• Joan Medlen

It’s now a sandwich press…

I don’t think I’m quite to the point that I feel like a panini, but it’s getting close. I’m in the press but the heat is not on yet.

Many parents, particularly Mothers, of children with disabilities choose self-employment or part-time work in order to accommodate the demands of meetings, doctor’s appointments, and so on. Currently, I’m looking at statistics that illuminate the cost of this on families. It is interesting (more on that another day).

The cost that I believe is missing in statistics is the lack of paid time off when one is self-employed.

My Mother’s journey with cancer is in it’s final weeks. She has entered hospice care, there’s nothing more that can be done to battle this or keep it at bay. My father has really risen to the occasion in caring for her. He is, however, experiencing my life when Andy is ill. The difference? His situation may go on for a couple of months. So he needs release time, the ability to go out and get food and do his banking and so on.

I spend around two hours a day over there, if not more.  Some days I am there with Mom so  Dad takes advantage and goes to take care of life. Emotionally, I’ve been absent from my jobs since Mom went in the hospital in mid February.

The guilt is now settling in. And the lack of billable time is hitting me hard.

Thus the beginning of the sandwich press – financially.

This is the statistic not included in reports about the financial impact of having a child with a disability. Not only is there loss of potential income due t the choice to work part-time or be self-employed, but there is the impact of not being able to take family leave at a time like this.

When my brain is back at work, I hope to really look at this in a more educated fashion. For now, it helps to share the fatigue of it.

#cancer #disability #hospice

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