My husband and I leapt into a world no parent ever wants to be a part of. I read stories about other children who survived. I read stories about other children who didn’t survive. I connected on social media and became intertwined forever into a community that welcomed me with open arms.
The day my son was born, prayer requests were sent out to this amazing network of parents who lifted me in support. The surgical path my son took was difficult, but right there on Facebook where other moms sharing their stories of their children who had similar paths and were now at home thriving. I found strength in their support.
When the unthinkable happened and my son died, I felt their love and their tears. I turned to one of many support organizations and connected with them on a deeper level. I planned his funeral with the help of a woman who ten years earlier planned her own daughter’s funeral, and I leaned on her for support, which she gave without restriction.
After his death I proudly wore a ribbon with a certain color in family pictures with the urn holding my son’s ashes. I passed out silicone bracelets to friends and family. Many of them still wear those bracelets today, which touch my heart in a way I could never explain.
I unknowingly opened the door to years of ridicule and harassment, of which I have never spoken publicly about. I knew there were several support organizations in the CDH community, and I didn’t understand why they had separate awareness colors. With one organization, asking why opened the door to a floodgate of hate about the other. The other organization asked that the past remain in past, though they would be willing to speak about it I was interested in hearing their side. I honestly didn’t really want to know, nor did I want to pick a side. I donated money to both organizations. I supported both on social media.
As time passed and the grieving started, I bonded more closely with several women, even meeting a few in person. My husband and I put our hearts into remembering our son by helping other NICU families. We raised money and accepted donations to provide care packages to families local to us – regardless of the reason their child was in the NICU. It helped our hearts to help others, which is something we are still very passionate about today.
Unknowingly, I was labeled a troublemaker by one organization. I was blasted, both privately and publicly for the way I chose to honor my son’s memory. The damage was done by the time I realized what had happened. I tearfully told my husband how I had no idea what happened, or how I offended one group so much. My name was run through the mud in half of the small CDH community. By the time I realized how deep the divide ran I was too far in to remain neutral. I kept my mouth shut and focused on supporting others, hoping that time would erase whatever damage I had unknowingly done.
But it was too late. I was called a ‘Mean Girl’, defriended on Facebook, banned from a support organization, and a website had been created in which screenshots of my Facebook page were posted. Images of my son were stolen and put on a website I was never asked permission to be a part of. It took me almost a year to get them taken down.
My story, sadly, is not unique. Nor is this type of online bullying uniquely a part of the CDH community. It is everywhere, in every community. There have been many pleas asking ‘Can’t we all just get along?’ or ‘Let’s fight CDH, not each other’. I would love nothing more than to see a unified community only supporting each other.
That is a reality that will never happen. It’s easy to hide behind a computer screen and scream while typing horrible things.
What I am asking for today is respect. Respect each other and the work everyone does. Leave the past in the past. Not just in the CDH community, but everywhere. While I do only support one organization in the CDH community today, I also very much recognize that all groups do good things.
New families find support in many places, and that is good. Money is being raised to help research and that is good. No group will ever be perfect and that is okay. Move forward and leave the competition at the door. It’s not important to shout to the world how you’re number, or the world’s first. It’s important to support those families that need support TODAY and NOW.
I know I will be blasted because of this article. My name will be run through mud again, and I’m okay with that. There is nothing wrong with encouraging the community to leave the past in the past and move forward with what is important now. I ask those that will jump on this as an opportunity to attack me to think about new families finding you today. Is the attack you are about to write about me good for them to see? Are opening old wounds time and time again supportive of their needs? Or can you share words of strength to get them through the day? Can you support their needs and forget your own desire to jump on me?
This goes for all communities bounded in turmoil for past mistakes. Realize this: there are three sides to every story –
- Side A
- Side B
- THE TRUTH
Give to others what you cannot find for yourself. Peace.