Losing Lisa

Lisa Priano, a friend from my online parenting forum, passed away on September 25, 2007. She was 37 years old and leaves behind a husband, Greg. She had recently been declared cured of leukemia, but the final round of chemo, intended to assure her continued health, came with an unexpected toll on her lungs that eventually made them unable to absorb oxygen. After a short hospitalization and a few days in a medically induced coma, she slipped away quietly, surrounded by her family. She was preceded in death by two children, both lost in early pregnancy in the year before her cancer diagnosis.


Lis, my heart aches tonight because you will never read this. You will never post on our forum again, you will never read my essays, you will never post about how your hair is finally growing back and you're finally feeling better and maybe you and Greg will try one more time for a baby. I mourn for you, and for all you lost in the difficult months that led up to this last horrible loss.

Marcie expressed perfectly what I was thinking -- it feels so selfish, this grief that revolves around us and what we lost when we lost you. I wonder, though, when it comes down to it, isn't that what most grief is?

I grieve for Greg, who knew you inside and out and loved you so much. I am so sad that he will never see your hair (he missed it so much, your beautiful dark hair) grow out and become lush and thick, and that he will never be able to push it out of your eyes when it is heavy with sweat from the exertion of bringing his child into the world. But the truth is, I never met Greg. I wouldn't recognize him if he sat next to me at McDonald's. I mourn for him, but in truth it is only what I imagine he feels from his anguished announcement of your death.

I mourn for your parents, who raised you and loved you and watched you grow into a strong-minded and wonderful woman. My heart aches as I think of them burying their daughter. But I never met your parents. I don't know them, and my grief for them is largely what I imagine my own grief would be if I had to bury my own daughter.

I mourn for your lost opportunities, but I confess that everything I imagine is simply an extension of what I imagine I would lose. I mourn for the children you will never have (my children), the holidays you will never celebrate (my holidays), the laughter with friends that has died with you (my friends), and the hours of joyous hard work you will never again spend singing the blues with your band. It is my band that I see, since I never met your band.

It seems so selfish. But Lis, what other grief do I have? I can't share their grief, and they can't share mine -- it will mean nothing to them if they go a week without seeing the always slightly bittersweet "blues_mama2005" user ID next to a new post on the forum. This is the only grief I have, and it is all I have to give.

I mourn for the years of friendship we are denied. I regret all the days when I thought about e-mailing you, just to see how you were doing, but didn't get around to it. I am sad that you and I will never get to sit down together at a piano. I will never get to roll out a walking bass line and fill it in with rich blues chords, and hear your marvelous voice in response. I mourn for the joy I would have shared with you when you posted a picture of your funny chemo hair growing out, and the delight when you announced that you'd gotten two pink lines on your home pregnancy test (and it would have been the fourth one you'd taken that day because you just couldn't believe it was true). I am sorry I will never see your trademark ear-to-ear grin sharing our jubilant relief when 2012 rolled around and you'd reached the five-year mark in your journey away from cancer.

If it is selfish to feel my own grief, then I will be selfish and unashamed. I cry my own tears, because they are the only ones I know how to cry. My own sorrow is all I have to offer, and I offer it with all my aching heart.

I wish I could have heard you sing.

Grief in the Sunshine

They tell me that the five stages of grief are denial, anger, bargaining, depression, and acceptance. I've experienced these with Peter, sometimes all five on the same day. Maybe it works for some people to go through them in a straight line and never go back; it appears that I'm not one of those people.

Peter is doing so well. I know he's doing well, because for the last month or two, everyone in contact with him has been speaking in excited tones, their conversation peppered with superlatives and nearly visible exclamation points. He's come a million miles this year! His progress is absolutely amazing! You'd never know it was the same kid!

And it's true, he has made incredible progress in the last few months. He can have a conversation now, where you say something and he answers you, instead of looking out the window and exclaiming, "A truck! A car! A truck! A truck!" He can choose a shirt and pants and put them on by himself now. He can use a spoon and fork, and the amount that misses his mouth isn't much more than I cleaned off his sister's shirts at that age. He lets us wash his hair without thinking we're trying to drown him. He finally finished the long road to toilet-training last month. He uses complete sentences most of the time now, and the other day he even made a little joke. (He got mad at us when we laughed, because he thought we were laughing at him, but it's still progress.)

