What is a "lost" mother?

I want to share with you my dear friend Lindsay's story.

Ten years ago I was sitting in my daughter's neurologist office, explaining my concerns about her health and well-being. Her father and I had split up soon after her second birthday, so I was navigating life on my own, with two incredible girls - one with a severe form of epilepsy and significant global developmental deficits - the other perfectly healthy and thriving. 

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I began to weep as I expressed my deep fears of her having a seizure in the middle of the night and me not knowing about it. Her neurologist, Dr. V, looked right at me and said matter-of-factly, 

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"She will absolutely have seizures you don't know about and there's nothing you can do about that." 

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"But what if she hurts herself?"

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"She will absolutely get hurt sometimes, and there is also nothing you can do about that."

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I was really confused. This was pretty much against everything I believed as a mother of a disabled child, that it's actually okay for things to happen?

Dr. V then explained to me something I had never come across in my four years as a mother with a disabled child. Four years, countless doctors, specialists, therapists, developmental interventionists, and not one time had anyone ever empathized with MY story enough to tell me about the dangerous and real "Lost Mother Syndrome." 

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When you have a child with health problems, disabilities, or a combination of the two - it changes you. It makes you stronger than you ever thought you could be and it cultivates a quiet diligence and fortitude within you. Often times, it feels there is no room for letting your guard down, or taking your senses off high alert. 

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This is where we begin to lose ourselves. We lose deep connection with ourselves and our body because the focus and energy is always elsewhere. We lose connection with our partners and other family members because time and affection cannot be spent on them without overwhelming guilt and worry.

 Our child becomes our life - and everything else can (and does) take the backseat.

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- Lindsay Crowther

Mom to Bryte, Lennox-Gastaut Syndrome and CDKL5 Gene Mutation

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