Her Grief is Real

The photo and interview series Humans of New York recently did a group of stories on pediatric cancer, and the story of Max hit me especially hard. Like many of the others, it was a story of a child who died from pediatric cancer at age 7, as told by his mother; but unlike the others, his mother was in a lesbian relationship, and her son was conceived by IVF. She originally conceived twins, and aborted one of them “because I was scared at the time.” Now that her son is dead, she knows the decision to kill his twin “will haunt me for the rest of my life.”

What was your reaction on reading this story? I’ll be honest: I was crushed by the sorrow of it, but I also judged the mother. How could she have created her children so selfishly? How could she complain about one of them dying, when she purposely killed the other one? Why did she think it was a good idea to bring up children without a father? I almost felt as if she did not have a full right to her grief, because she wasn’t a real mother.

Then I kept reading. I saw tender details, like her memories of her son, the way she appreciated the tiniest pieces of his personality, the way she was unable to tell him he was dying, and blamed herself for not having the courage to do it. She was his mother. She suffered like a mother. She was as true a mother as any heterosexual, married, biological mother could be. Her grief was real.

To be merciful is to understand someone’s life, someone’s grief, as they understand it; not as you think it should be. To be merciful is to love Max’s broken, guilty mother, because she loved her son. Jesus have mercy.

(4/5) “I think I have post traumatic stress. I have so many horrible flashbacks. Two weeks after Max was diagnosed, he asked me if I’d be his Mommy forever. I said, ‘Of course I will.’ And he asked: ‘Even when I’m ninety?’ And I told him ‘yes.’ What was I supposed to say? And there were all the times he talked to me about the future. We’d talk about college. I just couldn’t tell him. God I was such a coward. I should have told him. I just couldn’t do it. Even toward the end. The day before he lost consciousness, I read his favorite book to him. It’s called Runaway Bunny. And the little bunny keeps threatening to run away. And the Mama bunny keeps saying: ‘Wherever you go, I will find you.’ Oh God, it was such a horrible way to die. He couldn’t speak or move or swallow or see. He basically starved to death. And the whole last week I’m whispering in his ear: ‘Let go, let go. Please Max, let go.’ My seven-year-old son. I’m telling him to let go. I mean, fuck. That’s not supposed to happen! And the whole time I never told him he was dying. I was such a coward. But he knew. He knew without me telling him. Because a couple weeks before he lost his speech, he asked me: ‘Mommy, do they speak English where I’m going?’” ——————————————————–Today is the last day of our fundraiser to aid Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. Over 65,000 people have donated and we’ve raised over $2.3 million so far. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. (See previous story). In fact, Max was supposed to be part of Dr. Souweidane’s first clinical trial but he passed away too soon. I promised Julie that all money raised during the telling of Max’s story would be given to Dr. Souwedaine and his colleagues to aid in their DIPG research. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating. Link in bio.

A post shared by Humans of New York (@humansofny) on

 

Image belongs to Humans of  New York on Instagram; I do not own this image.

 

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Making Peace with the Minimum

Barbie, Pregnancy, Doll, Education, Child, Childbirth

Remember the “Best Odds Diet” in What to Expect When You’re Expecting? As I recall from my anxious first-pregnancy reading, the idea was that you could eat junk food or you could eat healthy food, but if you really wanted to do everything you could for your baby, you would eat as healthily as possible. If you had a choice between a piece of whole-wheat bread and a piece of organic, whole-wheat, whole-grain, homemade, all-natural bread, why would you choose something with less nutritional benefit for your baby? Why eat something good when you could be eating something perfect? Didn’t you want to give your baby the best chance at perfection that you could?

I think I threw the book out when it suggested that it was okay to treat yourself once a month or so, but you should really try to make your indulgence something like homemade, fruit-sweetened carrot cake or a bran muffin. Sometimes this mindset is so obviously ridiculous that it’s easy to dismiss. But sometimes, it’s so subtle and logical-sounding that it can really get a hold on you. Do any of these sound familiar?

I just checked her diaper and it’s only a tiny bit wet, so I really don’t want to change it now. But now that I know, it would be wrong to wait–I’d be knowingly letting her tender skin come in contact with pee, and maybe she’ll get a rash! I better change it right now.

Maybe he has this inexplicable diarrhea because he drank water from that mud puddle! I could have stopped him but I didn’t. I figured “usually I stop him, but one time won’t be a big deal.” But what if this happens to be the one time that really mattered?

