Wednesday, January 8, 2014

The Truth of It

*names have been changed to protect the identity of the children*

Hi, my name is Mirabelle.
I did not think sharing my story would be helpful to me or anyone else; I thought my story to be rather mundane and boring.  While preparing to go meet a cousin’s newborn baby boy however, I realized that some part of my story may resonate with others and perhaps in the telling, I may too find some healing.  So thank you for reading my story to the end, since it is long. I hope that I make some points that help you on the journey that you are on, that so many of us are on, and that telling this part of my story here brings some healing.

I have four children: three boys and one girl.  My oldest was born just after I had turned 20 in a time before the internet or cell phones.  The labor was shockingly painful and I do not consider myself a wimp.  So much so that, at some point I decided that I would rather go home and let him grow up in the womb rather than try to deliver.  Needless to say Branden was born healthy a few hours later and I did not die.  I did however have a tear in my perineum that nearly entered the rectum and required over an hour of suturing.  What I got instead was about 30 min of suturing including two stitches into the rectum.  Despite my protests that I could feel the stitches into my rectum my doctor dismissed me and said that my cervical anesthesia was just wearing off.  When I could not sit in my hospital bed or lift my son from his bassinet, the nurses told me it was because it was my first child.  I could not walk upright, I had to lean on my IV cart bent over at about 45 degrees because my perineum would cramp badly and it felt like my organs were all going to slide out of me onto the floor.  At just over 20 years old there was a lot that I did not know and trusted my doctor and close family to help me figure out.  None of it seemed right, but I listened anyway, they should know, they deal with this all the time and they spent years studying it.  All I had to go on was basic anatomy and physiology knowledge and my instinct.

I do not remember giving permission for anyone to circumcise my son, though I must have, for they took him from me and returned him shortly after. I do not remember much more than that except that they used a plastibell and it seemed to make sense to me that it covered the glans and kept it from sticking to the diaper. (Why it did not occur to me that his foreskin was doing just that, protecting the glans from sticking to the diaper, before hand, I have no idea.) I do not remember it being very red or swollen, though I know now that it probably was. He did not seem to me to have much pain and had no trouble nursing. I thought I had done something that was in his best interest and made sure he was clean and that everything was healing well. I know now that he was probably in a lot of pain and he didn’t need the procedure at all.

After ten months of pain, difficulty having a bowel movement that actually made me afraid to eat, and complete lack of normal function, I decided to try to have corrective surgery on the badly repaired perineum. It was then that I found out that I was pregnant again. My marriage was falling apart and this was very distressing news. I made it through the pregnancy to term and delivered vaginally with the expectation that the doctor would do an episiotomy and excise the scar tissue and give me the repair that I needed to get normal function back. Once again, I did not get what I needed.  Although Samantha was born healthy and the delivery doctor did a good job on the repair, he did not cut me or remove anything, he let me tear in a whole new place.  Where before I had a scar a centimeter wide, now I had a new scar that was paper thin.   This is what a repair should look like, and feel like. I recovered in the normal six weeks and was astonished at the difference.

At three days old, however, Samantha became lethargic. I could not wake her for feeding and we rushed her to the emergency room. They needed to do a spinal tap in order to test her spinal fluid for meningitis. Six nurses stood around the table and curled her into a ball.  Having endured awful experiences myself at that point, I knew that I wanted to stay with her for every second. Nobody was going to give me a story about what went on in that room, I was going to know. I could not get near her, there were too many bodies. (Why I could not have been one of them or did not demand to be, I do not know. Respect for authority? Submission to the plan of those who are trained?) To watch while they held down my three day old baby and poked at her with a needle was the impossible for me. I could not stand to just stand there and watch her crying for her mother and not be able to do anything for her. I wanted to be calm when they were done and I was worried that I might start screaming at them, so I walked out. I left the room and kept walking until I could not hear her anymore. I was 22 years old, I had helped my mother take care of children my whole life and knew that there was nothing that I was going to do with my life more important than having and raising children and I could not stay in the room. I was not there for her. 

