Just over 7 years ago my husband and I were told at our sons birth he had a grave cardiac defect called Tetrology of Fallot (TOF). He would need open heart surgery (OHS) within the first month of life, a second OHS at 8 months and his most recent surgery at 6 years old. If you’ve ever experienced having a sick child, I am here to say, I am sorry. The grief and sadness are very real. The complete devastation, isolation and depression can be too much at times. I struggled at every turn after he was born. I felt as though I could break down any moment. My emotions were just under the surface of my skin. When I would share about our journey, I felt as if a layer of me was being peeled away. I could feel the emotion rise up in my throat and I would will myself not to cry. At times I couldn’t control it. The tears and grief would just flow out of me like a child who lost a parent.
When my son was about 1-year-old I discovered Hopeful Hearts Foundation, started by my now dear friend Terra Chez. Terra and her husband Adam started the foundation after the loss of their daughter Gracie. I picked up the phone and called Terra. When we finally spoke I felt a huge sense of relief…someone understood my pain. Someone validated me. Someone listened. The heart journey was just beginning.
Through Terra, I met an entire world of heart families. Parents whose kids had different cardiac defects than Sirous. Parents who lost children and somehow managed to wake up in the morning and persevere. Parents who knew what it was like to sleep in a hospital chair for days on end to make sure their child knew they were present. Parents who questioned if their child would lead a normal life.
I found my people.
By allowing myself to be vulnerable, open and honest I met my “Heart Mom Squad.” We have been through some gnarly sh*t together. Rachel, Cecile, Danielle, Christa and Terra, you are my blood, my heart and you feed my soul.
Together we have walked through over 20 open heart surgeries, the loss of 3 children, cardiology appointments, many nights of laughter, crying and by God, fun! We’ve danced at dive bars, eaten some fantastic food, shown up at hospitals, delivered care packages, done spin at SoulCycle and hugged a lot.
Through it all we get to be ourselves. Completely and utterly flawed. Thank you for allowing me to know you. I wouldn’t want to walk this road without you all by my side. You will always be my Heart Sisters!
Sunset in Newport Harbor. Newport Beach, CA. OC Boat Rentals