What I Wish Everyone Knew

Let me start by saying that most people don't have any reason to know what it's like inside the mind of a parent that is going through something like this. I recognize that, and do my best to always give people the benefit of the doubt. Most people are well-meaning, genuinely concerned and/or just don't know what to say but feel that they need to say something. It's tough, being on the other end of that conversation - not knowing how to react, what to say, or if it's someone you love going through this, not knowing how to help (but desperately wanting to).

I have already learned so much through this experience, and it has generated huge shifts in my perspective. One thing that I'll probably never do again is make the assumption that a pregnant stranger is having a perfectly normal, happy, healthy pregnancy. That's what everyone assumes when they look at me, and it's why they smile and congratulate me, assume that I'd be thrilled to share some of the exciting details (when I'm due, the sex of the baby, if she has any brothers or sisters at home, etc), and make conjectures about my future (how busy I'm going to be, how much life changes with two, how fun little girls are, etc). Generally, it's fine. Most of the time I'm able to smile and nod and go along with it. After all, I'm just answering simple questions. She is a girl. She is due on October 10th. I do have a son at home who is excited about his baby sister. But if these strangers only knew the reality, I know they'd feel awful. I know that the guy on the street the other day who warmly smiled and chuckled in response when I told him it was a girl, and replied "Ohhhh my, try not to spoil her too much - it's hard!" would hate to know that I began to cry as soon as I turned the corner toward the parking garage. I would give just about anything to have the opportunity to spoil her rotten. I know that the OR nurse that was chatting me up about her the other day would feel terrible if she knew just how empty my arms would soon feel, after the entire conversation we had about how full my hands would be with two small children during medical school.

I think I will forever tread more lightly in engaging pregnant strangers in conversations regarding their pregnancies. Even if the baby and mom are healthy, perhaps there are other unfortunate circumstances that make it a less-than-ideal situation, and mom isn't exactly beaming with joy. I'm just realizing how intensely personal these pregnancy-related issues are, and how invasive people's questioning can feel when things aren't going according to plan. Most medical conditions aren't so readily apparent as to attract the attention of strangers, and if they are, most strangers aren't so eager to engage one in conversation about them, yet when it comes to pregnancy everyone wants to chime in. Again, I remind myself that people are just trying to share in my joy and have the best of intentions, but it's still hard.

All that said, if you're not a stranger to the person going through this difficult thing, there are few things that you should keep in mind...

