Talking About Hard Things

Ever since my oldest daughter died last fall, I've become painfully aware of just how pervasive "death talk" is in our language. We say things like, "That kills me" or "I could have just died" or "I could have killed her for saying that." We all treat death a little flippantly, and don't even hear ourselves do it.

I recently wrote about disturbing ways in which the U.S. society today interacts with death in the post "Death As Entertainment." The games and horror movies tend to reinforce our desire to make death impermanent, less serious, and easier to ignore or push to the back of your mind. Many of you wrote comments sharing my distaste for this.

And then a friend wrote a very intriguing comment on my first Not Me! Monday post, in which she describes the struggle she faces in talking seriously with her children about hard things.

I think Finding Nemo was excellent but those were things far removed from us (the deep ocean) and I could explain them. But to explain the murderous heart of an insane man? I just don't know.

How should we talk with our children about hard things, like death and cruelty and cancer and brain injuries and mental illness?

It would be very easy to say to myself that avoiding those conversations is the best thing for my children. In fact, I've done that in the past.

And I don't think I'm alone. Many of us parents attempt to insulate our children from the existence of bad things. We don't take our children to funerals or visitations. We avoid watching or listening to the news in front of them. We don't drive through bad parts of town where our kids might see how the less fortunate really live. We have conversations about those who are sick or having surgery in private or in hushed tones.

Is insulation a good approach? It is easier, certainly, than trying to explain to a child what happened clearly but without going overboard, and then answer their questions. But is it better?

Since Elli, our firstborn daughter, died last year, we've had countless conversations with the kids about death. They wanted to know what happened, why it happened, where Elli is now... And that last question has been particularly confusing for them. They knew that the ambulance took Elli first to the hospital, then they saw her in the funeral home, and now she's buried in the cemetery... but we believe in an afterlife, so her body is in the ground but her spirit is with Jesus? Shew! That's enough to make an adult's head spin!

But they ask really good questions. Often it's the same question, over and over (especially with Little Girl), but I'm glad they are talking. (I ask the same questions over and over too!) And they seem to grasp at least some of our stuttering answers.

And they accept easily (at least, at the ages they are now), and more easily than I do, the answer "I don't know."

Several years ago we read the book "Teach Them Diligently" in a small-group Bible study about raising children. The author, Lou Priolo, talked about becoming aware of and interacting with our children in the "milieu of life" or in what happens naturally, every day. If I try to keep my children protected from the bad things in life, we won't have those natural opportunities, those teachable moments, to have really open and honest conversations about them.

And they won't experience the natural peeling back of the artificial that such events brings. There's nothing like having a classmate or family member get critically injured or die to remind a person of their own mortality. And that, at least temporarily, points out how foolish it is to obsess over having the newest cell phone or prattle on and on about who dissed who in school or to fight with your parents about taking out the trash.

(Incidentally, I asked Big Boy to carry a bag of laundry from the bottom of the stairs to the washing machine, a distance of oh about 50 feet. As he dramatically dropped the bag to the floor, with a sigh far beyond his years, he declared, "So that's what it feels like to be a slave." I took advantage of the "milieu moment" to properly define the words "slave" and "help." I am not sure if I avoided lecturing and engaged in an actual give-and-take though -- turns out actually conversing with a child instead of preaching to them take a lot of practice.)

So I'm trying to find a balance between the two extremes: treating bad things flippantly, like they're not so bad; and pretending they don't exist at all. I'd love to hear from you on this. How do you approach the tough things in life with your children? What has worked and what, if you don't mind sharing, has not?

Taking Care of (Puppy) Business

As you may have noticed, I've been away from the blog all week. We've been busy with summer fun: swimming lessons, silliness, shopping, silliness, taking walks, silliness, and playing outside.

Did I mention silliness?

I love how easily the kids make us laugh!

However, I seriously underestimated how much time it would take to keep a puppy from devouring everything located less than 36 inches from the floor.

I underestimated how exhausting it would be to make sure bedroom doors are always closed so the kids' clothes and shoes and toys don't get shredded.



