That was the day our journey with Eli began; or at least that is the day we remember it beginning. It began long ago. That is the day we left our ignorant place: a place where we knew nothing of trisomy 18, nothing of death, nothing of cemeteries or funerals. We stepped out of what we knew into a great unknown and incredibly scary journey that we would not have asked for or even known existed. There is a before Eli and after Eli in my mind and it began on this day.
It seemed like an ordinary day, at first. I had some trepidation about going to the ultrasound. I felt like I had seen A LOT of children with Down Syndrome for the few weeks leading up to the ultrasound. I started to wonder if there were actually more crossing my path, or if I were just noticing them more now. I didn't want to think it meant anything, but I wasn't sure. Sure enough, the night before our ultrasound, we went to Classic Skating and there was a sweet little boy with Down Syndrome. I know that I am overgeneralizing this chromosomal problem and possibly being insensitive towards this, but I am just trying to say how I felt at the moment. Strangely, I had someone talk extensively to me (when I was 14 weeks pregnant) about how having a child with Down's Syndrome wouldn't be nearly as bad as many other things. I agreed with her, but it still rubbed me wrong because it was so on my mind. I worried about it, but thought I was being paranoid. It was probably this particular chromosomal anomaly I noticed, (Down Syndrome) because I wasn't familiar with many others, and you don't exactly see people with trisomy 18 walking around. As we sat at Classic Skating I watched the little boy's mom. I just kept wondering if I could do that?
I woke up the next day and our appointment was fairly early in the day. I had a wave of despair sweep over me momentarily. I recognized that I hadn't felt that way since some of the postpartum days with Lincoln. It was a familiar feeling, but it had been awhile. I kept thinking that I just needed to go and get this appointment over with so I could feel better and stop worrying needlessly. I was sure that in just a few hours I would feel better. I remembered to grab the box that kids had been decorating and gave them hugs and promises that it would be filled with pink or blue goodies when I returned.
Me and Jason sat in the waiting room and waited for quite some time. We were a little annoyed because Jason had left work and was trying to make it back by a certain time for a phone call. We were finally led back to the room. I always go to perinatology because of my diabetes, but they had changed locations and the new offices were unfamiliar. I sat on the little bed and the tech started. I wasn't nervous at this point. After just a minute, I could tell it was a boy. Jason knew the same before they confirmed it to us. Something felt very wrong, but I didn't think there was anything wrong with the baby (which I realize makes no sense). I started nervously talking to Jason about how much responsibility he had with three boys and I was almost off the hook because Katelyn was already 9. I talked about how mad Katelyn was going to be (again!) I honestly didn't notice how long it was taking the tech. Jason noticed. She left the room. I believe she said there were some concerns and the doctor would be back. I remember when the doctor came in and started doing the ultrasound. The baby looked totally normal to me. There was a head, a spine, a torso, arms, legs, hands, feet, a beautiful profile. There was a beating, four chambered heart. It certainly couldn't be anything major. Then she started into her list of "concerns:" Short femur bone, cysts in the brain, clenched fists, and a minor heart defect. There were only four things, but as she went on and on it seemed like the list was endless. As she talked about each item on the list, my heart sank deeper and deeper. I wanted her to stop talking. Then she started saying how the stomach and kidneys and some other things looked "good." I couldn't understand what she was saying. So, his heart and his brain have some problems, but don't worry, his stomach looks good? I was in complete shock. This couldn't really be happening. We had wanted this baby. We were ready to welcome him into our family. Everything had gone as expected with the pregnancy. I am always paranoid that something will happen, but it never does. I couldn't believe it was really happening.
She started talking about genetic counselors and three different options for tests. I didn't process hardly anything she said. She asked us if we would ever consider termination. It was so fast. We went from being ticked off that we were thirty minutes late being seen, to the prospect of never seeing our son grow up. We told her we wouldn't consider termination. I guess somewhere inside us, we always knew the answer to that question, but hadn't really discussed it. It's not something we thought we would ever have to answer. Nobody thinks they will have to answer that question. That is the kind of thing you see on tv or read on the internet (ha!). They asked which of the three tests we wanted. I was honestly trying to remember what even one of the tests was. Everything was a blur.
They left me and Jason alone for a few minutes so we could "talk about it." Talk about what? What could we say? I was happy when they left because I could let the tears flow. We tried to be logical about what we were doing, but the logically part of my brain was gone. Logically, I should be buying pink or blue balloons; not deciding which battery of tests to do to see if my baby boy REALLY was going to die. I think Jason's brain guided us through those moments.