• Odds are, she wants to talk about it. With strangers it's awkward - you don't want to start a 15-minute conversation explaining the details of your situation. But when it comes to the people around you who are aware of what you're going through, it's a completely different ball game. For me, it's a relief to be in the presence of someone who knows, and be able to talk about it if I need to. At the same time, I think that the people around me who know are often afraid to bring it up for fear of upsetting me. Also at the same time, I'm afraid to bring it up too often. I don't want to be that guy. People could do me a great service just by asking how I'm doing with things, and opening the door so that I feel like I can talk about it (and many people do!). If I don't want to talk, I'll give you the short answer, but at least you've given me the opportunity. Let me reassure you, even if I wasn't talking about it or looking sad at the time, you didn't "bring it up" by mentioning it. It's on my mind every moment of every day - you couldn't possibly make me any more aware of it. You aren't going to send me into an emotional fit, you're only going to do me the great favor of giving me an outlet to express some of what's "on my mind" at that moment. I might cry, but that's ok - you didn't do anything wrong. My baby is dying, and I'm just going to cry. Sometimes it feels really good to cry.
• Talking about the baby is wonderful. Along the same lines as the previous bullet point, you're not upsetting me by mentioning my baby or saying her name. Quite the contrary, in fact, you are making my heart smile (even if my stupid eyes are crying). When a woman makes the choice to continue a pregnancy like this, you can know one thing for certain - she values this baby tremendously. She doesn't want to forget that there's a baby in there or pretend that she's not pregnant or avoid the subject. Like any other expectant mother, she loves her baby. Unlike other expectant mothers, though, she isn't sure that other people value her baby. In fact, many people make it relatively clear to her that they don't, based on their comments and confusion regarding the "point" of this "futile" endeavor. Asking about her baby, if she's feeling movement, if there are any updates on the baby's health, how older siblings are interacting with him/her... these are all life-affirming questions and give the mother a sense of normalcy in an otherwise completely foreign situation. And it's not that any of these questions are "fake" or not truly meaningful - you're asking this mother to share aspects of her experience of her baby, in a situation where the pregnancy is likely the only experience she'll ever have of her baby. It's like asking the mother of a 5-month-old whether he/she has rolled over yet. You're taking an interest, and showing this mother that you understand that her baby is real, alive, valuable and important. Oh, and if the baby has a name, don't hesitate to use it! They named him or her for a reason ;-)
• Just don't bring up termination. Don't. A family that has recently received this kind of news is in one of three places. 1) They have decided to terminate. In this case, odds are they'll mention it on their own as they explain the situation and where it's headed. If they don't, it's likely that that's because they don't want to share that information (and so they don't want you to ask). 2) They have decided not to terminate. In this case, odds are that your bringing it up will cut like a hot knife and inspire some seriously negative emotions. To someone who is choosing to continue the pregnancy, that question feels an awful lot like a judgement regarding the value (or lack thereof) that you place on their child's life, and that is not the sentiment you want to convey to the grief-stricken parent of a dying child. Take it from me. 3) They haven't decided. Your bringing it up may feel to them like an affirmation that that's what should happen, what is expected, or what you would do. Do you really want to be a part of their decision-making process? They are also probably experiencing tremendous inner turmoil over the decision, and are therefore a lot less likely to want to talk about it unless you are an extremely close friend or family member. Bottom line: Just don't go there. If they bring it up, great. You'll have your answer.
• Don't talk about miracles or "modern medicine". Everyone wants to hope. It's only natural. And people assume that the possibility of a miracle would be reassuring to a parent in this situation. Even better, if you know someone who knows someone whose baby did ok in a sort of similar situation, you'd think that would be reassuring. But when the child's basic composition is terminally flawed throughout every cell of the body, as Grace's is, there is no "cure" or "fix". Even if we were able to surgically fix every structural defect she has, it wouldn't fix the fact that her entire being is dysfunctional at the cellular level. The fact that a handful of children out of 100 with this condition survive to live birth is somewhat reassuring to me - maybe Gracie will get there - but the fact that one triploid child in the history of the medical literature lived to 10 months old is not. I bet those 10 months were pretty ugly, and it happened once. There are a few others who lived to be a few weeks or months old, but I'm talking literally a handful of kids EVER. And to be honest, I'm not sure that's what I want for my girl. I don't want her to live in the NICU for a few weeks with a bunch of lines and tubes and machines sustaining her, only to pass away in a plastic box. If she is going to live for any period of time out here in the world, I want it to be in the arms of the people who love her, for however long she is able to survive. Our miracle would be a live birth, followed by a peaceful passing in our arms. Or, if it ends up being a stillbirth, our miracle would be a peaceful and smooth delivery that allows us ample time to bond with her. Some who don't quite grasp the definitive nature of this diagnosis might think us callous or unfaithful for thinking this way, but believe me - we're more than willing to accept a true miracle. If God wants to make this all magically go away, I am ALL for it. But if that's His will, He won't need lines and tubes and machines to do it. In the meantime, we are willing to accept that this fate that we're preparing for is His will, and willing to accept that our role in all of this is to love her, care for her, protect her, treat her with respect and dignity, and make the tough choices that parents sometimes have to make for their children. That is what God has called us to.

Again, so much of this comes from the right place. I don't feel that anyone has been intentionally insensitive or hurtful to me throughout this process, and I certainly don't feel angry with anyone who cares about us and has perhaps said the "wrong" thing at some point. No one knows how to address a situation like this - it's so unfamiliar, and it's impossible to know how your questions or comments may be perceived. Just know that no matter what you say or do, if it comes from a place of genuine concern, that will come across. Saying something is always better than saying nothing, which only serves to isolate that grieving person further. When all else fails and you're struggling, remember that it's ok to ask. None of us (including the bereaved parents) know what the hell we're doing in this scenario, so no one is going to hold it against you if you just need to come out and ask "Is it ok to ask a question about your baby?" or "Do you feel up to talking about the situation?" Your sensitivity will be much appreciated, believe me.

Four Weeks

It has been four weeks since we we discovered that our baby is a little girl. We immediately began imagining our lives with "one of each", a little sister for Eli, just what we were hoping for. Within the hour, though, those dreams were shattered by the news of her multiple abnormalities, likely heralding a devastating diagnosis. By the end of the day we had been assured that this was a baby that would not make it - she probably had Trisomy 18 - and that if she somehow survived to term, she wouldn't live more than a few days. Within 3 days, we had a definitive diagnosis - worse than they had thought: Triploidy - carrying even narrower odds of survival to live birth.