I underestimated how much vigilance it would take to catch or prevent piddling and pooping in the living room.

And I underestimated how directly and actively I'd need to supervise all child-dog interactions to keep things from getting out of hand.


My new hobby is finding non-destructive yet time-consuming hobbies for Xena. And picking everything off the floor fifteen times a day.

It just doesn't leave much time for writing. As I get a spare second here and there, I'll try to share some here. Hopefully we'll be back to regular blog programming when school resumes.

Not Me! Monday, Vol 2

When painting Little Girl's finger- and toe-nails bright pink, Little Boy became very interested in proceedings. To the point of begging, pleading, then insisting on having his toes painted too.


I most certainly did NOT paint my young son's toenails a (nearly) invisible shade of pink. Not me!


When Little Girl forgot to use the bathroom at home before I took the kids swimming, I did not over-react when she had to go as soon as we got to the pool because of my irrational disgust with pool restrooms (Is this sentence long enough yet?). (Or maybe it isn't so irrational - I did work as a lifeguard one summer and probably know too much for my own mental health.)


And then I definitely did not start ranting when Little Boy splashed his hands in the water on the floor in front of the toilet Little Girl was using, and then smeared the nasty water all over his face! That crazed-looking mother frantically scrubbing her toddler's already-sun-screened face with soap while scolding the Little Girl about obeying mommy and germy bathrooms? Absolutely not me. No way.


(And Little Boy did not catch a summer cold within two days of the aforesaid pool incident. No sir-ee. No connection whatsoever.)

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Death as Entertainment

I'm really struggling with the place death has, and does not have, in our society right now - in the USA in the year 2009. So I'm going to think "outloud" here for little while.

On the one hand, I think that Americans try our best to avoid serious, real discussions about it. We'd like to pretend that death is not an inevitable part of life. Trying to look and stay young and healthy has become a religion in itself. And I suppose the reason is that we're uncomfortable with the uncertainty of what lies Beyond, and with what the ramifications are of whatever lies Beyond.

For all the dogmatic positions on it out there, both religious and non-religious, no-one living actually knows, empirically or experientially, what happens when you die, or afterward. Many say they know, but it's always a matter of faith. It's one of those things you can't prove scientifically. You can't send scouts ahead to collect stories, photos, and artifacts to bring back.

But on the other hand, death is everywhere. It's depicted in increasing detail and gore in movies and on TV. It's celebrated on Halloween. It's trivialized in the many games we play, especially in online and electronic gaming. How is it that we are so uncomfortable talking about death as a real event in a person's life, but yet we will play at it all day long?
(Image from the Playstation 2 game "Death by Degrees")

I was taken aback when my 6-year-old returned from playing at the neighbors' and reported his 8-year-old friend created him a character named "Death" for some wizard PlayStation game.

Our family has faced death. For real. In our home. It is final and it is serious. A person who was an integral part of you and your life just disappears one day. Never ever to return. It's actually nearly impossible to wrap your brain around.

Maybe I'm totally off-base. Maybe playing games and making up wild and gory stories about death is our society's only comfortable way of actually acknowledging it. Maybe I should just chill out and stop analyzing the effects on my kids, especially since they have experienced the actual death of a sibling.

But no. I don't want my kids to play in such a cavalier way with the concepts and words surrounding death. While I want them to be familiar with the real thing and not intimidated by visitations, funerals, and the cemetery, I think there's such a thing as too familiar, too casual.

I want my children to be sobered by death, grasp it's permanence, and accept the reality that we only have a limited amount of time in this life. If they shoot dozens of characters on a video game every day and watch movies in which people are slaughtered in myriad creative ways, won't they loose that important soberness and seriousness? In a game and in the movies, people "miraculously" resurrect. You can always start over. Not so in real life. Once you're dead, you're dead. There's no restarting the game or replaying the movie. If you can at least begin to grasp that, I think you will be equipped to live well.

Xena, Warrior Princess (in training)

Not Me! Monday

I've been reading MckMama's blog for awhile now, but haven't had remembered anything noteworthy to blog about on Not Me! Monday. Until today.