I’m sure I buckled her into her carseat correctly. But what if I didn’t, and she dies in a crash? I should go double-check, or triple-check. That would be the best thing for my baby. After all, I want to give her the best odds at survival.

Maybe you’re a normal person, and this doesn’t sound familiar. Or maybe you’re someone prone to worry, scruples, or obsession, and this is your life. But here’s a third option–maybe you’re normally pretty balanced, but right now you’re pregnant, or postpartum, or breastfeeding, and you’re not thinking logically. This is no way to live your life. It only ends in despair and self-loathing.

I recently saw a meme that rejected the mantra “fed is best.” Fed with formula is minimum, it argued, but breast is still best. Why would you want to give your baby the minimum when you could give her the maximum? Now, how you feed your baby is a lot more important that the little things I mentioned above, and breastfeeding is certainly best in itself; but even so, things get bent out of proportion when you elevate the feeding decision above everything else. If you look at it simply as a choice between what’s okay (formula) and what’s best (breastmilk), the choice is obvious. But that keeps you from weighing other considerations, like whether your mental health is up to the challenge, or whether your physical health is up to the loss of sleep. It’s very unlikely that you’ll be able to make a choice that’s optimal for every single aspect! Life just doesn’t work like that. Don’t let your mind bully you into thinking you have to make the best possible choice, every time. Don’t let the perfect be the enemy of the good.

7QT–Things That Help

Seven Quick Takes
I’m back! Welcome to visitors from This Ain’t the Lyceum. I’m hoping to begin blogging regularly again this week, at least until baby #4 comes along in August. I hadn’t really intended to write mainly about mental health, but I guess that’s the biggest thing occupying my mind these days. So here are a few practical things I have figured out, read about, or learned from therapists that have helped significantly with my depression and anxiety.

Dont Panic, Panic, Button, Stress, Worry, Fear, Stop

1.  Mood charting. I’m sure there’s an app for this, but I do best with pen on paper, so here’s a handy chart you can print out. This particular one includes categories for depression, anxiety, irritability, sleep duration, weight and medication. I alter mine to include whether or not I’ve had a nap (see #5), and specifically how much trouble I’ve had being patient with the kids. I found it very helpful to have the different categories separated, rather then under one big “was I depressed today” box to check. When I differentiated between anxiety and depression, I discovered that anxiety was a bigger problem than I thought, and began working on that. Another chart to help you identify trends in your routine: The Well Mom Checklist asks some basic questions to help you take control of your day, like “have I eaten nutritious food today? Have I let others help me today?” It’s aimed at postpartum moms, but you can easily alter it to fit your situation.

2. Self-esteem exercises. I know, it sounds awful. But it works. I’ve written about these before, but it bears repeating: you believe it more if you say it in so many words, especially out loud. I’m also supposed to be starting each morning by saying “yippee!  Another day with Rosie!” but I confess that I haven’t worked my way up to that yet.

self-esteem

It helps when you have a nice brother who adds his own note at the bottom.

3. Make a list of everything you accomplished today–and don’t forget the little details! For example, don’t just write “took care of the kids;” write “fed the kids breakfast, changed their clothes, read books to them, brought M. to school, made sure he had his backpack and lunch, put the baby down for a nap, washed her face, said night prayers with them.” This is a really wonderful exercise to do at the end of a long day when you feel like you’ve accomplished nothing.

listofaccomplishments

4. Make a little list of small tasks you can do in your spare minutes throughout the day, to give you little boosts of satisfaction in your accomplishments. With 3 small kids, I found that my free time comes in 5-minute portions, which I generally spent (a) wasting on Facebook, (b) running around thinking “what should I do? Should I cook? Should I pray? Should I clean? Should I nap?” until the kids demanded my attention, or (c) starting some big project, and then inevitably being frustrated when I had to stop it two minutes later to take care of the kids. My therapist suggested a way to make the best of these moments without stressing out:

  •  Do something small, something you know you can get done in a few minutes, so you can feel like you accomplished something. Make a phone call, sort the socks, take the meat out of the freezer, answer a quick email, hang up all the jackets, etc.
  • Do something big, but start out with the understanding that you’ll do it one step at a time, so you won’t get frustrated when the interruptions start.. First I’ll take out my dinner recipe. Next time I have five minutes, I’ll get the ingredients out. Next time, I’ll chop the vegetables. Next time, I’ll grate the cheese….
  • Just sit and be present. Give yourself permission to rest for a couple of minutes, and focus your mind on the information your senses present to you, without judgement or analysis. This takes a little practice, but it works.

