Tag: Child Hospitalization

Weight

Marta DrewLeave a comment

Biker Caroline 051711

 

Carrying something heavy isn’t in and of itself a painful thing. Really, the pain only comes as the weight is added or lifted, as bone and muscle shift to accommodate the burden or its absence.

 

Caroline had her first seizure about three and a half years ago. Since that moment, I have carried her condition and all that came with it –hours pulling her in a little red wagon in laps around the seventh floor of Children’s Hospital; combing glue out of her hair after every EEG; watching the anesthesiologist at Mayo carry her, woozy from a sedative, out of the nurses’ station to her surgery; unspeakable anxiety, loneliness, isolation; fighting for her, fighting with her, fighting just to remind myself I still could.

 

During the time this weight was first being lowered onto me, my heart registered each additional brick, reshaped itself to take the new pressure  –I’m sure all four of its chambers back then were small rectangular hospital rooms with IV poles and call buttons.

 

But now she’s doing well –extremely well, actually. She still has developmental delays and may never completely catch up to her peers, but she’s happy and musical and chirpy and affectionate. She can go to playground camp or school or Grandma’s house without my having to be with her the whole time. She still needs me, but she doesn’t need me so constantly. Good. Of course I say good.

 

But as this weight is finally being lifted, I’ve become aware of it again for the first time in a long time. My heart is already starting to remember what it once was, its natural shape, and has begun work restoring itself.  The IV poles have been wheeled into the hallway to be taken away, the call buttons are disconnected. One day soon those chambers will be familiar places again –a cabin at Camp Lake Hubert, GramBea’s Cooper Avenue house, my dad’s garden, my first apartment. I look forward to that, but while it’s under construction, it’s a big mess and hurts like hell.

 

My heart is already starting to remember what it once was, its natural shape, and has begun work restoring itself. 

 

The thing I worry about, the thing I have been worrying about as I pack to leave this house in a couple of weeks, is that even if this weight is one day completely lifted –even if my Caroline grows up and is able to drive, work, live independently, find love that fulfills her, and friendships that feed her –my heart and mind will not remember how to be without the weight of her illness and need. I worry that when the dust clears in the chambers of my heart, one of them will forever be a small rectangular hospital room with an IV pole and a nurse’s call button nobody ever uses.

 

As we have been looking at houses to potentially buy, we have seen some bizarre renovations and additions, evidence of people trying to adapt old houses designed for one kind of living to modern families committed to a new kind of living. I applaud the effort, really; I’m all about preserving the beauty and character of the past whenever possible. There’s something rather lovely about people determined to gently tug their old houses into the future with them. I like the idea but it has to be done so carefully, so expertly, to effectively reconcile what’s already there with what you want to build now.

 

But maybe I could do that as I tear down my hospital rooms. Maybe I could use the old bricks for a fireplace in the cabin, a patio at GramBea’s house, pavers in my dad’s garden, a thick kitchen wall in my old apartment. I would still be carrying them around with me as I have been, but on my terms, beautifully, a reconciliation of what’s already in my heart with what I want to build now. A heavy thing …but not a painful thing.

 

Endings

Marta Drew4 Comments

 

Rain Gardener Lizzie 092711

 

I’ve been (particularly) emotional lately …things are ending. I am not necessarily referring to the End of the World, which the Mayans apparently scheduled-by-not-scheduling for later this year, though I have to say that the deaths of Whitney Houston, Maurice Sendak, Vidal Sassoon, AND Donna Summer in the same year have me a bit edgy. What could that MEAN?

 

Lizzie, my youngest, turned five yesterday.  Of course the early childhood years are intense for everyone …the nursing, the sadomasochistic sleep schedules (theirs and ours), the laundry, the temper tantrums (theirs and ours), the saccharine tv shows, the aggressive bitches who show up at preschool dropoff in full hair and makeup, the vomit, the blood, the tinkle, the poop, the tears (theirs and ours), the pining for our former lives, the very real fear that Child and Family Services are on their way, the diapers, the permanent Lego and Squinky and sparkly bead engravings on our feet.

