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Peace of Mind, For Ramona
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I can feel the strength of my daughter Ramona now; She kicks and pushes my body and mind more than I had ever imagined.
More often than not this pregnancy, I’ve wanted to run back to familiarity, towards comfort, crawl into the comfort of my own womb because this is hard. Fetal position hard.
What guides me now is opposite that; I need to open towards what terrifies me; I need to understand that; the world outside of this womb and comfort and familiarity.
Recent Ultrasounds and now an MRI suggest that Ramona will need medical care beyond what I can give her myself. I am not a brain surgeon and I won’t pretend to think I am, for her sake.
With this in mind, I want someone who has embraced what I have not; I want the most qualified to perform a delicate operation on her.
After Ramona is born, removing an inter-hemispheric cyst is a crucial step for her development. Her left brain ventricle has been pushing into her right because of this cyst. It was thought that she was experiencing hydrocephaly because of this peculiarity shown on ultrasound; the ultrasound technician in Boise wasn't convinced that it isn’t hydrocephaly; if it isn’t a cyst that means that the fluid her body is producing will still need an outlet, surgery.
I’ve had a few weeks to digest the initial hydrocephaly diagnosis but the recent MRI suggested that Ramona is additionally missing her corpus callosum. This is the structure that connects her left and right brain. Colossal agenesis is the term for this.
The MRI also suggested that she may be experiencing a disorder called lissencephaly. Lissencephaly is a neurological migration disorder. Her brain has not been forming the normal connections it should have for her gestational age. This was a suggestion and not yet a diagnosis.
I won’t pretend that this isn’t terrifying. What I do know is that she has a strong heart and that I will nurture her in any way I can.
What I want is for Ramona to receive the best neurological care she can. This disorder, these disorders; I want to make sense of them for her sake and mine. I feel alone in this though I know I am not; I know that there are individuals who have traveled this path and they know how to help; and for those that want to help I offer my own struggle.
My struggle right now is financial. I have not been able to work consistently or put my mind towards money at all. My mind consumed now by how to afford the care she needs, how to have this opportunity for her when the cost of living close enough to the care she needs feels impossible. At the same time, how I can’t afford to NOT offer this care; no matter what the cost.
I feel a shame, a vulnerability in asking for financial support in this way but I know Ramona would not feel this; I would never let her to feel shame for the help she needs. I need to listen to her right now; this subtle advice of our connection.
More often than not this pregnancy, I’ve wanted to run back to familiarity, towards comfort, crawl into the comfort of my own womb because this is hard. Fetal position hard.
What guides me now is opposite that; I need to open towards what terrifies me; I need to understand that; the world outside of this womb and comfort and familiarity.
Recent Ultrasounds and now an MRI suggest that Ramona will need medical care beyond what I can give her myself. I am not a brain surgeon and I won’t pretend to think I am, for her sake.
With this in mind, I want someone who has embraced what I have not; I want the most qualified to perform a delicate operation on her.
After Ramona is born, removing an inter-hemispheric cyst is a crucial step for her development. Her left brain ventricle has been pushing into her right because of this cyst. It was thought that she was experiencing hydrocephaly because of this peculiarity shown on ultrasound; the ultrasound technician in Boise wasn't convinced that it isn’t hydrocephaly; if it isn’t a cyst that means that the fluid her body is producing will still need an outlet, surgery.
I’ve had a few weeks to digest the initial hydrocephaly diagnosis but the recent MRI suggested that Ramona is additionally missing her corpus callosum. This is the structure that connects her left and right brain. Colossal agenesis is the term for this.
The MRI also suggested that she may be experiencing a disorder called lissencephaly. Lissencephaly is a neurological migration disorder. Her brain has not been forming the normal connections it should have for her gestational age. This was a suggestion and not yet a diagnosis.
I won’t pretend that this isn’t terrifying. What I do know is that she has a strong heart and that I will nurture her in any way I can.
What I want is for Ramona to receive the best neurological care she can. This disorder, these disorders; I want to make sense of them for her sake and mine. I feel alone in this though I know I am not; I know that there are individuals who have traveled this path and they know how to help; and for those that want to help I offer my own struggle.
My struggle right now is financial. I have not been able to work consistently or put my mind towards money at all. My mind consumed now by how to afford the care she needs, how to have this opportunity for her when the cost of living close enough to the care she needs feels impossible. At the same time, how I can’t afford to NOT offer this care; no matter what the cost.
I feel a shame, a vulnerability in asking for financial support in this way but I know Ramona would not feel this; I would never let her to feel shame for the help she needs. I need to listen to her right now; this subtle advice of our connection.