It is amazing. He has come a million miles. And I am happy about it, really I am.

It's just that some days, for no real reason, I am sad again. I feel so ungrateful to be sad, that if I was truly thankful for his progress, I couldn't feel anything but pride. I worry that my sadness will seep from my hands into his wiggly little body, dampening his rowdy energy for life. I am frustrated with my sorrow, this unwelcome houseguest which drops in uninvited every few months and makes its grumpy self at home in my head.

Shouldn't this be over? What about those five stages of grief? I did denial for a while -- about fifteen seconds, because his diagnosis was too obvious to ignore. Anger, you bet. Definitely some mad days in there. Bargaining, not so much ... I couldn't special-order him a new brain, so there wasn't much petitioning to be done. Depression, sure, and who wouldn't get a little down? So now it's acceptance! Hurrah, acceptance! Now we're in that wonderful forward-moving productive stage where we can sit around with other parents and encourage each other and talk about all the wonderful progress our wonderful children are making, year after year after wonderful year.

Some days, though, it hits me all over again. I was sitting on the steps this afternoon, tying my shoes so I could go outside to work in the yard with Peter. The breeze was warm, the sun was shining, and I was looking forward to the physical labor and the time with my son. I told him he could go into the yard ahead of me, and he responded with one of his usual non sequiturs, something about a tree this time, and all of a sudden grief landed squarely in my lap all over again.

Why that statement, that afternoon? I don't know. It was only one of hundreds of times when he answered a question I hadn't asked, listening to an internal conversation I couldn't hear. There was nothing to make this time any different from the others. But today I felt all over again the ache of mothering a child who lives partly in this world and partly in an alternate universe with a population of one. I grieved the lost years of getting to know my little boy when he was so far inside his head that I wondered if he'd ever come out. I ached from the frustration of hours spent in circular conversations, and from his daily angry outbursts about shoes and breakfast cereal and forbidden shelves. Tears pricked my eyes at the thought of the mean kids (and they're out there, practicing their nastiness even as Peter plays in the leaves), the bullies in high school who will not understand or care why Peter's thoughts go skipping in unexpected directions.

Grief is not a popular emotion in the world of autism. It is expected, especially in the first days after the diagnosis, but it is also expected to leave in a timely manner. Support groups are meant (and rightly so) to be supportive, not full of weeping and whining. The myriad books on the subject are positive, looking toward solutions and hope. The amazingly patient people who work with children with autism are unfailingly optimistic, reeling off the latest accomplishments in glowing terms. This is good -- unquestionably, we need optimism.

But sometimes I wonder how many other mothers and fathers sit in the sun on the porch, suddenly immobilized once again with the stab of loss. I wonder how many of us ache privately, unable to tell anyone of our sadness because we don't have the energy to smile and nod through another recital of our child's latest achievements, things that a typical child would have done months or years before. I can't be the only one who blinks back tears when it hits me once again that yes, there is something wrong with my child, no matter how politically incorrect it is to say so aloud.

I suspect that we do ourselves a disservice, in this particular grief as in any other, by putting the stages in a neat line and discouraging backtracking. I have heard it alternately described as a cycle, but that seems unnecessarily grim, eliciting images of the hamster on his wheel, always watching the same landscape pass under his frantically running paws.

I like to think that it might be a spiral. Tightly wound at the beginning, denial mixed with bargaining in the same angry prayer, acceptance masquerading as depression and depression dressed up as acceptance. As time goes by, maybe the pattern gets looser, wider, curling out in ever-increasing circles where there is more time to breathe between sadnesses.

I like to imagine that some day, like a playground game of Crack-the-Whip, Peter will find himself exuberantly flung off the end of the spiral, spinning and laughing into adulthood with no more fear of falling than the rest of us.

Clean Your Room!

