Tag: Seizures

Early-Mid-Life Inventory

Marta Drew6 Comments

 

Marta b&w apple orchard 2006

 

Early-Mid-Life Inventory for Marta Drew in her 43rd Year
(Wait … 44th year? If I’m 43, aren’t I in my 44th? I don’t know—shut up)

 

Math competency compared to first year of junior high:
unchanged

 

Amount of life spent living in hometown:
approximately half

 

Current social status in said hometown:
Unapologetic Teardown Asshole

 

Garrison Keillor sightings within the last ten days:
one

 

Garrison Keillor sightings within the last ten years:
one

 

Number of Meyers-Briggs personality type indicator tests I have taken since my early 20s, legitimate and otherwise:
countless

 

Meyers-Briggs personality type on every single one:
(I)ntroverted, i(N)tuitive, (F)eeling, (J)udging

 

Current self-improvement goal:
complete fundamental transformation into woman who remains gracious and benevolent even when absolutely everyone is being a dick

 

Progress towards this goal:
anywhere from 4-14 %, depending on how much sleep and ice cream I’ve had

 

Respect for 30-and-40-something women who really really want their children to be Cool Kids:
Zero

 

Favorite novel of all time, no matter what, after reading it at least seven times:
The Shipping News

 

Foods I will not eat, not ever ever, no matter how awkward it gets to refuse them:
tripe/liver/headcheese/haggis etc, bugs of any kind, anything slippery, tartare (raw beef with a raw egg? What kind of misanthrope dreamed THAT up?)

 

Primary vices:
judginess, hyper-sensitivity, meddling

 

Secondary vices:
excessive lecturing, negative thinking, intensity

 

Current investments:
local orthodontist’s office, summer camp, mittens, Legos

 

Number of cookbooks on my shelves devoted exclusively to the topic of baking bread:
at least 9

 

Last time I baked bread:
about a year ago

 

Primary sources of worry:
adolescent child’s fraught relationship with schoolwork, 2016 election circus, fate of Jon Snow

 

Careers I believe would be easier than being a Writer:
Supreme Court Judge, molecular biologist, NASA engineer, Governor of California

 

People I wish I were related to:
Chef Thomas Keller, Meryl Streep, Paul Simon, Mary Oliver, Annie Proulx

 

Temperature below which I feel forced to wear a winter coat:
20 degrees

 

Number of words written on Facebook between 2007 and 2015:
150,000

 

Feelings about that number:
complex

 

Preferred breakfast:
mocha and a morning bun from Honey & Rye or birthday cake (anyone’s)

 

Exit plan if Donald Trump should be elected to American Presidency:
maybe London, maybe Montreal, maybe a remote town in Iceland

 

Number of seizures middle child has had since her surgery seven years ago:
zero

 

Likelihood that she will have another one, according to experts at Mayo Clinic:
close to zero

 

Fear that every one of those experts is wrong:
less than five years ago, but still present in everyday life

 

Family member whose phone number has stayed the same for my entire life:
GramBea

 

Most common astrological signs among my friends:
Pisces, Taurus, Scorpio

 

Fictional characters to whom I am overly and inappropriately attached:
Daenerys Targaryen, Elizabeth Bennet, Severus Snape, Lady Brienne of Tarth, Bridget Jones, Peggy Hill, Tyrion Lannister, Diane Chambers, Mr. Darcy

 

Willingness to participate in any school carnival for any reason ever:
zero

 

Percentage of my children crying as we left the last one we attended:
100

 

Most firm beliefs:
God is real. Camp is good for kids even if they hate it. The worst mistake a woman can make is to dissolve into her family so completely that she forgets who she’s been trying to be all her life

 

Level of interest I have in anything the Kardashians do:
2-5%

 

Pantry items I tend to overstock:
canned tomatoes, Worcestershire sauce, honey, olive oil, vanilla beans, flour

 

Number of remaining grandparents:
1 (out of 4)

 

Number of remaining parents:
1 (out of 4)

 

Three things I love about my dad:
his devotion, his soulfulness, his willingness to consider any topic, no matter how esoteric

 

Three things I miss about my mom:
her musical voice, her gift for developing systems, her dauntlessness

 

Most efficient way to show me I matter to you:
remember

 

Average quality of close friends:
extraordinary

 

Belief that despite the shit, life is still mostly beautiful, hopeful, meaningful, magical:
strong, strong, strong

 

Perfection

Marta Drew11 Comments
f46eb-sunriseoverlakehubert
© 2015 Marta C Drew

I believe most of us understand by now — at least intellectually– that nobody is perfect. We know the brilliant fashion models-turned-artistic-city-revitalizing entrepreneurs with toned bodies and adorably-dressed-free-range-organically-fed children have problems too.  I know they do and anyway, I’m not comparing myself to them.

