COVID-19

What does “opening up” after the pandemic mean for our vulnerable children?

You will usually find that posts on this site more factual or experience-based, so this post may seem uncharacteristic. Then again, 2020 certainly has not been a typical with the presence of the Coronavirus pandemic. None of us would question that as parents of medically fragile children, we are on high-alert when it comes to illnesses. We are ultra-careful in keeping any bugs away from them because we know the impact. We fear that an illness like COVID-19 that threatens even the healthiest people could certainly become catastrophic for our kids.

Reducing risk for our children

In the past few months, our lives have changed into something none of us would have imagined. The revolving door of caregivers and therapists is probably not revolving so much. Some of us have chosen to stop caregivers coming to our homes altogether while others have limited the number of caregivers to reduce exposure risk.

At the beginning of this pandemic in March, my husband and I almost stopped all nurses from entering our home. I remember saying to the nursing scheduler, “Just for the next few weeks, we really don’t want anyone coming in or out of our house”. A FEW WEEKS? Well here I am writing this post in JUNE. That’s why I’m grateful we changed our minds and chose to continue services with one nurse who exclusively cares for our son.

Social (but physical) Distancing

We are in a NYC suburb, so my experience may be different from yours, but I don’t think any of us anticipated we would be “distancing” to this degree for this long.

The interesting part is, there is something strangely comforting about this whole social distancing phenomenon. I’m not sure if you would agree. Even in the pre-pandemic era, we often stayed home because our children were ill. We frequently declined invitations to gatherings in fear that our child will come down with a simple cold. That “simple” cold would unnecessarily complicate or worsen our child’s not-so-simple underlying condition. Weren’t we somewhat socially isolated anyway? I feel as though the stay-at-home orders finally made it acceptable for us to stay home and allowed us to feel like everyone else. Maybe, it even allowed other folks to feel like us for a bit and get a glimpse of our lives?

Now what?

As curves flatten around the country, communities are starting to open up. Where does that leave our families and our fragile children? Do we re-introduce our caregivers slowly back into our homes? Do we avoid having anyone come in until we just can’t do it alone anymore? When do we see grandparents and other family? Will the emotional toll of social isolation be a greater risk for our children than the risk of contracting COVID-19?

I truly don’t know the answers to these questions and they will not be the same for all of us. People need to work, care for other family members, remain healthy themselves, and care for their fragile children at the same time. Anything is feasible for a week or two, even a few months, but I’m just not sure what exactly will be sustainable…possibly into 2021???!!!

I am of the opinion that each of us needs to recognize our needs and our limitations and make decisions accordingly. There’s no right or wrong answer and I try not to judge other parents. I hope you would do the same. That said, I am a health care provider. I fully believe that we all have a continued public responsibility to avoid spreading this virus while balancing our lives. But as this country begins to open, how do we keep our vulnerable children safe while others might begin to resume life in the “new pandemic normal”? What should our “new normal” be?

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