When taking our three children to see the new animated movie "Up" (which I highly recommend for it's beautiful portrayal of marriage for the long haul and it's genuinely funny and totally clean humor), I did not accidentally spill 1/4 of our ridiculously expensive movie theater popcorn on the floor before anyone else had a chance to eat any.

And then, I most certainly did not ignore Little Boy when he decided to claim that portion as his own, and proceed to eat it all off the floor, nearly every single kernel, during the movie. Not me!




Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Conversation-Killer

Being a bereaved parent can be very lonely. You've been through what most people believe is one of the worst things anyone can experience, and you're changed forever. You're trying to figure out who you are now that you aren't the you of Before.

Someone asks, in casual conversation, "How many children do you have?" Suddenly, what was once an easy question is now loaded with considerations. I find myself doing quick calcuations in that moment: What is the likelihood I will ever see this person again? Do I have any inkling of how they would respond to the full truth? Is this just polite small talk?

If I don't think I'll see them again, if they seem uninterested, if this is standing-in-line, just-passing-the-time talk, or if anything seems unsure, I usually keep things very simple. "Three" I say. "Two boys and a girl."

If this could the beginning of a longer or deeper relationship, the person seems genuinely interested and willing to stick around to talk awhile, or something just seems sympathetic about them, I'll answer more fully. "Four" I'll say. "Two boys and two girls, but our oldest girl passed away last year."

Even still, my calculations can be wrong. And there's no conversation killer quite like death.

Sea Water Sinus Rinse

I recently read Anne Lamott's book "Traveling Mercies," which is an entertaining collection of essays on her journey to faith and wholeness. It's very funny and very wise, all mixed together into a delightful snapshot of a real life, cellulite and all.

I just so happened to read the chapter/essay entitled "The Aunties" on the first day of our Atlantic beach vacation this summer. She dubbed her middle-aged woman's dimply thighs "the aunties" during a trip to the Mexico beach. I won't say any more than that -- you really must read the entire hilarious story. But I think you definitely experience that chapter the best while sitting on a beach with your own two aunties facing down the shapeliness of youth.

Anne also described the sound of the waves as a washing machine for our minds. And did I ever need a laundering. Miraculously, despite accompanying our three young children to the beach this year, each of us received the gift of time to just sit and soak in the sound of the surf.

I thought my heart would burst just watching my children race in and out of the waves, dig in the sand, and fly kites with the uninhibited abandon of youth. They needed this vacation as much as we adults did, after enduring years of hospital stays, doctor and therapy appointments, x-rays and labs, surgeries, and Elli's death. I am so thankful they had this brief time to just be normal kids. (Though Little Girl was a little teary the first day we arrived because she missed Elli. Thank you God, for my sensitive Little Girl. Help me be sensitive to her.)

I even got some therapeutic floating in.

When I was a child, our family took vacations to the Pacific beaches in southern California. My sisters and I would spend whole days body-surfing, jumping through waves, and building massive sand castles.

[Incidentally, unless my sense of smell has been dulled over time (which is highly possible, as I'm 25 years older now), it seemed to me that the smell of the Pacific was much more briney, more salty, than the smell of the Atlantic. I wonder if it's just me?]

On our last day at the beach, I finally decided to throw caution to the wind and get thoroughly drenched in salt water. I took our boogie board out into the surf to ride some waves in. Scott had done this a couple different times and enjoyed himself immensely. Other vacations have required extreme effort from us adults to keep the kids from drowning or wandering off and getting lost or getting sunburned and to help Elli participate to the fullest extent possible. This translated into no chance to step away and "play" ourselves. This year, we've begun to enjoy that sweet spot where the kids can entertain themselves somewhat independently and yet still stay close by.

I've always loved to participate in fun rather than just passively observe. When I discovered boys, I also discovered two kinds of girls -- the ones who stand or lay around trying to look their best at all times in case a boy looked their way, and the ones who get out there and have fun, regardless of how it messes up their hair. I decided early on that any guy I was interested in would like a girl who gets out there and has fun, who finds disheveled and windblown attractive. (And also who likes a girl who enjoys to eat. But I digress.)