When the doctor returned, we asked more questions about the "concerns." She was so kind and patient and we really couldn't have asked for a better doctor at that point. I needed to know if there was a possibility that NOTHING was wrong and that all of these things would be okay. I felt stupid asking that; like they would think that nothing they said to me had registered in my brain. I just wanted all of it to go away and wondered if that was possible at this point. She said it was. I wanted to hold onto that.
They talked about trisomy 18, trisomy 13, trisomy 21 (Down's Syndrome), and a few other things. I guess chromosomes are quite complex. I never worried about it because all of mine were in the right configuration. When they talked about trisomy 18 I seemed to understand what she was saying. She basically said that all babies die within a month. What? Such a strange thing to consider. A baby is the epitome of life. How could a baby die like that? He was so active during the ultrasound. How could that be possible? Somehow I think I knew that was Eli's fate although I didn't want to admit it. It felt comfortable to me in a strange way. I'm not saying I was comfortable with it, but it made sense somewhere in my brain. Nothing else she said made sense.
We decided on the test we thought would be best. It had no risk to our baby and was very accurate. They couldn't do it that day because of the 4th of July weekend so we had to wait until the following Monday to get the tests done.
The doctor left and we were left there; in that room that is supposed to be filled with reassurance and hope; anticipation and excitement. It was now a room that was foreign to us. I remember the clock ticking loudly on the wall. It felt like a bomb. The room no longer felt homey and warm; rather vacant and sterile. There was a picture on the the wall to the left of me, with three beautiful newborn babies posed in some cutesy way. It all seemed so strange. Everything stopped. Nothing mattered anymore. All the emotion and anticipation that went into this pregnancy seemed to be crushed instantly. It was just over. I didn't know what we were supposed to do from there. I went into the bathroom that was attached to the room (because pregnancy women do that from time to time). I made sure the door was locked and sobbed. I felt like my future had been snatched away from me. I wondered if other mothers' had done the same thing in that same bathroom. I wondered why they had pictures of healthy, thriving babies all over the walls when not everyone who left there had a picture like that to look forward to. I found it cruel and bitter, which was all very new to me.
I tried to wipe my face so I wouldn't look like I had been doing the very thing I had been doing, and me and Jason walked out of that room and up to the front desk to make a followup appointment. I hoped no one would see me. I didn't want them to know the truth. I didn't want them to see "that poor girl." "I wonder what's wrong with her baby," they would say. "How sad." It would seem unfortunate, but life would go on for them. It was my whole world. I tried to hold it together and did a pretty good job. I was sure the receptionist knew about my baby for some reason. I didn't want to look at her. I don't know why. That started a long stint of not being able to look at people.
We walked to my car and agreed that Jason would return to work to get some things and come right home. He held me for some time in the parking lot. When I climbed out of the car, I was a vibrant, happy, expecting mother happily anticipating a gender announcement. When I climbed back in I was broken. As Jason walked away towards his car, I didn't worry that he would get in a car accident when he drove away. Our world had already come crashing down, so we were safe for now. It was a strange and unfamiliar thought process. He didn't make it back for the phone call. It didn't matter. Nothing did. I remembered the box the kids had made in my back seat.
I drove to Springville Wal-Mart (aka know as hell), to buy the promised items. I always seemed to go there on the most awful days and that place isn't bleeding with happiness or warmth. It is my personal goal to never go back. I wasn't sure if I needed to buy anything after our news. It was an odd feeling. It felt like we weren't having baby anymore. But we were. He was still my son and still my children's brother. I had to work this out in my mind as I wandered aimlessly in the store. I cried openly and didn't feel out of place doing that in Wal-Mart. There are a lot of strange sights there. I wasn't sure where to go to find blue items. The party aisle, with all of it's baby shower paraphernalia, didn't seem doable,but I couldn't think of anywhere else to go. I found just a few things. They didn't have plain blue balloons. Only blue balloons that said "Welcome Baby." I bought them, and was angry that Wal-Mart had not restocked the plain ones. I was not sure if we would ever welcome baby home. I had a fight, weeks later, with one of the inflated balloons. I won the fight. As I drove home, I didn't know how to face the kids or the cute little babysitter that was babysitting for us for the first time. Everything looked the same around me, but nothing felt the same anymore.
