Wednesday, July 29, 2009


::Very long...sorry. I am in one of those places today::

I just don't know what to say anymore. I have faith. I have had faith through the past two and a half years of my life, when everything took a turn for the worst and my husband and I, who were closer than we had ever been, lost our son. I was angry. I yelled, I screamed, I cried, and every night I would fall asleep and be thrust immediately into a nightmare that is worse than any I have ever experienced. Problem was, it wasn't a nightmare, it was reality. Every time I closed my eyes, all I could see was Eli's too still body on the ultrasound machine, John's face as it all began to click, that reality that our son was dead permeating the entire room. No one said a word. Finally, I spoke. "I need you to say it. Someone has to say it out loud."

That seems to be a recurring thing with me. When there is something apparently obvious, it's like I can't accept it until it is acknowledged. To me, that day, my baby boy was not dead until someone said the words. Every night, I had the same dream, and then I would wake up, and it would all come rushing back. it hadn't been a dream at all.

Then there we were, a family of four again after planning and hoping to be a family of five. Never knowing how to answer when people asked how many kids we had. I knew I had three, but it made people uncomfortable when I just threw it out there, especially since it was basically my job to work with pregnant couples, teaching them car seat safety. We were getting there, improving, one year passed and Seth was on his way. John was dealing with Eli's loss differently than I was, but I can't tell you how many times I looked at him and thought "This has made him grow horrible as this has been, it has made him a better man, too." I thought it had made him take more responsibility, more control, when before he had always been very passive and allowed me to take the reins, which I didn't always want. He was relatively disconnected during Seth's pregnancy, but neither one of us knew how to go through the pregnancy, no idea if he would survive. I tried to bond to him as much as I could, and John kept his distance, I think to guard his heart. I still don't know if he's realized that in doing that, he distanced himself from me, too.

Then Seth came along. He was beautiful and so, so sick. John spent every night with me in the NICU, he got up for middle of the night feedings, he rubbed my back and reminded me to eat. I thought, this is what marriage is when it is real. We are getting through it. Seth will get better. Then, when he was two weeks old, we sat next to each other in his private NICU room, staring at the screen as lines plotted themselves on a graph, over and over again. For the third time, the word REFER came up on the screen. The audiology tech turned to look at us, cringing. "I'm sorry, I can't get him to pass."

I remember John looked over at me, shaking his head. "What does that even mean?" He asked me. "I don't know. I think it means he can't hear." We both couldn't understand it...just days before he had been turning to our voices. We had made jokes about it. When I spoke, Seth calmed. When John spoke, Seth became active, crying out.

We thought we were taking home a baby like his older brother, Jace, a baby who had been very sick at birth but recovered one hundeed percent with no delays, no issues, nothing. Instead we took home a baby who turned out to be both physically delayed and deaf. We were overwhelmed. I'm a fixer, so I tried to spin it for everyone else. We began to learn sign language and research cochlear implants. John started a second job so that I could stay home with Seth to take care of his therapy. We sat down together and committed to at least a year of being dedicated to Seth's needs as it was becoming clear he had a lot of them.

As Seth's first year began to wind to a close, I started to feel hopeful. He was finally eating, finally sleeping. He could hear. It was like I could see the end of my sentence up ahead. Please don't misunderstand...I love Seth and am incredibly bonded to him. But I missed my husband, my life. I had only been away from Seth for an hour or two on a handful of occasions since his birth. In many ways, I was his sole caregiver, as he would not take a bottle and became very distressed whenever I left. By that I do not mean that no one was willing, but Seth just wasn't able to be with just anyone. As I began to see signs of his becoming more independent, I was so excited.

Of course, getting pregnant again threw a wrench into things, but I figured that people are pregnant for 9 months for a reason. There was every chance to think that this pregnancy could go like Seth's, mostly uneventful until his precipitous birth. There was a good shot that I had at least a few months to enjoy a little extra freedom.

So when John told me that he'd gotten a baby sitter for all three kids for us to go out for our anniversary, I was momentarily concerned, but then excited. It was time. Seth was almost one...he was catching up, he was being discharged from specialists right and left, and he was healthy. Finally, I felt like I could leave someone else in charge of him.

Then, of course, everything fell apart. After an argument where I told John to leave but didn't mean it, he called my bluff, and left. Then I found out that he'd been leading, in essence, a separate life for sometime, connecting to someone that wasn't me. I'd spent months feeling alone, thinking I was paranoid to feel that way, only to find that I, for all intents and purposes, had been alone. All the things that have become clear to me in the past few weeks have been overwhelming and life changing. I was selfish, I was cruel. The worst part was, I had never even realized it. I had put others before my husband on countless occasions.

But, I thought, maybe God had let this happen so that we could be woken up, realize we needed to make our marriage a priority. I became excited, thinking about all the positive changes we could make, all the ways we could work together to have a great life, together. I could even forgive the infidelity, the emotional connection...I would not wish what we'd been through on anyone, and if this girl is what it took to wake us up, make us work on our marriage, then I would thank her gladly, as silly as that sounds.

But of course, he was not interested. It wasn't about her, he said, it was all me. All the things I had done wrong. Too little too late. I couldn't process it, and needed clarity. "What do you mean, do you mean you don't love me?" Well, yes, that's what he meant. I stared at him, confused. It was like 2 + 2 had always equaled four, and suddenly, he was telling me it equaled 15. I couldn't process it. Why, after everything we had gone through, just as we were coming out of the tunnel, he give up?

Why would God let something else happen? How much are we supposed to be able to take? I know He's not supposed to give us anything we can't handle, but I don't know if I can handle this. As if that wasn't enough, suddenly, again, Seth was sick. Lots of little things. Low iron. Trouble breathing. Ear infections. Losing weight. This wasn't supposed to be how it went. He was supposed to be better. He was supposed to be moving past his first year. We were supposed to be a family.

Today, I sat at the hospital for the greater part of the day, shuttling Seth from the Pulmonologist to the hospital for labs, x-rays, procedures. Everything that felt unrelated might not be unrelated, and I am waiting on a call to discuss looking at a possible hospital admission to do further testing.

I am stumbling. I have faith, but I want my baby to be healthy. I want my kids to sleep through the night without calling out for their father. I want to forget the things my husband has said to me...that he will pursue this girl if her current relationship ends, that he wants to be with her, that there is nothing, nothing in the whole entire world that could make him come back to me and our children. I want to know why every time someone tries to talk to him because they care he holds it against me alone. I want to know how seven years can be erased so quickly, why he can take a chance on someone he's only known a few months but not his own wife. I want to come home from a harrowing day at the hospital to someone who will wrap their arms around me and tell me they love me, that everything is going to be okay, not be sitting here waiting for him to show up to see the kids and make myself scarce. I want to be able to write the things I think without wondering whether he'll be mad at me for writing them, without wondering if I should censor my thoughts to keep from making him feel bad or feel like he's been misrepresented.

I just want a lot, but really, it's not that much. I want the husband I was too oblivious to realize I was losing, for him to realize that I am worth a shot, and if it doesn't work, what more has he lost? I want the children that my kids were before this happened, I want Seth to be healthy. I want more than anything for this baby to be born and grow up knowing that they were loved by a whole, complete family, not by one who split up before he or she was even born.

I have faith, I do. I keep saying it, because if I do, maybe I'll feel it. Because right now, I am not feeling it. I want to lash out, to scream that I've held my dead child and thanked God for the chance, I've already adjusted to way more new normals than most people have to, why do I have to do this too? Yes, I'm being whiny, and selfish, but how much am I really supposed to take? I am not as strong as you think, and I don't want to be.

I am stumbling.
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