Monday, September 24, 2007

The Right Stuff

This has been the hardest post to write to date, because it’s been difficult for me to cynicize and snark about this particular subject. Oh for the love of Mike, I hear you saying, this woman has found a way to one-line her way through taking her baby off life support. What in all that’s holy could possibly be more serious, more difficult to verbalize and talk about? (I see you peering through your fingers. It’s like a car wreck isn’t it, can’t turn away?) I’ll tell you what’s rough to discuss:

Things that make me feel better.

Maybe it’s all so awful, that awful is the new normal, so to me it’s just comedy gold. It’s that rare blip of “hey. That wasn’t so bad,” that has me all tongue-tied, grasping for a way to put into words what just happened so maybe (maybe?) I could, you know, feel it again sometime. So, for your reading enjoyment, I thought we’d dwell a bit on the spoken word, and specifically, the words that made me feel a wee tad better.

People with a couple brain cells to rub together usually know what’s appropriate and what’s not in certain awkward situations, like when you find out a friend or relative is infertile, suffered from a miscarriage, or lost a child. In fact, if you’ve found this blog and have gotten through the sidebar and are still reading, it’s highly likely you’re not one of those people who stay stupid crap about these kinds of things without thinking. Let’s look at a few examples for the fun of it: should someone you know have a miscarriage (raises hand) it’s not a horribly nice thing to respond with adages to the effect of “well, it’s probably for the best,” or “it was meant to be,” or “God had/has a plan.” No, no, and um, not one I agree with or worship, no. Ditto if someone you know confides in you that they’re suffering from infertility (raises hand again, sigh) it’s not great to say things like “oh just relax and it will happen,” “give it time,” and the great zinger of them all, “maybe you weren’t supposed to be a mom.” It won’t (or fuck you), I have, and kiss my what? (Like, maybe you were meant to keep that infected appendix! Maybe you were meant to go through life with 80/40 vision! Maybe you were supposed to die of tonenail fungus!)

I know I’m preaching to the converted here when I tell you to avoid such no-no’s after discovering someone you know has lost a child: it was for the best, you’re young – you can have another; God had/has a plan; God only gives you as much as you can handle; bullshit, bullshit, bullshit. I’ve been very, very, VERY fortunate that the asinine comments lobbed in my direction have been extremely minimal. Sadly though, I have not been spared the occasional mindblowing doozy: at my six-week checkup (and yes, they still make you go even if your child dies. Tough, huh? Like you care at that point about the state of your vaginal canal) the woman checking me in saw on the computer that it was my six week check and said cheerily: “Oh, your six week check! Did you bring your baby?”

No really, she said that. Had I had my wits about me, the response woulda been “Why yes! She’s right here in my purse, hold on a sec . . . . . (whips out box of ashes).” But, really, I burst into tears, and so did she. In another case of brain fartage, a mom I know regaled me with a story involving an screaming infant, a holiday, nice clothes, and diarrhea, and summarized the story with “It was my worst night as a mother.” As my jaw went slack, I mustered every amount of strength I had to not utter, “You’ve gotta be fucking kidding me.” In yet one more moment of spectacular duh, a mom off-handedly told me that her 5 year-old son’s frog/goldfish/hermit crab/whatever had died, and she just couldn’t figure out how to explain it to him. (!) I pulled together my best “hmmm,” face, wondering if I should recommend some great kid’s books I have on why people die, and how kids feel when a sibling dies that might, might be a bit useful in his tragic case. And oohhh, how tough THAT one must be. To flush or not. Would that such an opportunity could arise so I could have such philosophical and thought-provoking discussions with my toddler.

I love the latter two moms of which I speak, they’ve been nothing short of supportive and caring, but you know, that’s no excuse. THINK before you speak people, please. Instead of going through the litany of stupid things you shouldn’t say (don’t’ worry – I’ll post the mindblowing crap with appropriate snark here), I thought I’d put up some helpful things you could say and do should you find yourself in the presence of someone like me. This is in no way intended as a backhanded slam to anyone I know personally reading this now – like I said, I’ve been insanely lucky to be surrounded by caring, compassionate, and extremely articulate and loving people. If anything, I have a feeling I’m simply validating and reaffirming what you smart readers already know. In fact, you might recognize yourself here. These are just the things I’ve decided I liked best, and want to take a few moments to be thankful for people like you.