As soon as I got thigh-deep in the water, jumping over the breakers like the me of yesteryear, I flashed back to those blissful summer days in the Pacific. Fighting against the current that tries to carry your body away down the shore. Floating up and down, watching for a wave with just the right curl at the top.

Then a wave caught me off-guard, the board curled up under me unexpectedly, and I tumbled end over end in the rough water. I got sinuses full of sea water (not unlike a Neti-pot rinse, only with a more abrasive quality) and a cut on my ankle. Very undignified for a mother of four.

Incidentally, the proper mother-of-four swimsuit is not ideal for body-surfing. You know -- the kind with the skirt that hides fuller hips and a stomach that will never look the same after carrying four babies to term. But who cares about such minor details when you're surrounded by people of all sizes and shapes, covered with tattoos, in skimpy suits or ratty old t-shirts? After reading "The Aunties" I was feeling very liberating from all that body-conscious stuff anyway.

So I tugged my suit back into proper position, reassured Big Boy that I was fine (he had seen my ungraceful tumble and was a bit alarmed), grabbed up the boogie board, and headed back out thinking all the while that I really need to start swimming for exercise again.

I think of Elli so often that it's second-nature -- I don't even consciously realize I'm thinking of her. Clinging to the board as I bobbed in the water beyond the breakers, I thought of her and knew she would have loved body-surfing. I imagined floating next her, paddling side-by-side as we caught a wave in, laughing and splashing and catching loads of sand in our swim shoes and suits. I hope that wherever she is now, she's enjoying things like this... only better. Only perfect.

Anger (A continuing series on grief)

Every grief book I've read talks about the stage of anger. Some authors assert that everyone goes through every stage, but to varying degrees. Others contend that people don't necessarily go through each stage or in a specific order.

All that to say that I've felt anger infrequently... so far. But when I have, the intensity is like the bursting of a dam.

Elli had sat on a waiting list for 6 years to receive something called a waiver. This is a Medicaid assistance program for individuals with disabilities who live within families who earn too much to qualify for Supplemental Social Security and Medicaid. Waivers support families who desire to keep their special-needs child in their home. Doing so is extremely costly and bone-wearying and unsafe without the help of in-home aides and/or special equipment. And without help, most families eventually have to place their loved-one in an institution for the mentally or physically disabled. (Those institutions freak the living daylights out of me -- all I can think of is how vulnerable our Elli would have been to abuse and neglect. No matter how exhausted I got, I never once considered placing her in one. I'm sure some homes are run by genuinely caring and excellent people, but I've just heard too many nursing home horror stories.)

Our state has a handful of different waivers, but this is the one that Elli needed, that we needed to care for her in our home - in her home. It provides a medical card in addition to financial assistance for such expenses as installing ramps into a home, modifying a bathroom to be wheelchair accessible, and buying the equipment needed to safely lift and move an adult-sized person by yourself.

We learned in July of last year that Elli was finally finally being awarded this waiver. The waiver would go into effect mid-August. It would allow me to hire someone to help me get her ready for school in the morning. This was a tremendous answer to prayer, as I had been wracking my brain for a strategy to safely and sanely manage two different bus schedules and pick-up locations plus four young children each morning.

The waiver also provided funds to properly modify our van for a wheelchair. Actually using the funds for this specific task proved extremely difficult though-- I ended up spending hours researching how waivers were handled throughout the state, making multiple appeals, calling my state rep to state government, and finally making my case before a panel in our county. They did eventually agree in our favor, after a tremendous expense of energy and time and frustration.

So, one weekend in October, Scott and I drove our van about 6 hours away to a company that lowers floors and installs ramps.

Then. The next weekend. Elli died.

She had the waiver all of a month and a half.

When all that smacked me in the face one day, I felt anger for the first time in this whole grief process. Blinding, red-faced, fist-clenched, can't-breathe, whole-body sobbing anger.

