To Parents, From a Family in 'COVID-19 Mode' for 10 Years

I was talking to a friend today who asked me, “is there a small dark corner of your brain that wonders what it’s going to be like for the rest of us to take a fraction of the chance on our kids health that you have had to?”

I have a 10-year-old daughter named Charlie-Anne who was diagnosed with SMA type 1 (like ALS) and given “a few months” to live at 6 months of age. What would the usual cause of death be? The common cold.

For 10 years we have lived in COVID 19 mode. We bought out all the sanitizer and Lysol wipes way before it was cool.

Like a lot of people I’m reading/hearing about now, sometimes we just had to let our guard down, and take “risks.” It really f***ing sucks when playdates and school and public library outings are considered risks.
And, we had to weigh the risks. Is it worth it? Is it important to her? Is keeping her from the opportunity more detrimental than letting her experience some normalcy?  I had to trust my gut and my heart and hope it wouldn’t steer me wrong.

So, she went to school, sometimes, and to the library, sometimes, and had play dates , sometimes. We’ve even taken her to Disneyland twice.

But sometimes she got sick, really sick. Charlie has been hospitalized many times. She’s almost been taken from us many times. Every time she was attached to those machines and struggling to breathe, I’d go through the Rolodex of people and places we’d been, looking for the culprit, needing something or someone to blame. I punished myself for relaxing too much. I prayed to God to not take her. I promised I would be more diligent in her care and to never expose her again.

And then, miraculously, she’d get better. And she’d come home again. And my brain and heart would recover. It buried the hospital stays. It erased details. And then she’d pine for normalcy again, and I would give it to her, in small doses.

Sometimes she’d be at school with her nurse and her educational assistant and I’d be at work or running errands and bam — panic would hit me. What if she gets sick? What if she chokes at school? What am I doing? It’s not worth it! And I’d call her nurse, get talked down and relax again.

Sometimes I’d put her to bed and go to bed myself and an hour into my sleep I’d sit up and panic, “I forgot to wash her hands after she touched that toy the other kid touched!” And then I’d wait three days in fear for the symptoms to present themselves.

I still do all of the above, daily. This has been our life for 10.5 years. I have PTSD from all of the close calls, and I’ve learned I’ll never do the right thing 100 percent of the time, and there will always be fear and guilt.

So instead, I look to her to help me make a lot of the difficult decisions. I want to protect her and give her a great life and see her happy. I’m afraid of what that could mean for her, and will always repent for my “sins” of taking too many “risks” each and every time she is hospitalized. But I am doing the best I can do, and you will too. And your kiddos love you for it.

I’m sorry this is everyone’s new normal, and fortunately/unfortunately, in my experience, you’ll get great at it.

For more on parenting during quarantine, check out the following stories from our community:

• Please Wash Your Hands Year-Round — Not ‘Just’ Because of the Coronavirus
• Creative Activities to Try With Your Kids While We’re Isolated at Home
• How We Can Promote Continuity in Special Education Programs During the COVID-19 Pandemic
• What It’s Like Parenting a Medically Complex Child During the Coronavirus Outbreak