I love you, Claire! 💙💜💙
Claire’s new Christmas ornament this year
One year ago today our baby Claire blessed us with her sweet spirit before she returned to heaven again. It’s been a pretty good year, all things considered. I think of Claire daily, and we still make sure to include Sister Bear when we do bedtime with Duckie. Early this year I got pregnant again, and I felt pretty confident that this baby would be our rainbow, but I’d be lying if I said I wasn’t anxious. When we had the first ultrasound and I saw our baby’s beautiful little head, I couldn’t help but cry a little with relief.
Claire’s angel ornament, Koala’s Christmas dress, and Duckie’s Christmas dress
All of my babies’ footprints from their first Christmas season 🙂
Today marks one month since Claire’s birth. It feels like so much has happened since then that it can’t possibly have been only a month. As I mentioned in my last post, the timing of everything really was for the best, not only for myself and Claire (physically), but also because it allowed us to be with more family since we got to be in Tennessee over the holidays when everyone else was visiting home, too. That has truly been such a blessing and comfort.
I don’t think I mentioned it in my last post, but when Claire was born, I could distinctly feel her unique spirit. There are no words that I know of to describe how it felt, so I won’t try to explain it. But I can promise you that it was very real. At one point after her birth, my husband had been holding her and then gave her back to me to hold, and as soon as she was in my arms again I couldn’t feel her spirit any more and I knew she was gone. The reason I’m writing about that experience now is because there have been several distinct moments since Claire died that I have felt her presence with me. Not very many or for very long, but I know that her spirit lives and that she knows how much I love her. What more could I ask for in this situation?
For the first little while after Claire’s death, I would feel almost angry when people would say, “I’m sorry for your loss.” I know that they just wanted to express sympathy and quite frankly didn’t know what else to say (and who could blame them?), so of course I didn’t really get upset with anyone. But that phrase would just irk me. Referring to Claire’s separation from us as a “loss” just felt so incredibly inadequate that it was almost insulting. And I never felt like she was lost — everything we are is contained in our spirits and our bodies, and I knew where her spirit and body were. She was never “lost.” The phrase doesn’t really bother me any more, but I still don’t much care for it, honestly.
Before Claire’s funeral, we went to the funeral home and got to see Claire one last time. We tucked her in with the blanket I made for her and put the bracelet my husband made for her on her wrist. Duckie gave her her sister bear (we actually didn’t try to have her do that, Duckie just saw that we had Claire’s bear and wanted to make sure that Claire had it, so she picked it up and gave it to her).
The bracelet my husband made for Claire. It says, “I am loved.”
The funeral was beautiful. We ended up deciding to have it just be a family affair. It was a really nice, sunny day and not too cold considering it was December. My father and Nana shared some thoughts that were touching and instead of singing (who can even sing at funerals?), we played a beautiful song that my husband came across while we were planning the funeral. After the service, we all went to my Nana’s and Papa’s house and had dinner and just enjoyed time together as a family.
Display I made for Claire’s funeral and Claire’s casket.
I’ve been so touched by the love and prayers that have been extended to my family. I’ve heard people say that they’ve felt the prayers others have said for them, and I honestly never knew what that really meant. But now I definitely do. I knew people were praying for us ever since we first found out that Claire had anencephaly, but I never really felt those prayers until after her birth and death. But I definitely felt them then, so strong, along with so much love and comfort from Heaven.
It’s been so wonderful to be in Tennessee with my family these last few weeks. We’ve been able to play and laugh and just feel normal. Of course things will never be “back to normal,” but we have a new “normal” now that includes our love for Claire. I feel like we’ve been so blessed and taken care of. And even though it’s only been a month, I definitely feel like we’re doing pretty well. I still have random moments where I just feel so sad, but by and large I do feel happy and peaceful.