What was the point of that, God? Why would you make us wait for so many years? And then, AND THEN put us through that whole crappy appeals process to get the van modified for NOTHING? What kind of cruel joke was that?

But even in my rage, I could sense a still small reminder in my soul pointing out that the work I did to win our appeal would change the way our county handled things like this for every other family. That I might have been the only parent in our county with the time, energy, and knowledge to do the research and make the case that could change their minds. And that other children and other parents would enjoy an easier and more family-friendly process now.

Thinking of that didn't take away the anger altogether or immediately, but it did throw water on the fire.

The other time I encountered anger occurred within our dealings with our life insurance company. We had tried to purchase a policy on Elli a few different times, but her health history always precluded that. We finally learned about something called a "rider" which could be added to one of our own policies. We were told it would cover all of our children, no questions asked, and could be converted into individual policies for each of them, no questions asked, when they reached 18. It was as good as we were going to get. We felt reasonably confident that the several thousand dollars it would provide would cover the funeral, burial, and final medical bills we anticipated.

Then, when Elli died, we uncovered much deception. They had removed Elli from the rider without notifying us. After months of appeals, retelling our story, channeling our inner detectives to find the agent who sold us the rider in the first place, and finally threatening a media smear campaign, they agreed to pay the meager amount.

But the whole thing felt like rubbing acid into a fresh, open amputation. It made the unimaginable pain hurt even worse, and I hadn't thought that was possible. And we were both angry. (I feel it necessary to point out that Scott never gets angry. It takes something like this situation to drag that emotion up to his surface.)

I have learned that being angry is a choice. I don't like to be angry, I don't like how it feels, how it makes my stomach churn, how it makes everything I do seem more frustrating, how it affects my family. And even in the face of injustice (real or perceived), I have a choice with what to do with that emotion, with whether I take my frustrations out on others or take them to God.

In these two scenarios, I think that part of the anger I felt towards our insurance company was what the Bible calls "righteous anger." It was an appropriate reaction to their deceit and irresponsibility. It also gave us both strength and determination to keep after them.

The part of my anger that became vengeful? Not so much. (In case you are concerned, I have let go of that anger. The company finally did the right thing, so we're moving on.)

The anger I felt about the timing of Elli's waiver... I don't know. The whole thing still doesn't seem fair, but I suspect this is one of those "Who are you, finite human, to judge what is and is not right in the big picture?" situations. I do know that this is another situation in which I have a choice. Mostly, I choose to not think about it. I know, because I've seen little starts of this in myself before, that if I choose to nurse and coddle anger towards whomever, it will turn my soul into a wretched bitter shell. God help me stay far away from that path!

Gains and Losses

When Elli was a baby, we began to discover the full breadth and depth of both her medical challenges and her physical disabilities. We I went through a form of grief over her loss of a "normal" life and our loss of a "normal" girl. Gradually I learned to focus on what she still had, what she could do, what we could enjoy with her.

However, I would find myself revisiting that grief every so often. Every time we went through an evaluation, whether for a new therapy or for school or what-have-you, "they" would examine and list all her losses. Staring at the long, black-and-white list was, to be totally honest, depressing. I would struggle to regain hope for a couple of days after those.

And sometimes (not always, and less as time went by) I grieved again when I would see other children her age doing something that Elli could not. I often watched her peers and tried to imagine what Elli would look like, sound like, act like if she could do ____ (sing, act, dance, swim). Or even what she would be like just walking around our house as a typical child.

But I began to learn, however, was that while Elli and we had indeed suffered profound loss, we also had gained profoundly, too. We all gained an acute appreciation for each new accomplishment, no matter how small... or fleeting. We worked for years to teach Elli to drink from a straw cup, and we appreciated that ability every day she was able to drink somewhat independently. She lost that ability about a year and a half ago, and I mourned that loss all over again.

