“I wrote the single hardest thing: ‘I don’t like being a parent.’ His meltdowns consist of screaming, hitting, throwing, breaking things, slamming doors, spitting, you name it. I have to restrain him. I poured my heart out, frustrated, at my wits end. Then I got a message. ‘I think your son has PANDAS/PANS. Have him tested.’ Then the warning came: Some people don’t believe in this diagnosis.”
“I don’t pick out school clothes anymore. There’s no one to nurse to sleep. I can’t remember the last time I cut up spaghetti, blew on soup because it was too hot. When they need socks now, they find them. And when they’re hungry? They grab their own snack. There were so many times I wished for these days. Now, I’m standing smack dab in the middle of them, grieving the past.”
“After I placed my muffin on the table, I noticed a pile of filthy, worn bags filled with her belongings. A large piece of folded cardboard peeked out from the top of the bag. Immediately after I sat down, she asked me a question. ‘Have you seen any phone books anywhere?’”
“You saw me at my best today, and you saw me at my worst. We cuddled on the couch and your bed head was pressed into my chest. I smelled your hair and whispered I love you. I also lectured you about LISTENING and NOT INTERRUPTING, and was way grumpier than I needed to be. Later, I laid on your bed and apologized for being a jerk.”
“5 hours after she was born, they needed life-flighted her to another hospital. ‘Your baby is breathing a hundred breaths per minute.’ I was numb. She stayed on oxygen for two months, but there was still no diagnosis. Her file read, ‘Unknown respiratory issues at birth.’ I felt hopeless for answers.”
“Immediately, the nurse midwife started asking me questions. ‘In the last 2 weeks, have you had thoughts of harming yourself or taking your own life most days, some days, or not at all?’ Me: ‘Most days.’ My throat became dry and tight. I couldn’t hide it anymore.”
“I’m seeing so many posts in groups saying, ‘My kid isn’t autistic, but we will carry the blue bucket too, so people won’t be rude to my child.’ And I want to admit something. My first initial reaction was: ‘Ok, so now people are taking an autism thing and making it about their non-autistic kid. WRONG.”
“I want to know if my kid saw the new boy sitting by himself at recess and looked the other way. Saw the little girl with worn-out, hand-me-down clothes and laughed. If he was rude to his teacher when she got her own math problem wrong. In the grand scheme of things, who they’re becoming will have greater lasting effects.”
“I did not know Heather existed. In the early 80’s, high school in Southern California presented many opportunities to throw caution to the wind. As a 17-year-old boy, caution was thrown as often as possible. Caution here, caution there, caution was thrown everywhere. On that fateful night, I was enjoying a late dinner with my wife when I got the news.”
“I have to say ‘see you later’ to my husband soon and my heart is broken. We have been preparing for this awful day. I have my spouse wear a sweatshirt every day for a week before he leaves so when I’m lying in bed bawling, I can at least have his scent to give me a small amount of sanity. Your husband’s 3-day business trip is not a comparison, but I’m still sad to see you without him. Because it does suck and I won’t judge you.”
