Hope Or Die

I'm going to take you back a little farther today. A few days before that special storm that God sent. I was exactly 20 weeks pregnant, and having a "just for fun" 3D ultrasound. I get them every 2 weeks or so, just to get pictures and videos of Augustus.

This was a hard ultrasound for me. It was the second one we had since the diagnosis and I was very emotional about seeing him. The tech did not do all the things she did with him the first time we went to visit. I noticed she did not measure him like she did before, or mention ANYTHING about his size etc. At the end, she asked me if there was anything else she could do for me or any questions I had. I didn't want to ask, but I could not help myself. I said, well can you see anything wrong with him? Silence. Painful silence and a strange look on her face. It was like there was a giant elephant in the room but nobody wanted to acknowledge it. She asked me, "Well how much do you want to know?" And apparently I blacked out, because my family says I didn't say anything. They didn't say anything either, and we went home.

The car ride home was plagued with deafening silence. Nobody said much. Finally, I got home and my mom asked if I wanted her to stay with me. I said no. I knew the fall out was coming. I crawled into bed, and I cried. I cried so hard and wondered how I could ever stop crying. I remember telling Gus that it was ok, he could go when he was ready. I texted my few friends at work and told them I wasn't coming in the next day and could somebody cover my shift. I told friends and family I was going to bed, and I wasn't going to get back up. I wasn't going to keep going. I was giving up. I lost hope.

I eventually wore myself out and fell asleep for a couple of hours. When I woke up, it was nearly dusk. As I laid in a very dimly lit room, I felt the darkness and the loneliness crushing me. I thought about Gus and how this wasn't what I wanted him to feel. I knew I had to at least get out of the bed. So I threw on a pair of old shorts and a t-shirt, and grabbed my giant bag of trash out of the kitchen and began walking it half a mile to the end of our road. I wasn't happy, I was still devastated, but I was up and I was out of the bed and out of the dark. The sun was beginning to set, and I looked around at nature and tried to see anything beautiful. I mumbled at God, and I kept walking in the last hours of that hot summer day.

The next day, I got up and got down to the barn to lift weights. Still not at peace, but understanding a valuable lesson. The lesson for me was... laying down and giving up isn't an option. Even if Gus dies.... I have to get up and live for him, because that's what he would want. Not to say I won't or do not have some very hard moments, hours or days. To give up completely is a death sentence. My hope has to be in that no matter what occurs, God will provide me with the ability to handle it, and to have some peace.Will I ever be the same? No, I know I am forever changed. But my hope is also that I am forever a better woman, Christian, wife, sister, daughter and friend because of my trial. I hope I will always shine for my Augustus.

The next day, my sister called the tech and asked her what she had seen. She said nothing except he was measuring a week behind. She said he had all 4 chambers of his heart and that she didn't check anything else because it wasn't a diagnostic ultrasound. I did not know at the time my family had requested that she not do any diagnostics, as they wanted me to just be happy and enjoy seeing Gus. At my anatomy scan a week later, Gus measured in range, though he was still a week behind, and showed no abnormalities. Tomorrow is our next anatomy scan and I am 27 weeks. I am terrified, and feel like I will fall apart if they see anything wrong. So hopefully, I remember all of this tomorrow.

The Storm

I have mentioned briefly the struggle that occurred for me spiritually when we got the final confirmation that Gus had trisomy 18 in a previous post. I wanted to take the time to write about that struggle, as I feel it is very important to share that experience. I am so glad I jotted things out on my instagram as I was going through things, because it helped me to remember exactly how I felt and what I was thinking. I knew someday I would want to write about it, and I know from experience that you think you will never forget the details, but alas, you do. I recognized the importance of taking notes as things happened.

It was the last week of May. I had just turned 14 weeks pregnant. As I waited for the perinatalogist to call with the FISH results of our CVS testing, I prayed. I asked that this be a false positive and that Gus be ok. I also told God that no matter what, I would praise him, I would trust him, and I would be faithful. I really believed that I could do that. After all, God had walked me through so many other terrible trials and heart breaks... surely I could somehow trust Him on this. Right? Wrong. When that call came in, and my husband had to break it to me that it was positive, I was instantly angry. Everything I had just prayed 10 minutes ago was out the window. Could I still believe that God was good? Nope, I really could not at that time. I raged. I mean I completely raged at the idea that God would allow this to happen, not only to me, but to anyone. I could not pray, I could not ask for help, I could not do anything but be enraged. The questions were many, and the inability to understand was all consuming. All the scripture I knew, all the well intended messages people sent quoting it to me, only frustrated me and made me angrier. Suddenly, scripture was just a bunch of words that meant nothing to me. It no longer applied to my circumstances.

