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. 🙂


2 thoughts on “How We’ve Been

  1. Will you give a memento to Duckie? I think that would be sweet. I’m glad you’re doing so well. Thinking through and planning things helps me too. I pray you will have as much time as possible with Claire!

    • Yeah, I want to do something for her, but haven’t figured out what yet. I’m going to make a special blanket for Claire, too, and I was thinking of maybe using some of that fabric to make a pillow or animal for Duckie, but I don’t know yet.

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