In this journey with Daniel, I have met dozens of inspiring mothers along the way. They are mothers of medically complex children.
They have surrendered their precious babies to the Pediatric Intensive Care Unit. They have had to somehow continue breathing while their heart is lying in a hospital bed for weeks and weeks and weeks. They have had to function and find joy in a world of meds and appointments and physical therapy and g-tubes and oxygen tanks. They have had to watch their babies suffer while the rest of the world goes on around them.
I have met very few of the children of these women. Usually, we met in the Ronald McDonald House lounge of the PICU, and it is against the rules to go into other rooms. Many times I spoke to the moms over the phone. You see, none of us go out into public often, and especially not around other kids. Minor illnesses can send our babies back to the hospital. We all feel intense PTSD about going back to the hospital, so it means our children are sequestered, tucked away from the world of germs and pathogens. (Can you imagine having to think– “Is this worth risking my child’s life for?” before leaving your house? That’s what we are up against. But I digress.)
I am beginning a new blog series called “Warrior Spotlight.” I am going to share the stories of these incredible children (and young adults!) and their hero moms with you. These are people I met through friends, people I met in the PICU, and people I knew already but didn’t really know.
Why am I going to highlight the child and not the mother? Because our baby’s story is our story. Everything we do is to give our baby a chance at a good life. The best way I can show you these amazing women is by showing you their beautiful, strong, unique children.
I started this blog in May of 2018, and since I began, its purpose has evolved. Initially I created it so that I could keep people informed of Daniel’s progress.
Then it became more of a diary of sorts. It is incredibly cathartic and healing for me to put my feelings down in writing. It swirls in my head and heart, and when I get it down in writing, I can find meaning in the chaos.
For the last several months, I have felt my new purpose with a feverish intensity. I must share with others. At first these “others” were other parents of babies with congenital heart defects. Now I realize all of us have our own pain. Many of these feelings and thoughts I have can be meaningful for people going through other types of struggles.
Why am I inspired to share with others?
Why would I put my family’s journey out there so publicly?
Why am I allowing myself to be so vulnerable in these posts for all the world to see?
Because of HEART MOMS.
Almost immediately from the time Daniel was diagnosed, mothers of children (and adults) with congenital heart defects rushed to support me. Many were women I didn’t know; some were people I knew, but I had been oblivious to their story the whole time I knew them.
When Daniel was diagnosed, these women came out of the woodwork to support me. I met one of my aunt Pam’s Facebook friends whose adult son had HLHS. This woman, her husband, and son met with me! She has been an amazing source of support through all of it. I reconnected with a friend from years ago whose youngest daughter has a heart defect, and she spent hours on the phone with me on multiple occasions. While getting my hair cut, my hair stylist told me about a friend of hers from high school whose baby has a heart defect, and this girl I didn’t even know called me and shared all about her daughter with me. There were four others who were friends of friends, people I didn’t know and had never met, all immediately and whole-heartedly reached out to support a person they didn’t know. One of my co-workers (whom I had never met personally) at my small school was pregnant with a baby with CHD. She has shared her son’s journey every step of the way.
Then there were the people I knew, people I had never reached out to. A former student, my cousin, my dear friend from church. Despite the fact that I had never supported them with their struggles, they immediately reached out to me. My former student’s family had me over for coffee. I’ve spent hours on the phone with my cousin and my friend from church.
That is the kind of heart mom I want to be. I want to actively support all struggling families around me. I want to make them feel heard, less alone, and less invisible.
By the grace of God, my world has opened up and my heart has grown. Maybe by showing you a little bit of their stories, yours will, too.