That is a very raw and harsh thing to say. I know that many people read those words and think ouch! You poor thing, you can't see the truth. Well you would be correct, I couldn't see the truth. To me, this was beyond anything the Bible can speak to. It was and still is the most emotional, challenging struggle a person can endure. I asked things like, "If God knits babies in the womb, why would he make them wrong?" Many, many, many questions that scripture only seemed to contradict. I still don't have answers. However, I don't have the anger. This is the story of how God helped me to get past that phase.

It was early/mid July. I awoke, and went in the bathroom to start my morning routine. While I was in there, I looked out my window at the scorching summer heat beginning to creep up. It had been very dry, and very hot. I had managed to tell God thank you for the various things that I still had, such as a wonderful and supportive family, and of course my husband. I was thankful he was able to go back to work and we would have insurance after he had been laid off repeatedly. There was a lot to still be thankful for and I made myself acknowledge this... even though I was still extremely angry. For some reason, this particular morning, I prayed in the bathroom that God would send me a sign that things were going to be okay. Then I decided to get specific. I asked God to send me a storm. Not just a little shower, a full blown storm. I went about my day.

Evening rolled around. My husband was in bed watching tv. I was sitting in bed with him wondering where our french bulldog named Juan was. It was unlike him to not be in bed with us by this hour. So I went out the back door to look for him. (He has a doggie door, so he can come and go as he pleases.) There he sat on the back porch area on the side walk just gazing at the sky. I said what are you doing bubba, come inside. He would not come, so I stepped out and looked up. All around us, there was lightning. It was beautiful and there was so much of it. I sat down with Juan and we just watched. I thought to myself, this is lovely. It isn't a storm, it is probably just heat lightning, but it is lovely. I was pretty ok with the fact I got some beauty, but somewhat disappointment that it wasn't really what I had asked for. I came back inside and got back in the bed. Juan still didn't come inside. I waited a little bit, and went back outside to check on him. He remained in the same spot, still looking at the sky. I stepped out again, to go to him, and this time I heard thunder. I ran back into the house to get my husband, and told him you have to come see this. I said I prayed for a storm and I think it is coming. Together we ran out back and as we stood on the sidewalk, an almost cold wind blew so hard it nearly knocked me down. I felt a rush of respectful fear. I recognized who this was. I was being told loud and clear who was in control, and I almost crumpled at the realization that I am so small. The wind gusts were frightening to me, so I came back inside and checked the radar. Sure enough, there it was... my storm. It poured rain and it thundered and lightninged.

As it turned out, there wasn't a chance of rain that day or that night. There wasn't a chance of rain that week. The next day at work, someone came in and said, "How bout that storm last night! You know there was no chance of rain, it just came out of nowhere!" I smiled and said, well I prayed for that storm. My anger started to fade after that night. I would not say that I understand what we are facing, but I will say, I know I am not alone.

This Wasn't Supposed To Be My Life

I enjoyed the rain so much last night and into this morning. I slept well, despite having a weird dream. I cannot remember the details, but I dreamed I went to deliver Gus, and he was not there. It was bizarre. Hormones I guess.

I got up an hour later than usual, had my coffee and my bath. Cleaned my house, and started making my lunch. The phone rang, I didn't know the number, but felt like I should answer it. It was Cheryl, a children's nurse calling to talk to me about my options during labor and delivery. She was a very kind woman, who has been in this business for 30 years. They call deliveries like mine, "special deliveries." We went over some things and I decided it would be in everyone's best interest for me to go meet with the neonatologists (NICU) after my level 2 ultrasound at the new MFM doctor on the 29th. While this conversation was a blessing, it was also extremely difficult.

There is no way to know what Gus will be like when he is born. He could be stillborn, he could need help breathing, he could need a lot of different things that really, I have no idea about. I am educated pretty well in the things that could go wrong, but not so much in how doctors can help him. Therefore, Cheryl says it would really help me to meet with the NICU team to understand the language and what could happen. When they ask me a question and I need to make a decision on the spot during delivery... it would be very beneficial for me to know what they are talking about. So I have agreed to meet with them in hopes of being informed enough to make some life or death decisions.

I am going to be making life or death decisions. That is a very heavy sentence. Essentially, the choices I make for my son could save his life or end it. Without getting into detail about all  the possibilities, I just want to say that this seems insanely unfair. I do not want to be making the decisions, yet I have to make them. Honestly, I am the only one who should be making the decisions. I guess what I really am trying to get at in so many words is... why the hell do I have to be in this situation. I didn't use a question mark at the end of that sentence, because it isn't a question I expect anyone to answer. Not even The Creator.