Four weeks.

Each Friday feels like an ugly anniversary - another week gone by since our pregnancy took this dramatic turn. I try not to ruminate on it every Friday, and I'm generally pretty good at distracting myself, but today was tough. I'm beginning to feel like, as our planning and arranging and "doing" for her winds down, I'm getting worse at coping. Or maybe it's just that as my pregnancy progresses and I've spent more and more time bonding with her, the reality is growing more difficult to bear.

At 19 weeks when we first learned of Gracie's diagnosis, I hadn't really felt her move yet. I'd had such a busy semester that it was easy for me to sometimes forget that I was pregnant from time to time! And as I have described here before, I hadn't really "bonded" to her in a meaningful way. Now, at 23 weeks, I feel her move throughout every day. She is constantly reminding me of her presence. I have also gotten dramatically more uncomfortable, with random belly pains, Braxton-Hicks contractions, swollen legs, and that "crowded" feeling in my abdomen that I don't remember feeling with Eli until at least 35 weeks - more persistent reminders that I am, indeed, pregnant. Then there's the "obviousness" of my condition - my belly is only getting bigger - which brings on the comments from strangers with increasing frequency. She is always on my mind, which means that the reality of our situation is frequently bringing itself to the forefront of my thoughts.

"Our situation" in and of itself has also bonded me more strongly to her. I guess it's my protective instinct (which admittedly didn't kick in right away), but knowing that she is sick makes me feel that much more loving and compassionate and sympathetic toward her, much like you feel when your toddler has a fever and is feeling yucky. You want to snuggle them, care for them, "mother" them. I suspect that her diagnosis has made me even more attached, even more desperate to hold her and kiss her and make it all ok.

I'm so glad that I have come to this place of acceptance - at least an acceptance of her, which I didn't initially feel. But along with that acceptance has come an ever-growing bond to her and an exponentially inflating love, which is leading me exactly to where I initially didn't want to go. I didn't want to allow myself to really bond with her or to really love her. My own self-preservation instinct was working to protect me, I suppose. It didn't take long for my mothering instinct to win out over self-preservation, but now that it most decidedly has, I am left broken wide open, raw and vulnerable. We all are, as mothers, whether our children are in the womb or out in the world.

Four weeks in, I feel a deep ache growing inside of me. It's a kind of desperation. It's all becoming more real to me, as the reality becomes unavoidable and settles into my consciousness, and I can feel my "peacefulness" slowly being replaced by an unsettled feeling. I thought I had reached a certain level of comfort with all of this, but I'm growing less "comfortable" by the day. It's starting to hurt. A lot. It has always hurt, but I can feel the pain changing. Something big is coming. I think that maybe I'm about to go through a turning point in this grieving process - probably something necessary, but at the same time terrifying. At first I thought that these "bad feelings" I've been having were related to Gracie's condition, and that I was about to lose her (I've been checking for her heart beat with the doppler somewhat compulsively these past few days). But I just have this sense that she isn't going anywhere just yet. I'm beginning to believe that she's going to surprise us all. And it's not because I've necessarily been hoping for that - like I've said, I vacillate between different outcomes and what I think is most desirable or best for all involved. I just have the sense that she's sticking around. I could be completely wrong, but that's how I feel. I really think that all of this discomfort is related to my grieving process and not any kind of "sign" of impending doom.

For many reasons, I'm afraid. But I'm also ok with experiencing this process. I know that the only way to make it to the other side is to go through it - there's no going over, under, or around it. I also know that grieving for her is a big part of loving her, by virtue of the life that God has chosen for her. He has chosen to limit her time here with us, so being her mother means experiencing this painful process of simultaneously getting to know her, growing to love her deeply, and letting her go. That isn't supposed to happen all at once, but it's what we will have to do, and it's all we'll have. I've said it before, but it's an important reality of which I must often remind myself: This pregnancy, and maybe a few precious moments or hours after birth, are all we'll ever have. If I hid myself from it all, feared it, refused to embrace it and commit myself to experiencing her life in whatever ways I'm able, I would be missing out on the only opportunity I will ever have to be her mother. Just carrying her isn't enough, and if I settled for just giving her a warm place to live until she passed away, I know that I would come out of this experience with tremendous regret and a feeling of emptiness.