5. Naps. At various times in my life, a daily nap has been a necessity, not a luxury. I sleep for about two hours every day while the baby and the 3-year-old nap, and guess what? I don’t feel guilty about it! I used to, but that was before I started paying attention and noticing that every day I didn’t take a nap was a day I was cranky, mean, weepy, and depressed to the point of despair by the end of the day. When I started thinking of a nap as a mental health necessity, it became easier to make it part of my daily routine. Now I take a nap even when I don’t feel particularly tired, or when there’s something else I’d rather be doing, because I know it’s not being lazy, it’s essential self-care.

6. Bare Minimum Mode. I got this idea from the wonderful Jennifer Fulwiler. The idea is that you’re not just sliding into chaos, but purposefully choosing to cut out some non-essentials during certain seasons of your life. As Jen says,

I found it helpful to articulate those activities that were just too much for me right now, cut them out, and embrace that as a proactive strategy, rather than walking around feeling stressed about what wasn’t getting done.

Here’s a post she did with some more details. My version of Bare Minimum Mode includes using paper plates and plastic cups, and not worrying too much about having three, distinct balanced meals–as long as we’ve eaten something healthy today, and no one’s hungry, we’ll call it good.

7. A nightly routine. Every night for the last week, as soon as the kids are in bed, I go through this routine:

  • chart my mood for the day
  • check the “Well Mom Checklist”
  • take five minutes for quiet mindfulness/being present

This has surprised me in two ways: (1) it feels wonderful and really helps me relax, and yet (2) each successive day it becomes harder to do. So many excuses!

Bonus: don’t skip your nightly routine in favor of staying up past midnight to argue about gay marriage on Facebook. That would be bad.

Please see Kelly at http://www.thisaintthelyceum.org for the rest of the Seven Quick Takes! I missed you, and I’m going to do my best to begin blogging regularly again.

Making Decisions out of Fear and Guilt

Here’s a wonderful article, from the blog A Knotted Life, about how to be at peace with your decision to not homeschool.  My husband and I were both homeschooled for many years, and we’re very grateful for it; but we’ve decided to send our oldest child to kindergarten this fall.  I had always assumed that I’d homeschool, but the closer it got, the more I panicked.  I love teaching my son, and I had happily anticipated all the fun homeschooling we’d do–the field trips, the nature walks, the crafts, the science projects–but I had to reconcile myself to the fact that I am just not up for it right now.  With a small, crowded apartment, a busy schedule, and a toddler and a newborn, I knew that our homeschooling days would be filled with tears and yelling; and more importantly, I knew myself well enough to know that I was prime bait for homeschooling guilt.  I also knew that, if my son turned out anything like his parents, he would need a lot of help overcoming social awkwardness, and he wasn’t going to get it being homeschooled by us.  (I’m not trying to perpetuate the “homeschoolers don’t do socialization” myth here, but it’s important to note that, while most homeschoolers are socialized just fine, some really aren’t–and that includes me and my husband.)

Even after realizing all these things, I still felt compelled to homeschool.  Most of my friends are homeschoolers, and of course I’ve heard all the public school horror stories; so I felt horribly defensive any time it came out in conversation that I was considering public school.  I escaped this mindset mostly through the example of my sister, who wrote about her decision to stop homeschooling here, and chronicled some of her kids’ positive experiences with public school here; but it was only recently that I made a final and peaceful decision about it.  I realized that I had been feeling forced to choose homeschooling out of fear and guilt.  Instead of thinking of homeschool and public school as two neutral options to choose from, depending on my family’s situation, my son’s personality, and the quality of our local schools, I was thinking of homeschool as the default thing, the really good and wonderful thing, and public school as the not-so-great option I could choose only if I had reallyreallyreally good reasons.  Once I removed fear from the equation, I realized that my reasons for choosing public school were more than valid.

I have recently realized that many other parenting decisions I’ve made have been made out of fear.  I had always heard so much about how modern society fears the sacrifice and lack of independence that comes with having children, and how many people contracept because they are afraid of what parenthood will do to their lives; but I also realized that the opposite problem is possible too: I was afraid to even entertain the idea of having a small family, because I was so afraid that I would be judged, or I would not be living up to my faith.