When I think back over the plans I had for my life, I never saw this one coming. I wanted to be married my entire adult life. From the time I fell in love at 16, I dreamed of being with that one special someone. It took me a very long time, some very bad choices, and many tears with a broken heart... but I finally found my person. I always told my husband I did not want to have children. He so wanted to, but me not so much. I taught pre k and kindergarten for 7 years in a low income school. I felt pretty mom like to those kids and did not think I could tend to them and my own family. I also loved the freedom I had to do as I pleased and feared being tied down to motherhood. I also knew that I would love a child so much that it was scary. I never wanted to love someone that much.

After a bad season in our marriage, but recovering stronger than ever, we decided to "try" for a baby. We had not been on any birth control for 2 years, so I really didn't think it would happen. But on Easter Sunday, I took a pregnancy test and there it was... two lines. My husband was thrilled, my family ecstatic... I was devastated. It wasn't really supposed to happen. Whoa, that was a lot to process. As time went by, I started to love this baby. At 13 weeks, I told my son I loved him for the first time. The next day, I got a call saying he wasn't going to live. This wasn't supposed to be my life.

There has been a saying I always thought was so true... "If you want to make God laugh, just tell Him your plans." As I lay in the bathtub after hanging up with the children's nurse, I thought to myself, I cannot believe this is my life. How will I make these choices? What is our life going to look like when this happens and after this happens? And how in the world did I get here? I hug my bump and tell Gus I love him. I tell him that mamma wants to do what is best for him. Then I can only hope that sweet Gus will let me know what is best, because I can't make these decisions. No mother should have to make these decisions. This shouldn't be anyone's life.

The Choice To Carry

Before I begin telling my thoughts on the choice to carry versus termination for medical reasons... I want to say that this choice is always made out of love. I do not in any way think people who chose to terminate are bad people. I think they made the choice they had to make for themselves just like I did. I can say 100% that I do not judge them, because I had an abortion when I was 20 years old, however it was for mostly selfish reasons and a very bad situation. But that was then, and this is now. With that said, I am going to be very frank about why I chose to keep Gus, and it may be difficult for someone who has terminated to read on. Please know, I do not judge you, nor do I think less of you if you are that person.

Because I knew first hand how traumatic termination is... I seriously questioned how that was going to be "better" for my son. At the time of making this decision, I did not realize how many of these babies with trisomy 18 pass peacefully, some even live a long time. I was only informed of the worst case scenarios, which honestly, were terrifying. At no point was I ever given the other possibilities. Like I said, when I was making this choice, I only had a tiny bit of information. However, I had a lot more information personally, because I lived an abortion, and I knew that abortion wasn't any less violent than suffocation. I think when the doctors start making you feel like it's going to be a horror show, and then act like you can avoid all this by having an abortion, you naturally just go, well... okay yeah, that is what I should do. This is not the time to make a decision. Do not ever let someone persuade you when you are already so blind sided that you are not able to process or think through something.

I know my first reaction was I have to terminate. It did not take long however, to realize that no, no I don't have to do that. My beliefs were, that if God truly was in control, then I had to let him write my son's story. If I really was a person of faith, I had to allow God to do what He wanted and I had accept the fact that I was simply never going to have control over this. Truly, in life, we have very little control. We can only try to control our actions, but we can't control anything else. What a profound wake up call. It was not my place to rip my baby from my womb, from life. If he was to die, it would be naturally, not by his mother's choice to end him. I am his mamma. I am his advocate. I am the one who loves him unconditionally and protects him. I am not the one who ends his life.

No matter how short his time with us will be... he is a person. A little person who is more loved than he could possibly ever fathom. Do I wish I could miss all this pain? Yes. I wish I was going to have a baby who could live a normal life and out live me. Do I regret carrying him, or getting pregnant? No. Gus is what made me realize my capacity to love is greater than I could ever have imagined. He teaches me things that I could never have learned if he had not existed. My choice to carry him was a choice to be faithful to God, and to love him as long as God would allow me to do so. My choice was never really that hard in all honesty. I knew it was the right choice for me when the huge weight of trying to make it was lifted by realizing I did not have to terminate him. So here we are... 25 weeks pregnant today, and I love him so much my heart could burst.