Four weeks in, I find myself on the cusp of... something. I'm not sure what. I just know that whatever is to come, it's all integral to the experience of being this sweet baby girl's mama, a gift that has changed my life and a blessing that I never would have understood until I experienced it. I really can't explain, from a practical standpoint, how I've come to feel this way about a child that I've never gotten to meet, but I couldn't possibly feel more sure that she is worth every ounce of pain.

Grieving an Idea

May 16th was one of the worst days of my life. The ensuing weekend wasn't much better. While the grief has let up somewhat as the weeks have passed, we find ourselves in a constant state of mourning. It ebbs and flows, waxes and wanes. Some days are worse than others. Sometimes the reality really slaps me in the face when I least expect it, just when I think I'm having a "good day". Sometimes it's easy to talk about. Sometimes it makes me cry just thinking about it, much less holding a conversation about it. Overall, though, I'd say we're moving toward a "recovery" of sorts - from a more grief-stricken state to a more peaceful one.

The problem is that it isn't over. We haven't reached a point of closure. The physical loss of our daughter is still impending, looming somewhere in the uncertain future. I'm beginning to wonder, though, which will ultimately feel worse - May 16th, or the day our Gracie girl grows her angel wings.

In the past few weeks I have learned that different people grieve in vastly different ways, and that this kind of a loss and its impact on a person's life depend on a seemingly endless variety of factors. What I believe about our situation, having read about so many different variations on infant loss and stillbirth, is that we are at a distinct advantage (if there is any "advantage" to be had in a situation like this) by virtue of the knowledge that we have. We've been given a warning. We know what is to come. Not only will we not be blindsided by this sudden and most tragic of losses - we will have had time to prepare ourselves emotionally and spiritually, to physically make preparations for her arrival and her passing, to contemplate ways to make it special and ways to remember her, to handle the logistics of a funeral and burial ahead of time. We have been able to ensure that we're making the memories we want to make while we still have her with us, like getting a 3D/4D sonogram, recording her heart beat, and having maternity photos taken. As difficult as this knowledge is to bear at times, these are all tremendous gifts. I am forever grateful for each day I have with her, and for the fact that I have been warned not to take any of them for granted.

What hurt so badly about May 16th was losing the idea of her. We didn't physically lose our daughter that day, but we lost her in every other sense imaginable. We lost the idea of Eli's little sibling. We lost our "family of four". We lost Saturday morning snuggles buried under not one, but two babies. I lost the breastfeeding relationship that I was looking forward to. We lost the nursery that we had planned to decorate in yellows and grays. I lost the image of my husband, toddler and newborn cheering in the crowd on my graduation day. All of the things that we had imagined, the plans we had made, the logistics we had thought through so carefully, all disappeared that day. All that is left now is our baby girl herself, completely robbed of the potential that her life once held. No less loved, no less real, no less alive... just robbed blind of all that she deserved, and all that we were so excited to give her in this earthy life that we had planned.

Having all of that stripped away has really changed the way I relate to her, but not in a negative way. All that is left is her - her physical body and her perfect little soul. I'm no longer enthralled with any ideas of what life will be like, what she will bring to our world, how cute Eli will be with her... I just love her for her. It's not that I don't think I loved Eli for Eli while I was carrying him, but having been pregnant twice now, I know full well where a lot of the excitement and anticipation comes from. So much of the joy of pregnancy is found in looking forward to the future. After all, the end-goal of pregnancy isn't just being pregnant, it's bringing a new life into the world, adding to your family, creating a new little person to love.With Gracie, I don't really have any of that anymore - at least not in the traditional sense. There are no other distractions, no future to get excited about... there is only her, in this moment, and maybe not in the next.

Of course I still think about that stolen future, and I grieve for it because I have already lost it. I often wonder if having had the opportunity to grieve and begin to recover from that loss will help to ease the physical loss when it happens. By the time she passes, we will no longer be so heavily mourning the loss of that future. We will be that much closer to acceptance of what cannot be, and acceptance of the fact that her life, however unfairly shortened, was meant for a different purpose than we had planned. That can only help, right? I follow the blog of a friend-of-a-friend who recently (about a month ago) lost her son in utero to Trisomy 18, another severe chromosomal abnormality, and she seemed to confirm that this was true for her. She still feels that the day they learned of his diagnosis proved to be much harder than the day that he was born into heaven.