 

Even when nothing goes seriously wrong, the early years with kids are enough to rattle most of us. In the midst of the Standard Mama Experience, one of mine started having rare seizures on a December night as we pulled her out of the bathtub. She was two. We did weeks of steroid shots, tried I-don’t-know-how-many scary medications for the next three months, had several hospital slumber parties that weren’t nearly as fun as you’re imagining them to be, then had the right temporal lobe of her brain removed in a nine-hour surgery at Mayo Clinic when she was three.

 

Even when nothing goes seriously wrong, the early years with kids are enough to rattle most of us.

 

All of this while I was still supposed to be Mama to a sensitive, dreamy five-year-old boy and a passionate, stubborn 1 1/2-year-old girl. So can we all just agree I had a bigger rock to roll up the hill than most Mamas? I did …partly because of what was happening to my Caroline, partly because of what was happening to our family, and partly because of what was happening to me. I don’t know what fed what — that’s one of those chicken and egg questions that mamas of tiny children don’t have time for.

 

But now Lizzie (the passionate, stubborn baby –who KNOWS where she gets those qualities?) is five. Not quite ready for summer employment on an Alaskan fishing boat, perhaps, but able to poke her own straw through the hole in her juice pouch without spraying juice everywhere, able to choose her own bold fashion ensembles, and able to sing soulful and expressive (if ever-so-slightly off-tune) renditions of most Disney songs. She still needs me to snuggle her and scratch her back after she’s had one of her intimidating Corleone tantrums, but she doesn’t need me to feed her. Reason isn’t exactly featured in her personal philosophy but she is able, for the most part, to comprehend it. She is five. She is not a baby anymore.

 

The baby years are over for all three of my children. That fact has been traveling through my nervous system for the last month or so, lighting it up with hope and wonder and possibilities in this minute, then flooding it in the next with longing for those lumpy, helpless beings who fell asleep at my breast, dreaming (I assume) of their former lives as explorers or priestesses or fortune tellers.

 

I will want to rescue them in those moments, move mountains and crush enemies and give them the world. But I will want that for me, not for them, so I’ll force myself to resist the maternal heroics.

 

It’s getting harder to find the babies I started with in the faces of the children I have now. Henry is nine, experimenting with obscure Greek and Egyptian mythology jokes he writes himself and going off on week-long camping trips with his dad and grandpa to the Boundary Waters. I assume he will return after this summer’s trip with a full beard.  Caroline is six –creative and theatrical and quite possibly very bright despite the tumor and seizures. We’ll know when we know and it doesn’t matter to me either way –I got to keep her; I will never forget to be grateful for that. And now Lizzie, my babiest baby, is five –social and emotional and funny. They’re real people, growing up and away.

 

This is as it should be –you’ll never hear me say I don’t ever want them to go out on their own. I do, though I want that for them, not for me. I want them to have close, deep friendships so they can sit in their rooms and talk about what a nightmarish disappointment I am as a mother. I want them to experience epic, mind-blowing failure; devastating, unrequited love; crushing, faith-testing disappointment. When these calamities befall them, I will want to rescue them in those moments, move mountains and crush enemies and give them the world. But I will want that for me, not for them, so I’ll force myself to resist the maternal heroics. I always want to be the Red Cross in their lives, not the liberation front.

 

In my own life, of course, I must be both, I must manage both my own rescue and my own restoration. Once I have marched into the burning cities of my recent history and freed them from the dictators, I will still have to restore the architecture, the masterpieces and artifacts. That is just fine …I’m ready to do it and I know how to do it. My own wise, selfless parents allowed me to grow up, granted me my failure and unrequited love and disappointment, so I know how to do it.

 

My children’s babyhood is ending, the years of their helplessness and blind trust and love-bordering-on-worship are ending …but the world isn’t ending.

 

Waiting Room

Marta Drew3 Comments

 

Teary Caroline
© 2015 Marta C Drew

I am, despite this public way of telling you about it, a rather private person. I don’t mean that in the sense that I am unwilling to share vulnerable or personal feelings and experiences –obviously, I’m willing to share to the point of emotional exhibitionism. When I say I’m private, I mean that I am deliberate about what I share, how much, in what way, and with whom.  Read my journals and one of us is going to have to permanently move to Iceland. Go through my purse or my closets or my nightstand without my permission and you’re dead to me. I decide.

 

The problem is the waiting room.