This brings me to my first point: We are the parents. We know our children better than anyone. We can make decisions for them based on what the trained persons tell us, combined with our own instincts and knowledge of our child, better than anyone else every day of the week. They work for us, they are not the boss of us or our children. We must be the advocate for the best interest for our children. What is best for them may not be what is best for everyone and what is best for most may not be what is best for our children. (Though I was beginning to understand this, this is not the point in the story where I truly understood it.)

Back to the story.  Samantha was admitted and had to stay for monitoring for a few days.  She was negative for meningitis but had some infection that was resolving on antibiotics.  I stayed the first night, but the condition of the sleeping arrangements for parents of a child in the NICU were terrible.  I could hardly move the next day.  I pumped instead for the next night and left her in the hospital.  She came home and recovered fully.  Three months later and several experimental treatments later, I was told that surgery was the last resort for my recovery and that it was time.  I agreed to a reconstructive surgery that would excise the scar tissue and hopefully alleviate the pain both vaginally and rectally.  (Yes I still had trouble two years later having a normal bowel movement.)

The prep for my surgery was very painful but I scrubbed as instructed and went in for the procedure.  Upon waking up from surgery, I said aloud that I was in pain and was told, “whining about it won’t help anything”.  I had removed my contacts and was groggy from the anesthesia, so I could not see anything but some vague shapes and colors and have no idea who spoke to me that way.  I immediately passed back out. While in recovery I was informed that there were “scratches” on the external anatomy and so….it was removed. (Say what? You cut off the labia!!? Because of “scratches”?!! Did you see that scrub brush you moron? I was told to scrub and I did!)  Ugh.  I asked my husband at the time if they came out and asked if they could remove it.  He said no.  The doctor said he was concerned that the scratches created a risk of infection but not to worry, they would grow back….  I thought “I’m not a starfish.”

I was allergic to the cream that had hormones in it to help grow back the labia, which I had never heard of. So I had lost ¾ on one side and ¼ on the other.  To reconstruct the perineum he had pulled tissue, nevermind, suffice it to say I felt disfigured.  At least it was in my pants and not my face.  And I was in more pain than before, deeper inside! At the follow up the doctor said “Well there is one other option…..”  (What! I thought surgery was the last resort!!)  I nearly jumped over the desk and choked him out.  Sigh.  I wanted to be a doctor, I understood that they were people.  They are human and make mistakes….I moved past it.  I went to biofeedback and found relief from the pain…the only thing that worked was connecting myself more fully with my own body, what a shocker.

My marriage ended and I was remarried years later.  I got pregnant on the wedding night.  It had been a long several years and my new husband had a prescription drug habit that I thought we were done with by the time we got married.  That was not so.  Three months into the pregnancy it was clear that the marriage was not going to come between him and the drugs. Things got very ugly and my doctor was concerned that my husband had the potential to kill me. (More women are killed by a man than by any other source and the rate is highest during pregnancy.)  I made it to term and Dylan was born through c-section one week early.  I was under a lot of stress and, still thinking it was needed and best for him, I had Dylan circumcised at his one week appointment. I stayed in the room and tried to help him. I wanted to be there for him. I wanted to make sure everything went the way it was supposed to and that he wasn’t scared.  He screamed the whole time.  He was inconsolable and Dad had to leave the room.  The doctor said it was just because he was strapped down, that he was fine.  Since he had started screaming the minute they put the straps on and never let up at all, I thought the doctor was right.  I pulled up my big girl panties and stayed there trying to soothe him.  He needed this to reduce his risk of penile cancer.  I did not want my son to die from that, I numbed myself so that he would be calmed by my calmness….WTF!!  This is something I had learned to do with Dylan, when baby is crying you have to remain calm, they can feel your tension etc. and they will not calm down if you are upset.  I had no idea that he was actually in terrible pain and there was no way I was going to help him unless I had stopped them.  I know about genital pain, I had lived with it, experienced it and am terribly afraid of it.  How did I not know!!? I was not his advocate, I did nothing to help him.  I was there and I did nothing.  (I need to stop for a moment)