When we first found out about Claire’s condition, I read some other people’s blogs who had similar situations, and some people said that through their experience they realized who really cared and who didn’t. I remember thinking that that seemed odd to me. Like, I already know who really cares about me, right? Well, I admit I was wrong. I wasn’t really surprised at all by the people who didn’t call/write/whatever, but I was really overwhelmed with how many more people than I expected did show their love and concern for us. Some people who I hadn’t talked to in several years contacted us just to let us know they were thinking about us. In one of my past posts, I’ve shared how I often feel discouraged with how bad the world is and all the people who choose to do bad things; but as weird as it may be, this experience has actually restored some of my faith in humanity simply because so many of you have clearly shown that you care about other people. So thank you, thank you to everyone who truly cares about more than themselves. You have no idea what your messages/cards/prayers/flowers/calls/etc. have meant to me.
I could make a whole other post about what I wish I’d known before giving birth to Claire or about planning a funeral or just about random other things I’ve learned throughout this experience, but I’m not going to do that simply because it feels too disjointed and likely uninteresting to most people. But if anyone reading this is ever in a similar situation (or is just really curious), feel free to contact me and I’d be happy to give you the tips I’d have liked to have.
I can’t believe how much has happened in just the past couple days. Wednesday night around midnight I started having contractions. They weren’t super intense, more like moderate to strong menstrual cramps, and they only lasted for about 20 seconds at a time, but they were happening every 3 or 4 minutes. I was mostly just confused (and tired, since I couldn’t really sleep through this) because they started off so regular. And also because I was only 35 weeks and 5 days pregnant! We’d been told several times that babies with anencaphaly often don’t trigger birth on time, if at all, so we should expect to deliver late and possibly be induced. I went downstairs and got all cozy on our couch for the night since I was a lot more comfortable sitting up. I thought about calling the midwife on duty at the hospital to see if I should be concerned, but I actually had an ultrasound scheduled for the morning (and they always have us talk with the doctor when we go in for an ultrasound, just in case we have questions about anything), so I figured I’d just wait for that since the contractions weren’t really strong yet anyway.
By about 6:00, the contractions were slowing down a tad and were getting a little less painful, so I thought it was probably just a false alarm. But I went ahead and packed my hospital bag, just in case. A few hours later we went in for our ultrasound and while Claire looked like she was doing well, we found out that my amniotic fluid levels were really high (they were at 30… whatever units they measure it in…. they don’t usually worry too much until it gets over 25, and later on one of the nurses in Labor and Delivery told us that most of the women they see are well under 20). The doctor said that that and the fact that I’d been having contractions made him think that Claire would be coming very soon, within a day or two.
I had already made pretty much everything for Claire that I wanted to, but I still had an idea for a painting I wanted to get done before she came so that we could have it out with a little memorial display at her funeral. So, after we got home, put Duckie down for her nap, and my husband left for work, I started painting like crazy. I had to stop a couple times to help Duckie with things and to do an errand, but I did manage to finish it by that evening. During all this, my contractions had restarted, were still regular, and were getting stronger. I was able to block them out during most of the time I was painting, but the closer I got to finishing, the more I had to actually stop painting to let each contraction pass. By the time I was done, my husband was going to be home fairly soon (he usually has to stay much later, but this particular day he got off early because he had to run a special PT session), so I decided to just go take a shower and get our bags ready to go to the hospital. Of course my husband would have come home sooner if I’d called, but I didn’t think it’d make that big of a difference. Plus, even though I was definitely having regular, real contractions, part of me was still in denial that I could really be in labor so early.
