My daughter, Eden, now in second grade, was born with a rare genetic deletion—so rare it does not have a name. She lives on a feeding tube, endures various chronic medical challenges, cognitive impairment, severe autism, and requires around-the-clock care.

I have often felt like a shut-in over the past almost-decade since she was born—I have missed countless social gatherings, activities and events for my other child, and even everyday outings like going to the grocery store as a family. Our house looks and runs like a very loving, slightly disorganized hospital, complete with the syringes, nebulizers, and medications to prove it.

Over the years, I have discovered that what makes life manageable is to spend time with others and take breaks from the demands of someone else’s needs. Yet, this is difficult to access because of the shortage of personal care attendants (PCA) and home health care workers.

Read more in Newsweek.

Written by External Article
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