Dylan is 7 years old now and he says he can remember that day.  They say the pain they endure during this procedure changes who they are.  I have no doubt that this is true.  He is different from the other two in a way that I do not think is explained by genetics or just difference in personality.  He was traumatized and it altered him.  He was never fearful of me changing him and did not have any further complications and I still did not know the truth, this is not where I learned the truth about circumcision.

Divorced again and having had my tubes tied, I met my husband.  He did not have any children and wanted one of his own and we agreed to have a reversal and get pregnant.  One try and we had it.  I was pregnant with what I was sure was a girl.  At the 20 week ultrasound they said I was having a boy and I was at a loss.  I actually went through a grieving process for the child I thought I knew.  It was a very confusing emotional time.  Although I was finally in a stable loving relationship, I was emotionally a wreck from the news that the connection that I thought I had was with a baby that did not exist.  I had started a home daycare and was working very long hours with children that were nearly impossible to handle and I think that compounded the situation.  In addition to this stress, I was having a flare up of problems from the delivery repair of Branden.  I knew that I would not be able to deal with the intense pain with every bowel movement that I was having and be pregnant.  I had to see a proctologist and he recommended a fisurectomy surgery.  Since I was pregnant I could not be sedated and there was a small chance that the baby would not survive.  Because of all of the exams I had to have in the past and the pain they cause, I am very fearful of exams and of surgery.  I shiver when I am nervous or upset.  Despite being kept warm, being treated with respect, and cared for with compassion, I shivered violently during the whole procedure.  So much so that I could barely speak.  I was awake while they cut on my rectum.

Me and Baby made it through ok and as a result of the procedure, I finally had normal function of my bowel….14 years later.  Tanner was born one week early by scheduled c-section.  If my husband and I talked about it at all, the conversation about circumcision was a short one and I thought that there was medical reason and that we would have it done.  Some part of me was questioning this idea and I wanted to be sure that the information that I thought I knew was really right so I asked the pediatrician at one of the first visits with little Tanner.  She squirmed in her chair and did not give me straight answers.  She said she had just come back from a conference for doctors that addressed circumcision and that there is conflicting information about the statistics for the benefits it will bring.  She did say that she does not do them, nor did any doctor in the office.  (This was a big red flag to me that I ignored.  If I am honest I ignored it because some part of me did not want to know why.)  She referred me to the only doctor in our plan that performed the procedure and I set up the appointment.  My husband and I took Tanner to the doctor for the surgery a few days later.   I don’t remember questioning if I was allowed in the room or not, I knew they would not be doing it if they did not allow me to be there. 

They strapped him down and I began to feel nervous for him. The doctor administered the numbing medicine and I asked him if he was sure baby would be numb and not feel anything.  He said yes.  Almost without hesitation he seemed ready to begin.  I remember thinking, “Wait, doesn’t the dentist wait 15 min to be sure you are numb?  Why aren’t we waiting?”  He took what looked like scissors and placed the tip into the tip of the foreskin.  They were not scissors though, the tip was serrated like needle nose pliers.  As he squeezed down it clamped into place locking in position.  My mind SCREAMED at me.  “STOP!! You can’t do this!” and I stood up.  I looked at the situation and thought, I had to let them do this.  Surgery is ugly and bloody and scary to those who are not familiar.  You are familiar with this process and medicine, this only LOOKS bad.  Stay calm and focus on keeping him calm.  So I bent back down and offered him the pacifier.   He took it and looked at me, trusting me but unsure.  The doctor started using a tool and forced it between the foreskin and the glans so that he could put the tool in.  My son stayed quiet and I was sure that he was numb.  The doctor inserted the tool and put another part on and was then able to cut without risk of cutting anything but foreskin.  My husband was horrified but made some joke like “If you could see what I see you wouldn’t be so quiet.”  (Wholly &%@#, I can not make sense of this.  I have to pause, and collect myself.)