 

Before you can enter some of the oldest and largest vaults at Gringotts Bank (the wizarding bank in Harry Potter for those of you who don’t read), you have to pass through a waterfall that clears away any enchantments you may be trying to use to enter the vault under false pretenses. If you have tried to conceal or change your identity, if someone or something else is controlling your behavior, if you have tried to protect yourself in any way from exposure or vulnerability to what could be inside, then it is all washed away. You are just you.

 

The same thing happens to anyone who enters the Children’s West Rehab Center waiting room, only it’s the air swirling around the door as you walk in that breaks all the spells, not a waterfall (which would be impractical and inconsiderate in such a cold climate). You walk in with all of your protective enchantments and it all gets blown away. Everyone sees who you are. Everyone sees what you’re dealing with.

 

If you are a regular, you are dealing with scooters or wheelchairs or companion dogs or leg braces that make your little peanut cry because they hurt. Or you are dealing with tiny little helmets, tiny little glasses, tiny little hearing aids. Your son cries about everything, your daughter can’t properly metabolize food. Your granddaughter has cerebral palsy, your grandson has a heart condition.

 

Now YOU have a heart condition.

 

What do you do? There was a woman once who spent the whole hour she was waiting doing yoga poses and stretches. I rolled my eyes until her son came out after his physical therapy session and I overheard her talking with the therapist about how she could help her son be more successful with eating and drinking. He was at least fifteen years old. There was a homeschooling mama with a church bell ringtone who used the time to drill her older daughter in reading; a tense, germaphobic lady who only allowed her impeccably-dressed children to touch toys she brought with her and sanitized before and after they were handled; a maniacally positive mother who practiced tap dancing and jazz routines with her five-or-six-year-old daughter, who played along but didn’t seem convinced of how much fun she was supposed to be having.

 

You walk in with all of your protective enchantments and it all gets blown away. Everyone sees who you are. Everyone sees what you’re dealing with.

 

But most of us talk. We tell each other what happened to our children, what happened to us, what keeps happening. We tell each other about the doctors who practically bound across the waiting room at Mayo to tell us surgery went well, or about that nurse at Children’s Hospital downtown who would not rest until she found a way to bathe a child without getting the electrodes in her hair wet (an elaborate system of plastic Target bags and rubber bands). We tell each other about the schools and programs we’ve found to make it all easier (horse therapy, art therapy, water therapy, music therapy) and the schools and programs that haven’t figured it out yet. For several months, my dear childhood friend Lindsay, whose son gets therapy from time to time, met me in the waiting room with coffee and we got to have a built-in Mama date every Wednesday afternoon.

 

Of course it’s not just mothers waiting –Thad has been one of my favorite waiting room pals. For at least a year, Caroline’s appointments coincided with his granddaughter’s, so every week, Thad and I talked cooking (he was an old-school gourmand –he made his own sausages and everything), gardening, music, antiques, parenting, traveling, families, weddings, home design, life. Thad is marvelous –I miss him. His daughter-in-law doesn’t drive and he’s retired, so he brought them to the rehab center every single week. Maybe we’ll be on the same schedule again this summer.

 

I wouldn’t say I’m friends with these people in the conventional sense (with the exception of Lindsay) –it’s more like we all operate the various small businesses of the same unethical, sadistic bastard. We all cry about it, we’re all degraded by it, but there’s no choice –we can’t leave; he has too much power and we’ve invested everything.

 

There is no point trying to control what I reveal to my waiting room colleagues –they see everything anyway, just like I see everything about them. We see each other crying and limping and dragging along with our special needs kids as if we have been stricken with the emotional equivalent of each of their physical or neurological afflictions. We have, so privacy is beside the point –it doesn’t protect us from anything except our mutual sympathy and understanding.

 

Maybe that’s why the protective enchantments we rely upon so heavily out in the world don’t work in the waiting room. Maybe our vulnerability is the most powerful enchantment no matter where we are.

 

Signs of Spring

Marta Drew6 Comments

Spring in Pamela Park

After about five solid years of winter, I’m seeing signs of spring –not necessarily in Mother Nature, who is usually still sleepy and moody in Minnesota this time of year anyway– but in my own nature. For example, I saw a heavily lacquered Barbie plow her Escalade between two lesser automobiles (instead of patiently waiting her turn) at after-school pickup yesterday and it only irritated me for about seven minutes; 25 is the norm. I have switched from Adele and Bon Iver to Madonna and Fleetwood Mac, watered my plants two weeks in a row, and bought two articles of clothing that aren’t black or grey. Spring!

