How We’ve Been

So it’s been almost two weeks now since we found out about our dear Claire having anencephaly. I have honestly been overwhelmed by the amount of love extended to us in this time, and I am so very grateful for everyone who has lent a kind word whether in person or via text or Facebook.

The first thing everyone asks me these days is, “How are you doing?” but not the casual question we all usually throw around, the one clearly loaded with meaning. And I can honestly say that I am doing really well. Most of the time people just give me a look that seems to say you say that but I know you’re just putting on brave face. I realize that it’s hard for anyone to understand how we can be alright, but I want to assure you that we are. I decided to explain here how we’re coping to hopefully convey better how we can possibly be ok (well, mostly how I’m coping; my husband is also doing well, but his methods of mourning are different than mine, and if he wants to share them he can, but that’s not for me to do).

First, I just want to share part of a conversation I had recently with a good friend that I think begins to explain things. She messaged me about what’s been going on and expressed a desire to help in whatever way I needed. This is most of my response:

I know this sounds odd to most people and most probably would think I’m lying, but I’ve always been very, very good at handling adversity. Not like it isn’t hard or sad or anything, but I’ve never had a problem with having faith and trusting in Heavenly Father (I really think it’s one of those gifts of the spirit that some people have). As such, I always feel a lot of comfort and help from heaven- it’s usually really easy and natural for me to see my blessings even in bad times. When we first found out about our Claire’s condition I didn’t expect to be able to handle it the same way as past adversity. This is just something so much harder than I ever expected to go through and I really didn’t think my faith would hold this time, and I gave myself permission to be ok with that because it is so hard. But by the time I finished writing my blog post, I realized I was handling it just like past problems, maybe even better. Don’t get me wrong, I still randomly cry when a minute before I was feeling fine, and I am certainly still indescribably sad that we won’t get to have our daughter with us for very long, but I don’t feel angry. I don’t feel like I wish it could’ve happened to someone else instead, because how could I ever wish that on anyone? Through the sadness, mostly I’ve been feeling a lot of love and reassurance and acceptance. I don’t want to pretend it isn’t happening because it is, and I don’t want to push Claire from my mind since this is the only time I have with her. True, it hurts more to face it head on, but it also makes my love and me stronger. I don’t know exactly what I need from people yet, but genuine caring, love, and understanding is really what comes to mind.

Everyone grieves differently. Some people pretend nothing is different. Some people just keep busy so they don’t have to think about it. Some people need to talk about it with loved ones. Some people need to express their feelings in a creative outlet such as painting, song writing, or keeping a journal. I’m sure there are millions of different ways for millions of different people to mourn. My way is face everything head-on. I need to learn everything I can about the situation (in this case that means I needed to read up on anencephaly and see how other parents have handled similar situations), then I need to take action and control whatever is in my power.

I can’t control the outcome of Claire’s birth — she will leave us all too soon. But I can treasure the time I have with her now, every little jab I feel and even the aches and weird symptoms that come with pregnancy. When we first found out that Claire has anencephaly, I remember thinking that my husband was lucky because no random people at the grocery store or library or wherever would ever come up to him and want to strike up a conversation about our baby that he’d have to stay gracious through. But now I know that I’m the lucky one because I get to feel her moving and growing, and he’ll never get that experience. I feel so blessed that I get to carry her these coming months.

I can control what I focus on, and I choose to focus on my love for Claire. I’ve been truly amazed at how much my love for her has grown already. I’m sure anyone who’s ever been a decent parent can tell you how one day you’ll feel like you are so full of love for your children that you couldn’t possible love them any more, but then the next day comes and you find that you love them even more than before, and every day your love keeps growing. That in and of itself is an amazing experience, and I admit that I didn’t expect it happen so suddenly with Claire since I obviously haven’t given birth yet. But I’ve learned that I don’t have to wait for birth for my love for her to grow — it just grows on it’s own now. In my last post I mentioned that I was afraid I wouldn’t be able to handle seeing her without the top portion of her skull when she’s born. For the next few days, whenever I saw I little baby at the store or in a picture on Facebook, I’d imagine how they’d look with anencephaly and it was really hard on me. But it doesn’t feel like too much any more. I’ve seen more pictures of babies born with anenecephaly as I’ve continued to seek information this past week, and I can honestly say that it doesn’t bother me at all now. When I see those babies, I just feel love for them and that they are so precious. I know now that when I do get to hold Claire in my arms, my only feeling of sadness will be because we can’t keep her here on Earth with us, and that my love for her will be unbelievably strong.

