For most of my life, my community was my family. My father, mother, and sister were my entire world. We moved so much throughout my childhood that they were my home, and the house we were in really didn’t matter.
As I got older, and my friendships matured, my community started to grow. My husband first joined my community years ago as my high school boyfriend. When we got married, I added his family into my community as well.
My community also consists of some amazing friends that I’m so honored to know. These are people who I’ve bonded with through shared experiences, shared faith, similar likes and dislikes, and even some who I have connected with on a heart level. Some have become permanent fixtures in my life, while others just stayed for a little while. Each one adding to my story, and impacting me greatly.
When my unborn daughter, Aria was diagnosed with a major congenital defect, I turned to my community of friends, and family for support. They were incredible. They supplied us with so much love, and prayed endlessly. But there was one problem. We kept hearing the words “I can’t imagine what you’re going through.” It wasn’t wrong for them to say that. I appreciated the honesty. It’s true, they didn’t know what we were experiencing. But unfortunately, that started to cause a lot of feelings of isolation for us.
It’s so important to be around people who just get it. I needed to communicate with people who understood what I was talking about when I said things like CVR, hydrops, type II CCAM, and pulmonary hypoplasia. I needed people who didn’t need me to explain my feelings, because they already knew.
So I found my place in two different CCAM support groups. Those people provided me with a wealth of knowledge, and an overwhelming amount of support. On one of the hardest days of our journey, as we fought for our unborn daughter’s life, a CCAM mom in England called me. She let me vent about all of the tough decisions we were facing. She let me cry, and helped me to figure out the questions I still needed to ask our doctors. But most importantly, she listened to me with ears that knew my struggle. I had never met her, and she had nothing to gain from that phone call, but she listened anyways. That was the first time I really began to understand the importance of community.
We also joined hands with an amazing team of doctors, nurses, and hospital staff. They were such a massive part of our journey, and probably saw more of our pain than our closest friends and relatives.
When Aria’s condition worsened, and we opted to continue the pregnancy anyways, we became part of a community of parents choosing to carry their baby to birth despite a poor or fatal prenatal diagnosis. We were only in this community for a few days, because Aria was born and passed away shortly after her diagnosis became life threatening. But the support we received still helped us immensely.
After losing Aria, we found ourselves feeling isolated yet again. CCAM is rarely fatal. Only 15% of the cases become this severe, and there is no known reason as to why this happens. I can count on one hand the number of mothers that I know personally who have lost a baby to CCAM. While I am grateful so many families were spared from this pain, there is so much difficulty in being in a support group that is filled with success stories, and not understanding why we weren’t one of them.
So once again, we turned to our family and friends, and we were showered with so much love. But we were also faced with the same problem, yet again. As support rolled in, we continued to hear people say, “I can’t imagine what you are going through.” And the loneliness returned. Could I really be the only one?
But it turns out that I wasn’t alone. Not by a long shot, because I found yet another community. This one is filled with parents who have also lost a baby. I have joined hands with so many grieving parents, many without even meeting in person. I have poured out my pain in front of them, and they have supported me through some of the darkest moments of my grief. I have received messages from women just days after their loss – their heartbreak so intensely raw, and desperately searching for an understanding ear to hear their stories. As much as I wish no one else ever had to join this community, it is always an incredible honor for me to be the one someone feels comfortable speaking to.
But none of these communities would exist if one person never stood up in front of the world and said, “This is my story.” And these communities never would have grown if countless more didn’t stand up beside them and say, “me too.”
It doesn’t matter what you are struggling with. Maybe you lost a child, or a spouse, or a parent. Maybe you are dealing with postpartum depression, or another form of mental illness. Perhaps you have endured abuse, or had to walk a difficult path through life. I can promise you this, you are not alone. You belong to a community, and if you cannot find one, perhaps that is the world’s way of telling you that you are brave enough to stand up and tell your story. To share it with the world, so that we can grab onto your hands and say “me too.”