 

Really, though, I know spring is finally here because I’m looking at my life through windows instead of imagining it from behind doors.

 

I am sure you’ve heard this saying: “when one door closes, another one opens.” It’s true, but I have spent a lot of time standing in the dark after the first door has closed, waiting for the next one to open. Either I’m longing for whatever is behind me, re-imagining it until it bears no resemblance to the reality, or I’m staring at the door ahead of me, looking for light through the cracks, writing a story in my head about what will happen in the room beyond before I even see it. In the meantime, I’m trying to take as little notice as possible of what’s around me in the space between.

 

If you’ve had a lot of trauma in your life, you can understand this approach. While you’re sitting in the bedroom where your adorable, thoughtful, truly classy stepmom is about to die of breast cancer, you don’t want to absorb into your memory her rattling, gasping breath, the medicine smell, the anemic sun straining through the clouds. You want to reinvent that scene later from a safer distance, from the other side of the door, where you can replace the smell of painkillers with the scent of lavender soap; where you can replace listening helplessly to the labored breathing with reading to her from a magazine; where you can replace the weak sun with a brilliant one.

 

Nostalgia and speculation are destructive habits if you can’t see beyond them.

 

And you want to imagine a sunnier room behind the next door, where you can sit and heal and remember how she made damn sure she was at both your rehearsal dinner AND your wedding in December, though nobody thought she would make it past February (she made it halfway through April on sheer will). You want to picture a room behind the next door where all of your most important people can come to visit, sit with you and put their arms around you and let you cry about how hard it was to lose such a special lady. It makes sense to picture that room, invent several scenes in it, hope for it, even if the room you get is another sickroom, this time at your mom’s house, where your stepdad will die less than a year and a half later of melanoma.

 

But even after these traumas and several others have passed, after you have absorbed all the losses and near-losses, it can be hard to give up the doors. Nostalgia and speculation are destructive habits if you can’t see beyond them; they let you skip over the crucial points that explain why something (or someone) has to stay in the past or allow you to dream a life for yourself that is far less beautiful and spectacular than the one God is dreaming for you.

 

Yet I will never be the kind of girl who lives in the moment; that’s not typically how artist brains work. I need to have a view into my past and some vision about the future to make meaningful connections, to write. For a long time I couldn’t do that –the past was too painful and the future too scary. I needed the doors in place for protection, so I could feel brave enough to keep feeling my way in the dark, knowing there were barriers between what happened yesterday, me today, and what would happen tomorrow.

 

Now I have begun replacing some –not all, but some– of the doors with windows. I can see into the room now at Children’s hospital where I stayed with my Caroline last August, she watching Olivia and I listening to music while she sat leaning against my chest in the little bed. I have kept the doors on all the other hospital rooms for now.

 

I can see through a window into Kyle’s memorial at his parents’ house in Milwaukee –the singing, the cooking, sleeping in a bed with my cousin Jessica like we would when we were little girls. But there’s still a door on my visit to the same house to visit Kyle the month before.

 

I can look through the windows in one room to see another, finally understanding that they belong together –they belong to the same life.

 

I can see into Linda’s room the day she died, see beyond the rattling breath, the medicine smell, the weak sun to the honor of being there when she finally felt brave enough to let go. I can see into Steve’s den, past the tiny man who bore so little resemblance to the one I knew, to the one I did know asking an uncharacteristically vulnerable question: “Where will I go?” I can hear my own answer through the window: “You don’t believe in Heaven, I know, but I believe in it for you.” There’s the medicine smell in that scene, but also a little bit of lingering pipe smoke –the memory makes more sense to me with both.

 

I can see through these windows some of what used to be, who used to be, and be grateful without being cracked open all over again with grief or heartbreak or fear. I can look through the windows in one room to see another, finally understanding that they belong together –they belong to the same life. At the same time I can see vaguely into the rooms ahead, imagine someone who’s missing from the room in front of me showing up in a room beyond it, imagine what might be, who I might be, and remember that God will write it way better than I can. In the meantime, there’s a lot more light where I’m standing now.