So once Husband got home, we woke up Duckie, packed up the car, and headed to the hospital. We got to Labor and Delivery, checked in, and they took me back so the midwife could check if I was dilating and really in labor. Well, it turns out I was definitely in labor (obviously) and already dilated to 6 or 7 centimeters! The midwife and nurses were all really surprised that I was so far along because I was handling the contractions so well. In hindsight, I think the fact that I was somewhat in denial helped me cope with the pain because I could tell myself it wasn’t really labor so that pain couldn’t really be as bad as I was thinking. Of course that’s ridiculous reasoning, but the pride in me kept me from showing too much of my pain since I wasn’t convinced it was real labor (note to my future self for any future pregnancies: if you’re in pain, accept you’re in real pain; it doesn’t matter if it’s “real” labor or not). Around this time, my legs started shaking after each contraction since they were getting even stronger. I knew beforehand that I wanted an epidural, and I was especially wanting one by this point, so I asked if I could get one as soon as possible. For some reason it took and hour and a half and many more contractions before I could get it, but it was the most fantastic thing once I did.
At this point it was a little after midnight on Thursday. A friend from our church had come to watch Duckie for us at the hospital. Her husband is actually one of the OB doctors at this hospital, so she knew her way around there really well, and all the nurses there said they just loved her and that she always brought them tasty food. 🙂 It was really great that she was able and so willing to come help us there and that it was a place that she was familiar with so that helped Duckie be comfortable there, too. We really wanted Duckie to come to the hospital with us so that she could meet Claire, too, so we’re very grateful that that worked out so well.
A couple hours later, I was ready to start pushing. My water still hadn’t broken, and the midwife and nurse were getting all decked out in special coverings and goggles in case there was a huge splash since I had so much fluid. We were joking with them that if there wasn’t a big splash, they might be disappointed since they were so prepared for one. Well, there was certainly no disappointment — it was like a gigantic water balloon exploded, ha ha. We all actually had a good little laugh about it, and I remember thinking how odd it was to be laughing at something when I’m in the middle of giving birth and when we knew we’d be so sad later. But it also felt really good to have a little funny moment to laugh at at that moment.
A few minutes later, at 2:58 AM, Claire was born and put into my arms. She weighed 3 pounds and 10 ounces, and was 14 inches long. My first thought while holding her was she’s so perfect. I couldn’t believe I ever thought, even for just a moment, that I’d have a hard time seeing her in her condition. Babies with anencephaly can’t usually move around or make sounds or anything once they’re born, and this was the case with Claire. I remember thinking how odd it was to see her holding still since she was always (and I do mean always) so active in the womb. I could literally feel her moving around inside me up until she was actually born. The sweetest thing was being able to feel her breathing ever so slightly when I had my hand on her back. It wasn’t long before I couldn’t feel it anymore (she was still alive, but it was too faint to feel anymore). I’m really grateful for that extra sweet experience.
She stayed with us for a couple more hours before going back to Heaven. The nurses took some pictures for us, and a photographer from Now I Lay Me Down To Sleep came and took lots of pictures for us. The Labor and Delivery team at the hospital here really went the extra mile to make everything as special as possible for us. Whenever a patient has a baby who doesn’t survive, they make this special purple box for the family that is filled with little memories (like extra footprints, a dvd with the pictures they took, your hospital bracelets, a card with personal notes from all the staff that night, a little bracelet they made with the baby’s name on it, and any other little things that you may find sweet or comforting). They also have sweet little homemade hats, leis, and blankets that have been donated for the babies.
We woke Duckie up again so she could come meet Claire, and even though it was middle of the night and second time we woke her up, she was so excited to meet her little sister. It was so precious; she just kept beaming at Claire and saying, “Baby Claire!” We showed her Claire’s little tiny toes and fingers, and Duckie would just laugh at how tiny and precious she was. She gave her a hug and kiss before going back to bed.
We still held on to Claire for a little longer after she passed away and just continued to take her sweetness in. Around 7:20 or 7:30 the nurse came to take her to the morgue. I was doing pretty well up until that point, but then I just couldn’t stop crying. Our nurse (who was really great the whole time, by the way) assured me that we could keep her longer if we wanted some more time, but I knew it was just going to get harder and harder with every passing moment, so my husband and I said our last goodbyes to Claire and let her go. That was so, so hard. I think saying goodbye at her funeral will be even harder, though, since we won’t have another chance to hold her again in this life.
