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We Are the Parents of the Forgotten in the Pandemic

We are the parents of the forgotten. Our kids have complex medical issues. We hook them up to IV pumps or feed them through tubes.  They use every ounce of energy they have just to get through the day and then at night we hook them up to technology- life support to sustain them for another day. They are brilliant, hilarious, mature kids who have been through much more in their short lives than most adults.

Before the COVID-19 pandemic, our lives were already complex. We worked hard every day to keep them safe, learned how to be their full-time nurses, avoided people during cold and flu season, and tried to balance normal life with specialist appointments and hospital admissions. We worried about how the years of medical trauma they’ve endured will affect their mental health and what we can do to support them. We worried about their siblings too, and about how much they have had to sacrifice over the years.

When COVID-19 hit, we sprung into action. We isolated in our homes, adapted to life on Zoom, and quickly learned how to order everything from medical supplies to groceries online. We rolled with the punches, including delayed medical procedures and med shortage after med shortage.

We waited with bated breath every time the world would open back up. We watched people gather and live life normally while we remained isolated inside of our homes waiting for the next wave — or the next variant.

Even though many of our children are vaccinated, we still isolate. We have no idea how COVID-19 would affect our kids, so we carry on. We only leave the house for fresh air or visits with our child’s medical team that cannot be done virtually.

As we watch the world open up again — while hospitals are full of patients with COVID and new variants loom on the horizon — we are terrified. We are afraid that people have given up, admitted defeat, and forgotten about the most vulnerable people in our society. We watch people protest, refuse to be vaccinated or even wear masks, and we wonder if life will ever return to our version of normal ever again. We silently care for our children and cling to the hope that one day we will feel safe enough to emerge from our bubbles.

To the other parents who are in shoes like ours, the parents of the forgotten — or so it seems. I see you. I know you are not OK and I share your worries. We can all sit together in the dark until the storm passes, and we can enjoy the sun and rainbows for a while before the rain comes once more.

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