Thursday, February 25, 2016

No Reason


There is no reason

There is no why

All I want is to curl up in a ball and cry

There is light

There is hope

Yet I keep sliding, spiraling down

I choke it back, swallow it hard

The voice in my head screaming “NO! No! No!”

The light hurts my eyes

My smile lies

The voice keeps screaming

Today I will rise, will put on that smile, will look out of dry eyes

All the time knowing

Feeling the numbness growing

From deep down inside

Without any reason, no discernable why

Tonight when I lay my head down

In the darkness, the quiet, alone with the silence

I will curl up in a ball and smother the cry

Tuesday, February 23, 2016


                                                          Time for Healing



As I drove down the road on this cold, rainy February day it suddenly occurred to me what had happened. I realized what month this was, and that the anniversary had come and gone over a week ago without my even noticing this time. It was the first time in exactly twenty years that the week of February 13th had passed without me shuttered away in a depressive heap in my room remembering the anniversary of losing my third child. Time had passed without tears or incident and thinking on it at that moment in my car, I was not upset or saddened by the realization. I was okay. Not thrilled mind you, but I would be okay.

The winter of 1996 started out rough to say the least. My husband at the time was laid off of work. We had a house, and two small children, the youngest was just sixteen months old and I was expecting our third child. The fact that we were having a third was a bone of contention between us as well and had caused some arguments between us in the beginning. But we would deal and I knew somehow it would all work out eventually. So the holidays had passed and as I had made it through my first trimester well, we had told the rest of our family about the baby at the Christmas Holidays. I was sure I was having another girl and my husband and I settled upon a name for her; Saffron, Saffie for short. Just after the New Year I went in for my monthly check up and was excited to hear the baby’s heartbeat for the first time at this appointment. Everything went fine during the exam until it came time for listening to the heartbeat. The doctor was having difficulty finding one. Not to worry, this sometimes happens depending on the baby’s position I was told, so let’s do an ultrasound and see where the little one was hiding. Out comes the ultrasound machine, disgustingly cold jelly yuck on my belly. No good. We’ll have to do an internal ultrasound. Yes, if you have never had one done, that is exactly what it sounds like and not comfortable in the least.

Have you ever walked into a room and it suddenly goes quiet. Quiet, silent, not a sound from either the doctor or the nurse as they stared at that ultrasound screen. Even the simplest person in the world knows silence is not a good sign. After what felt like an eternity but was most likely a few minutes I finally asked, “What’s wrong?’ Well, I’m not exactly sure, could be nothing was the response I got. There is a heartbeat. I sighed in relief. “Ok, then what?” There is something else that I am not sure about and we’ll have to send you for a more in-depth test to find out. It looks like an Oomphalocile. I knew what that meant, but for those who don’t, it is basically an area on the fetus that has not formed skin to cover the vital organs, nerves, blood vessels etc. and almost appears as if it is a bubble of fluid and internal parts bulging from the body. It is most common with the condition Spina Bifida where it appears over the spinal column. It is not something you want to hear in your 20th week of pregnancy.

I went home and told my husband what had happened and that I needed to go for more tests. My son overheard us talking and said something about the baby dying and I completely lost my shit at that point. The next few weeks are a blur as I made my appointment for a level four ultrasound and waited for the date of the appointment to come. Time was ticking. My baby was still moving.

The day of the test finally arrived and my husband and I went together. Of course no one said anything to either of us during the actual test. Afterwards we waited to speak to the genetic and fetal specialist doctor who was reading our results. The news was not good obviously. We were told that the baby did not have an Oomphalocile. It also did not have a lower half of its body at all. Apparently, the umbilical cord had not attached correctly and my child was developed only up to the point of the cord. The heart was beating, buds for arms, head all there. Lower extremities and abdominal organs were not forming. I asked about fetal surgery. No, not in this case, there simply wasn’t anything medically they could do to correct the situation. I was given my choices, as if there really was any choice. Firstly, the doctors were amazed that I had not miscarried before this time as so much was wrong, but, since that had not happened I could either wait and would most likely miscarry in the next few weeks. Or, if that did not happen, and I chose to wait the baby would most likely die in utero and I would have to deliver a stillborn birth which also put me at risk of dying from infection or complications. If the baby by some miracle survived to term and was delivered (which could also put my life in danger) it would most likely die an excruciating death moments after birth. My last choice was to terminate the pregnancy. Since I was already at 22 weeks by then, it made it a late term abortion. Like I said, no choice at all. The children I had already given birth to needed me here, alive and healthy. I made the appointment with the doctor right then and went home to cry.