Now obviously, fear can be a healthy thing, when we’re talking about fear of something intrinsically evil: fear of sin, fear of Hell, fear of offending God.  But when we’re talking about a decision that is morally neutral in itself, such as the decision to have another child, it is not okay to be motivated by fear.  Fear of falling short of the ideal picture of motherhood in my head led me to choose breastfeeding over formula, even when breastfeeding was becoming a problem for my health and my family dynamic; it led me to resist painkillers during childbirth, even when they wouldn’t have hurt the baby, and they probably would have helped me calm down; and it led me to feel horrible guilt over my inability to even imagine having a large family.  Only recently have I realized that I should not let guilt be the deciding factor in the way I live my life.  (And I’m not saying that I don’t feel guilty anymore!  Just that now, usually, I recognize it for the seductive falsehood that it is.)

These realizations probably have less to do with my spiritual state than with the fact that, 3 kids into this, I don’t really have the energy left for any unnecessary guilt.  The hell with it.  And let me tell you, nothing feels so good as stepping out of the box that you have guilted yourself into and finding out that you–not the internet, or the tricks your mind plays on you, or the perceived judgement of your peers–know what is best for you.

P.S.–when I was re-reading my sister’s articles, I discovered one more that pretty much says what I’m saying here, except probably better. Here it is.

 

“When Did I Get Like This?”

When I was pregnant, too exhausted to read anything of substance, and desperately in need of comic relief, I searched around on my husband’s kindle and grabbed the first mommy humor book I found: When Did I Get Like This?, by Amy Wilson.  It wasn’t the self-deprecating, witty stand-up routine I was expecting: instead it was the vulnerable, candid memoir of a modern professional New Yorker, learning everything about motherhood the hard way.  This poor lady got sucked into all the popular pregnancy and motherhood myths, and had to figure everything out by herself.  Take her experience with her first pregnancy:

Today, everything from pacifiers to preschools seems to be marketed to mothers in one overarching way: this product, the ads say in one way or another, is chosen by mothers who want what is best for their children.  Well, who doesn’t want that?….But…should you ignore this new and helpful parenting suggestion, you are in effect saying that no, you do not want what is best for your children….With every step we mothers take these days, we are aware that there is only one right and true path that we should follow, a ‘better’ way to feed our baby, a ‘best birth’….

Her guilt-wracked pregnancy, complete with detailed birth plan and the infamous “Best-Odds” diet from What to Expect When You’re Expecting, ended with a revelation: doctors are not the enemy.  Her doctor, on hearing her desire to avoid fetal monitoring and stay mobile, had a gentle suggestion: “‘You may find, though, as many of my patients do, that once you are admitted to the hospital, you will be happy to lie down.'”  She comments, wonderingly: “Dr. Merman did not seem dismissive when he said this, neither rigid nor patriarchal.  He seemed, merely, kind.”  Sure enough, lying down with an epidural 11 hours into labor feels awfully good.  But when the baby is finally born, she confesses:

[Before the birth] I thought…I would become another victim of a needlessly meddling medical establishment.  But in the end,…I had an episiotomy, which the books warned me would happen to any mother who didn’t stand up for herself,….I had also had an epidural, which the books warned were foisted on all laboring mothers…[T]here was a tiny part of me thinking not of how I had made it through a twenty-hour labor to deliver a perfect baby boy, but of how I had fallen short.  I was a quitter….But lying there holding my son, I could also see that it was screwed up to regard my caregivers’ attempts to alleviate the pain and inertia of…a first labor, as the machinations of the enemy.  They had only been trying to make me feel more comfortable, trying to deliver my baby to me as soon as possible, as safely as possible.  And they had.  That could not have been wrong.

In the hands of a perfectionist like me, the birth plan was the snake in the garden, dangling the apple of an idea that there could be a ‘better’ or a ‘best’ birth, one that could in any way exceed the happy ending of a healthy baby, safe in its mother’s arms, both of them whole.

There’s a lot of other great bits in this book–I plan to write a bit more of a review later–but for now I’m going to leave it here.  I think this is such an important insight.  Sure, you have to look out for yourself, and there are ignorant or mean doctors out there; but what a horrible burden to put on a new mother, to convince her that she is the only one capable of making sure everything goes perfectly, and she had better live in suspicion and guilt for 9 months to make sure she doesn’t mess it up.

