I apologize for not responding to any of the comments on my last entry. I've been formulating my next entry as sort of a reply and update. I have been pondering one thing in particular. It's a common phrase meant to bring comfort but is not actually accurate. I didn't want to sound bitchy or judgy when I talked about it so I'll give a bit of backstory and hope my words come out the way I want them to. This is meant to bring a different perspective. Not to shame or judge another person's.
So, aside from all the crazy traumatic stuff that most women have had to deal with and process, and even stuff anyone would deal with, I'd like to share a few memories that have shaped who I am. These are things I don't normally share because when I do, it's kind of like ripping off a scab from a wound that never actually heals... but I know the ones who read this DO care, so I will share.
I've been thinking a lot about death and my relationship with death lately. That probably sounds very weird but I have a connection with death that many have never faced. This is not to say that I have suffered more than most in the world, but from the people I have known or met, most would not be able to relate to these things.
One of the earliest memories I have, after my babies were born way too early, was me being awakened in the middle of the night. My son, Logan, was not doing well. They wanted to take me to him right away to make decisions about his care and also to be present, should he die. I had lost a lot of blood and was sick with E Coli, at the time. I had a fresh C-Section incision from half a day before and was in pain and weak. Two nurses helped me into a wheelchair. In spite of being white as a sheet and in a cold sweat, I still remember the events that followed. They had to keep wiping cold wet cloths on my face to keep me from passing out. I watched as nurses and doctors surrounded my son's isolette and watched helplessly as one domino after another fell. He had a pneumothorax, then more of them... He had a brain bleed, seizures... Everything was crashing. I had to make that decision to remove life support. Death was imminent. They must have known he wouldn't make it because right after I had my babies, they wheeled me through the NICU on a gurney and they allowed me to touch his foot. That would be the only time I ever touched him while he was alive. He lived 14 hours. They brought his lifeless body to me in a tiny blue onesie and knitted blanket. There was a woman who made these tiny clothes just for preemies who died while in the hospital. He was 1.5 pounds and perfect. I got a box full of platitudes and the standard issue hospital pictures that are issued upon discharge, whether alive or dead. I still have that onesie. It has a blood stain on it. That stain of blood is all I have left of my son.
After that I focused on my other two. Caitlyn had a host of problems but she got through almost all of them. Would you believe it was antibiotics that killed her? They shut down her kidneys and she was too tiny to perform dialysis on. Over the course of 3 weeks, I watched her tiny 1 pound body double in size with fluid. At first we thought she was urinating a little bit, giving us false hope, but after a while realized it was the IV fluid they were giving her. It was also yellow and it was leaking from every hole in her body. Her eyes were fused when she was first born but after a week or two, they opened and she had the most gorgeous blue eyes. I would touch her at first and she would recoil, but after a while, I could tell she was exploring my hands and fingers with her feet, curiously. That didn't last long. She required large doses of pain medication to deal with her chest tubes and edema. I remember having the wife of a well-meaning friend come to visit. She saw my daughter and her condition and burst into tears, sobbing uncontrollably. It was shocking to see it the first time. I was more used to it. She had to excuse herself and leave because it was too much for her. The last week of my daughter's life, they were having a hard time keeping her chest tubes in because the edema was so bad. It was like trying to sew through gelatin. The stitches would just pull right through her skin. Her skin turned brown, due to all the capillaries bursting from being overloaded with fluid. Her entire body was a bruise. This time, I got to hold my baby alive. I wanted her to feel love and warmth for her last moments, not machines and tools. The nurse removed everything except the ventilator tube. I removed my shirt and sat down. The doctor removed her ventilator tube and quickly brought her to me. I held her to my chest and talked calmly and lovingly to her. I felt something wet on my chest which I later determined to be more TPN, the yellow IV fluid. She vomited some on my chest. I listened to her take about 4 breaths on her own. and then no more. This time I got a tiny purple dress and blanket and they took pictures of me holding her with her dad next to us. We were trying our best not to be sobbing in the picture but it's pretty obvious in the picture we were shattered inside. I got another "dead baby box" full of platitudes.