I take some comfort in the idea that this may also prove to be true for us, and that maybe as a result, we will be able to find a special brand of joy and peace in welcoming Gracie when the time comes. I hope that we will be well-prepared to welcome her with tremendous love and appreciation for who she is, just as she is, whether or not her heart is beating, whether or not she is born with any potential for an earthly life of any duration. I hope that experiencing some of this grief in advance will allow us to be more present, clear-headed, and able to make memories with her.

Before I go, I'd also like to share this beautiful custom creation that arrived today - Gracie's "birthday" present. I have mentioned previously that we were designing a necklace for her, and it turned out exactly as I had envisioned it. It was created by an Etsy shop owner in Canada, actually, who was incredibly generous to us and expedited the process so that we could have it on-hand as soon as possible, given the uncertainty of our circumstances. We want to bury Gracie with a piece of us - something special that will reinforce the idea of the four of us as a family. I know that she will never understand or appreciate the sentiment behind it, but it means something to us to leave her with this "reminder" of our love, of how badly we wanted her, of how sorely she will be missed.

I haven't seen her yet, but I'm reasonably certain that she is, in fact, "too beautiful for earth" ;-)

Prayers please.

Sitting in the car in the funeral home parking lot. Waiting til the last second to go in - don't wanna be sitting and waiting around in there for our appointment time. Trying to see this in a positive light... Our only chance to plan a special celebration for our girl. But this is a little too real. Prayers please.

Mixed Emotions

Am I beginning to sound like a broken record? Mixed emotions have been a common theme throughout my posts since we received the news of Gracie's diagnosis. Nothing is black or white, including our emotions about all this. Perhaps the only pure emotion I feel is love for her. Everything else is gray and convoluted.

Today was no different. Since we never seem to have a dull moment around here, we ended up visiting the hospital again. That brutal headache that I was complaining of in my last post (last night) turned out to be accompanied by high blood pressure, which was sustained overnight and into the morning. We went in to L&D just like last time and got the same work-up. Of course my blood pressure was perfectly fine the entire time we were there - this time I didn't even have to lay on my left side. It was just normal. Which, of course, is wonderful news, but it made me feel kinda dumb for going in! I still had protein in my urine, but all of my other blood work came back normal again, so home we went. All's well that ends well, right?

It was certainly a relief to hear that I was ok, that she was still in there, and that she and I could go home and continue on living this intertwined life that is all we'll ever have together. No one was going to ask me to make a choice - not today. I had fallen asleep last night with tears in my eyes. The last thing I said out loud to Ben before falling asleep was "I don't want it to end this way" - "this way" meaning delivering early, while her heart is still beating, because I'm getting sick. On the way to the hospital today I prayed "Please, God, if this is her time... please just take her now. Don't make me decide. Please don't make me decide." Losing her early because my own health is deteriorating is my biggest fear in all of this, as I've mentioned on more than one occasion. When we were given this news and I was asked (repeatedly, by every health care professional we met that day) whether we had considered termination, it wasn't even a "discussion" or a "decision" - the answer was just no. We couldn't be the ones to choose to end her life then, and it doesn't feel any better now, even with the threat of "medical necessity" looming ahead. So like the weak human being I am, I often pray and ask God to spare me that burden. As strange and foreign and awful and ugly as it feels to ask God to take your own child, I do. I want Him to do it, because I don't want to live with having done it myself.

I feel pretty good this evening, physically, but these hospital trips (all two of them) are so emotionally draining. I notice the high blood pressure, start to worry. Re-check it over and over, hoping the high reading was just a one-time thing. When I realize that it's not going away, I call the OB's office, and I'm told to go to L&D. I call Ben at work and have him start heading home. Then my stomach promptly tightens into a firm knot as I pack. I pack clothes for myself and for my husband, toothbrushes, deoderant. Today I packed the white shirts that I recently decided I'd like for us to wear in pictures with her. I packed her little hats that my dear friend Lisa made to fit her especially tiny 21-week-sized head. I packed a framed 3D sono photo of her. I packed up our box of memory-making supplies from String of Pearls. I got on the computer and read over our birth & comfort care plan for her to ensure that the funeral home phone number was on there and that our wishes were up to date before printing a few copies for the hospital bag. I changed and dressed my son and packed up his things for day care, and wondered whether I should tell him to give Gracie a "hug" before we left him.

