Originally a CaringBridge post. Link to original post is the date.

Jan 7, 2016 11:40pm

Ever since we found out about the diagnosis of Anencephaly, I’ve been struggling with being a parent to Kanin. I’m not sure if it’s because he hit three years old three days before the diagnosis, the turmoil he felt after we found out about the diagnosis or combination of the two, but he’s been a terror. Before we moved up here to Maine, he was the most perfect kid. Obviously having tantrums a bit, but going out he would sit quietly and no one knew he was there. He would eat anything and generally be the kid that everyone asked how we got him to be so well behaved. Then the move happened. In our move from NC to Maine (damn Navy) we had a 14 hour drive, many stops, a few hotel stays and even saw friends along the way. Then we lived in a hotel for 30 days. 30 Days! That means he napped with us in the room, while he previously was in his own room alone. His food options were limited and we were constantly on the move as we were house hunting and then ultimately waiting for Navy housing (damn Navy!). Once we were in a house, he wouldn’t nap alone, he became extremely picky with food and started acting out a bit. Still nothing that anyone else aside from us would consider “bad”. Him being two years old we expected the start of defiance, that was no big deal. Then he hit three, and anencephaly happened. Ever since then he’s become more difficult. Kanin has always been a strong willed kid, very assertive in what he wants and that’s intensified. Don’t get me wrong, he’s still a sweet and well behaved child, just not all the time. He’s still way more well behaved than some peoples kids. But I’ve struggled with him and this defiance for the past eight months.

Struggled like you couldn’t believe. My parenting style has changed so much from where I was at, to what I’ve wanted to be. I don’t like it. There’s not a single thing about my parenting him that I approve of. I used to be patient and calm with him. Now I’m chaotic and quick to walk away. To say I feel like a failure as a mom is an understatement. Ever since Aerilyn was born and we left the hospital without her, I’ve felt so distant from him. While pregnant I was distant in small ways and just went with the motions. Now I’m completely removed from him. The logical part of my brain keeps me interacting with him, comforting him when he needs and wants it. Emotionally, I want nothing to do with him. That sounds absolutely awful, and it is, but it’s the truth. At this juncture in my life, I’ve realized I don’t want to be his mom; a mom in general. (Don’t judge me) I’m not sure if that’s because I can’t have both my kids, therefore the “all or none” mentality, or if it’s because he’s such an added stress that I can’t emotionally handle it right now. It might even be that he’s a living, breathing reminder of what I’ll never see with Aerilyn. I wish I knew, I wish it were different. I sure as hell hope it’s just a phase in my grief. I’ve seen so many other people lose their child/ren and then cherish their living ones. I envy them. For some reason in my convoluted brain, I have the opposite. How can I not want my child? It makes me feel like an even bigger failure. So to those who’ve felt this way or are feeling it, you are not alone. Disclaimer: This does not mean I plan on harm him, or myself or even Josh. I still do what I have to for him, I just have no want for it…

Few days later: After talking with someone, they brought up some possibilities as to why I’m in this mental vs emotional battle with Kanin. One possibility could be I’m angry with him. Angry at my three year old, for what? I’m not sure. Once again, maybe it’s because he’s a living reminder of what I won’t get with Aerilyn. I won’t get to see her run around and chase the cat. I won’t get to see her play with dolls. I won’t get to see how crazy her hair would be after a nap. I won’t get to see her breathe. Maybe I resent him for all of those things. Or maybe I’m angry with him for being so burdensome during my pregnancy. That maybe because he was around and I had to focus on him and his needs, I didn’t get to fully focus on Aerilyn. Then to add to that, he has interrupted my grief. I have to take care of his needs. I can’t just wall myself off in a room and cry or sleep the day away. I have him to parent and to take care of. It’s not like he can feed himself efficiently and certainly not watch himself during the day. Those reasons are selfish and typically internalized by… everyone. No one wants to admit they can’t take care of their child, or even want them. Let alone put it in a blog for hundreds of people to read and judge you. But these things can’t be kept inside, they’ll eat you alive and make you feel worse than you truly are. For me, I feel terrible. Mentally, logically I know my son needs me and I need him and I would never give him up. However, emotionally I feel the exact opposite. And at this point, it’s okay. Whether it’s anger, depression, stress or some other unidentified emotion towards him, one day I will want him again.