 

I’m comparing myself to a Super-Me, an Extreme Makeover Me, the one I would certainly be if I weren’t so lazy/superior/judgy/emotional.  The one I invent while I’m not exercising and not writing and not cleaning the house and not earning a paycheck and not making dinner and not staying on top of the laundry and not being on the PTO and not dressing particularly well and not keeping up on the news and not washing my hair all that often and not kicking my VERY serious Candy Crush Saga habit and not being at all chill.

 

Even if I could pull off the transformation and be the exact opposite of everything I berate myself for, I still wouldn’t be Perfect. You know how when they take the sugar out of food, they just add more salt or fat to compensate? We humans are the same way — subtract one set of  flaws and another set replaces it. We remain imperfect.  Take away my laziness for a while (not forever — I need it to be creative) and judgy fills in the empty spaces. Take away superior and I just get more emotional. I remain imperfect.

 

We humans are the same way — subtract one set of  flaws and another set replaces it. We remain imperfect.

 

Perfection is not possible in me. I have to accept that because even if I could somehow become a balanced Marion Cotillard lookalike with NASA-grade math skills and an understanding of how football works (I’m pretty sure I can’t), I would lose more than all my bad habits. I would lose my essential self, the self God Himself wrote for me before I got here. Perfect isn’t something we can be in this life …we aren’t even qualified to define it.

 

I don’t have perfection in my character, but I do have it in my life. Once in a while, when I stop peering at my sorry self in the mirror and gaze instead out at my singular, mysterious life, I see perfection — not everywhere and not all the time, but enough to believe it’s really there.

 

When I was a teenager and spending my fifth or sixth summer at Camp Lake Hubert,  I was allowed to swim with the horses one time off of Senior Beach. I still don’t have any idea why I was given that opportunity– I had virtually no experience with horses, either at camp or anywhere else.  I was nervous being at the mercy of such an enormous, powerful animal, I felt out of control without a saddle or reins and I’m sure I wanted to cry. Maybe I did cry; I have always hated being inexperienced. Yet whenever I read stories about characters who can fly, I remember half-riding, half-floating on that horse’s back, holding his long neck as he galloped in slow motion through the water. I bet he thought he was dreaming. We both could have been dreaming. That was perfection.

 

When my oldest daughter was two years old, she started having seizures after her bath one December night. In the first of what would be several methods to try and stop them, she had a massive steroid shot every evening –right thigh the first night, left the second, then right, then left, alternating this way seven days a week for twelve weeks.

 

I held her on my lap, my husband did the shot, her brother (five years old) blew bubbles in a noble effort to distract her, her baby sister sat in her bouncy seat with a furrowed brow, and most of us cried on most nights. The shots kind of worked some of the time.

 

When it was over, we popped Hershey’s kisses in each other’s mouths and piled on the couch with the lights off and the fire on, watching recordings of “Rudolph the Red-Nosed Reindeer” or “Frosty the Snowman”  on t.v. That was also perfection.

 

Perfection, in my view, is something given, not achieved — a divine reassurance that there are still beautiful places, quiet and safe places we can find even within the chaos and brokenness of our human experience.

 

Once, sometimes twice a year, my dear friend Julie and I drive up to her cabin without our husbands and kids for a weekend. Sometimes we talk the whole time, sometimes we barely say a word to each other. There have been weekends when we cooked ourselves delicious breakfasts and dinners and weekends when we subsisted solely on jellybeans and popcorn. There was an “America’s Next Top Model” marathon weekend and one devoted almost exclusively to knitting, a writing therapy weekend for me and a reading therapy weekend for her. Sometimes we speak only in Eastern-European accents and sometimes we switch from Marilyn Monroe to Hermione Granger to Julia Child. Julie allows me my tears and I allow Julie her inexplicable silences. Those weekends are perfection.

 

Perfection, in my view, is something given, not achieved — a divine reassurance that there are still beautiful places, quiet and safe places we can find even within the chaos and brokenness of our human experience. When I slow down and calm down enough to inhabit one of those places, God is waiting there. He puts His hand on my shoulder and whispers “I am still here, swimming with you, grieving with you, sending you my best love in the form of family and friends. Just so you know.”

 

I do know. Take out my need to be perfect and Perfection fills in all the empty spaces.

 

Lake Hubert dock 2013
© 2015 Marta C Drew

 

 

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.

 

House and Home

Marta Drew5 Comments
IMG_6562

 

You hear a lot about what it takes to turn a house into a home; I’m trying to turn my home back into a house. Turns out everyone buying a house these days expects to live in a Pottery Barn catalog.  So says my fashionable, market-savvy, trend-conscious, relentlessly positive real-estate advisory panel (you have to have one or you might as well give up before you start). The idea is to help the potential buyers envision the American-dream-meets-global-glamour lifestyle they will only enjoy if they choose your house. So no personal photos, no installations by your artist uncle who makes sculptures out of garbage. No baby-tooth-jewelry collection.