It's wonderful that we're home now this evening. I'm relieved and happy that we've "lived to fight another day". But having to repeatedly prepare myself and brace for the worst... it's tough. Not knowing when or where or how "the end" will happen... it's awful. Each time something like this happens and we're confronted with the reality that "this may be it", it sets me back again. I get myself together, feeling good, living the day-to-day, at peace with things, and then something happens that reminds me that this is real. It's really going to happen. Fortunately today turned out not to be the day, but someday "the day" will be upon us, and we will lose her. It's like having a dark tunnel at the end of the light, instead of a "light at the end of the tunnel". I can try to enjoy her, love her, remain upbeat, focus on the happy parts of being pregnant, but there's this cloud of pain looming in the not-too-distant future. I can't "get through" my grief because it isn't over, and I don't know when it will be over, and I keep being reminded of that cloud and just how real it is and just how dark and heavy with rain it will be when it arrives. You can try to set out your picnic and enjoy the sunshine while it lasts, but that dark cloud is always there, threatening. It's a tough place to be living.

That's where the mixed emotions weigh most heavily on me. There are moments, especially in situations like we found ourselves today, that I long for some relief. I find myself wishing that I could just pop that cloud and let it rain - just get it over with. Let the lightning strike and the thunder roll and the winds and hail rip me to shreds, so that I can know that it's over, and I can try to put myself back together again. As desperate as I am to cling to her little life, and as destroyed as I will feel when she is gone, and as intensely as I know I will wish for just one more day with her, I still sometimes wish that I didn't have to live in this limbo. As devastating as they are, I've had some time to come to grips with the "knowns" in this situation. Those realities hurt. But it's the "unknowns" that make it so frickin' hard to live out each day.

At the end of the day, I am so relieved to be pregnant tonight. I am so blessed by her every flutter in there, and I wouldn't trade it - not for anything. It's a trade-off that I have accepted. I get to keep her a little longer and love her a little more, but in exchange, I have to live with not knowing what is to come, or when. But accepting it doesn't mean that I don't occasionally stumble under the weight of it all and show my human weakness. So, here I am, weak but grateful. Just trying to keep my head on straight. Praying that God continues to shower me with a brand of grace and peace and strength that I never knew were possible, to keep me afloat as I wait for whatever lays ahead. I wait, and I pray, and I love her. It's all I can do.

Limping Along

Two days into this surgical rotation I'm already in desperate need of some sort of chiropractic adjustment, orthotic shoe inserts, and a week-long nap. I had forgotten how hard it is to be on your feet all day, especially while pregnant. I had a desk job the last time I was pregnant... that was nice. It doesn't help that my "good shoes" (my professional clogs) are officially too tight now that my feet have started to puff up. I also have a ROCKIN' headache right now, and I'm pretty sure that my right eyeball is about to pop out of its socket. #pregnancyproblems  *SIGH*

Then again, at least I'm still pregnant. At least my baby girl is still here :) Today was a relatively happy day... she gave me her first big "thump" from inside! I've been feeling her vaguely fluttering around in there for close to 2 weeks now, but today I got my first distinct "kick" (or punch, perhaps... tough to say!). Definitely made me smile :) It wasn't all that long ago that I was convinced that I didn't ever want to feel her move - that I was wishing for this to end before I ever got to make that connection. I remember specifically thinking about that, shortly after we found out about all of this. Once again, I'm feeling so very thankful that I've been able to move on from that place. I understand why I was there, but I'm so glad that I don't want to hide anymore.

As open and honest as I am with myself (and you all), I keep struggling with how much to tell people. I work with the same residents every day, but different attending surgeons. I can't read these people... how much is "over-sharing"? Part of me doesn't want to have to smile and lie, but part of me doesn't want to go into it. I never know what to say after people react. "Oh my gosh I'm so sorry" "...Yeah, it's hard..." Awkward silence. Sometimes I just want to wear a sign that says "My baby isn't going to make it" so that people won't congratulate me or ask about her or make any mention of the fact that I'm pregnant. And it's not because I don't want to remember that I'm pregnant... I think about her all day every day, and I'm happy to be thinking about her. I just don't like the awkward conversations, and constantly trying to decide how much to share. I really don't have a hard time sharing or talking about this stuff myself. It's just that I can sense the tension and discomfort in others when I'm telling them about it in person, and that's what makes it uncomfortable for me. I know that they're uncomfortable and they don't know what to say. I thought I'd be avoiding the subject because it would be too painful for me, but I'm realizing that I find myself avoiding the subject to spare others the awkwardness. Most of the time it's just easier to smile and pretend everything is fine.

