Isolation Island of the Next Generation - Magda Zalewska

It began prenatally when I heard, "your daughter has hydrocephalus" two weeks before her due date. It was then that I realized how much more alone a parent can be when now dealing with a child's medical condition. No one to turn to, and doctors shoving pamphlets and websites at you when you just need someone to listen and understand.

I struggled with my 3- and 4-year-old sons at home while I battled sleepless nights, sleepless drives to be with my baby daughter during our hardest moments in the NICU (Neonatal Intensive Care Unit), and during her brain surgery at 4 days old. The lack of communication and consent, maybe even care for some, when an emotional mom just wants real answers is really hard. To think that this struggle never went away, the situation just changed.

No child care wanted the liability of a child that had seizures; what was I supposed to do? As a single mom, how am I supposed to feed us and keep the lights on when I can't return to my job as a child care director. I found EI (Early Intervention) for my daughter and as my career.

To this day, I am frustrated with the lack of support families get, now more than ever. We think just because we have connections to the internet, we have all the answers? If anything, all this information keeps you guessing if you're doing it right, what's poison and what's not, where's the next safe place and best school district? Constantly looking for answers elsewhere... We need someone we can trust to turn to. Caregivers need to be heard. Mental health is real. Let's protect our babies.