Even with how sad I am and how incredibly much I miss her already, I feel so grateful for how well everything went. It was all really the very best I could have hoped for. I’m so glad that Claire was able to come on her own. I really, really didn’t want to be induced since that would make the birth harder on Claire and lessen her chances of a live birth. I’m so grateful that she was born alive and stayed with us for a couple hours; I was really afraid that we wouldn’t get any time with her at all.
I’m actually very grateful that she did come early. I only gained 17 pounds with Claire, but I have been so incredibly uncomfortable (to put it mildly). Just earlier this week I was still throwing up, even after taking medicine; and even before the contractions started, I rarely slept for more than 30 to 40 minutes at a time because my stomach hurt so much (as in the muscles hurt, not a stomach ache hurt) and felt so stretched.
The actual birth went very smoothly and I only had one teeny, tiny tear (giving birth to Duckie was a whole different story, and the recovery was really painful and long, so I admit I was afraid of that happening again). I’m recovering amazingly well so far — it was just yesterday that I gave birth and already I’m barely even bleeding. I’ve only needed one ibuprofen since giving birth and that’s it for pain killers. In fact, the most sore I am is just from where the epidural and my IV were in me, and both of those areas just feel a little bit bruised. I’m amazed and so grateful that I’m doing so well physically.
After we got home from the hospital, I went to take a nap since I’d only gotten about an hour, maybe two, of sleep in the past 48 hours. When I woke up, Duckie was home (our friend had taken her back to her home after she got to meet Claire) and up from her nap, too. She came to the bedroom to see me and crawled up on the bed next to me. The first thing she said to me was, “Baby Claire?” while looking around. Then she moved the blanket to look at my stomach, I guess to check if Claire was back in my tummy, before asking, “Baby Claire go?” (Meaning, “Where did Baby Claire go?”) I explained to her that Claire had to go be with Jesus, which she accepted but still seemed confused as to why she couldn’t be here with us and with Jesus at the same time. Every so often she comes up to me and asks where Claire is. I think it will be a while before she understands that Claire isn’t coming back to us. It’s so sad because Duckie is such a good big sister and really does love Claire and want to be with her.
We’ve been figuring out our travel plans and getting everything together. We’ll be heading out to Tennessee next week for the funeral and stay there through the holidays. Then we’ll visit my husband’s family in California before heading back to Hawaii. I’m really glad that we get to spend the holidays with my family. Two of my three sisters will be there for a bit, too, so that will be good.
I know we’ve been having a lot of people praying for us, and we’re all very appreciative of your support. We’ve definitely been able to see God’s hand helping us through everything.
As promised, here are some pictures of the things I made for Claire. I still have to make my fabric button earrings using the extra fabric from her burial dress, but everything else has been ready to go for a while now. We’re also getting some jewelry with her hand and foot prints on it, but that will take a while to be made and get here.
Claire’s burial dress.
The hat my sister made.
Tie for my husband made from the same fabric as Claire’s burial dress. I added some of the flowers to the back so he could have those with him, too.
*Update* I made the earrings yesterday, so here they are.
The painting I rushed to finish. “Come Into My Arms To Stay”
(No one may use this picture, or any others found here for that matter, without my permission>)
Our sweet little angel Claire. ❤
By the way, this article is a really good explanation of how to treat people who are going through something hard. I highly recommend it to everyone.
I wasn’t planning on sharing this post; I was just getting my thoughts out for my own benefit, but after writing it down I kept feeling like I should. I have no idea why, it’s not a particularly uplifting post, but maybe it’ll help someone else someday. Hopefully.