BE HONEST. If you can’t think of what to say because it’s just so horrible and words fail you and you can’t stop crying, and all of the cards seem stupid, just say that. That’s enough, and it means a lot. A lot more than some stupid trite sympathy phrase you whip out when your neighbor’s cat gets hit by a car. If you have no idea what to do because you honestly don’t know what I want, tell me that too. Maybe I’ll say something, maybe nothing, but the fact that you thought about it and told me is wonderful.

BE PATIENT. My social anxiety was not unheard of; many grieving parents just tune out from everyone for a while. It’s not that we don’t like you anymore, or don’t deem you close and cool enough to share our emotions with you, or that we’re off making grief buddies and you’re going to get left at the curb. We just don’t want to talk. Period. There are a couple people in my life who – despite my absolute silence -- showered me with daily and then weekly email and phone messages – just saying hi, telling me they were thinking of me, sometimes just a sentence to say they still thought of me and loved me. Months later, they would write again, again with no pressure to write back, to fill me in, and let me know they were still there should I need them. There was never, ever an expectation for me to return the message. And when I started communicating again, these people were the first I reached out to. Hang in there. I may not need you right away, but I sure as hell will in 6-12 months.

A subplot of Be Patient is that yes, I received word of the generous donation you made, and I’m so overwhelmingly grateful and thankful for people like you. But if you thought those wedding gift thank yous were bad, try writing thank you cards for gifts given in memory of your child. I haven’t made it through the stack yet, but I will. It will be very late, I know. But I appreciate your thoughts and generosity.

CONTINUE TO CARE. So many people said they were sorry within the first month. And then it all dried up. The flowers and food stopped, the cards ebbed. Once we started communicating with a few people, they then assumed all was well and quit asking. The people who touch me most, who I most appreciate, continue to ask how I’m doing -- really doing – even now. One of my neighbors, still, after his cheery “Howya doing, neighbor?” will frequently put his hands on my shoulders, look me in the eye, and say, “how are you doing?” I know he wants to know the truth, and I tell him. The grief doesn’t stop after a month, or six. It’s nice if the caring doesn’t either.

USE THE CHILD’S NAME. It’s not “the baby,” “the incident,” “what happened to you,” or [silence. Cricket. Cricket.] My child had a name. And I love hearing it. One of my most memorable early grieving moments was when a fellow dog walker – whose name I didn’t even know – rang my doorbell in order to give me a card and a Grek Tear Jar (which she made, because she couldn’t find one anywhere to buy, lodry I love my neighborhood). She then asked me what my daughter’s name was because she wanted to know her name when she thought of me and her. I told her. We cried together.

BRING “IT” UP. If you feel up to it. Who knows, there may be other news like in my ongoing medical saga. I love talking about it and Maddy. If you’re willing to listen, I’m willing to talk. Know that it may make me cry, and that’s OK. Don’t feel like you’ve dragged me down, because believe me, I’m already there, and it has nothing to do with you.

LET ME KNOW WHEN YOU NEED A BREAK FROM “IT.” Should you bring “it” up, and I assume that you’re cool listening, you may find that it’s just tough. And it is. It’s a lot. It’s not pleasant. It may make you fear your own children’s well being, or shake your faith in the universe. But instead of leading me down the road and then pausing and very suddenly changing the subject (“So! We’re going camping! Did I tell you?”), just be Honest (see above) and tell me – “If it’s ok with you, can we change the subject?” I get that. Really. I don’t get segueing from my dead baby to the weather or worse, silence. One of my friends is honest like this, and I just can’t tell you how much I appreciate her willingness to listen, and her candor in telling me she simply can’t bear to hear any more right now. She always brings “it” up again by the way, when she’s ready.

DON’T TAKE YOUR LIFE, YOUR KIDS, YOUR UNIVERSE FOR GRANTED. I’ve created a few straw men over the course of this year, and one is that every other parent in the world just hums along without a care, thinking bad crap like this only happens in the movies and certainly not to anyone they know, and Children’s Hospital is one of those freaky out there places where conjoined twins go to get separated. In my sane moments I know this isn’t true; that many parents have undergone all kinds of bad stuff, much of it worse than mine. But then I overhear the extremely pregnant woman whining to her friend about how wretched she’ll look in those delivery room pictures and I just want to strangle her. Or prop her eyelids open with toothpicks and force her to read this blog.

I’m not telling you that you can’t complain to me; remember, I now do bad news really, really well. I’m totally here to bitch with you about your job, your car, and your homelife. I know all the bad words, I can lend you Kleenex (I carry it now in every purse, and every pocket), and flip the universe off with you. Just realize at the end of the day that there is something worse than finding out your roof needs replaced and getting your car towed in the same 24 hours.