I can’t change that we will have to bury our daughter. But I can try to plan the burial the best way possible. We won’t bury her here in Hawaii because we have no desire to stay here forever, but of course we don’t want to leave her behind when we do leave. Much of my family lives in Tennessee and they have a family burial plot there, so we’ve decided to take Claire there. It’s hard, because while we live in Hawaii (and that may be a while, we don’t really know for sure yet), we won’t be able to go visit Claire easily, but at least we know that her Nana and Poppy (my parents) can, as well any other relatives who wish to do so. We do plan on eventually ending up in Tennessee or somewhere thereabout, so we will be able to be close to her when we settle down permanently.

I can try to make some extra special touches to impart on Claire’s life and death. We plan on taking plenty of pictures at the hospital (a friend directed me to a wonderful organization called Now I Lay Me Down to Sleep that takes pictures for families whose babies are stillborn or pass away all too early). My older sister is an amazing knitter and has very willingly agreed to make some beautiful hats for Claire for the pictures and her funeral. I plan on making her burial gown and using some of the same fabric to make some fabric button earrings for me and (if the fabric works for this) a tie for my husband. I found a seller on etsy who makes some gorgeous finger print jewelry, and I’m going to get a necklace for me and something for Husband (he hasn’t decided what he wants yet) with Claire’s finger print or toe print on it, if possible (newborn finger prints aren’t very defined yet, so if the finger prints don’t work, she also makes things with hand prints that we can do instead).

My only regret now is that Duckie won’t get to grow up with her sister. Every night when I check on Duckie before I go to sleep, I tell her I’m so sorry that she still won’t have a sibling to play with. She’s such a fun and energetic little girl, and she does pretty well playing on her own, but I wish so desperately that she could go through her childhood with a sibling already.

My biggest fear right now is that Claire won’t survive to full-term. I don’t really know what to do about that, though. I know that chances are more likely that she will, but it’s also only a 1 in 1000 chance that she’d have anencephaly, so statistics don’t really provide much comfort. I suppose all I can do is trust in God; He’s gotten us this far.

It may not seem like much to some people, and it may seem like too much to others, but planning and thinking through these things has really been helping me process everything. I feel very fortunate that we got to find out now so that we have time to make things as special as possible without being rushed and trying to figure everything out while still in shock.

So I hope that by explaining how I handle grief and adversity and what I’m doing to cope, that helps everyone understand that I really am ok. I’m still sad, but I’m not floundering or directionless. And even though I am sad, I’m so grateful that we get to have Claire for a little while. I have so much love, comfort and direction. I really do feel like I’m doing the best I possible could. Thank you again to everyone who’s been so supportive of us during this time. You’re all awesome. 🙂

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My baby has… what??

So, this is going to hard to write, but I need to get it out. I’m usually a very private person, so I’ve never done anything like this before, but I know I have to share this story, all of it, even though it is so, so incredibly personal and hard. I don’t know if it will ever help anyone else, but I know I have to share this story.

My husband and I already have one amazing little girl (whom I’ll refer to as Duckie in this post) who is almost two years old. She really is just the best little toddler and we love her more than words could ever describe.

A little over a year ago we decided we wanted our family to continue to grow, but month after month I couldn’t get pregnant again. It was infuriating for me. It was so easy to conceive Duckie, that I just couldn’t understand why it should be any different now. Then in December I finally got a positive pregnancy test! We were so excited. And then a few weeks later I miscarried.

At this point, I was just so tired of trying to get pregnant just to be disappointed every month, but I couldn’t let myself give up just yet. So we kept trying, and a few months later I was pregnant again! This time I was a lot more cautious about getting excited. I kept telling myself that I would wait until the first doctor’s visit when we’d get an ultrasound before getting excited. So after being super sick for a couple of months, I finally got to go to the doctor. However, this was my first experience going to a military hospital (there wasn’t one where we were stationed when I was pregnant with Duckie, so I got to choose my doctor from any civilian doctor who accepted our insurance), and apparently you don’t get an ultrasound the first visit there like most civilian doctors give. But we did get to hear the heartbeat, so even though I still felt anxious, I told myself  I was being dumb and that everything was ok. I found out later from a friend that I could get an ultrasound earlier than the usual 20 week one if I signed up for a genetic counseling class. I thought about it, but then decided not to because there is no history of any kind of defects or retardation in our families. Because the purpose of the class was to inform you of the options if you find that you do have a child with a condition, which are basically to have the child anyway or to abort, and since I don’t believe in abortion, I felt like there was no need to go over the options anyway. And also because we’ve been operating with one car and having to figure out rides and someone to watch Duckie any more than was absolutely necessary seemed like such a pain (I know that may sound dumb, but I’m sure if you’ve ever been in that situation, you understand what a pain that can be).