CVS testing

So, after the phone call that changed everything, I was set up a few hours later with a perinatal specialist. They were able to see me that afternoon, so we went to get our level 2 ultrasound and I decided I wanted the CVS to confirm or dismiss the findings of the Harmony blood test. At that time, I believed I needed to "know". They did not see any abnormalities on our ultrasound, but I still wanted a diagnostic test, as I believed that I could not carry on throughout this pregnancy not knowing if my child had a fatal condition or not. I have since struggled with whether that was the best choice, but I really believed at that time... I needed to "know."

The CVS was scary. I did not look at the needle, but judging by my husbands face, and my mom nearly in tears... I knew it must be really big. I wouldn't call the procedure painful, but I did jump off the table when I felt it hit my placenta. It is a very foreign feeling. Hard to describe, but not really painful. It only took about 1 minute from start to finish. The doctor talked to us a little bit about rapid FISH results and that the full results would be back in 2 weeks. It may have been the longest, most gut wrenching 48 hours of my life waiting on the rapid results to come back. I knew I could not handle hearing the news, so my husband took that call. It was positive. I was frozen. I was angry.

I kept saying I knew it, I knew it. Everyone wanted so bad to believe this was a false positive blood test, but here we were, with a positive confirmation on the diagnostic test. I was furious. I had prayed all afternoon, and I had told God that no matter what I would believe in Him, that I would still worship Him, and I would trust in Him. Well, that was out the window. I know I thought I could still do those things even if it was positive, but let's be real... I could NOT. I raged at God. And I didn't stop raging for weeks. But I will write about that another time.

So, here we are... faced with the choice to terminate now, or carry our son. The specialist said that these babies suffer when they are born. They can be given pain medication, but they suffocate and it is very horrible. He said you know, you can try again and have a healthy baby. I have had lots of patients who terminated and then got pregnant again and everything was fine. He then went on to say if we wanted to be more discreet about the abortion we could go to another city. Somewhere in all this talk of abortion he mentioned that if we chose to carry to term, they would be there to support us. However, I definitely got the vibe that he believed it would be better to terminate. I left there feeling like if I chose to carry Gus, that I was cruel. Of course, my husband and I didn't want to make our baby suffer, but could I really end his little life?

The Phone Call

I was a nanny part time, and I worked at a deli/gift shop part time as well. I had been at the nanny gig for about an hour, when my cell phone rang. It was my doctor, so I answered it, not really thinking much about it. A few weeks prior, I had opted to get the Harmony blood test that screens for chromosome issues just to find out the gender early, even though we knew it was most likely a boy from the ultrasound. My sister had done it with both her kids, and it didn't cost much, so I just thought yeah lets find out what this baby is early! I had hoped for a son. But this call wasn't about the gender. I really cannot even remember the words that came from his mouth and entered my ears. All I heard was "this pregnancy is not viable". What do you mean? What are you saying? Trisomy what? As I struggled to write the words down on a old piece of paper, I remember asking is this hereditary? What causes this? And he informed me that no, it was just a "fluke" that sometimes occurs when the cells are dividing. Then I hear, "I know you will need some time to consider your options, and discuss this with family." Options? Like what options? Termination? I didn't really understand what he meant, but I took it as well, there is only one option. I asked him how accurate this test was and he said very accurate, but he would send me to a specialist to confirm it. He then asked, "Is there anyone else I can call for you?" All I could say was yes, just call my mother.

Click. I start bawling. I call my husband. I am crying so hard he instantly knows something is very wrong. He says he will meet me at home. I call the kid's mom, say you gotta come back, I have to go home. From there, my world collapsed. What did this mean? I wasn't going to be a mother? I was going to have to terminate my pregnancy? Wait a minute, I just told my baby I loved him for the first time yesterday after struggling to be okay with even being pregnant and now I don't get to keep him? This cannot be real. This cannot be happening. Utter devastation.

I arrive home, my husband is also crying so hard he and I can't process anything. We held each other and wept in the kitchen. What comes next? What is going to happen to us? So many questions, and no answers.

Intoduction

My son, Calloway Augustus, was diagnosed at 13 weeks gestation, with full trisomy 18. Some of the things I write will be going back in time, because when all of these things I went through occurred, I really wasn't in a place that I could mentally write them down other than on instagram. As time has passed, I feel the need to do more than write little notes about my journey on social media. I want to tell my story. I cannot state a purpose for this blog, I can only hope that it is therapeutic for me, and can touch someone else in a positive way. I think many people who go through great trials can only hope and pray that something good can come from whatever tragedy they are forced to endure. I cannot speak for all, but I certainly feel this way. Welcome to my blog... Loving Gus.