Hug your kids. Live for today. Never complain (well, not too much at any rate) about your children doing something that means they’re alive. Give to your local children’s hospital, because behind those doors are kids just as smart and cute as yours, and parents just like you, and you never know when you’ll be in there, begging them for answers. And think. Think for a few moments about all the things that could possibly go wrong, and how fucking lucky you are to still have what you do. Taste your food. Revel in joy. Because you just never know when that minute will come that might take it all away.


Anonymous said...

I don't know if you realise just how brave you are.
I live on the other side of the world and some how come across your blog, I think I was meant to read this. Reading your blog is helping me with my own issues.
Your brave because you write what is in your heart with honesty.
You and your family are in my thoughts and prays.

Searching said...

I was thinking about Maddy yesterday at work and was going to see if we had any obscure journals laying around that might be of any help (although since what she had was so insanely rare I HIGHLY doubt I will, but wanted to look anyway), but my peanut I took care of misbehaved the whole shift. She's a stinker and prob couldn't stand the thought of my eyes on anyone but her. I will look around the unit and see if there is anything when I get a chance though. Your family is in my prayers.

Anonymous said...

You're amazing! 'nuff said!

niobe said...

I love your list, since so many people seem to have no idea of what to say or do after someone else's baby dies. You've put together a wonderful guide of what people can do to help you. My own list of what I did and didn't want to hear after my twins' deaths (one stillborn, the other dying a few hours after birth) would have been similar, with only a few variations .

When your baby dies, you begin a terrible journey, down a treacherous path, to a place you never wanted to go. Know that my heart is with you, Maddy, and the rest of your family.

Kris said...

You are brilliant! I wish I'd had this list way back when.

Carole said...

I wholeheartedly agree with this list. I wish all morons in my life were equipped with one. I had a similar experience at my check up. I still wince when I think about it.

Tash said...

I'm going to post that I'll try and start chatting in the comments, but I just wanted to say thanks to y'all for pausing to look and comment. Niobe and Carole, I've read your blogs, and I'm just crushed. As much as I'm thankful to have company, I'd like to think the problem stops with me. Carole, I was late picking up my daughter from school because I started bawling during the Joseph slide show. So much love and pain in that room. Anyway. Thanks for coming. I'd also like to start a blog list of similar, so if you visit here and have one yourself or one that you fancy, please let me know so I can check it out. Thanks.

Kristen said...

Wow, powerful stuff. This post should be sent out to infertiles and fertiles alike. RESOLVE also has a great message to send out to people who don't get it. I put it on my Myspace page and I was surprised at some of the responses I got. People really have no clue what infertility is like.

I am sorry you've had to endure those ridiculously cruel comments. I've had the usual "oh you weren't that far along..." I want to rip their heart out and stab it with a fork.

And, for what it is worth, my heart aches reading your story. You truly are a brave and strong woman. I hope that peace finds you and your family very soon. XOXO

niobe said...

If you're interested in reading more blogs by mothers who've lost children, take a look at the baby loss directory which has a good list. I know it's been very helpful for me to connect with other grieving mothers.

sweetsalty kate said...


The bit about conjoined twins made me laugh - that used to be me (oblivious, not conjoined).

I loved this post. This post is... necessary. Thank you.

kyouell said...

I popped over after a comment you left on Kate's blog. Just wanted you to know who was here, in case your stats tell you some one was a lot last night (accidentally left the browser up during dinner). Excellent advice you have & I love your snark. Have you thought of sending this list to the NICU? I have some advice that I keep stopping myself from sending to them and my OB/Gyn group. But you seem to be braver than I.

Anonymous said...

I love the Be Patient one. I have friends and family that called me or emailed me to let me know that they were thinking of me. With no expectations for a call back. My mother on the other hand made it all about her even when we told her we needed time. Harassed us, didn't understand we were not talking to anyone, and still doesn't get it. A year later, I am still not speaking to her. She sends me emails begging for it to go back to the way it was. Yet, it won't ever be that way again because my sense of normal has changed. Perfect.

MT said...

Your post is great! My 1 day old daughter Katy died 6 weeks ago, and I have just found this blog. I'm resisting the urge to send this post to EVERYONE I know. I love the way you just tell it like it is. You and Maddy are in my thoughts and I will be reading lots more. x