 

In another month or so, I’ll see outward signs of Spring…peonies and roses in my dad’s garden, that mossy, electric scent coming from the earth, and all kinds of whackadoos jogging in 60-degree weather practically naked. I’ll wear dresses and open-toed shoes and maybe more jewelry. I’ll leave this house with all of its painful memories and close the door. I don’t know if I’ll ever replace that particular door with a window, but I might. Knowing I might is my first sign of spring.

 

Self Preservation

Marta DrewLeave a comment

 

Marta b&w apple orchard 2006

 

“The best thing a mother can teach her children is how to need her as little as possible,” I like to tell an imaginary television camera in the car after dropping Lizzie off at preschool. “I am a mother, yes, but also a woman, a person, a soul worth growing for its own sake. If I lose sight of that, I will have failed both myself and my children.” I picture myself saying it to Jon Stewart on The Daily Show, to Terry Gross on Fresh Air, and to Barbara Walters (she’d LOVE it) on 20/20. I will wear my hair down, dress beautifully but not ostentatiously, and listen as much as I speak (this last part would most likely be the hardest to pull off).

 

Then someone honks at me –the light has turned green. I have to stop fantasizing so I don’t start mowing down old people on the sidewalk with my sexy minivan.

 

Regardless of whether I ever get the opportunity to say it on camera, I have always believed we women must nurture our original selves as we are raising our children, if for no other reason than because mothering demands nothing less than a whole, enlightened, educated, talented, healthy, flexible woman. Still, having as much as possible to give our families shouldn’t be the only reason for preserving and growing our essential selves . We should be our own reason.

 

If I do my job well, my children will gradually leave me. First they will stop asking me to get them brefgast and Cheery-lows and pisketti. Then they will stop coming to me when the mean stister called the nother stister Cookie Face (they find this SO insulting) or when someone can’t find his Lego Harry Potter’s microscopic hand and wand. Next they’ll start turning to their friends when they have a secret or an idea. Or when they need feedback about whether something is cool or not (even at the height of my powers, I would never be able to help them with that). Eventually, I won’t see them for weeks at a time as they hole up in their rooms listening to mopey music and/or writing poems to boys or girls who don’t know they exist. They’ll go off to college or on tour with their basement bands, calling only to tell me he’s changed his major to celebrity portrait painting or that she needs more tattoo money.

 

Having as much as possible to give our families shouldn’t be the only reason for preserving and growing our essential selves . We should be our own reason.

 

This is all as it should be, but then what will happen to me? Will I be able to find myself under all the layers of anxiety, impatience, indignity, and confusion pressing on my tender psyche over the years? Will  I have raised a good, strong self at the same time? Will I ever be able to think about anything else besides what or who might hurt my babies? Once I have the freedom to do whatever I want, will I know what it is?

 

This weekend, the Drewlets all left for two days and two nights on sleepovers with the grandparents so Brian and I could work on home projects. I returned to my quiet, empty house after the last round of forgot-to-give-you-this minivan deliveries and felt relief, yes, but also a low-grade, buzzing uneasiness –the kind I get when I’m sitting in a movie and am suddenly unsure whether I unhooked my iPod and locked my car. I THINK I took care of everything but I’m not SURE I took care of everything.

 

Would Henry get enough sleep at his grandparents’ house to recover from his tiny man-cold (the one that had him moaning and keening like a Sicilian widow the night before) so he’d be healthy enough for his swim meet on Saturday?  Would he be as scared as last time? Would Lizzie refuse (again) to eat her dinner and get hypoglycemic in the middle of the night? Did I remember to warn my dad about that? Would Caroline stay in her little bed at my mom’s house all night? Or would she start wandering at 1:00 or 2:00 in the morning like she did last winter, maybe get hurt in the big dark house and not be found until morning?

 

A rich imagination is a great gift for a writer and a horrible curse for a mother. My memory is the same way. You may say my fears are irrational. You may be right. But I have a picture in my mind of Henry in the back seat of my car before a swim meet last winter, tears in his other-worldly eyes, trying to take deep breaths, get on top of his nerves, be brave enough to at least go inside and change into his suit. I have a picture in my mind of my Lizzie, sweaty and shaking at 11:00 at night as we tried to feed her a granola bar and get her to tell us who I was, who Brian was.