Then again, sometimes I (selfishly) want people to understand just how tough I am. I want them to know what's going on inside of me, so that they get just how hard it is for me to be standing in front of them in that moment, present and participating and acting like I give a crap about anything else beyond the confines of my uterus. To be honest, most of the time it isn't as hard as I thought it would be, because being there is in itself a distraction that helps me to cope and to keep on moving. But in the difficult moments, when the reality of this situation is at the forefront of my mind and no amount of distraction seems to shake it, I want people to get it. I want some credit. It's dumb, but it's how I feel. I'm not just another med student plugging along, desperately trying to impress someone, working hard for that "A". I'm a mother, somewhere in the process of losing her unborn baby, grieving and hurting and clinging to her sanity, limping toward a finish line she can't see. I don't want special treatment or better grades or "slack". Sometimes I just want people to see me for what I am right now.

Plans and Comforts and Fears and Worries and... Random Thoughts

Can I just complain for a moment...?

Making funeral arrangements for your still-living child really sucks. I'm sitting here writing emails and making phone calls while she occasionally flutters around in my belly to remind me that she's still here. Maybe she's just offering a little "pat on the shoulder" from the inside... a little "it's okay, Mommy". I like to think so.

*SIGH*

It's a one step forward, two steps back kind of process. I try to work on these things when I'm in the right frame of mind (ie. NOT already sad and crying), but ultimately, the process of "working on these things" almost invariably puts me into a more somber frame of mind. How could it not? It has been much easier - almost... therapeutic? - to work on the remembrance stuff. Things I want to have for her, memories I'd like to capture, little gifts to bury her with. The funeral and burial stuff, though... not so much. I've been avoiding it like the plague. It has only been two weeks since this bomb was dropped on us, so I know that it's not all that bad that I'm just now gathering the strength to deal with it. At the same time, though, the reality is that we're fortunate that the worst hasn't happened yet and caught us off-guard. We really need to put these plans into place.

I had no idea where to start, of course. For one thing, you can't take out a life insurance policy on an unborn child, so where does the money come from? I had heard from other families that have dealt with infant loss and stillbirth that there are many funeral homes that offer their services at dramatically reduced costs in this kind of situation, but how does one find these places? Fortunately I was able to get in touch with the wonderful Maternal-Child Health Social Worker at the hospital where we'll be delivering (who also lost a baby to triploidy... can you believe it?!!!), who gave me a list of funeral homes that they've worked with in the past. I've gotten in contact with 5 of them so far, and the one that has provided me with pricing was quite generous, so I'm hopeful that this won't be quite as bad as we were anticipating.

Then there's the question of where. Being a young family and not exactly committed to the exact area in which we're currently living, I hesitate to bury her out here close to our current home. I also don't want to have to go too far to visit her. My family has several plots at a cemetery near where my parents live, about 45 minutes from us, which might be an option as well. I'm told that you can purchase space on top of an existing plot (of a family member) for a dramatically reduced cost, so we'll consider that as well. My grandmother lost her 9-month-old baby who is buried there, so it might be nice for Gracie to join her.

GAH... this is so bizarre to talk about, isn't it?!!!! I'm becoming somewhat desensitized to it all, but every now and then it hits me just how flippin' WEIRD it is to talk like this.

Anyway, then there's the question of what type of service to have. We're thinking of just doing something graveside. I like the idea of being outside, as opposed to being in a funeral home (with that funeral home smell and funeral home lighting and funeral home... atmosphere). We don't plan on having a viewing. I just don't want to make people feel obligated to face the raw reality of it all. We will invite our families to come and meet her in the hospital if they feel compelled, and we will certainly share photos with anyone who is interested, but I think that will be the extent of it. I also don't want to leave the hospital and spend the next few days knowing that I'll have to see her again (but this time all "done up" in post-mortem fashion). I just want to spend our time with her, say our goodbyes, and remember her in her natural state as she came to us. I need to start Googling around for music and readings and things we'd like to include as well, but I know for darn sure that that's going to be an emotional process, so I'm tabling it for the moment.

There's also the added complication that I'm about to begin a surgical rotation on Monday, meaning that my hours are about to get very long, my mornings very early, and my free time very sparse. Not great timing. And I can't take time off in small chunks - it's one month at a time from this point on - and I only have a maximum of 3 months to take if I want to graduate on time (and I desperately do!), so I'm trying to save that time for after the birth, and for residency interviews (late fall). The scheduling inflexibility is only one of a zillion reasons why medical school is frickin' hard, especially when you have children. But I digress.