So time went on, I started to feel our baby move every now and then. The midwives I’ve been seeing gave me some medicine so that I could actually eat without throwing everything up. I got to hear the heartbeat again. I started to feel like I didn’t need to worry anymore, this pregnancy was going to work. But I can’t deny that I still felt anxious, but I had no idea why. I tried to ignore that feeling, but I found myself not telling everyone yet, trying to hide my ever growing baby bump instead of showing it off. I kept putting off clearing out my craft room so I could turn it into the baby’s room. Instead of making a cute announcement to share on Facebook, I shared a vague picture of Duckie being silly while wearing a shirt that said “Big Sister.” For some reason I just couldn’t bring myself to make a big deal about it the way I wanted to.

And then last week I went in for a typical visit with the midwives and some genetic screening blood tests that they usually do at this point in pregnancy. And then on Friday the midwife I saw earlier that week called me to let me know that my lab results came back unusual and it looked like our baby had a 1 in 14 chance of having an open neural tube defect, and I needed to come in for an ultrasound right away so they could find out more.

So yesterday morning we all went to the hospital, bright and early. The sonographer said she’d see me first and then my husband and daughter could come in and see the baby, too. I was only on the table for a few minutes before the sonographer started to explain that I was there because something or other in my blood was too high and that could indicate a number of possible problems and that she was pretty sure she could see what was wrong with my baby. At that point all I really could hear was something is wrong with my baby. No more 1 in 14 chances. She said my baby has a condition called anencephaly, which means that the top of the skull never developed. I wasn’t even aware of opening my mouth, but I heard my voice, very small, say, “No skull?” And, of course, next I asked if there was anything that could be done, knowing that of course there isn’t. How could anything fix that? She shook her head and said she’d go get my husband and page the doctor so that we could have everything explained to us and our questions answered together.

I laid there on the table in a bit of shock while I waited for everyone to come. I had imagined all sorts of things when I got the call last weekend, but never anything like this. Just a few moments later my husband and daughter came in the room. I looked in my husband’s eyes as he walked in and very slightly shook my head. Then I didn’t look at him again until we got home, because I knew if I did I would just break down.

Then the doctor came in and briefly explained what was wrong with our little girl (at this point we could tell the sex). The sonographer was still taking images of our baby, and the doctor pointed at the screen to show us our little girl’s head and how the skull ended just above her eyes. I was thinking I don’t need a doctor to show me that! Even I, who mostly just see smudges when I look at ultrasounds, can see clearly that something is wrong. I wasn’t aware that I was crying until the sonographer handed me a tissue. And then she took one for herself because she was crying, too.

The doctor was really great, very comforting and gentle, but still giving us the information we needed. He assured us that nothing we did could have caused this. Not much is known about why it happens. We do know that taking folic acid before becoming pregnant (which I did) and immediately upon conception (did that, too) reduces your chances of it happening. He said he’d call me the next day to go over our options and asked if we wanted them to leave us alone for a few minutes to talk. I quickly said no, knowing that I wouldn’t be able to keep it together if they did. I looked at the doctor and told him that I didn’t believe in abortion and so our only option was to continue with the pregnancy, right? He said yes and let us know that while most, but not all, anencelaphic babies make it full term, they always are stillborn or pass away shortly after birth. He was incredibly supportive of our decision to continue the pregnancy, and told us that in his experience that’s often the best option for the parents, even though it’s much harder (it allows them some time, however small, with their child, and they can go through grief and healing more effectively, at least). He recommended that we take this time to bond with our little girl, and that I could come get ultrasounds every 2 weeks if I wanted, even.

There wasn’t really anything left to do then, so the doctor told me I could call him any time at all and left to go get his card with his office and cell phone number on it. Then Duckie had to use the bathroom, so my husband rushed her off before any accidents could happen. I got up to follow them out and the sonographer gave me some pictures of our little girl and gave me a hug. I’m not a touchy feely person, and while hugs are nice, I don’t usually find them extra comforting or something I especially want very often. But this short hug was exactly what I needed right at that moment and I honestly don’t think I’ve ever appreciated a hug more.

We made it home and the rest of the day was just pretty normal, except that my husband stayed home from work. We watched a movie with Duckie, did some grocery shopping, even went to the Cheesecake Factory for half-off cheesecake since it was National Cheesecake Day and it’s one of our traditions. Of course nothing felt normal, but it was helpful to act like life goes on, because it does. We weren’t ignoring anything, quite the opposite, actually. We read some articles about anencephaly and posts by other parents who have been there. We shared our thoughts and fears and frustrations with each other. We cried. We loved on our little Duckie girl like never before (which if you have any idea how much we love her, is saying something). We named our baby Claire and decided to do our best to enjoy the time we have with her now.