The day of the procedure my mother came with us to the hospital.  She is my Mom, my supporter no matter what, my friend, my strength when I can’t find it in myself. I needed my Mom. Also though, she understood. My mother had given birth to a baby girl before my birth, a girl born stillborn who was only partially formed she was told afterward. My mother never got to see that baby. At that time, they didn’t do that, she was told to go home, forget it and try to have another child. So my Mom was there for me, she knew. I think she was more of a wreck on the inside then I was that day. I was prepped, stuck by some young nurse in the wrong damn place in my wrist for a line, she actually struck bone. Did I mention this was a teaching hospital? Then taken to the O.R. where for the next 20 minutes some young apprentice anesthesiologist poked my spine with a needle trying to find the right spot to insert the spinal block I needed for this procedure. I took as much as I could until I cracked. I jumped off the table crying and shaking and shouted I was done, I changed my mind, I’m not doing this, get me out of here and get this idiot away from me! The female head of anesthesiology came in, calmed me down and inserted the spinal block herself, simply, easily, I never felt a thing. The rest is fuzzy until the recovery room. I stayed there until I could feel my legs again and a few hours later I was released and sent home. A bit of advice here, one should never be sent home the same day you get a spinal! You are supposed to rest for 24 hours after something like that. I was told I might have a headache. UNDERSTATEMENT of the century!

I went home. I cried. I slept. I could not lift my head physically from the pillow literally for the next 3 days. Have you ever tried to explain to a sixteen month old why Mommy can’t pick her up, why Mommy can’t move? Not fun. I spent the next month recuperating physically. I experienced for the first time in my life a real migraine headache. I called my doctor who said it was normal to have headaches. Really, a migraine that lasts for days when I’ve never had one ever before? Please forgive me anyone reading this who is a doctor, but doctors can be real assholes! I am not some number on a chart, or some hysterical over exaggerator of symptoms. I can take pain but this was something else and they should have listened and warned me properly ahead of time. Anyway, I was able to go back to work and my life in a way in a few weeks after. A few weeks after that I received a letter in the mail with the laboratory results of the genetic testing that had been done on my baby. It was a girl, with no discernable chromosomal abnormalities. No known cause of malformation. The official diagnosis was Limb, Body, Stalk Anomaly and occurred in 1 out of 250,000 pregnancies. Basically, they couldn’t find any medical reason known for what had happened.

  The migraines persisted for the next three years regularly. Then tapered off to about six a year for the next few years, then down to fewer after that. I still get them now. What I didn’t expect at all was the emotional recovery being so difficult. I cried every day for the next two years. This event was also one more nail in the coffin of my marriage and the biggest wedge between us until our last trigger and the end a year and a half later. I cried all the time, silently, privately, and my only sanity was the support of my mother and a few close friends who let me talk about it with them as much as I needed. That was a gift. Letting me talk allowed me to grieve, to deal as best I could. When I couldn’t talk to anyone, I would shut down emotionally and just go through the daily motions just to get by and function. I did this for years. At some point it became just around the anniversary that I would fall apart, privately and get melancholy. Thinking about my baby hurt every time.

The last few years I have spent working on myself, healing my wounds, accepting myself, pushing myself to create the life I want for me. Doing this work has been very transformational and I noticed last year at the anniversary I wasn’t as sad. I acknowledged the day, and lit my candle for my girl, and went about my business. This year, was different. I didn’t acknowledge it consciously at all. It came and went and my day and week since were happy and uneventful. As I realized this in the car driving in the rain, I felt peace. I thought about my girl, I imagined her now, as an almost 20 year old woman. What she would have looked like, probably very much like her big sister. I smiled to myself. Though she never took a breath in this world, Saffie made a profound difference in my life. Her short life changed me, changed my life, and was a huge catalyst for many changes to come from conception to death. She changed things for my other children as well. Because of her, the knowledge of a potential genetic issue in our family is known where before it might have been overlooked as a fluke thing that would never happen again. One anomaly pregnancy in a family line is chance, two raises questions, and three; as I later found out of another family member who had a similar occurrence with their pregnancy and birth, well that’s just something that needs to be known and checked into for future generations. So now the conversation with my now grown older daughter will include the topic of getting genetic testing when she is ready to have kids of her own and my son should as well. If anything maybe my experience will provide my daughter with enough information so she won’t have to go through anything like it herself.



So, today I was driving through the rain, noticing the grey, cloudy sky and thinking about the twenty year anniversary of the death of my youngest daughter, and I didn’t cry. The healing continues.