Emily Richey is a graduate of Pace University NYC. She has written and edited for multiple online platforms, including Love What Matters. She spends her free time petting stray cats.
Emily Richey is a graduate of Pace University NYC. She has written and edited for multiple online platforms, including Love What Matters. She spends her free time petting stray cats.
“When I was seven months pregnant, Justin’s health rapidly declined. ‘I don’t know how much strength I have left.’ I think he knew it was time. I wish he wrote letters to the boys, but we never lived a day thinking he would die. I think that was the best way to live.”
“Our road came to a halt soon after. 1 in 30,000 is what we were told. We became extremely concerned. We begged the doctors for answers and we felt defeated.”
“He was always sick. When the doctor was listening to his lungs, he noticed his tongue was twitching. They stuck a probe into his muscles. ’Don’t google the disease.’ Of course, I immediately googled it. I shouldn’t have.”
“I was a complete and total workaholic-girl-boss with my own business. I started noticing headaches often and having spit-up episodes. Part of me thought it was anxiety. These episodes, I found out, were seizures.”
“He was born full-term, weighing just two pounds. He gained five pounds. Then the seizures started. All we saw were tubes, PICC lines, and NG tubes. We weren’t getting any answers.”
“A year after his transplant, Xander started throwing up. I rushed him to the E.R. because I thought he was facing organ rejection. The words were crippling. I wanted to grab the cancer with my bare hands and fight it to death.”
“I decided, ‘I’ll give him till three to see if he starts saying more words.’ We were having more meltdowns and a difficult time consoling him. Meeting all his needs became tough. I didn’t have a ‘real’ diagnosis. I started to dig.”
“The doctor came in, ‘We need to run some tests.’ He doesn’t know. She died inside of ME! I was the one who could have saved her. Do you know how hard it is needing to prove to the world I can keep my children alive? ‘Please stay. Please stay,’ I whispered.”
“A voice inside my head was telling me something was up. She wouldn’t eat and couldn’t roll over. The doctor said, ‘She has barely grown in 4 months.’ I felt a wave of grief. I knew I had to advocate for her.”
“I was in tears during every evaluation. ‘How dare she put labels on him!’ I’m not sure if I was ignorant or in denial. Maybe both. I’ve watched his brother surpass him, and it stings.”