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I’ve been feeling so many mixtures of emotion since yesterday morning. Shock and sadness. A little bit of anger, but surprisingly not very much and not long lasting. Acceptance. More sadness. Gratitude. Gratitude that we found out now. Gratitude that we didn’t find out earlier, because 5 months knowing our little Claire is going to die is enough. Gratitude that our sonographer and especially the doctor were so, so caring and supportive (from what I read when we got home, a lot of doctors aren’t so supportive when the parents refuse to terminate their baby). Gratitude that we have the insurance coverage that we need. And then guilt, because it must be indecent to be grateful for anything at a time like this. More acceptance. More sadness. Guilt again because I looked at pictures of other babies born with anencephaly and I don’t know if I can handle seeing my baby girl like that. Love, because I know when the time comes I’ll treasure every moment, no matter what she looks like. More sadness. Dread, because I know I’m going to have to filter so many innocent comments from acquaintances and strangers as it becomes more and more obvious that I’m pregnant. More acceptance. More sadness.

I know people want to help us and I also know that they don’t know how. Who could? I’ve given some thought to what I do need and what I don’t need. I don’t know if this applies to other parents of babies with anencephaly. I don’t know if it’s even what my husband needs from other people. But for me, this is what I need and what I don’t need.

I don’t need pity. I do need love.

I don’t need you to explain why you think this happened or what God has in store. I may agree with you, but I’ve already thought through all of those things and don’t need to go over that again with anyone but my husband. I do need you to know that if you have any sincere questions, you can ask. I don’t mean things about the condition — you can google that. I mean if you really want to know and care how I’m holding up, or how is Claire growing, or how often are we going to have ultrasounds, or how are we going to try to make her birth special, or whatever — you can ask. However, please don’t try to get me to have a big emotional conversation with you. Talking isn’t really how I process things; it just makes me feel awkward when people try to make me open up, about anything, especially something personal. If I do want to talk about it, I’ll go to someone I trust and initiate the conversation- you don’t have to worry about that.

I don’t need you to comment on the “badness” of our situation (saying it’s all so horrible our awful our any other such synonym). I know people do that when they’re trying to be understanding, but being extra negative doesn’t help anyone and does not show love. I do need you to understand that our situation is sad; it is hard. But I will never say it’s horrible, because, despite the pain, I am grateful for my baby girl and she is not horrible.

I don’t need you to pretend that I’m not pregnant or that Claire isn’t going to die. I do need you to treat me normally, or as normally as you can.  I do need you to continue to be my friend. I do need you to ignore that my eyes are probably going to be red off and on for the next 5 or 6 months.

I don’t need anyone telling me why they think abortion is ok. If you do that, you’re dismissing the reality of my daughter and the real love I have for her, and, regardless of your intent, I will find that offensive. If you want to discuss our viewpoints sometime in a civil manner then I’d be happy to do so, but right now is NOT the time. I do need you to understand that I have already made my decision and feel very strongly about it. I’m not going to suddenly change my mind, no matter what you say.

If you’re pregnant, I don’t need you to avoid me or avoid talking about and being excited for your new babies. I do need you to let me join in your joy and know that I don’t resent you at all and am genuinely happy for you. If I do need a moment to myself, trust that I’ll excuse myself and take it on my own.

If you have a miscarriage or some other problem with your baby, I don’t need you to feel like you can’t be upset about it or talk about it around or with me. I do need you to know that I understand you are in pain, too, and I’m not judging you for being upset when I’m hurting, too. I do need you to know that I’m still your friend. Our suffering is not a competition and doesn’t lessen just because someone else is suffering, too.

I don’t need surprise visits or phone calls (unless you’re feeling spiritually prompted to do so). While I’m not shy at all, unexpected social interaction often makes me feel stressed, so I don’t enjoy it as much, and with so many emotions going on now, it’d only be worse than usual.  Apparently it’s an introvert thing? I do appreciate visits when you’ve given me the heads up to see if I’m up for it. Texts are always welcome, but don’t take it personally if I don’t get back to you right away.

Unless you’ve personally had a child with anencephaly, a stillbirth, or the death of your own child, I don’t need you to say you know how it feels or give me advice on how to make the best of it. If you have experienced any of those things, I would like to hear your thoughts.

That’s all I can think of now. I don’t know if anyone will read this. I don’t know if I’ll keep coming back and updating our journey through all of this on this blog. But I do feel like a little weight has lifted as I’ve written down my experience. I feel like I can breathe a little easier now.

Thanks to anyone who made it through this whole post.