This brings me to a harsh subject. A friend wrote on her blog years ago about how she witnessed a woman go through grief of losing her child and ultimately ended her life. My friend wrote how she had gone through the same things, that it could have been her who ended her life instead of the other woman. This resounded with me because I recently saw another woman who lost a child and four months later ended her life. In both circumstances the last social media/blog posts they said they were getting help, or they were hopeful for the future. Then within a short time after that, they ended it all. They couldn’t deal with the loss and pain of their children being gone. How quickly it could happen no matter how much hope you have. I don’t know what went through these women’s minds, but I sure hope they found solace in their escape. For me, I’ve battled depression most of my life; suicidal problems and all. Many don’t know my past, and that’s probably a good thing. Without knowing it, you should know that me still standing here is damn near a miracle. I’m not sure what kept me from completely obliterating my life all those years ago. I know what keeps me around now; Kanin. Strange isn’t it? How I don’t want him, yet my life, my reason for living his mainly him? See, I grew up without much of a mom. Not because she wasn’t around, but because she was involved in her own things. She did the best she could, it just wasn’t what I needed or was needed during most peoples childhood. I couldn’t do that to Kanin. I couldn’t take away his chance at knowing me or leaving him with thinking maybe he was the problem. No matter how hard life gets, my own guilt for him keeps me here. It’s a daily struggle to escape depression and all the turmoil it creates. You never know when, where or if it’ll strike. You don’t even know how. Will it be crying? Anger? Suicide? You just never know. You have to stay accountable. Those two women lost sight of what kept them here for half a second, and in that half second their lives crumbled before them and they ended it all. =( This is why I see a counselor and she’s extremely helpful.

Sort of a shoot off on the subject. No one would know if I were truly having problems because ever since Aerilyn was born people have basically disappeared. I get it, really I do. People don’t know what to say, if they should say anything about Aerilyn or not, if they should act normal etc. But not saying anything is much worse. I can count on one hand how many people I’ve talked to since December 15th (minus her memorial). One hand. That’s even including josh who I see every day. I’ve always seen meme’s of things like “wanna see your true friends, have kids”. I didn’t experience much of that when I had Kanin, but I sure as hell see it now. The phrase really should be reworded to “wanna see who your true friends are, lose a child”. That’s the real test of people. Don’t get me wrong, I don’t expect people to fall all over me or anything like that. However this just sucks. Josh can sit next to me and his phone will go off continuously and it be a few different people talking to him. Not me. My phone doesn’t go off much these days and normally when it does, it’s my sister or Josh himself. It sucks being so alone and isolated. Even if I didn’t already feel that way in my grief and how no one will ever 100% understand what I’m going through, I now don’t even have a normal friendship.

You know what I did last night at 2am? I was up messaging a friend who was having problems. I put aside my issues, even though I wanted to say “go fuck off with your petty problems”, but I didn’t. And their issues weren’t petty, they just weren’t and aren’t on the scale of mine right now. However, I still talked to them, gave them advice when I could and ultimately put them in front of myself, even if it was for an hour. That is what a true friend does. They help someone even if they’re barely able to help themselves. They try to be there, even to just listen. Is anyone really a true friend these days, or is it just me?

I stated I’m a private person not too long ago. That talking about my grief, my journey with Aerilyn and without her was way out of my comfort zone. I got told today that I am more protected than private. That because of my past, I hold things in and keep myself guarded because I don’t want to be burned again. I don’t want the extra pain, or the added judgment. I would have always pegged myself as private. Protected? I’m not sure that really applies, but it’s a new way to think about things. Maybe stepping out of my comfort zone will help me realize what one I am, how one or the other benefits me if at all. I’ve had people say how amazing they think I am for being so candid. I even had someone state I should eventually try to do a book about all of this. I can’t express how uncomfortable it makes me to hear those things. I’m not good at taking compliments on a normal basis, right now it’s even more difficult. I don’t feel amazing, I don’t feel strong. None of it. I feel uncomfortable and out of my skin. I’m am not saying don’t say those things to me. It’s actually a good thing because it makes me feel something. Being partly numb still, I need those feelings. I’m just letting you all know, if I just say “thank you” or kind of skirt past it, it’s because I’m highly uncomfortable. Writing all of this makes me uncomfortable. People can judge my writing style, my inability to use grammar well, my lack of editing, my feelings, my thoughts, my actions…. All of it. It’s freaking scary to put yourself out there so much. So… yeah. Just wanted to put all that out there…