With no time to actually grieve, I still had one live baby to take care of... Garrett. The hospital memories that stand out were things like me walking in and seeing my son having full on seizures while being surrounded by doctors. They had to suck the fluid off his brain with a syringe every day for a while. Eventually, the bleed stopped and we thought all was well but it would be nearly a year of unexplained fevers before we discovered the extent of his brain damage. He went blind from the ventilator. He could not tolerate being held, he could not ever nurse and it took a while to figure out that he was aspirating whenever we tried to feed him by mouth so we had to tube feed him. He was also on oxygen and the tubing would come out easily so we took shifts watching him. I slept on the floor with him at night. One night, while his dad was working late, he had an incision break open. This was from a surgery he had on his stomach to keep him from vomiting. There was no one in Kansas who would or could do the surgery so we had to drive him to Oklahoma. This made things rather difficult when things went wrong later. So an incision that was very easily exposed to hydrochloric acid, was glued shut, rather than sewn. It popped open and hydrochloric acid was oozing out of the hole in his belly. I remember the streams of acid going down his skin and instantly dissolving his skin, blood welling up. He was screaming in pain but the area I give him pain meds was no longer available to me. I was helpless and freaking out. My baby was suffering and I could do nothing.
Later in his life, once we discovered the extent of his brain damage, we decided that we were done taking him to the hospital and done forcing him to get cut on and poked at. We put him on hospice care, got his suffering under control (he finally slept!), and waited for the thing that would end up killing him. Right after he turned a year old, he got a cold. He had never learned to breathe through his mouth and his nose was stuffed up so he literally couldn't breathe. That was the moment we could have rushed him to the hospital or we could let him die. His oxygen sats were all over the place, even though he was on oxgeyn, full blast. So here's the tricky part of this moment. We had already discussed this with his pediatrician but since it's such a high liability subject, there must be a lot of paperwork signed and approved. We had about half of it done but his pediatrician was on vacation when this happened and we did not have the final paperwork. Oxygen was considered "comfort care" so it was actually illegal for us to turn it off. After maybe 3 or 4 hours of watching my son trying to gasp for air and cry and scream for his life, I decided fuck this shit and fuck your fucking liability. I called the hospice team and made them come over and watch him suffer. I made them see what it looks like to have a helpless infant fighting for breath for hours while they worry about their goddamned paperwork. LOOK AT HIM! HIs dad and I made an agreement that we would turn off the oxygen together and if either of us were imprisoned for murder, we would visit and take care of things. It took maybe 45 more minutes after that but only 5 minutes of actual struggling. After that his breaths were tiny and shallow. He had no fight left in him and hung limp in my arms. I took all his tubing and cords off and took him outside, cordless for the first time in his life. I let him feel the sun on his face. His dad rubbed grass on his feet. I COULD ACTUALLY HOLD MY SON. I remember after 45 minutes of his shallow breathing, I just hugged him tight. I hugged him tight so he could not take another breath again. I decided for the third time it was time for my child to die.
For six months before my son died, I was on the brink of insanity. I researched suicide methods during those months. I actually found a website that was a discussion board filled with people who were exchanging ideas on the most effective methods of suicide. Several threads were from people who had attempted and failed and the rest would rally to help them come up with the the reasons it failed and how to be more successful in the future. A big favorite was helium tanks. They would breathe in pure helium through a mask but there was a problem with people unconsciously ripping off the mask at the last second and coming to. I made my plans, should certain conditions arise, but was only still alive, at that time, out of obligation and duty to my son and then husband.