7 Quick Takes: Kids’ Shows that are not Horrible

Seven kids’ shows that are not horrible, in order from “shows I can’t help sitting down and watching with the kids” to “shows I don’t mind in the background” to “shows I’m not crazy about, but are remarkably unobnoxious.”  These are all available on Netflix or Amazon Prime.

1. Pocoyo


I was skeptical, but this is pretty hilarious. Fun soundtrack, ducks who can dance like Michael Jackson, and narration by Stephen Fry.  Here’s a pretty creative episode featuring Ride of the Valkyries:

2. Peep and the Big Wide World

Okay, I might have a weakness for cartoons with little segments of cute kids doing science experiments–or ducks with hats?–but I really enjoy watching the egotistic, ridiculous Quack (who reminds me a bit of the Humbug in The Phantom Tollbooth, or maybe Toad in The Wind in the Willows, the sarcastic Chirp, and the enthusiastic Beaver Boy, whose teeth get bored if he doesn’t have something to chew on.  Tongue-in-cheek narration by Joan Cusack and education that’s not too heavy-handed make this easier for grown-ups to watch.

3. Tinga Tinga Tales

This is like a lovely children’s book–classic stories, moral endings that aren’t too heavy-handed, and beautiful design.  I love the animals’ different accents, too.

4. Mighty Machines

I learned a lot from this show.  Every machine you can think of, from construction vehicles and race cars to factory robots and salt mine jeeps, explains their job in random hokey accents.  They sound just like you do when you’re playing with your kids and speaking in persona garbage truck: “hey, look how much garbage I can push!  Boy, does that stink!  Have you ever SEEN this much garbage, kids?”  I can’t find a link of the steamroller with the Louis Armstrong voice singing “I roll up, / I roll down, / I push the dirt / into the ground, / oh yeahhh,” so here’s the glorious intro:

5. Kipper

This is just a sweet, gentle show.  It’s great for kids who really need to calm down but refuse to nap.  Narrated, believe it or not, by Martin Clunes of Doc Martin!

6. Wonderpets

Okay, I find the animation in this very freaky, and it’s pretty heavy-handed.  But it’s also kind of sweet, and pretty funny.  And we sing the song all the time at the deli.  What’s gonna work?  Teeeeamwork!
7. Handy Manny

Okay, hear me out!  This looks like the usual Disney obnoxiousness, but it’s really not too bad.  My favorite parts are that Manny speaks with a pleasant, adult voice, instead of a whiny, hyper kid’s voice, and that the Spanish words it teaches are integrated into the dialogue naturally (instead of shrieking, Dora-style, “CAN YOU SAY ‘HOLA??!'” Manny will say “today we’re going to la playa–the beach.”)  Much less annoying, and much more educational.

I’ve also been pleasantly surprised to find that Reading Rainbow is much better than I remembered, Sesame Street is hilarious and not at all the PC, Cookie-Monster-now-eats-kale travesty people freak out about, and Curious George is just as delightful and imaginative as the books, if not more. What are your favorite kids’ shows?

Hop over to This Ain’t The Lyceum for more Seven Quick Takes!

Sleep vs. Jesus

To tell the truth, I’ve never really gotten the point of fasting.  I know it’s supposed to help you detach from material things, but with me it tends to have the opposite effect: I spend my whole day thinking about food.  But I had a little insight into it a few weeks ago, when I was up late with the baby.

Being up by myself in the silence of the night makes all my anxieties louder, and I was praying for mercy when I suddenly felt the presence of Jesus.  Nothing really specific or profound–just a comforting presence.  Baby fell asleep, and I lay down in bed, feeling peaceful.  Then she started to fuss again.  My first reaction was “ah, I can get up with her and go out into the quiet living room and feel that presence again!”  But my second reaction was “or…I could stay here in this warm bed.”  I was pretty surprised at myself.  It wasn’t just some potential spiritual experience that was competing with comfort and sleep; it was something that had already happened, and it felt wonderful.  But it still had trouble overriding my desire for bed.

I’ve always been able to see that my weakness for too much food, or too much sleep, was a bad thing; but this was the first time I saw it clearly competing with my spiritual good.  Because I’ve formed the habit of lingering in bed, that habit kicks in even when I really want to get up and do something else.  If I “fast” from staying in bed–maybe by getting up immediately every morning, at St. Josemaria Escriva’s heroic minute–perhaps I’ll be able to build a habit of self-denial instead, and I’ll be ready next time Jesus comes.