They left me and Jason alone for a few minutes so we could "talk about it." Talk about what? What could we say? I was happy when they left because I could let the tears flow. We tried to be logical about what we were doing, but the logically part of my brain was gone. Logically, I should be buying pink or blue balloons; not deciding which battery of tests to do to see if my baby boy REALLY was going to die. I think Jason's brain guided us through those moments.
When the doctor returned, we asked more questions about the "concerns." She was so kind and patient and we really couldn't have asked for a better doctor at that point. I needed to know if there was a possibility that NOTHING was wrong and that all of these things would be okay. I felt stupid asking that; like they would think that nothing they said to me had registered in my brain. I just wanted all of it to go away and wondered if that was possible at this point. She said it was. I wanted to hold onto that.
They talked about trisomy 18, trisomy 13, trisomy 21 (Down's Syndrome), and a few other things. I guess chromosomes are quite complex. I never worried about it because all of mine were in the right configuration. When they talked about trisomy 18 I seemed to understand what she was saying. She basically said that all babies die within a month. What? Such a strange thing to consider. A baby is the epitome of life. How could a baby die like that? He was so active during the ultrasound. How could that be possible? Somehow I think I knew that was Eli's fate although I didn't want to admit it. It felt comfortable to me in a strange way. I'm not saying I was comfortable with it, but it made sense somewhere in my brain. Nothing else she said made sense.
We decided on the test we thought would be best. It had no risk to our baby and was very accurate. They couldn't do it that day because of the 4th of July weekend so we had to wait until the following Monday to get the tests done.
The doctor left and we were left there; in that room that is supposed to be filled with reassurance and hope; anticipation and excitement. It was now a room that was foreign to us. I remember the clock ticking loudly on the wall. It felt like a bomb. The room no longer felt homey and warm; rather vacant and sterile. There was a picture on the the wall to the left of me, with three beautiful newborn babies posed in some cutesy way. It all seemed so strange. Everything stopped. Nothing mattered anymore. All the emotion and anticipation that went into this pregnancy seemed to be crushed instantly. It was just over. I didn't know what we were supposed to do from there. I went into the bathroom that was attached to the room (because pregnancy women do that from time to time). I made sure the door was locked and sobbed. I felt like my future had been snatched away from me. I wondered if other mothers' had done the same thing in that same bathroom. I wondered why they had pictures of healthy, thriving babies all over the walls when not everyone who left there had a picture like that to look forward to. I found it cruel and bitter, which was all very new to me.
I tried to wipe my face so I wouldn't look like I had been doing the very thing I had been doing, and me and Jason walked out of that room and up to the front desk to make a followup appointment. I hoped no one would see me. I didn't want them to know the truth. I didn't want them to see "that poor girl." "I wonder what's wrong with her baby," they would say. "How sad." It would seem unfortunate, but life would go on for them. It was my whole world. I tried to hold it together and did a pretty good job. I was sure the receptionist knew about my baby for some reason. I didn't want to look at her. I don't know why. That started a long stint of not being able to look at people.
We walked to my car and agreed that Jason would return to work to get some things and come right home. He held me for some time in the parking lot. When I climbed out of the car, I was a vibrant, happy, expecting mother happily anticipating a gender announcement. When I climbed back in I was broken. As Jason walked away towards his car, I didn't worry that he would get in a car accident when he drove away. Our world had already come crashing down, so we were safe for now. It was a strange and unfamiliar thought process. He didn't make it back for the phone call. It didn't matter. Nothing did. I remembered the box the kids had made in my back seat.
I drove to Springville Wal-Mart (aka know as hell), to buy the promised items. I always seemed to go there on the most awful days and that place isn't bleeding with happiness or warmth. It is my personal goal to never go back. I wasn't sure if I needed to buy anything after our news. It was an odd feeling. It felt like we weren't having baby anymore. But we were. He was still my son and still my children's brother. I had to work this out in my mind as I wandered aimlessly in the store. I cried openly and didn't feel out of place doing that in Wal-Mart. There are a lot of strange sights there. I wasn't sure where to go to find blue items. The party aisle, with all of it's baby shower paraphernalia, didn't seem doable,but I couldn't think of anywhere else to go. I found just a few things. They didn't have plain blue balloons. Only blue balloons that said "Welcome Baby." I bought them, and was angry that Wal-Mart had not restocked the plain ones. I was not sure if we would ever welcome baby home. I had a fight, weeks later, with one of the inflated balloons. I won the fight. As I drove home, I didn't know how to face the kids or the cute little babysitter that was babysitting for us for the first time. Everything looked the same around me, but nothing felt the same anymore.