 

When the young couple tours your house, their expectations warped by evenings watching House Hunters and Property Brothers, you’re supposed to help them dream up a lovely, stylish existence for themselves. You do this by artfully positioning the furniture and accessories they will remember as part of the property but which will not, of course, be sold with the house. Think of the toys advertised during Scooby Doo and Superfriends on Saturday mornings. Only after you opened the box on your birthday or Christmas did you realize how few accessories came with the main thing, how much more you needed to fill in to enjoy the full effect.

 

Luckily, the Millennials have never watched commercials –they’ve all grown up with DVRs– so paradoxically, marketing tricks work particularly well on them. You want her to think this is where she’ll have quiet Winter moments sipping designer coffee by the fire, the children playing quietly nearby with educational wooden toys made by socially responsible companies in Scandinavia or Vermont. The fact that I have had not one quiet moment in the last five years of living here will not be a marketing focus. You want him to think this is the basement office where he’ll make his winning Fantasy football draft picks and/or develop his idea for vitamin-infused beer (go ahead and laugh –it’s gonna be huge).

 

You want her to think this is where she’ll have quiet Winter moments sipping designer coffee by the fire, the children playing quietly nearby with educational wooden toys made by socially responsible companies in Scandinavia or Vermont.

 

Whether or not either of them knows how to cook or bake (probably not –that’s what Trader Joe’s is for), a gourmet kitchen is crucial. Granite on the counter tops, stainless steel appliances, a pantry just large enough for a week’s worth of organic macaroni and cheese and a fridge that can hold plenty of kombucha. Good, good, they say to each other with their eyes behind the realtor’s back. They don’t want to live like that poor, broken couple they saw on HGTV who spent all their renovation money on mini-golf for the basement. Awful — they had had to live with a tacky kitchen for an extra six months while they talked their Boomer parents into another advance on their inheritance. Shudder…moving on.

 

This family room is just right for Superbowl parties and book club meetings. Superfun! What should she wear? Would he, theoretically, be allowed to smoke cigars with his buddies just ONCE in here if the Vikings ever won a Superbowl? No. That’s cool –still a good room.

 

We won’t tell her this, but the living room is where she’ll go to nurse her babies at 4:00 in the morning, snow spinning outside the windows, that feeling of being both essential and invisible, connected and alone filling up her rib cage. We can’t tell him that he needs to come down with her once in a while, lie on the couch with her, say nothing, just be with her so she doesn’t forget herself. There’s no room for that in the marketing brochure.

 

No matter how carefully we stage everything, they may sense somehow that our life here was less Pottery Barn catalog, more medical journal. They won’t know about our little daughter’s seizure disorder and subsequent brain surgery. They won’t know that the small boy who lived in this house blew bubbles for his little sister every night for ten weeks to distract her when she was getting mean steroid shots in her marshmallowy little thighs. They won’t know which room my cousin Kyle stayed in a month before he died and they won’t know my favorite spot for crying about how lonely a kid with special needs can make me feel sometimes. But I’m guessing they’ll sense that we lived a real life here. Good.

 

I will bring with me the hours I have spent snoozing like a cat in front of the gas fireplace, one or more of my children curled against me.

 

There’s no turning this home, where so much life has happened, both good and bad, back into just a house. I’m sure whoever buys this place will sense at least some of the loss, the fear and confusion and all that we did to try and love each other through it. Why hide what we tried to make here? We’re all –both the sellers and the buyers of this world– trying to make something beautiful with garbage, so why hide it? Do we really think they’ll be fooled? Even if they can be tricked into thinking we’re selling them nothing but a pretty, semi-stylish,  HGTV  lifestyle, don’t we want to teach them however we can that there’s nothing especially beautiful about that?

 

I do. I want to sell this house, so I’ll stage it, make it as fashionable and impressive as I can for their Superbowl parties and book club meetings. But if an echo of what our family survived here bounces gently off the freshly painted walls, I’m going to let it. If I’m going to tell the next young family a story about life in this house, then I insist on allowing both light and shadow into it. I insist on artistic integrity.

 

I have done almost everything the realtor and stager have told me to do –painted this and retiled that and moved this piece of furniture to that room and taken down all of the family photos. But we’ve left our mark on this house and it’s left its mark on us. I can’t really de-personalize it; it’s more up to the next owners to re-personalize it. And I can’t change it from a home to a house until I move out of it. Even then, it may take a while to really leave it.

 

That’s fine…it’s all fine. Most of the life I have lived here will come with me. I will bring with me my favorite Christmas Eve with Brian in the year Caroline was diagnosed when we listened to mix tapes we made for each other, drank Bailey’s and vanilla Haagen Dazs milkshakes, and assembled the girls’ play kitchen.  I will bring with me all of the rounds of “I love you more than…” that I’ve played with my Henry before bed at night and I will bring with me the hours I have spent snoozing like a cat in front of the gas fireplace, one or more of my children curled against me. None of that is for sale with the house –they’ll have to fill in what they need to get the full effect.