Tonight as I was tucking Duckie into bed (Husband usually does bedtime, but he’s working nights right now), I sang “Angel Lullaby” (from the play “My Turn On Earth” not the Reba McEntire one) to her. Duckie likes to repeat back things we say lately, and she really liked saying “angel friends” whenever I’d sing that part. I started thinking about how maybe Claire will be an angel friend for Duckie as she grows up; even though that’s a nice thought, I still started to tear up while singing.
I’m so indescribably sad that we won’t get to keep our baby Claire. But I know that it’ll be so much for better for her to not have to stay in this world that seems to be growing so much worse all the time. I feel so sorry and sad for Duckie because now she’ll never have a sibling close to her in age, and I’ve always wanted that for our children. I know it’s not the same, but maybe Claire will be with Ellie as she grows older and give her sisterly comfort when needed.
I’m really doing pretty well. I do often feel happiness and peace. It’s usually no problem to go about life as normal; but I’ve come to realize that no matter what there is this constant sadness in my heart, no matter how good of a day it is. I wonder if this feeling will ever lift or if it’s just mine to keep for the rest of my life. It’s almost like a physical pain — I feel like if I went to a doctor and got an x-ray, they could pinpoint the sadness in me it’s so strong.
Most days still go by pretty normally, but every now and then the sadness and pain is too much, and after I put Duckie to bed, I just go into my room and cry and cry and cry because what else can I do? Tonight is one of those nights.
A little over a week ago we received a surprise in the mail from my fabulous older sister. She had mentioned that she sent us a small something, so to keep an eye out for it in the mail. But it was definitely more than a “small something”! A great big box showed up at our door and inside we found an incredibly beautiful framed painting! Well, it’s actually a very nicely done giclee print of a painting, but still. 🙂
Husband and I were in awe of how lovely it is and how, even at first look, it seemed so perfect for our situation. And then I found out the title: She Will Find What Is Lost. It felt like this work of art must have been created just for me! Duckie was interested as soon as she saw a new box for her to play with, but then she noticed the painting and wanted to get a closer look. She pointed at the woman in the picture and stated that she was a mommy. She understands the concept of boys and girls, but still mostly assigns gender by calling people/animals a mommy or daddy, so I usually have to say that so and so isn’t a mommy/daddy, but maybe someday they will be, or that we don’t know if they’re a mommy/daddy. But this time I just told her that, yes, I do think that woman is a mommy. The artist, Brian Kershisnik, has actually never said much about the woman other than she’s supposed to represent everyone as an individual, and for me, that means that she is a mother.
I continued to talk about the painting with Duckie, saying that all the mommy’s angel friends where helping her. And then I noticed two angel babies in the painting and started to cry a little.
As I mentioned in my last post, I have been feeling lots of love and comfort lately. But most of that I’ve felt coming from friends and family here on Earth and from God, but I honestly didn’t even think about the possibility that there are sweet spirits who have already left this Earth who are sending love and comfort, too. But of course there are. What’s heaven for if not to help others? And seeing those two angel babies reminded me that our little Claire isn’t the only angel baby out there, and she’ll have other little friends waiting for her when she goes back to heaven.
A few days later, one of my aunts sent me this quote from Joseph Smith that she came across in a recent Ensign article: “The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again.”
Now, I was already familiar with this idea, and I do feel very much that Claire is very special and that’s at least part of why she doesn’t have to spend any more time on Earth. But this quote really hit home for me. Anyone who knows me pretty well, probably knows that I do often feel extremely discouraged about the state of the world. There is just so much evil and just plain idiocy that it feels like too much. How can so many people in the world all choose to commit atrocities? How can we still have killings and sexism and child prostitution and all sorts of abuse and it goes on and on? How are horrible choices not the very rare exception instead of every day occurrences? And how can I send my sweet babies out into this world, knowing about all the evil out there? Of course I try to fight the bad things out there and try to teach Duckie how to analyze and reject bad things for herself, but it never feels like enough.
So this simple reminder that my little Claire won’t have to deal with all the evils in this world is an incredible comfort to me. I still wish I could keep her with me, but I can rejoice in the knowledge that she won’t ever have to suffer because of other people’s evil choices.
