It was a holiday weekend, and when I called the pharmacy on Thursday morning I found out that insurance was insisting upon prior authorization from the doctor for a medication my son had been taking for years. I looked up the nurse’s direct line on my speed dial and rang right into his voicemail. Dang. The message states he’s off work until after the holiday weekend. Double dang. After regrouping, making a half dozen more phone calls, and cursing more than a few times, I think I have it all set. One last call to the pharmacy to double-check that we’re all set, and medication is back-ordered, we’re out of luck until Monday. The race is back on and after a few more phone calls the nurse assures me that they have a few samples in the office to get my son through the weekend, I just need to come to the office to pick them up. There goes another two hours. And so it is that a quick medication refill becomes two days worth of stress, frustration, and work.
I hear a lot about the invisible workload of motherhood, and I could not agree more. Remaining mindful of the constant needs of everyone in the family is a full-time job, and I have a second one, the medical needs of my child.
When I answer the question of “do you have kids?” and give a very condensed edition of my family, I’m often called a saint (which I question every time I curse like a sailor over frustrating situations). And yes, there is a certain mindfulness and generosity of spirit that develops from caring for my children and meeting the high number of needs involved. Yet that comes naturally, it’s part of the territory. What really gets to me is the amount of administrative nonsense I have to do in order to make the day-to-day care of my child happen.
My son needs medical supplies, but there isn’t a single supplier that deals with all of the types of supplies he needs, so I end up working with three different suppliers for the monthly orders. His number of doctors runs into the double digits, some needing annual appointments, others semi-annual, and others quarterly. Add in the pharmacy and schools and the more urgent medical situations that arise more frequently than with medically typical children, and I often feel like I have two full-time jobs, sometimes more.
The real kicker is when the frustration of the other work interferes with the care and comfort of my child. When he needs something and I’m on the phone, again. When he gets frustrated that I’m always busy and acts out to get my attention. I don’t want to sound like a negative Nancy, but this background work is really for the birds.
This invisible workload of motherhood is real, and the invisible workload of medical motherhood is multiplied. If only I could hire an assistant.
Alethea Mshar is a Special Needs Mom and Blogger.
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Thank you for this! Perfectly written.