6.10.2014

things to not say to a grieving parent

I was thisclose to titling this entry "things I would be totally cool with never hearing again" but went with the less snarky route in an attempt to not trivialize my point. The thing is, I know people mean well. They do. When I first disappeared off social media at the news of Wylie's diagnosis and poor prognosis, I had many people trying to find out my whereabouts. I couldn't just turn my phone off, ignore the alerts and hide under my covers because we were waiting on test results and phone calls from specialists and I didn't want to miss anything. Eventually I had to delete all of the apps on my phone, which only slightly alleviated the issue because then the texts and phone calls started coming in -- which isn't a bad thing, because everyone was being nice and supportive, but I started to feel a bit guilty that I was just about ignoring everyone. Somehow the words "Wylie is really, really sick and she's not going to be okay" didn't get any easier to say, especially when we were just trying to digest the news ourselves. Over time, the "where are you?" texts morphed into "are you mad at me?" phone calls and I realized that I had to just let go of the guilt and pretend there was no world outside our family or the walls of whatever medical office or hospital we were sitting in that day because if I didn't, I would implode.

I say frequently that the hardest part of everything we went through wasn't her birth, but learning just how sick she was. If you can imagine the pain you feel when your child stubs their toe or skins their knee, then you can understand when I say that learning how sick my child was felt a little like my insides were slowly and painfully dying, one by one. I feel that setting foot back into the outside world was also an impossibly hard task, also harder than most people would think seeing as how well-meaning friends have been urging me to "just go out and you'll feel better." There were the friends who knew and then there were the acquaintances who had absolutely no idea. You know, the well-meaning sort-of strangers who think they're being thoughtful by asking how much longer you have to go or how you've been feeling since they saw you last, the ones who notice you're no longer pregnant and exclaim with excitement that you had the baby and demand to see photos -- the baristas at Starbucks, the cashiers at the grocery store. It's hard, it's awkward, it's uncomfortable for everyone and I semi-seriously thought about making a shirt that said "our baby passed away, please don't ask me about it in front of my son." I'm sort of passive-aggressive like that. I mean, my neighbors have no idea that Wylie is gone or I'm no longer pregnant because I have perfected the art of avoiding them completely, once even climbing out over the console and through the passenger door of my car just so they couldn't see me run into the garage. I wish I was kidding.

People mean well, they do. But sometimes the awkwardness can't be avoided. I can't stay out of the grocery store forever (believe me, I tried -- my poor child ate microwave popcorn for lunch way too many days in a row) or refuse to let Ethan leave the house when he wants to go play with his friends. Inevitably, it's going to come up. The bulk of the time, people are obviously thoughtful and compassionate, wanting to express sincere sympathy for our loss. They feel terrible for having asked, and then I feel terrible for having to tell them. Every once in a while, though, someone says something totally crazy and I become a ball of nerves looking for any emergency exit I can find, even if it's through the ceiling.

Everyone grieves differently. Everyone handles loss differently. What might affect someone negatively may roll off the back of someone else or even be a welcomed inquiry. All I know of loss is my own experience. All I can share are the things people have said that have made me want to melt into the floor:

1. "Well, it didn't work out this time but you can just try again!" Maybe there's a little confusion on what exactly I lost. Maybe people think I'm talking about a board game and I rolled the dice poorly and am hoping another turn will let me pass Go. But, people, I'm talking about a child. My child. The one I wanted and loved. Maybe after you walk out of the door of the funeral home where you had to make plans for your child's remains, you exclaim "well, tomorrow's another day! Let's try again!" But, yeah. I sincerely doubt it. Give me time to mourn the loss of my child and figure out the rest later, will you?

2. "How was your husband? Was he really sad, too?" Um, no, actually -- my husband was so thrilled that he did cartwheels after finding out that his daughter was really sick and would never come home with us awake. Is that a trick question? I'm never sure how to answer this one.

3. "What happened?" Everyone who knows us knows what happened. Everyone who reads this blog knows what happened. Even my favorite baristas at Starbucks know what happened because I wanted them to know. If I'm out to coffee with a friend who I haven't been able to sit down and talk with, this isn't such a weird question. If I'm in the grocery store check out line and the lady bagging groceries decides to ask like I really want to rehash this story with her after she asks if I had a baby and I spell out "she passed away" so that Ethan can't hear me -- well, it's not going to happen. Somehow the grocery store check out line with my three year old in tow doesn't seem like the sort of place I want to get into the most tragic weeks of our lives, especially not with a complete stranger who knows me solely as "lady with the cute little boy who she wears in a backpack" and whose name I don't even know.

4. "Breastfeeding is the best thing you can do for your baby." I've always found this sucks. It sucked when I had no choice but to formula feed Ethan, it sucked when I made the decision that we were going to formula feed Wylie and it sucks most of all when you have no baby to bring home. Next time you feel compelled to sprinkle some words of encouragement to the lady buying No More Milk tea at the store, take a few steps back and realize she doesn't want your encouragement because she doesn't know you and, just as much, you don't know her. "Thanks for telling me what's best for my baby when I don't even have a baby" is way too confrontational for me, so "choke back tears and run out of the store" was my back-up plan. It's not fun.

5. "You can't let one bad incident stop you from having more children." A fender bender is a "bad incident." Starbucks being out of venti cups is a "bad incident." The horror of everything that happened, well, is a life-altering tragedy. And something else I don't feel like explaining to every well-meaning stranger in the Starbucks line is there are risk numbers involved. We have a higher chance at a repeat. Maybe it doesn't seem high to you, but let's keep in mind we had a 1% chance for what happened to Wylie to have happened to Wylie. Sort of makes anything higher than 1% seem like playing with fire, which I get maybe you can't understand unless you've been in this position. And, you know, this decision essentially is between my husband, myself and the amazing team of doctors we now have on our side. Just go on and order your grande vanilla latte and shut up.

6. "I know what you're feeling." We have heard so many comparisons from people who "know what we're feeling." Everything from a miscarriage at eight weeks to the death of a cat (and, dude, I love my cats) to the passing of a 101 year old great-grandmother. I'm not denying any of these things are sad. If I were in any of these positions, I'd be a blubbering mess who probably wouldn't leave the house for weeks. But the truth is, no one knows what we're feeling. Everyone grieves differently. Everyone feels pain differently. Up until losing Wylie, the most painful moment of my life probably was losing our cat, Hadley, or losing my grandmother. However, there is no "pain ranking system" so there is no tier of "worst loss ever" for everyone to stand on and somehow be equal. It's not a competition, either, so the "my cousin lost her baby at 32 weeks, that's so much worse" comments also don't do much to help in the healing process. We've had several "I don't know how you're feeling, but when I had a miscarriage it was the greatest pain I ever experienced and if you need someone to talk to, I'm here" or "I've been in a similar position and am here to talk if you need someone who has been there before" and I've found these are worded so much better. I somehow lose the urge to bitterly scream "screw you, you don't know what I'm feeling!" in the face of a well-meaning friend or family member, so that's a plus. Ultimately, it's not about understanding what we're feeling, it's just about being there for moral support.

I should also point out that understanding in the face of loss people may be a little more preoccupied (or, well, an unbalanced pile of hormones and frazzled emotions) can help. I've given up trying to explain to friends that I'm not mad at them if it takes me forever to reply to their texts or e-mails (my e-mail inbox is pretty frightening right now -- it'll take me weeks to comb through all of the unread and missed e-mails!) and it's not that I'm trying to shut them out. I'm just trying to slowly weave my way back into the world, which is a scary thing. And it takes time.

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