Ok, Sorry, I still can't seem to type.

So at some point I was sure I wanted them to stop, but felt that it was too late.  Had I said stop at the beginning when my mind was screaming it, they could have.  He would have been bruised, but otherwise fine.  I did not though.  I was convinced I needed to be strong for him blah blah blah.  I nursed him right after and he went to sleep in the car on the way home.  The doctor said it would take four days at least for the bandage to come off and that I should not pull at it.  After only two it was flopping around and I pulled it off gently.  I was concerned that if I could not see, I could not tell if it was getting infected.  He was very red but did not look infected.  I kept close watch on it each diaper change and at one point saw clear signs of infection.  The paperwork said only to use Vaseline but this did not make sense to me since it has no antibiotic property so after his bath I put Neosporin on it and by the next day he was looking better.  He had some adhesion and some build up in the pocket it created but a warm bath allowed me to pull it back and put Neosporin on and he seemed ok.  I remember thinking, “It looks like the foreskin that is left is desperately trying to go back where it was.”  I still did not realize the truth about circumcision.

About a year later my sister posted something on Facebook, I thought it was strange but not much else.  The second time she posted something about circumcision I messaged her.  I did not understand and was defensive.  “Why are you so upset about circumcision?  What do you really know anyway, you only have girls?!”  She calmly talked to me about it and everything I said she said something else that debunked that thinking.  A friend of hers debunked a few other things that I had posted as a comment to one of her posts.  I quickly, and easily, realized that I had used flawed thinking to justify a procedure that was not necessary.  I immediately knew that I had to tell my children.  I was distressed and upset.  I had made a terrible mistake and I could not fix it and nobody understood.  My 16 year old son said he is fine and doesn’t understand why I was upset.  My seven year old says he remembers and it seems to him to make perfect sense that I was upset that I did wrong and broke the rule.  “Your body is yours and your privates are called that for a reason.  You are the boss of them and always get to say no to touch, even to a doctor or Mom.”  How would he have been able to do that at one week old?  

In medicine it is assumed that, for someone who cannot consent, they would consent to a procedure if they were able only when: the procedure is need to save life or limb.  In all other cases it is to be assumed that they would not consent, or at least that we cannot know their desire and therefore cannot authorize a procedure for them.  Why then do we allow it for circumcision?  It is not necessary at that moment and does not save life and actually damages limb.  

I talked to each of the kids and apologized to the boys.  The two older ones seem ok and forgiving but it is something that I continue to talk about and address with them.  My husband did not think it was wrong and did not understand why I was upset.  After watching The Elephant in the Hospital my husband was also convinced that we had made a mistake.   Having his support helped me feel validated in my upset feelings.  I was able to move forward, though in writing this I see that I have not forgiven myself.  My oldest understands, I even talked with him with his girlfriend present so they would both hear about the procedure.  (Her mom is a nurse.)  I took out my anatomy text book and showed them pictures and answered all the questions they had.  I think however, that he thinks it really isn’t that big a deal.  My daughter is sure that no son of hers will be circumcised. (Her boyfriend recently had a two hour discussion with her about how the Bible says you MUST circumcise your boys.)  The younger two will continue to hear from me about the subject and will not grow up thinking that it is “just something you do”.  

None of the family understands why I keep talking about the subject or why I might have negative emotions about it.  I hope that in hearing this part of my story, and obviously there is a lot more to me than just these few pages, that we consider that we each have our own journey.  We are all in a different place on that road and should not judge each other for where others are on their trip.  Our lives are complex and a lot of factors play in to each decision we make at any given moment.  We can only do our best in that moment and when we know better we will do better.  We must keep learning and growing.


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