Within 2 weeks of my son's death, I registered for college and was headed for the nursing program. My marriage was getting bad and I wanted to be able to financially support myself in the shortest amount of schooling. In that time, my then husband turned his grief and rage on me and our divorce was on Valentine's Day, at his request. I ended up dating my son's hospice nurse, who was the best man I ever dated. He later told me he was pretty sure I would end up dead by my own hand but he said he was happy to get any amount of time with me, be it a day, a year or the rest of our lives. He actually helped me get through a lot. I lost my sense of purpose then, which was to be a mom. That was my focus for so many years and it was gone. During my research of suicide methods I also read up on Near Death Experiences. I'm not a religious person but I allow for the possibility of anything really. I just find the stuff that feels right to me and keep it. I talked to psychics, read some books and decided that just in case my babies were on the other side and just in case they could see me, I wanted them to see that their presence in my life made me better. I wanted to succeed because they existed. I also wanted any chance to see them again and not killing myself was also another just in case thing. I had to really search for things to be grateful for, like the birds singing in the trees and even having trees. Maybe someday they won't be around anymore. I mean, that's starting from rock bottom. Just grasping for anything and everything to keep on waking up the next day. I have since formed the belief that all beliefs are formed to help people get out of bed the next day.
Time passed and I somehow made it through nursing school. Right after starting as a new nurse I came out of the closet and suddenly I had no job opportunities. I had lots before that and suddenly... nothing. I impulsively got involved with someone online in a relationship and moved to Puerto Rico. It ended up being a very manipulative and abusive relationship. When I went there I was on anti-depressants and in order to keep getting the meds, I had to meet with a psychiatrist, who decided my dose was too high and cut it in half. That on top of being in a terrible relationship, being broke and isolated from friends and family and being stuck somewhere where I didn't speak the language, sent me into a spiral that would take me years to recover from. I was there 7 months and probably 4 of those months I spent sobbing every day. I became self abusive, internalizing my rage and loss of control. I did try to reach out to "friends" for help when I was feeling really low. I was basically called a drama queen and to quit whining. The Xanax I was given to help with my anxiety didn't work so I just saved it. I saved up until I had maybe 30 of them and filled a pint glass with tequilla. I waited until my girlfriend went to work and and took all the pills and drank all the tequilla. I remember taking a shower and then waking up in the bed the next day to a very angry girlfriend. My armpits hurt. I found out she had been dragging me around the house all night trying to keep me awake and alive. Apparently her mother was downstairs calling up to me and when I didn't answer she came up and saw me naked and unconsioius on the bed through the window. She called her daughter who came home early.
So there was my second very close brush with death.
Ever since my experience with my babies, I have stood at the edge of a very deep pit. One wrong step and I'm going down the hole but it takes very much effort to get back out. I am a control freak for this very reason. My life with Shaun has been, for the most part, very good. I would say it's been the only consistently good thing in my entire life, where I felt like my life was at the same or a similar level to most people who I view having pretty normal lives. While I realize this is not at all healthy or good to say, the truth is, I am alive because of my relationship with Shaun and because of my cats. Before that, I felt like I was in a prison and marking a line on the prison wall just waiting to die. I got cancer treatments because Shaun asked me to and because I wanted more time with Shaun. There is but a tiny web connecting me to his mortal coil. Very few people in my life actually know this about me or what exactly led me to be the way that I am.
When Shaun shared the hormone stuff with me, I lost my fucking mind. Perhaps it's more clear now, why. Shaun saw a side of me I don't think he realized existed. I have realized that perhaps it was a mistake to warn him of these parts of me because it's possible he took it as a form of manipulation to control him. I keep all the most vulnerable parts of me locked away in little boxes, so I appear strong. Many believe me to be strong for surviving the things I have but I'm telling you, I'm a paper sky lantern floating up into the sky, just waiting for that tiny shift in the breeze that will send me up into flames. My spirit is incredibly fragile and I have to work very hard to build an environment and a "reality" around myself that will be enough to give me a life that I can deal with.
Some things we go through don't actually make us stronger. Some things, we just survive but are left forever broken and limping our way through life. Some things you don't heal from. You just figure out a way to live with the wounds.
The latest with my marriage is that things are actually more stable, at the moment. A few days after this chaos rained down, Shaun started his period (that's still weird to say) and was suddenly okay again. GRRRRRR!!!! An appointment has been made with the OBGyn to discuss Shaun having a hysterectomy. I actually had more details to share about this but I find myself to be seriously exhausted after all I've already written so I'm going to wait to share more on that.
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