"Just three weeks ago, I found out that our two-months-old boy has a genetic mutation," the email said. "I am still at a grieving phase and didn't tell my friends or my many family members about the baby's situation yet. I wonder how you broke this news to your friends and family? I find it extremely difficult since my emotions are complicated. And I tend to isolate myself. Any insights or advice?"
I knew what this mom was feeling, because I wrestled with it right after Max was born. I had a nice email birth announcement all prepared, the addresses entered—all I had to do was fill in the date, name, height and weight. Then Max had seizures, and doctors discovered he'd had a stroke. It took me at least a day to let my parents and sister know. I don't remember exactly what I said, but I was straight up: "Max had a stroke.... Yes, babies can have strokes.... We don't yet know." I said the same to a few close friends.
I spared my family the possibilities doctors had warned us about—that Max might never walk or talk, that he could be cognitively impaired and have vision and hearing issues. I wanted to ease them into this. They'd been so excited for Max's arrival and I couldn't bear for them to be devastated.
I wasn't quite sure what to say to other people. It was difficult to think straight; I was reeling from the shock and sadness. The message I finally sent out: "We had our baby three days ago. His name is Max and he weighs 7 pounds and 8 ounces. There was some trouble at birth and we don't know what the future holds, but we do know that we have a beautiful boy."
Looking back, keeping things general at first was the best thing, for us. Dave and I were ourselves floundering for answers and struggling to not drown in grief. It would have been too much to share more. Over time, we'd have more detailed conversations with friends and family about risks, concerns and fears. And over time, as Max grew and flourished, the grief would recede—replaced with real optimism and hope, and the joy that he brought us.
How did you tell friends and family your child had special needs?
I knew what this mom was feeling, because I wrestled with it right after Max was born. I had a nice email birth announcement all prepared, the addresses entered—all I had to do was fill in the date, name, height and weight. Then Max had seizures, and doctors discovered he'd had a stroke. It took me at least a day to let my parents and sister know. I don't remember exactly what I said, but I was straight up: "Max had a stroke.... Yes, babies can have strokes.... We don't yet know." I said the same to a few close friends.
I spared my family the possibilities doctors had warned us about—that Max might never walk or talk, that he could be cognitively impaired and have vision and hearing issues. I wanted to ease them into this. They'd been so excited for Max's arrival and I couldn't bear for them to be devastated.
I wasn't quite sure what to say to other people. It was difficult to think straight; I was reeling from the shock and sadness. The message I finally sent out: "We had our baby three days ago. His name is Max and he weighs 7 pounds and 8 ounces. There was some trouble at birth and we don't know what the future holds, but we do know that we have a beautiful boy."
Looking back, keeping things general at first was the best thing, for us. Dave and I were ourselves floundering for answers and struggling to not drown in grief. It would have been too much to share more. Over time, we'd have more detailed conversations with friends and family about risks, concerns and fears. And over time, as Max grew and flourished, the grief would recede—replaced with real optimism and hope, and the joy that he brought us.
How did you tell friends and family your child had special needs?