Today we received a kit from a wonderful foundation called String of Pearls, which I've mentioned before. Free of charge, they provide this amazing memory kit to families facing the loss of a baby with a terminal diagnosis before or soon after birth.

It includes two books, a candle, a crocheted blanket, air-dry clay for making hand- and footprint impressions, a casting kit for making 3D plaster casts of hands or feet, a ceramic ornament with paint for making a hand- and/or footprint keepsake ornament, a creme for breast engorgement, and herbal tea for mom. It's so perfect for this kind of situation, and I never would have thought of all of these things on my own but am so glad that I'll have them on hand to make memories and keepsakes with her.

We also ordered a custom handstamped silver necklace for her on Etsy. I couldn't find anything that was exactly what we wanted, so I found a shop that had all of the elements we wanted (just in different necklaces) and asked them to piece it together into one necklace for us. The shop owner was incredibly sweet and accommodating and is expediting production so that we can have it ASAP.

I'm beginning to feel like we have our bases covered, and that we have all we'll need to take with us when the time comes. The funeral stuff is still in the works, but at least we're ready to head to the hospital with all of the things we wanted to have to help us savor and capture every memory we can make with our little girl. That in itself is a huge stress-reliever. I've been on-edge about it up until now, knowing that there were still pieces of this puzzle that we were working on, and that if we didn't get it all pieced together in time there would be missed opportunities. I'm feeling more at peace about the idea that we are going to have as positive an experience as possible, and are doing all we can to remember and celebrate our Gracie.

In obstetrical news, I had an appointment with my OB on Thursday which went just about as well as I could have hoped. My blood pressure was normal, and there was no protein in my urine! She did make it relatively clear to me that she does not intend - if I do develop preeclampsia - to wait around for it to "get bad" before intervening. I know that she's right... if I develop preeclampsia, I'm only going to get sicker and sicker. None of us want to end up in an emergency situation, and even worse, I don't want to end up getting so sick that I miss out on time with her. As many of you know our first birth was a rather horrific experience, and we certainly don't need a repeat, especially when our time with her after the birth will be limited.

While "intervening" is a very tricky subject for us, we have at least decided that we're not going to do anything risky with my health. Defining "risky" and drawing the line somewhere is also tricky, and as a "medical person" I probably have more confidence in my own opinions than I should, but I'm trying to remember that God put this OB in my life for a reason, that she knows exceedingly more than I do about these things, and that I need to trust her judgement (as I pray for God to guide her, and to guide us as well) if we are forced to make "the decision" at some point. My prayer is that Gracie will pass peacefully on her own and that the decision will never be in my hands. As much as I wish that we could hang onto her forever, I know that if she passes on her own, sooner rather than later, I will have the best chance at both remaining healthy AND not having to live with having made the decision to deliver her while her heart is still beating. While I hope that I won't carry too much guilt about that if it comes down to it, I fear that I will. I know that at the very least, it will add another layer to the complexity of our grief as we mourn this loss. There are also further risks associated with her reaching later gestational ages (mainly that I would require a C-section - having delivered my son via C-section - and that nontraditional techniques may be required that would put future healthy pregnancies at risk). My heart wants to hang onto her, to hope that she makes it close enough to term that she could survive outside the womb for a time so that we can share a few moments or hours with her, but my logical mind knows that that may not be what's best. Good thing I'm not the one who has to make that call... it's all up to Him.

Part of me also fears that she is suffering in there. I'd like to believe that my womb is a safe, warm place that is sustaining her life and providing comfort, but I have no way of knowing whether that's true. I know that she has nerves and pain receptors that are only growing more mature and sensitive every day. I know that she has several debilitating physical defects that we can see, and countless more functional defects that we cannot see. All I can do is trust God with her tiny body and pray that he spares her any undue suffering, but part of the way I'm dealing with the prospect of losing her soon is by reminding myself that while my heart is clinging to her, I can't bear the thought of her suffering in there for 4+ more months just so that I can have the comfort of meeting her while her heart is still beating.

It's a very complex situation with so many competing risks, facts, emotions and fears. I know I'm doing a terrible job of boiling it down for you - this post is such a hodgepodge of topics - but I think it's a fairly honest reflection of what it's like inside my brain these days... A jumble of thoughts and plans and fears and worries, and even some comforts and joys, but mostly just chaos if we're being honest!