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.