The tapestry of the life of a medically complex family

Archive for March, 2020


Welcome to our life. I’m sad you’re all getting a taste of it but I am glad for those who are doing their part to slow the spread. Social isolation is our way of life every winter, every year, for 13 years so far.

Last winter was our best winter. Only 2 bouts of pneumonia needed antibiotics & it’s been years since we were inpatient. Our last inpatient stay was that late summer that Enterovirus went -quite literally- viral. We are not careless in any weather but summers are generally better for my kids to socialize.

I had been hoping for a loosening of our routines this winter. I was trying to be more flexible visiting family after illnesses. We even went to visit a cousin for her birthday about 10 days after they had had a cold. Then the news of C-19 hitting the states hit.

We haven’t been out for groceries nor a walk in 3+ weeks. My oldest was forced to work through today. He washes his hands outdoors; sanitizes his phone, hat , belt & shoes; and immediately showers and fully changes his clothes when he comes in. His clothing goes straight into a hot wash and dry & we breathe a little easier. He keeps mostly to himself. He knows that if he comes into contact with someone with it, he could spread it asymptomatically.

He is taking the next 2 weeks off without pay. Although he has earned sick time, his employer refuses to pay him for it without a sick note FOR HIM- HE has to be sick in their world. Not killing his relatives for whom he IS the ONLY back-up is not a good enough excuse. The trach twins’ specialists can’t write him a not because they are not his doctor. His doctor can’t write a note because he doesn’t KNOW his siblings… It’s a missing link in the task of keeping my younger kids safe.

For the rest of you, I know it’s odd not to plan to just run to the grocery any time the milk is low or you want peas. I’m hoping that at some point life returns to almost normal for you but for know I want you to know that we appreciate your efforts at social distancing. We understand the fear you are feeling about collecting your mail or considering produce. We are here with you in solidarity to flatten the curve so that there’s a shot my family & others you know can avoid getting sick and not having access to care. Hoping you remain in good health and safe at home.