On Childlessness

Not my kid. Sure wish he were. Especially if he were not related to me.

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It will always be a sorrow of my life that I do not have a child.

I thought through it all. What would this take?

I had a consult with a high-risk OB/GYN. She had delivered a VEDS woman. I would want a C-section under general anesthesia, so my delicate spine would suffer as little trauma as possible. No labor. No epidural. Take baby out as soon as possible. But then, I would have major surgery to heal from. No easy way to deliver a baby. 

I had a consult with a researcher who had cared for many pregnant EDS women. Would I be able to recover from carrying a child? Hypermobility increases during pregnancy. Dysautonomia can worsen. Then there would be the demands of a newborn. How would my spine handle that extra wear and tear? My hands? Could I endure the sleep deprivation? Would be a signficant strain.

I spent so much of my life sick and out of the game. Sign up for another round of disability voluntarily? I have already lost my mind from it.

I got every genetic study available, in hopes of finding the cause of my Ehlers-Danlos, so I could do IVF and screen EDS out. This is a condition I would not wish on my worst enemy, although some of them have it.

Not everyone knows how bad life can be severely affected by Ehlers-Danlos. I sure do. Presentation varies tremendously, even within one family. There is a 50% chance of passing it on and a wildcard on how big a disaster it could be. Could not find the cause of my problem, could not screen it out.

Can I take care of a sick child? That is a lot of work. A healthy child is a lot of work. Kids can have other problems, too. Does a child deserve more than I can give? Yes.

Do I have family nearby to help me? No.

Can I afford nannies? No.

With just the two of us, Mr. Pennington can work hard on his career, and I can take care of myself. Within my limitations, we have quality of life. It would be a lot for him to come home and help sick me and baby, or sick me and sick baby. 

Seemed like it would be too damaging to me, too difficult for us.

There were other concerns.

Any other horrible illnesses in my family that possibly have a genetic component? Yes. My mother was psychotic. For myself, I even refuse all drugs that may cause psychosis: tramadol, weed. A bit extreme, perhaps, but until the brain is better understood, I will be conservative in my choices. I cannot go another round with psychosis.

What if my child looked like my mother? Or my father? Sometimes I am startled to look in the mirror and see who is there. Faces I would prefer never to see again.

If I had a loose-as-a-sack-of-marbles baby, I would give that child shots of Vitamin C, an unproven, non-standard treatment for my complex, poorly understood disease which cannot be diagnosed in infancy or early childhood. That could be a battle with CPS. CPS is scary. They could dispute the diagnosis, they could dispute the treatment. They could charge me with Munchausen By Proxy. They could say who could or could not treat my kid. They could take my kid away. Could I endure that? No.

May I tell you a secret?

I have a fantasy I torture myself with.

As crazy as CPS is, and the foster system is, I fantasize that CPS removed us from our home when I was growing up even just once. Although it makes my palms sweat to think of what my father would have done to us if we had talked to CPS alone. The police had talked to us alone, but never anyone from CPS. We knew to tell the police everything was fine. They were only looking for reasons to leave, anyway. That was obvious even to six-year-old me. Nicole Brown Simpson was having similar problems with the LAPD, not far away. 

My father was one slick guy who could talk his way out of anything. Maybe CPS did know, but he shut it down? 

One day I made a list of every adult that I know of who knew something of the violent horror show going on in our home. It was a long list. Then I compared it to the mandatory reporting laws in the state of California, which became broader as I grew up. I wrote a whole post about it. It is sitting in Drafts, too ugly to move to Scheduled.

Growing up I did not know I was seriously ill. I did not know I was a crime victim. I did not know I had chronic feelings of terror. That is the way it had always been.

When I was 17, I went to school with a black eye. I had been assaulted in our dining room. My father snickered. My mother looked pleased. I was not going to go to school. My parents did not care if I went to school. But a teacher did. My eye was super black, my face swollen. She looked at it and told me what makeup to cover it with, so I did. Then I parted my hair on the other side and faded away even more.

I remember drifting above myself in the days after my black eye. I had not gotten sucker punched since I was 14 and never in the face. I had been raised to think that anything they did to me was okay, so I had nothing to say about it, except I knew not to say. I went into a complete state of terror, beyond my usual chronic terror. I hardly slept, sometimes 2 or 4 hours. Maybe an unrefreshing 6 sometimes. My parents did not ask, notice or care that i stopped sleeping. They would have scoffed at it if they had known. I would stay up until 2 or 4 in the morning just staring in wonder about where my sleep had gone. I never caught up on sleep. I could not think anymore. I was so tired. I could not remember which corner of an envelope a stamp went on. I remember crying a lot at school after that, and getting easily confused.

My insomnia went on for years and years and destroyed any shred of health I had.

What if that mandatory reporter had taken me to file a police report? That would have changed the course of my life. She had nervously giggled it away. I tried to find her recently, so I could write her a letter and tell her how much I hate her for that, that what she did was the most devastating thing anyone ever did to me. If she had done what the law required, maybe I would not have lost the ability to sleep. Maybe I would not have completely forgotten the first 25 years of my life. I cannot find her. Maybe she is dead.

I get a headache thinking about all of that now.

Oh well. Ehlers-Danlos Syndrome is worse. 

Childlessness. Did I make the right choice? Unsure.

I never thought I would get this well. The other day I was slinging around my friend’s 40 pound four-year-old. No problems. Not even sore the next day. Wish I had a pic!

The arthritis in hips and knees healed, and most of it my spine. My bone strength is normal. What? Never expected that. That was beyond my wildest dreams.

Did I make the right choice? Maybe not.

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