Like many women in my stage of life, I've experienced the disconcerting process of watching my mother morph from the out-of-touch, unhip person she was in my teen years to The Source of All Maternal Wisdom whose number is at the top of my speed dial list. I'm not sure I've ever come out and told her that she obviously knew what she was doing all along, but I think she knows.

After those blissful years from age 13 to age 25 when I knew everything, I had a baby and discovered that I knew nothing at all. At least, not when it came to anything involving this small mouthy person who believed that she was the geographic and metaphysical center of the universe, and that my sole purpose in life was to orbit her, reflecting her brilliance and catering to her every whim. Mom gave good advice: If she's too stubborn to eat, it's not going to kill her to miss a meal. She'll fall asleep when she gets tired enough. Be consistent. It's OK to call the pediatrician if you're not sure. And honey, you have GOT to get some sleep.

As Mary got older, my calls to my mom got more frequent, and she continued to dispense wisdom on demand. Sometimes she offered as much commiseration as actual advice, but it was no less welcome for that: You quit taking naps at about that age too, so I just made you have a quiet time so I didn't go crazy. Do you think she'd eat it if you cut it in half first? (I'd nearly forgotten the two-month Sandwich War, which is a story for another day.) She'll use the potty eventually -- how many twelve-year-olds do YOU know who still wear diapers?

Far more often than not, Mom was right. Even when her experience differed from mine as her children differed from mine, she often helped me get out of that day's mental rut, even if it was just by eliciting a tearful laugh from me and persuading me not to find out the going rate for a toddler on eBay.

Recently, though, I have run up against a predicament that I can't ask my mom's advice about. For one thing, she doesn't know the answer because it was one area of parenting where she had to resort to simple damage control. For another, if I told her I was facing this particular parenting challenge, she would laugh herself silly. I suspect that through her snorts of hilarity, I would hear the words "What goes around, comes around."

In my own defense, I will say that I am much more organized now than I was when I was a child. My kitchen counter isn't perfectly tidy and I'm a few years behind on my photo albums, but I pay my bills on time and arrive for my appointments as scheduled. I put my clothes away after they are washed and do a fair job of maintaining order behind the two small whirlwinds to whom I gave birth.

It was not always this way. I'd like to say that it was organized chaos and I knew where everything was even if nobody else did, but that would be, not to put too fine a point on it, an outrageous lie. My childhood bedroom looked like those sad pictures they print in the newspaper after tornados level small Midwestern towns. Dolls, books, and bedding were indiscriminately mixed with lost homework, tangles of yarn for crochet projects, and unidentifiable (but highly treasured) paper crafts. On one memorable occasion, there was even an accidental science project under the bed that resulted in a pungent cup of something resembling cottage cheese.

My parents tried everything to make me keep it clean. Threats, rewards, appeals to my conscience, descriptions of the virtues of an organized room -- all fell on deaf ears, and the mess deepened. After one long Saturday morning on which I was relegated to my room until it was clean, my mother became suspicious of the suddenly visible carpet. A quick peek under the dust ruffle answered the question -- I had simply stuffed everything under the bed, and it was apparent that this was not the first time I had resorted to this method of housekeeping.

At this point, my father intervened. He insisted that I clean out from under the bed, and he would not brook opposition. I suffered from mild claustrophobia, and wailed that I couldn't get under the bed because it was too scary. He told me that if I didn't do it within fifteen minutes, he'd do it.

Well, that sounded like a good plan to me. I sat on my bed for fifteen minutes and read a book, and waited for him to come back. He looked under the bed at the untouched rat's nest of clutter, and started to leave the room. I protested, "Hey, where are you going?" I had fully expected him to kneel down and lovingly remove each item from under the bed, determine its proper home, and put it away for me. This illusion was shattered when he returned shortly with a dirt rake and proceeded to unceremoniously drag several weeks' worth of rubbish to the center of the room. I stomped around and put it all away with bad grace, but for that one day, my embarrassment overcame my natural messiness and I had a clean room.

It wasn't a permanent solution; my room continued to be a sore point between my parents and me. The Rake made for a funny and oft-repeated tale, but my dad wasn't interested in repeating the process. Eventually, a caustic-tongued college roommate provided the motivation to keep my living area neat, and the lesson was driven home by the pleasant discovery that homework could be turned in on time more easily if it wasn't buried two geological layers down in the strata on top of my desk.