But we also gained a massive support system in the dozens of people we met because of Elli. She introduced us to incredibly smart and talented medical personnel, to motivated and skilled therapists and teachers, to other amazing children trapped in bodies that don't work. Over the years, many of these people became friends, mentors, and encouragers. Their boundless energy and their tireless efforts to help Elli master new skills was an invaluable gift to us. Without their knowledge and their willingness to teach both Elli and us, we wouldn't have made it.

So, in the last few years, I had become fairly content with our unusual life. I never prayed for Elli to be healed -- I had accepted her condition. I decided to focus on being a good mother for her (and I was never content with how I did in that area!).

When Little Boy was born, we gained more than a fourth child. We gained more than another set of doctor's appointments and surgeries and medications. We gained the support of many more people.

A wise friend who also walks this road helped me see that sometimes God does give you more than you can handle.... alone. Sometimes He gives us more than we can handle to force us to learn to accept help. He created us to live within a community, in which each person uses their strengths to help those with complimentary weaknesses.

Those 15 months between Little Boy 's birth and Elli's death were the toughest and scariest 15 months of my life. Scary because I was over my head and terrified I would screw something up so bad someone would get permanently damaged. But in those months, I learned new lessons in humility -- humbling accepting help with home-making, meal prep, and children. And I gained new and deeper friendships, in addition to a much greater appreciation for the church as the body of Christ.

Then we lost Elli.

Losing a daughter is shattering. But what has shell-shocked me even more has been the loss of relationships with nearly everyone associated with her.

We lost all the speech, physical, and occupational therapists that had worked with Elli for years. They had watched the other children grow. They had celebrated Elli's accomplishments with us. And prayed for her during her many struggles in the hospital. But we rarely see them anymore.

We lost contact with many many staff at the children's hospital. We knew phlebotomists, nurses, technicians, and doctors by name, and they knew us. I don't even know how many of them know she is gone. And I don't have the heart or the strength to go talk to them. Surely they can guess what happened since she just disappeared...

We lost the entire community of Elli's school -- daily communication with teachers, aides, school staff, families who live in the other zone, bus drivers. Elli attended a school outside our zone because it was the best one for her. But our other children will attend a different school when they reach Elli's age. So we've really lost that school.

We also lost her class and classmates. We visited on the last day of school this year, to say good-bye. We visited the special education staff (they even dragged out this ride-on pony that the kids LOVE to play with when we showed up!), the nurse, and her classroom. Everyone there was so very sweet and made us feel welcome. Her classroom teacher and classmates dedicated their year-end slide show to Elli. But I will admit that I didn't manage to hold it together the whole time. It is so strange to close that chapter of our lives (though I know Little Girl will ask to visit the pony again next year!).

Graduating from third grade is a big deal in our school district because they move up to the fourth through sixth grade building. But each milestone they, the Class of 2018, celebrate (as they should) is one more that we have lost.

In many ways, this is a loss that keeps losing.
...I will always watch people of Elli's age and imagine what she would have been like at that age.
...I will always think things like "She would have started middle school this year," or "She would be taking driver's ed" or "I wonder if she would have gone to the prom?"
...We will always miss her contagious delight during the singing of "Happy Birthday."
....Hearing any song by Chicago or Veggie Tales or "I Got You Babe" by Sonny and Cher will simultaneously stab and warm my heart.

Her absence is an unrecoverable loss... for now.

We Have a Name

For the past few weeks we've been agonizing over the name for our new puppy. Little Girl has been avidly campaigning for "Rosebud" or "Princess Rose," while Big Boy has been tossing out random bizarre suggestions like "Bacon," "Principal," and "Nickel." Little Boy tests each name out and so far has been able to say most of them.

Every suggestion Scott and I have made has been met with a disgusted "Nooooo" or "I don't like that!"

Until tonight. At dinner, Scott told the kids the story of a superhero who is also a princess who is also a warrier. She is tough and independent, a princess, and compassionate and works for justice and protects the weak. She's the whole package.

The kids got quite intrigued by this character. When Scott asked, "Do you want to know her name?" they were hanging on every word.

It was a slam-dunk. We have finally found a name we all like!

So, without further ado, all me to introduce our new puppy, Xena Warrior Princess. (Xena for short.)