Yes, I Live in Fear

 A year ago, Bennett was hospitalized for almost 3 weeks with RSV. He was almost intubated and I didn’t know if he would be coming home. I watched my child struggle to breathe for over an hour while three PICU nurses worked on him. This happened daily during his stay.

Yes, I live in fear. I started living in fear for my child’s life the first time he was rushed in an ambulance to the hospital at 7 months old, not knowing if he would live.

After he was hospitalized for two weeks with the common cold in September of 2019, I didn’t want to send him back to preschool. I had to constantly weigh the risks with the rewards and if I didn’t send him, we would have to forfeit his therapies and services. I inquired about homebound school, but was told he didn’t qualify. I was also told that if he didn’t attend school in Kindergarten, we would be penalized. We’ll cross that bridge when we get to it next year.

When “Covid is over”, our lives will not go back to “normal” like everyone else’s. Our lives stopped being normal the first time Bennett was hospitalized. We have sheltered our boy from others for a year now. How will this look in the future and how can we continue to protect him, I don’t know. It’s not just Covid, it’s any virus that can cause him severe illness that, if he survives, will require months to recover from and extra therapies to gain back lost strength and skills. 

This is our way of life now in order to protect our child. A parent’s love is the most powerful force in the world. Each night when we tuck him in bed, I give him the biggest kisses because I can’t be sure it won’t be the last time. 

People can judge us for our choices to protect our child, but unless they have experienced what we go through daily with our child’s medical needs, or watched their child struggle to breathe in a hospital for weeks on end, they will never truly understand. 

We don’t know how long we have with our precious boy here on Earth. When you become a parent, that means putting your child’s health and well-being first. We will continue to live in fear, and love, as long as our angel is with us.


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