When You Live Your Hardest Life

I am determined to document this experience. I know that I am not alone. I am determined to share with others so they know that they are also not alone.

I am living my hardest life. About a year ago I said crassly, I would not stress about things money could solve. I knew what it meant, and I knew I now lived in an extremely privileged paradigm with resources that allowed me to believe that statement. Then karma, or guilt, or life decides to make choices, they unanimously decided to give me a heartache that money can’t solve.

Her behavior continues to deteriorate. Her life is hard to live. Her days are hard, and her moments are hard. We met with professionals, and the most heartbreaking thing, is they all agreed. They agreed that her tiny little body is not working correctly. That it is a problem money can’t solve.

I held her down for nine vials of blood to rule out physical causes. (And we both sobbed.)

Now I meet with more professionals, and beg insurance companies to cover her care. I figure out what in-network and out-of-network means. I spoke with a professional today, and said I would happily pay for fee-for-serve; she quoted me $400/appointment. We need two assessments in one week to get started.

I have a day of phone calls ahead of me. I have to figure out who is paying for what care, while navigating the challenging existence of this sweet baby; her life is hard.

Today I watched as she hurt her sissy. I watched as she hurt her friend with her words. I watched as she struggled to breath. I watched as she struggled to stop shaking. I watched as she desperately needed solace.

The tiniest, loving a story. 

I listened as a doctor asked about sexual and physical abuse, because that’s where we are. I listened as they questioned her care. I listened as they questioned the security we provide. I listened as they questioned my mothering. The very thing I hold closest to my heart; the very thing I am failing at. I listened as they saw what I see. They see the sweetest tiny human suffering, and no one knows what is wrong.

So, life gave me a problem money can’t solve. Life gave me the most gorgeous tiny human, who struggles to walk gracefully through this life; and all I do is cry, and make phone calls.

1 thought on “When You Live Your Hardest Life”

  1. Hang in there. I have been there/am there too. It comes in waves–there are harder and easier years, both in terms of how she experiences things and how you do. The improvements are infinitesimal and then all of a sudden they are huge. And it was my parenting, and her life, and her constitution, and hormones/development. Parenting is the only thing you can change though, so they focus on that because it is alterable.


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