 

I have so many pictures in my mind of my vulnerable Caroline that I don’t even know which one to mention here. In my memory, she always has electrode glue in her hair and is crying “all done that part!” as the nurses try a second time to get the IV in. If I am a pathological worrier, I am forgiven. You wouldn’t believe some of the things I’ve had to do over the last five years to get my kids, safe and whole, to now, to Grandma and Grandpa’s houses this weekend. Unless you have little people in your care. Then you would believe it — and have probably lived it.

 

My Empty Nest Preview Weekend reassured me I’m still mostly here, mostly reconcilable with my original self.

 

I worry about me, too. Am I going to be okay or am I permanently damaged by the particularly intense mothering I’ve had to do? Can my original self and my modern self get along? I felt almost awkward being alone with myself on Friday night, like I was hosting for the weekend a cousin I had been close to in childhood but now barely knew. What did she like to do? How should I entertain her? Would she be willing to eat Cap’n Crunch? (I hoped so, because there wasn’t much else in the pantry.)

 

What would she think about the obscure reality shows Brian and I like to watch these days, like Storage Wars and BBQ Pitmasters? Would she judge me? SHOULDN’T she judge me? Would she be able to pee without a panel of tiny commentators standing in the bathroom with her? Would walking through a greenhouse or garden center make her feel instantly contented and hopeful like it used to or would it take more than that? What would it take? Was she still likely to skip meals if she was really into some creative or organizational project? I knew her so well back then, but who was she now? How would we pass the time? Would she lecture me about getting some exercise?

 

Well yeah, she lectured me a little bit (my original self loves to lecture –we have that in common). It turned out that my modern self, the soul I’ve been trying when I can to grow and nurture alongside my children, is mostly compatible with my original self. The me I believed I had abandoned in the Children’s Hospital ICU in 2008 was still there.

 

I saw her at about 1:30 on Sunday afternoon when I realized I’d been so intent on cleaning out the laundry room that I had eaten almost nothing. We walked through Bachman’s together in search of houseplants, my original self and I, our heart slowing down and filling up; it didn’t take any more than that to restore either one of us. Relief. Yes, of course the Original Marta was willing to eat Cap’n Crunch –I needn’t have worried about that one– and was most impressed with Modern Marta for thinking to eat it at night with ice-cold whole milk, which is way more delicious and superhealthy than ice cream. Peeing without an audience went just fine for us too, thank you for asking.

 

Begonias August 2011

 

My Empty Nest Preview Weekend reassured me I’m still mostly here, mostly reconcilable with my original self. I’ve been taking better care of her than I thought –let’s hope the same is true for my kids. She was disappointed to see that I was buying faux-plants, which she considered tacky and unworthy of our green thumb. I explained the house is dark, we need some shots of green, I bought convincing ones, and we could never keep real English ivies or ferns alive in the winter anyway. She couldn’t argue with that.

 

My modern self woke up at 5:45 on Saturday morning, freaked out about whether Lizzie had fallen out of bed or Caroline had wandered out of her room. The old me reassured the new me that they were definitely all safe, everything was fine, I was fine, and we should go back to sleep. I was glad she was there.

 

The woman I used to be, before the tumors and broken hearts and vulnerability of my maternal experience, is still around. She’s still the same in essentials, but she’s grown, of course, into this modern self I have now. They’re both me. I’m wholly me –the woman and the mother. I still don’t believe my children are the only reason I’m here; I haven’t changed my mind about that. I’m supposed to remember the other interests and relationships that fasten me to this beautiful, mysterious place and develop them so I don’t start needing my children more just when they have finally begun to need me less.

 

I am supposed to write and garden and bake and sing and return to camp whenever I can and stay close to the friends and sisters and brothers who will let me. And I will, because I am a person, a woman, a soul worth growing for its own sake.

 

Yet the soul I’ve grown is a mother’s soul, blooming most fully and miraculously on bathroom floors and hospital beds, in dark hallways and parking lots.  The self I have worked so hard to preserve is first and most essentially a maternal self. There is a woman within the mother and a mother within the woman, nurturing each other, needing each other.