Some day, I hope my daughter will learn for herself the joys of an organized closet and a floor you can actually walk on without hearing the crunch of small plastic toys. I would like her to realize that homemade jewelry projects are easier to complete if the beads are not mixed into her sock drawer. I would love to see a bookshelf full of books and a toybox full of toys, instead of an evenly distributed muddle of dolls, craft projects, magazines, and hair ribbons on every flat surface in the room.

In the meantime, though, I will continue to make threats every Saturday morning. I will come in from time to time while she's at school and furtively winnow out the more indeterminate craft projects. I will praise her when she clears a path from the door to the bed. I will hope with all my heart that she finds her own way out of the pigpen.

And if all else fails ... there's always The Rake.

Fishes and Little Girls

"Yup, he's a goner." And so begins my personal top ten list of things never to say to a crying child.

Mary came into my office last night, eyes and sniffly nose red from crying, and informed me that Diamond was floating. Diamond is one of three goldfish purchased with her saved-up allowance earlier this week, along with their bowl, food, and other necessities. After the death of our cat Lucy last year, Mary hounded us mercilessly for a new pet, and a few fish seemed a little more practical than her other oft-repeated wish (a horse).

Diamond was a feeder goldfish, and she (he?) cost twenty-eight cents. I made the mistake of forgetting that when you're eight, a pet that costs less than a candy bar can still be deeply valued. Diamond was selected specifically for the contrast between her pearlescent white body and the vivid splotch of fiery orange on the top of her head, and I will readily agree that for a feeder goldfish, she was quite pretty.

Unfortunately, last night she was also quite buoyant, and this is never a good sign when you're a fish. She was still "breathing", or whatever it is that fish do, but she was not a happy fish. Mary was optimistic, though, and over the next hour as I got the kids ready for bed and tucked Peter in, she delivered regular progress reports. She would drag herself wearily into the room, slump against the door frame, and say, "I don't think she's going to make it" before making a dramatic, tearful exit. Five minutes later, she would come bounding back, her tearstained face glowing with the wonder of a true miracle, and proclaim, "She swam all the way across the top of the bowl! She's going to live! I just know she is!"

Upon further examination, though, I realized that Diamond's progress had less to do with healing than with Mary's aggressive approach to nursing. Not too surprisingly, if you jostle a fish's bowl, it will move from one side to the other, and if you poke it repeatedly in the side, it will momentarily overcome even catastrophic illness to attempt escape below the surface. Optimism aside, it did not look good for Diamond.

After biting my tongue and mentally slapping my forehead over my first callous diagnosis, I continued to alternately commiserate and rejoice with Mary over the course of the evening. I had to balance it with at least a small dose of reality, though ... I've had fish before, and this behavior is usually not (as she theorized) a piscine attempt to learn to float just like people do. I didn't want to completely quell her hope, and I also didn't want to be embarrassed the next morning by a fully recovered Diamond swimming around the bowl. But the prognosis wasn't good, and she needed to know that.

The next morning, the worst was confirmed: Diamond had gone to the Great Fishbowl in the Sky. Mary cried, retrieved the fish from the bowl, and we discussed interment options. After debating the merits of a spot in the yard, she settled on the more traditional "burial at sea". We moved the ceremony to the bathroom, and Mary's tears flowed again as she held the tiny body between her fingers, stroked its fishy little head, and sobbed, "I'll never forget you, Diamond." She consigned it to the deep, cried a little more, and flushed.

As it swirled around and around the toilet bowl, Mary emitted an unexpected giggle. "I hope she knew the Fish God." I had to laugh, but my heart ached for her all over again, for the silly little 28-cent fish, for the memories of the cat buried under a patch of tulips in the back yard, and for the many times in her future when she will have to say good-bye to animals who have enriched her life, even if only for three days.

I responded, with a perfectly clear conscience, "Yes, love ... I'm pretty sure God takes care of the fish," and finished silently, "and of the little girls too."