Rebecca Balfe is a former editor for Love What Matters. She resides in NYC, owning and rescuing adorable cats. She is an avid Lupus fighter and advocate.

Rebecca Balfe is a former editor for Love What Matters. She resides in NYC, owning and rescuing adorable cats. She is an avid Lupus fighter and advocate.
“Before bed, my dad asked if I needed to go the the hospital. As a stubborn 19 year old, I somehow talked my way out of it. I told him I was ‘fine’. The next thing I remember, my parents were rushing downstairs. They immediately tried to put my nebulizer mask on, but for some reason I was pushing it away. I woke up in an ambulance. I still feel guilty about that night.”
“I get a call from the geneticist. The call drops 3 separate times. The most important call of our life and I miss it. I sit and wait. My phone rings again. He says, ‘Genetics just confirmed Evie has Rett Syndrome.’ He says, ‘There’s no cure. We can’t change it. You can’t do anything.’ My heart sank. This was serious.”
“My cousin called my mom screaming when she found out. ‘How can you be happy for him?!’ In public, we get looked at A LOT. It doesn’t matter if we’re at Olive Garden or Home Depot. It’s hard to turn a blind eye to the glares. As much as I wish I wasn’t bothered by my past, it comes bubbling back up. There’s something that happens to one’s confidence when they grow up in an environment like mine.”
“The nurse handed me a box of tissues. I remember pleading with my baby to be okay, my hand on my womb, tears running down. Immediately upon standing, I felt crazy amounts of blood trickling down my leg. I kept thinking that had to be everything, but I felt more released. A little boy. All ten fingers. All ten toes.”
“It took them two days to find my white car in all the fresh snow. Surprisingly, nothing was broken. Once thing’s seemed to be falling into place, that’s when my first seizure happened. I went face down onto the hardwood floor.”
“The last thing I remember was yelling for my mom. She raced up the stairs, only to be shocked. My tiny puppy had grabbed onto my sweater and was pulling with all of his might in the opposite direction to keep me from falling off the toilet and getting yet another concussion. If you talk to any dog mom they’ll tell you their dog is their world, but my dog GAVE me my world.”
“It felt like a bomb went off in our family. My head was swirling with fear, confusion, doubt. We went from being a carefree couple that traveled to full-time caregivers of a medically complex child. Call it intuition, gut instinct. I had no idea what to do or how to do it, but I knew with absolute certainty I was ready.”
“I remember my husband crying. He never cries, so I knew it was serious. I had a new baby and two small children at home. All I could think was, ‘I’m gonna die. I’m not gonna see my kids grow up.’ I’d started bleeding at 6 weeks pregnant. I had 20 ultrasounds and everyone said the baby was fine. But I knew something else was going on.”
“We listed our daughter understanding a heart may not come in time to save her. Love and hope helped us to live through those days of uncertainty. Four months later, our gift of life came.”
“It felt like I was living a double life. ‘Let’s talk about it more tonight at home, okay?’ I said ‘okay’, and shut the door. Half an hour later, she texted me.”