Last week I had another ultrasound and appointment with the midwives. Claire is growing well. They can’t give us an approximate size/weight because the computer needs the head measurements to compute that, but the sonographer said that everything looked like it was developing well and right on track. I was grateful to have the same sonographer as last time, since she was so good. I had a few questions I wanted to ask the doctor, and I was really hoping to talk to Dr. Gloeb (the one we saw last time) because he was just so, so good and supportive. But apparently he wasn’t the doctor working with the sonographers that day, so I was supposed to see a different doctor. I don’t know anything about the other doctors who work there, so they may be just as good, but I was really worried that I’d have to talk to one who wasn’t so understanding (and honestly if they were insensitive or just plain rude, I was prepared to tell them that I didn’t want to talk to them and would come back later to talk to Dr. Gloeb). As it turns out, the assigned doctor had just gone in to talk with another patient and was going to be a while, but my sonographer had run into Dr. Gloeb while she was out after finding out that the other doctor wouldn’t be available for a while, and he agreed to come talk to me. That may seem small, but it was a HUGE comfort to me to be able to talk to him about the few questions I had. And, as before, he was very understanding and encouraging.
After the ultrasound, I went a couple floors down to my midwife appointment — the first after finding out that Claire has anencephaly. I was a little worried about how they’d treat me, but not too much since it was just a short appointment after all. It turns out I didn’t need to be even slightly worried. The midwife I saw was very caring and gentle without being pitying. She was interested in how we were handling everything. I talked with her about our plans and how we’re doing. She said she’d let the other midwives know everything, so I wouldn’t need to worry about anyone there not knowing and saying anything that could be hurtful. I’ve only met a handful of the other midwives so far, but all of them have been very good. One of them called me a few days ago to tell me that she worked with a patient recently who had a similar situation and handled it with the same attitude that we’ve been, and she even has a little toddler close to Duckie’s age. She had contacted that patient to ask her if she could give me her information in case we wanted to connect, and she (the previous patient) was very willing. I felt so touched by this midwife going out of her way to try to help me in any way possible. I’m not usually big on contacting people I don’t know, especially about something so personal and sensitive, but the midwife mentioned that she had also documented her story in a blog. I didn’t really have any issues that I felt the need to talk through with anyone, but I did want to contact this woman and read her blog. We’ve emailed a bit and she’s been very encouraging. She’s not even saying anything I don’t know, but it’s just different when it’s coming from someone else who *knows* what it’s like.
When we first moved here, I was really unhappy with having to use military health facilities instead of being able to choose our own doctors. The several check ups I’d taken Duckie to just made me more unsatisfied with the system (the doctor was ok, but Duckie’s last doctor in California was amazing, so my standards have been set pretty high). Then I got pregnant, and I hadn’t heard anything positive about being pregnant and giving birth at the army hospital here. That is until one of my friends mentioned the midwives there, so I opted to see them instead. Now I am so, so grateful that I get to go to the army hospital. The midwives are awesome. And there is no way we’d be able to have extra ultrasounds (certainly not so many) and not be charged for it at a civilian location. Plus, it’s really close to where we live and all of my appointments — seeing the midwives, or having ultrasounds, or getting lab work done, etc. — are all in the same building, so I don’t have to run all over town for every little thing. Isn’t it funny how sometimes the things we think are the worst for us turn out to be just what we need?
You may have noticed that I titled this post “Silver Linings.” All these things I’ve written about are just some of the silver linings in our storm clouds. I keep finding more and more good in a situation that at first seems like it shouldn’t have any good at all. And that in and of itself is another silver lining, isn’t it?
Oh, and one more quick blessing: did you know that you can get at home sonogram machines for only $45?! The midwife I told was shocked, ha ha. So now I can listen to baby Claire’s heart beat whenever I want. 🙂
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. 🙂