This September is significant in a lot of ways, as I mentioned in my introduction post, but I never got to go into detail about it.
Firstly, if you're into zodiac signs I'm sure you can already tell I'm a Virgo. I'm a planner and a perfectionist. My birthday was September 4th. This year it fell on Labor Day. I didn't want to get excited about it because I had a feeling that if I did, then I would be let down - Which I was. I was surrounded by family, but most of my friends had other plans or simply couldn't make it - Which was fine, but I still sulked.
Everyone knows the significant days after a loss are usually the hardest. My birthday was a little extra difficult because I got off track and lost focus. I suddenly felt empty again.
However between then and now I had another moment of clarity where I realized I was back tracking and being extremely codependent.
This is the frustrating part. I move forward, I move back - But if I look back at the bigger picture, I notice that even despite my relapses, I am still moving forward a little more and more. It's a very zig-zaggy line, but I am making progress.
September is also Chiari II and Hydrocephalus awareness month. If you don't already know, my son, Isaiah (4 years) was born with spina bifida myeloschesis. Chiari and Hydrocephalus are typical for this diagnosis. Chiari will require a surgery if he becomes symptomatic. Some people try to manage symptoms because the surgery isn't even guaranteed to relieve symptoms. Chiari is when the brain is pulled down into the upper spinal canal, causing pain, trouble swallowing, migraines, vertigo, and can cause extra fluid to be trapped on the brain.
Hydrocephalus is the excess fluid on the brain. Treatment is a device called a shunt, which drains the fluid from the brain to the belly. Isaiah had a shunt placed when he was seven days old. His first shunt malfunction happened when he was five weeks old. He has had a total of four shunt revisions, two of which happened back to back last summer, and two of which were almost completely asymptomatic. There are no known cures or causes for either diagnosis.
Five years ago, on September 25, was diagnosis day. Before this day I had never even heard of spina bifida, or any of the subsequent diagnoses. I went on a whim and took a blood test to rule out genetic defects, and the test for spina bifida rarely comes back wrong if it is an open defect. Isaiah's defect was open, which is why although he has such a low lesion level, he functions much higher. I was told through the duration of my pregnancy that Isaiah would likely walk unassisted, may lose sensation below his knees at worst.
What they didn't tell me is that because his was more rare (myeloschesis, not myelomeningocele) that his would actually be worse. I know spina bifida is a snowflake condition, but I was given hope.
In no way am I blaming anyone but myself, and in no way am I trying to make my life or Isaiah's seem horrible, but for any moms who are being diagnosed or have an infant with spina bifida, you cannot have expectations. You have to work with what your child gives you and run with it. Yes Isaiah has adapted to working in a wheelchair and absolutely loves it. He wouldn't have anything different, I don't think. He has started realizing that he is different, but at this age the world adapts to him and for now I think that's OK. He is so motivated to be independent. In the back of my mind I am scared to death for when he grows up. But I've learned to control those thoughts and stay in the present moment and appreciate what I have right now. Which is pure, true innocence.
Lastly, September would also have been my third wedding anniversary.
On Facebook, my memories from past years keep popping up and yesterday it showed me the receipt that we had paid for our marriage certificate.
And to my surprise, to my indifference, I felt absolutely nothing looking at the picture.
The more I talk about my separation, regardless if it is with someone who has been there all along, or someone I am just opening up to, the more I think to myself how good this has been for me.
It is clear to me now that my husband was checked out of the marriage long before he kicked me out of it.
What kind of person moves in a new girlfriend a month after he leaves his wife, and doesn't bother telling their mother that she's staying the night with their kids?
Who agrees to file for divorce together, and then does it behind my back?
This whole process has made me so humble, finding incredible strength within myself to keep pushing forward even on the days when I literally wanted to die.
I'm okay, and that's okay with me.
"And they lived happily ever after.
Separately."
-Author Unknown
Firstly, if you're into zodiac signs I'm sure you can already tell I'm a Virgo. I'm a planner and a perfectionist. My birthday was September 4th. This year it fell on Labor Day. I didn't want to get excited about it because I had a feeling that if I did, then I would be let down - Which I was. I was surrounded by family, but most of my friends had other plans or simply couldn't make it - Which was fine, but I still sulked.
Everyone knows the significant days after a loss are usually the hardest. My birthday was a little extra difficult because I got off track and lost focus. I suddenly felt empty again.
However between then and now I had another moment of clarity where I realized I was back tracking and being extremely codependent.
This is the frustrating part. I move forward, I move back - But if I look back at the bigger picture, I notice that even despite my relapses, I am still moving forward a little more and more. It's a very zig-zaggy line, but I am making progress.
September is also Chiari II and Hydrocephalus awareness month. If you don't already know, my son, Isaiah (4 years) was born with spina bifida myeloschesis. Chiari and Hydrocephalus are typical for this diagnosis. Chiari will require a surgery if he becomes symptomatic. Some people try to manage symptoms because the surgery isn't even guaranteed to relieve symptoms. Chiari is when the brain is pulled down into the upper spinal canal, causing pain, trouble swallowing, migraines, vertigo, and can cause extra fluid to be trapped on the brain.
Hydrocephalus is the excess fluid on the brain. Treatment is a device called a shunt, which drains the fluid from the brain to the belly. Isaiah had a shunt placed when he was seven days old. His first shunt malfunction happened when he was five weeks old. He has had a total of four shunt revisions, two of which happened back to back last summer, and two of which were almost completely asymptomatic. There are no known cures or causes for either diagnosis.
Five years ago, on September 25, was diagnosis day. Before this day I had never even heard of spina bifida, or any of the subsequent diagnoses. I went on a whim and took a blood test to rule out genetic defects, and the test for spina bifida rarely comes back wrong if it is an open defect. Isaiah's defect was open, which is why although he has such a low lesion level, he functions much higher. I was told through the duration of my pregnancy that Isaiah would likely walk unassisted, may lose sensation below his knees at worst.
What they didn't tell me is that because his was more rare (myeloschesis, not myelomeningocele) that his would actually be worse. I know spina bifida is a snowflake condition, but I was given hope.
In no way am I blaming anyone but myself, and in no way am I trying to make my life or Isaiah's seem horrible, but for any moms who are being diagnosed or have an infant with spina bifida, you cannot have expectations. You have to work with what your child gives you and run with it. Yes Isaiah has adapted to working in a wheelchair and absolutely loves it. He wouldn't have anything different, I don't think. He has started realizing that he is different, but at this age the world adapts to him and for now I think that's OK. He is so motivated to be independent. In the back of my mind I am scared to death for when he grows up. But I've learned to control those thoughts and stay in the present moment and appreciate what I have right now. Which is pure, true innocence.
Lastly, September would also have been my third wedding anniversary.
On Facebook, my memories from past years keep popping up and yesterday it showed me the receipt that we had paid for our marriage certificate.
And to my surprise, to my indifference, I felt absolutely nothing looking at the picture.
The more I talk about my separation, regardless if it is with someone who has been there all along, or someone I am just opening up to, the more I think to myself how good this has been for me.
It is clear to me now that my husband was checked out of the marriage long before he kicked me out of it.
What kind of person moves in a new girlfriend a month after he leaves his wife, and doesn't bother telling their mother that she's staying the night with their kids?
Who agrees to file for divorce together, and then does it behind my back?
This whole process has made me so humble, finding incredible strength within myself to keep pushing forward even on the days when I literally wanted to die.
I'm okay, and that's okay with me.
"And they lived happily ever after.
Separately."
-Author Unknown
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