I have a well known topic to go over but first I need to write a completely contradictory statement to what I’m about to say. I am obsessed with chocolate cake right now. A few weeks ago I realized why I want and am eating so much chocolate cake. I associate it with Aerilyn. In the beginning of my pregnancy I wanted a super moist, fluffy chocolate cake. I didn’t eat any until the weekend of Aerilyn’s diagnosis. I was so upset and just in a daze and Josh came home with two “individual” pieces of cake. Now I say “individual” with the quotes because it was freaking huge. At least for two people. Anyways, I ended up eating it. Throughout my pregnancy, every time I ended up in the hospital I would order their chocolate cake. For a hospital cake, it was pretty damn good. Then while I was in the hospital for labor and all while we were with her, I had their chocolate cake. It was so damn good. I even remember eating a piece while holding her, hoping I wouldn’t drop anything on her. Then after, Josh and I went to a place called The Library in Portsmouth, NH. I ended up ordering their seven layer chocolate cake. Oh my god, it was the BEST chocolate cake I’ve ever had. It was freaking delicious. I’ve been eating chocolate cake pretty consistently ever since she was born. Although yesterday I made a cake and couldn’t figure out why the taste was slightly off, and why it wasn’t as moist as normal. Turns out, I forgot to put the butter in it. Oops! Lol. Anyways, now on to my self loathing portion of this topic.

hate how I look. 100% hate it. I know, I just said I’ve been eating cake. That’s about the only truly bad thing I have been eating. When a woman gives birth, most the time -unless you’re a freak of nature- their body is jiggly, soft and just all around unappealing. I don’t know many women who likes their post partum body, especially only a few weeks after giving birth. But plus side, typically you have a nice squishy baby to distract you from the fact you need to still wear maternity pants, or that stretched out skin your belly has acquired. Too bad I don’t have that distraction. I see everyday how my body looks only three weeks post partum and I hate it. Going out in public is the worst. Again, normally you have a baby to show why you are carrying those extra few pounds or why your stomach is a bit more flabby than it should be. Obviously I don’t have that. No one in the outside world knows I had a baby and lost her. No one knows why I carry her blanket with me everywhere I go. No one knows why I am still wearing maternity leggings, or why my stomach has a pooch on it. It’s fucking infuriating. I’m to the point where maternity shirts are too big on me, and my regular clothes don’t fit quite right. Or they fit too tightly for my liking. I can fit into my pre pregnancy jeans wonderfully though. Actually they’re pretty big on me but highly uncomfortable, so I’ve avoided wearing them. When I saw my doctor a week ago I had lost over 20 lbs. 20 lbs in two weeks! I hadn’t even gained weight while pregnant. I fluctuated a few pounds the last few weeks, but that’s it. So where the eff did 20 pounds go and why do I still hate my body? Most people would be ecstatic at losing that much. I’m just wondering where it came from and where did that loss come from? My legs, stomach, butt? I’m not sure. But I still hate my body.

Not only am I having typical post partum “I hate my body” issues, it’s intensified because of the circumstances. It also has some extra baggage added. Because I’m in such a horrible state with Kanin and because Aerilyn died, I feel like my kids ruined my body. Kanin gave me terrible stretch marks in the last four weeks of my pregnancy. My hips get super wide as well as my ribs, and they never go back to where they were before. I’ll never look like I used to before kids. Many people are proud of their stretch marks and the changes their body did for their kids. Not me, I always have to be difficult. I want my body back, or a body I’m comfortable with. The catch? I don’t want to work for that body. I don’t want to exercise or do anything to help me reach that goal body.. or a body different than this one. I am barely able to muster the energy to get out of bed, let alone exercise. How the hell am I supposed to be okay with myself if I can’t even find the energy to fix it? I also have PCOS (polycystic ovarian syndrome) and that makes losing weight even more difficult. Plus all that added crap that does to my body. I just hate it. I got so upset the other day at how nothing fit me, I literately cleaned out my closet. It’s totally minimalist style right now. I think there’s maybe 6-8 shirts in there that fit me, 3 pairs of leggings and a few dresses and skirts that are spring/summer only.

Clearly I’ve been struggling with many things, hence the name of the post. I’m not happy with any of these struggles. I’m not happy with how my life is going and it’s mainly because of grief. Anencephaly has changed my life is more ways than I could possibly imagine and almost none of it is good. I fucking hate Anencephaly. That is all.

DISCLAIMER: I am not a hazard to myself, my child or even my very helpful husband. Don’t worry, I know my limits. 

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